Long overdue

Gosh, I hardly know where to begin.  I've been wanting to update you for such a long time, but it's been an extremely difficult and traumatic few months.  Five months.  Gosh, it's five months since I last wrote here.  I can't possibly tell you all that has happened in that time in one post, so I shall just aim to cover the immediate period following my last post.

I started the betamethasone a few days after last posting here, while I was still in hospital so they could watch for any immediate difficulties, and we did a straight swap from 60mg prednisolone to 9mg betamethasone.  Thankfully the swap was uneventful and I was able to go home a day or two later.

It very quickly became apparent that I was absorbing the betamethasone very differently to the prednisolone.  The first noticeable difference was that I was bouncing with energy.  It was a false energy that I did know from previous very, very high doses of pred, but never to that extent.  I easily managed on four hours of sleep a night, and this was immediately after the admission when I knew that my body was actually exhausted and needed rest, but I couldn't.  I was bright and was eager to get on with a big declutter of my flat, starting with the bedroom.  Every day was filled with sorting through everything in my bedroom - in the desk, in the wardrobe, under the bed, in files I hadn't looked in for years.  I shredded years of old diaries, bank statements, old business paperwork; took bags upon bags of things to the tip; donated at least nine black bin bags full of things to the charity shop; cleaned the whole room to within an inch of its life; a friend ended up redecorating part of the room for me; I dismantled furniture and constructed new Ikea furniture; and then I started on the living room.

It was very hard work, but I had the energy so I got on with the decluttering while the energy lasted, because I knew that as the dose of betamethasone was weaned down the energy would begin to falter.  Of course the activity made me sweat, but I sweated excessively, even sitting shredding hundreds of pages of paper a few sheets at a time would soak my clothes through with sweat.  But whilst I was sweating, and sweating, and sweating my body was swelling, and swelling, and swelling with fluid. However much furosemide (diuretic) I took it did nothing to rid me of the excessive oedema, and I was/am on a huge dose of 120mg twice a day.

Then there was the hunger.  Of course, using a lot of energy with activity meant that I needed more energy in the form of food, but not that much more, and my hunger was excessive for the energy I was using.  I tried not to give in because I am already far too overweight and in desperate need of losing some, but it was incredibly difficult.  My hunger was never satisfied.  I could eat what I knew to be a normal-sized meal and I would feel as though I'd had a micro snack.  I could eat what I knew to be a big meal and I would feel as though I'd perhaps had a light spot of lunch.  It was awful to be permanently uncomfortable with hunger yet seeing the weight pile on, which combined with the excessive oedema to change my appearance significantly.

My face, my huge moon face, lost all definition.  My nose shrank into my ever growing cheeks, and my chin and jaw were lost to the depths of my neck.  This look is typical of someone on high dose steroids, and it is rightly named because the face becomes spherical like a full moon.  Yes, I have been moon faced for many years, but never to that extent, never to the extent where it felt like a facial disfigurement.  A whole body disfigurement with the extra weight and fluid too.

The disfigurement continued because my skin couldn't keep up with the rate at which it was needing to expand, and my whole torso, tops of my arms, and tops of my legs have become covered in huge, ugly striae.  These are essentially stretch marks, but they are so much more than stretch marks.  They are deep purple and red lines, some as wide as three or four centimetres, almost looking like huge lacerations snaking their way up my body and down the backs of my arms.  The skin is so thin that in places I can clearly see the fine veins below.  Sometimes they split and I bleed.  They happen quickly too, so quickly that I feel them happening - the fibres of my skin ripping apart, forever damaged, and now that I've lost a little of the weight again, the skin hangs limp, wrinkled, flaccid, separate from the tissue below so that I can pull it with my fingers like stretched chewing gum and just about see my fingers through the two layers of skin pressed together.



This is not me, but it may as well be.  This is what my torso looks like, except that the striae on the front of my body go all the way up to my breasts.  It is at least a disfigurement that I can mostly hide under clothes, except those at the tops of my arms and the top of my chest that often peak out from under my T-shirts.  Of course, there is no hiding them from a medic when I am examined, and although I warn them, and they are used to seeing such things, I still see the shock flicker across their face before professionalism hides it again.

I am told that over time the colour will fade, but I know that the skin will not, cannot, repair itself, and although they may become silvery, they will always be visible.

The plan was to try to reduce the betamethasone dose fairly quickly so that I could try to get to a more normal prednisolone-equivalent dose.  I was nervous about doing this because of so many failures of dose reduction with pred in the past, and the resultant life-threatening asthma attacks, but given the rapid destruction of my body I was willing to try.  In some ways this was made easier by the fact that each betamethasone tablet was a much smaller dose than each prednisolone tablet, so my lungs kind of didn't notice the reduction so acutely (although it also meant that to begin with I was taking eighteen betamethasone tablets each day!).

I thought that the quicker reduction in betamethasone dose would mean an equally rapid reduction in side effects, but in actuality, the only one that did subside as quickly was the false energy.  That was actually something of a relief, because while it was good to be living more in the same time zone as everyone else around me, I could feel that my body was, in reality, completely exhausted.  But one side effect that actually continued to increase was severe weakness in my thigh muscles in particular, but other muscles too.  I quickly became unable to stand from a chair without pushing off something, and if I ended up on the floor (as is the wont of someone like myself with POTS) then I was basically stuck until someone could help me up or I could somehow clamber onto my footstool and from there shuffle onto the sofa, where I would still have to brace myself for the huge effort and several attempts to get to standing again.

I went to my GP in the end, not really because I expected him to be able to do anything, but simply because the whole combination of all the symptoms, and their rapid progression, was getting to me.  I came away with an official diagnosis of Cushing's Syndrome. Of course, because I have been on such high doses of steroids for such a long time, and because I am aware of their many, many side effects, I have been known about Cushing's Syndrome for a lot of years.  I have known that I have exhibited many signs and features of it at various times to varying degrees over those years, but there was still something rather shocking about receiving the diagnosis.  One thing I have had particular difficulty with is the prognosis as fifty percent of people with untreated Cushing's Syndrome die within five years of diagnosis.  My CS cannot be treated as the only treatment is to remove the cause, which in my case would be to remove the steroids.  Remove the steroids I die either of an asthma attack or adrenal crisis, as my body is now dependent on the prescribed steroids because it can no longer produce any of its own.  I can only hope that I am in the other fifty percent.

Whilst all of this was going on with the explosion of betamethasone side effects and the additional diagnosis of Cushing's Syndrome, another problem was developing.  There was a supply 'issue' with the betamethasone at manufacturing level.  I had been given enough in my initial prescription to keep me going for quite a while, but before too long I needed another prescription.  My local pharmacy was able to honour the first three hundred tablets on that prescription, but that wasn't going to last me all that long, even though I was reducing the dose and therefore eking out the medication.  I managed to get in touch with my consultant's secretary and Dr H wrote a hospital prescription for me that he hoped would tide me over until my local pharmacy was able to source the rest of the meds they owed me.  The hospital out-patient pharmacy had some, but not enough, and they had to do some internal negotiations to borrow from the in-patient pharmacy so that prescription could be fulfilled.  They normally wouldn't be able to do this, but as the problem extended into community pharmacies as well then they made an exception.  However, this was not a problem that was going to be resolved in time for the next prescription, and before too long I found myself with only enough tablets to last about six more days and then I'd be without any steroids at all.  This wasn't an option.

I had been keeping J, my Complex Respiratory Disease Specialist Nurse, informed all the way through as the problem arose and progressed.  He liaised with my consultant, and the three of us ended up having a discussion about it in clinic, by which time I was about three days away from prescription crisis point.  Dr H had to come up with a new plan.

One thing had firmly been established - that I clearly hadn't been absorbing or utilising the prednisolone as I ought to have been, and that I clearly was absorbing or utilising the betamethasone very differently.  This added credence to  the hypothesis that not all steroids are equal, and I needed a different one.

Dr H decided, as I hoped he would, that it would be foolish to go back to a reliance on only prednisolone as it obviously wasn't working satisfactorily.  However, we also knew from the side effects that prednisolone had given me over the years that I had been absorbing at least some of it.  So Dr H started me back on 40mg prednisolone alongside an injection of 40mg IM triamcinolone every three weeks, with instructions to reduce the pred relatively quickly to 25mg.  I wasn't able to reduce it quite as quickly as Dr H had wanted me to, in part because my lungs did notice the reduction, though I did eventually get the dose down to 25mg, and then subsequently to 10mg.  Ideally he would like me to get to 5mg pred, but so many things have prevented further reduction for now.

The other reason I was unable to reduce the prednisolone down to 25mg as quickly as Dr H wanted me to was because I ruptured my Achilles tendon.  Most people get this injury through contact sports, or extreme adventures, or a vicious football tackle, or some other 'exciting' activity.  I did it by slowly walking from my living room to my bedroom.  I did nothing unusual.  I didn't trip.  I didn't fall.  I didn't stand on anything, though I did go back to the 'scene of the crime' to see if I'd trodden on something.  No, I simply stepped forward as normal and then crunch!  Sudden extreme pain, followed surprisingly quickly by relatively little pain, but I couldn't walk properly and it felt 'all wrong.'  Another trip to the GP and I came away with an 'urgent 24 hour referral' to an orthopod at the hospital.  Only this 'urgent 24 hour referral' took almost two weeks to come through.

It transpired that the betamethasone/Cushing's Syndrome has also weakened my tendons and ligaments, and the orthopod took literally two seconds to confirm the diagnosis of a spontaneously ruptured Achilles tendon.  Obviously with my lungs in the state that they are he was extremely reluctant to operate, so it is being treated conservatively - with a moon boot.  For the first two months I had a hard moon boot (like that shown in the link) to wear through the day, and a softer, lighter one to wear at night.  Since my check up in mid-October I have been able to stop wearing the night time boot, but I still have to wear the heavy, cumbersome one through the day when I'm up and about.  Only now I have a matching pair of moon boots, because the stress put on the left leg by the heavy, cumbersome moon boot on the right leg has caused the Achilles in the left leg to tear.  Thankfully it isn't a full rupture, but for the foreseeable future I have a pair of moon boots to go with my moon face and alien appearance of my torso.

This is far, far from all that has happened since I last posted, but it is enough for now.  I will return very soon with a continuation of the update, but as you have now read some of the traumas of the past few months you may be able to appreciate a little of why I have felt too overwhelmed to write about it.  Instead I have been living it and trying to muddle my way through.

Hard times

I'm struggling today, feeling very emotional. I'm physically exhausted and emotionally weary,  and I'm sick of being in hospital. It's not quite two weeks since I came in this time - though I've a way to go yet until I'm well enough to be discharged - but I had only been out of hospital for two weeks after a three week admission, and I never did get properly better between times. It takes its toll.

The week after I got out of hospital last time I had various blood tests done at the GP surgery, some of the results of which I'm still waiting. One result I did get was my haemoglobin (Hb) level, which was a surprisingly healthy 136, but since coming into hospital again this has fallen to an anaemic level of 95. This is quite a drop in a relatively short time, but not terribly surprising as, for some reason, I have had/been having a gastrointestinal bleed. There was one day last week - I think it was Thursday or Friday - when it was pretty bad and the doctor was quite concerned, but it has eased off now, so while it hasn't completely stopped it isn't as bad as it was. They had been thinking that I'd need an endoscopy or sigmoidoscopy as soon as I'm off the aminophylline, but today the doctor said that so long as there are no more bigger bleeds then it can probably wait until I'm back in Newcastle. That's fine by me, but the anaemia won't be helping my energy levels or my ability to cope emotionally.

For all that I'm away from home, it's good that I'm in Edinburgh and close to Mum and J. It makes a difference having them around. That said, I feel a long way from my friends in Newcastle and the support they give me. Yes, I'm in contact with them via Facebook and some of them text me or send me private messages through Facebook, but it's not the same. I know that Mum feels the pressure too, not that she in any way begrudges me the visits or the time, but she's not young any more and doesn't have the energy she used to. While I'm in here she's having to make all my food for me too because the hospital can't cater for me with all my allergies, and again she doesn't begrudge
me the time and effort, but it is a lot of work for her. I worry about her getting worn out.

Yes, today everything is getting on top of me and I just want to cry. Occasionally a few tears escape, but my lungs don't yet feel stable enough for me to really let go...then there's also the lack of privacy. I'm in a bay with three others. They're nice enough, but I don't really want an audience for my upset. I want to get out of here. I want some energy and some mental strength too. I want to be better.

Going back

Way back in September, when I was in hospital in Cambridge, it was found that my IgG levels were really low. IgG is immunoglobulin G and is to do with long-term immunity to infection, though is also a marker for other things. Not long before this I had been taking the drug methotrexate to try to get my dose of steroids down, but methotrexate is also an immunosuppressant (in high doses it it used to treat some forms of cancer), so while my low IgG were significant the doctors weren't overly concerned as it could have been a hangover from the methotrexate.  The medics at Addenbrooke's said to wait three months and then have my IgG levels checked again, by which time the methotrexate would be completely out of my system and we could be sure that it wasn't affecting the blood results.

During the three months between September and December I had a huge number of infections, mainly urinary tract infections (UTIs), but these are quite common in folk with diabetes and this time coincided with a worsening of my diabetes. For those three months I was almost constantly on antibiotics for UTIs, and extremely symptomatic of hyperglycaemia (high blood glucose levels), ending up in A&E on a number of occasions with very high BGs (blood glucose). My GP eventually referred me to the diabetes centre to gain better control of my diabetes again, and the diabetologist explained that steroid induced diabetes like mine almost always requires insulin injections for control. I was started on a low dose of a mix of fast acting and long acting insulin in early December, and over the next couple of months the specialist diabetes nurses titrated the dose, alongside the metformin tablets I take, so that we got fairly good control of my BGs. With improved BGs I also had fewer UTIs.

Shortly before Christmas I had those repeat blood tests done to check my IgG levels, obviously hoping they'd come back fine, but they didn't. My IgG levels were still very low so my GP contacted the haematology and immunology departments at the hospital for advice. Immunology wanted haematology to take the initial lead, and haematology suggested a wider screening of some of my other immunoglobulins. I had to wait a good couple of weeks for these results to come through, and in the end they didn't appear to be all that useful because haematology then requested a particular urine test be done to check for something (light chain proteins) that could indicate myeloma - an incurable blood cancer. As you can imagine, this was an anxious wait, but again not a very fruitful one. Yes, the result came back two weeks later as negative, but it then transpired that the urine test isn't very accurate and has a relatively high incidence of false negative results. Haematology requested another test for light chain proteins, this time in a blood test that is much more accurate. Another anxious two weeks passed by and I was eventually given the all clear for myeloma.

In light of the haematology tests, my GP contacted immunology again for their advice on my low IgG levels. They requested an official referral, which my GP promptly did and I quickly got an appointment through the post, although the appointment itself isn't until mud August! In the meantime they also requested my GP do some further blood tests to check my antibody levels for three specific infections - tetanus, pneumococcal, and haemophilus. In the past I have been immunised again both of the former and have had several haemophilus infections, so I ought to have antibodies for all three. We got the results two weeks after the tests were done and they showed antibodies only for tetanus. Immunology told my GP to revaccinate me against pneumococcal and haemophilus, wait five weeks and then check my antibody levels again. If the antibody cover is incomplete then this may well indicate an immunodeficiency disease.

I had the vaccinations seven weeks ago, and I've had the repeat blood tests to check my antibody levels again, but I am still waiting for those results. I'm not terribly hopeful that the vaccinations have taken because when I was in hospital in Newcastle just three weeks ago I was found to have an haemophilus infection.

Doctors now seem to think it is highly likely that I have an immunodeficiency disease, but of course it can't be confirmed until a) I get these blood results, and b) see the immunologist in August. In the meantime I have been getting lots of infections and 'reacting' badly to them, again suggesting the likelihood of an immunodeficiency disease, and it's been mooted that I may have had it all my life and it's contributed to my worsening asthma.

My doctors have all said that given my response to infection, and in light of my very low IgG, I ought to be seen urgently by the immunologist, but there is a national shortage of immunologists and the department is chock-a-block. I have tried, my complex lung disease nurse has tried, my GP has tried, my consultant has tried to get my appointment brought forward, but the department can't do so unless there is a cancellation, and in that instance it's first come first served - the patient/the patient's medical advocate has to contact them at the right time by luck rather than the department contacting those needing earlier appointments. I think this is simply because they are so busy, but it is far from ideal. My complex lung disease nurse (J) said to wait until I have the results of the revaccination antibody tests then contact him and he will try again for me at getting my August appointment brought forward.

I spoke to my GP on the phone last week about some other blood test results and he said he would phone me again in a week's time with the results of my revaccination antibody tests. I was expecting that call today, but it didn't come. I don't know if perhaps he was too busy, or if the results haven't come through. Perhaps he knows that I'm in hospital in Edinburgh at the moment so didn't want to bother me. I may contact the surgery tomorrow to find out. In many ways knowing the results at this stage of things doesn't change anything as no treatment will be given until I see the immunologist (and probably have a load more tests done too), but I still want to know. It feels very significant, especially on the back of these two hospital admissions in close succession due to asthma exacerbated by pneumonias initiated from colds. Both my mum and step-dad got this latest cold from me (sorry Mum and J), and they both said that for 'normal' people it was a very mild affair that was a slight annoyance for three days. I had four days in Intensive Care and I'm still on an aminophylline infusion with lots of wheeze.

Overwhelmed

Sometimes I want to write on my blog, but am too busy to give it the time it needs or I get distracted. Sometimes I need to write on my blog, but I get tangled up trying to work out how to write what I need to say instead of just sitting down and saying it. In recent months there has been so much to say that I've become overwhelmed by the enormity of it so have said nothing instead of everything. That makes for a redundant blog, which is not what I want. I want to write, and I want to write here. I want this place to be useful to others and to myself. The only way I can do that is to get to it and write, so please bear with me while I try to get back in gear.

I can't, at the moment, give a big update on all that I'd like, and it's probably best done in batches anyway. Right now I'm in hospital in Edinburgh, having come up to stay with Mum and J for Easter and it all going terribly wrong because I got a cold. I'm not in the best state of mind, feeling shocked and stunned at how ill I've been and how rapidly I deteriorated. I am overwhelmed by it, and kind of need to talk about it, but also don't quite know how to yet. I had only been out of hospital at home in Newcastle for two weeks and had come to Edinburgh for some recuperation. No chance of that with only one night at Mum's, so I began this fight for life with minimal reserves. Now I feel utterly depleted. Even the skin on the soles of my feet is exhausted, so while I try to get back to writing my blog as I want and need, please bear with me. It's near impossible to start a journey of a thousand miles even with a single step when it almost too much to think about putting your foot to the ground.

It's complicated

A while back I mentioned that I had been diagnosed with Impaired Glucose Tolerance (IGT), which is basically pre-diabetes.  The main blood test for diabetes has the not so catchy name of HbA1c, and basically measures the long-term (3 month) blood glucose level. This is in comparison to the finger-prick blood glucose level (BM) that is like a snap shot of what's going on at the precise moment that the test is done.  There are various different levels of HbA1c that classify whether or not someone is non-diabetic, pre-diabetic, or has diabetes.

When I was first diagnosed with IGT my HbA1c was at the lower end of the spectrum for pre-diabetes, but it rose within three months to the upper end.  During this time I was advised by my GP to check my BM at various times, but particularly when I felt unwell with my blood sugars.  By doing this I've quickly learnt how I feel when my BM is high, or at least high for me.

When I was in hospital in July/August there were a number of times when I felt my blood sugars were going high, and when they checked them they were indeed high.  At times they were the highest I've ever known them to be, and some of the staff (and myself) became concerned that perhaps I had crossed that threshold from pre-diabetes to diabetic.  A few of the other staff thought that perhaps my BMs were going high in response to being ill, and that things would settle again once I got home.  There seemed to be some confusion and some argument about what was the best way forward, with some wanting the diabetic team to get involved, whilst others didn't want to do anything.  To be honest, I felt very stuck in the middle without much of a say of what was to happen.  In the end the Diabetes Specialist Nurses (DSNs) were asked to come and see me, but for one reason or another they never actually materialised, and upon discharge one of the doctors said, 'You have a good GP.  Hopefully he'll be able to tie up these loose ends.'  It wasn't exactly ideal, but by then it was the only option I had, and the doctor was right - my GP is good.

I did as the doctor suggest and went to see my GP who suggested getting another HbA1c done.  Sure enough, when the results came back it showed that I am now diabetic.  I was expecting it, but for some reason it was still a lot to take in.  I had thought that it might be a relief finally to know for sure, but it wasn't.  However, I did think that now I had the diagnosis of diabetes then some action might be taken, that I might have access to helpful services that I couldn't use when I 'just' had IGT.  It's true that I have seen the practice nurse with a special interest in diabetes at the GP surgery, and she has referred me to the podiatrist and specialist optician, and that I will be going on a DESMOND course (an education course for those recently diagnosed with diabetes).  However, the earliest DESMOND course there are spaces for, and on which I'm booked, isn't until the middle of November, I won't get an appointment with the specialist optician until April, I haven't heard anything about the podiatrist, and although the GP practice nurse is lovely, she confessed that she doesn't know much about steroid-induced diabetes.  Oh yes, that's the thing, the general consensus is that this isn't 'straight-forward' Type 2 diabetes, but steroid-induced diabetes.  This isn't surprising given that I've been on long-term high-dose steroids for sixteen years ... in fact, it's more surprising that I haven't developed diabetes before now.

I hate steroids.  I can't live without them, but they are wrecking my body.  I've piled on the weight since I started on prednisolone; I've had cataracts in both eyes; it's reducing my bone density and making my vertebrae crumble; it's most likely contributed to the depression that I've suffered for years; it's probably to blame for the peptic ulcers I've had; it's reduced my immunity so I pick up infections easily; it may well contribute to the terrible water retention that I get; and many other minor side-effects that I have from it.  The trouble is that if I don't take the steroids I can't breathe.  Even trying to reduce them a little causes my lungs to start giving up, and I invariably end up really poorly, so I have no choice but to take the meds and take the side-effects too.

There are one or two medications, generally immunosuppressants, that can be taken to help reduce steroid doses - steroid sparing agents.  One such medication is methotrexate, which in large doses is used in chemotherapy, but in smaller doses is sometimes used in rheumatoid arthritis or severe psoriasis.  In a very few instances, in those dependant on steroids, it can be used in those with severe asthma.  I have been on methotrexate before, several years ago, but after about a year and only getting my prednisolone down to 30mg, my consultant didn't think the risks were out-weighing the limited benefits.  Like prednisolone, and most medications, methotrexate has some hard-core potential side-effects, such as pneumonitis/lung fibrosis and liver damage.

Given my recent diabetes diagnosis, my asthma consultant has been keen for me to start methotrexate again.  This is a big turn around from the stance he took last time when he didn't really want me to start methotrexate in the first place, but was eventually willing to try.  This time we discussed the options, and I soon came to realise that I don't actually have any option but to give it a go.  There is no other way to try to reduce the prednisolone, and seeing as the prednisolone is almost definitely making the diabetes worse, I have to try the methotrexate.

I took the first dose of methotrexate just over two weeks ago (it's a once a week medication), and then, because of the potential it has to damage the liver and cause other problems, I had to have bloods done just over a week later.  Nausea is a common side-effect of methotrexate, particularly at the beginning of treatment, and indeed I did feel very sick.  I passed it off at first as something I'd just have to put up with, but then I started vomiting and couldn't keep any of my other meds down, so I ended up having to see my GP.  She was concerned about the potential for liver damage, one of the symptoms of which is nausea and vomiting, so she advised that I didn't take the next dose of methotrexate until we got my blood test results back.  She phoned me a few days later when she got the results, by which time I'd a couple of days of feeling a bit better because I'd missed the next dose of methotrexate.  The upshot of the call was that the results show my liver isn't in great shape.  It's not awful, but some of my liver results were out of normal range, so then my GP didn't want me to take the next dose of the meds until I'd spoken to my consultant.  So many phone calls later trying to get through to my asthma consultant, I eventually got to speak to him and explain all.  He said that he understood my GP's concern, and yes, my liver results weren't great, but given how much prednisolone is wrecking my body, methotrexate is my only chance to try to get the dose down.  I was to take the next dose of methotrexate and have my bloods done again in a week, so I did as instructed and I have to go for my next lot of blood tests in the morning.  I'll be taking the third dose of methotrexate before I go.  Each time I take the meds it feels like I'm putting something really dangerous into my body - something that's going to damage me further.  I know it's my only option.  I know that a lot of people take methotrexate without problems.  It's still not easy taking the meds, even if they are the only thing that might help with the diabetes at the moment.

The saying 'stuck between a rock and a hard place' feels very appropriate with all of this.  Maybe especially so while I'm still on the high-dose prednisolone and we're titrating the methotrexate dose upwards, so I have the potential side-effects of both medications concurrently.  I have to say, these aren't things that I ever thought I'd be having to consider or deal with just because of asthma.  You never really imagine that one disease can lead directly to another simply because of the medication you have to take, and that those medications can have such a damaging effect on the body as well as saving your life.  So confusing.  So complicated.

Getting back to it

Well hello there, folks!  Even the most unobservant of you will have noticed that it's a very long time indeed since I last posted, but now it's time that I got back to it, back to you.

It's been a difficult five months or so since my last blog post with two bouts of pneumonia (I told you there was no such thing as a simple cold for a severe asthmatic!); time in hospital; the death of a very long-standing and dear friend; the death of my beloved cat, Zach, who had been my loving (although crazy and psychotic) companion since he was four or five weeks old almost seventeen years ago; the diagnosis of Impaired Glucose Tolerance (IGT), or pre-diabetes, with a major contributory factor being the long-term high-dose oral steroids I take for my lungs; and still working through some of the stresses of last year, both in my own time and with my psychologist.

Is it any wonder I've needed a bit of space from writing about it all on my blog?

However, despite all of that there have been some good times and some good things in the last few months too.  In recent weeks, one of the things that has helped to bring back my smile has been my new little kitten, Isobel Artemis.  This photo was taken when she was just three to four weeks old and I went to meet her for the first time.

Isobel came to live with me on the day that she turned eight weeks old, and this photo is from her first evening with me.

As you can see, she'd grown a bit, but she was still so small (especially in comparison to the size my lovely Zach boy had been) that I kept looking at her and thinking, 'You're so small, you can't be real!'  She was quite unsure of her new surroundings for a couple of days, although she seemed to feel safe enough, judging by how relaxed she was first thing in the morning of her first full day...

She's now completely settled in, a complete delight, and totally nuts :o)  Her mother was half Bengal, which of course makes Isobel a quarter Bengal.  She has some of the traits, particularly being talkative with a variety of little chirrups as well as the more conventional meows and purrs; and she has just a couple of the Bengal spots on her side; but I wasn't sure how many of the other traits she'd have.  One thing Bengal cats are known for is a liking of water, and yesterday Isobel had her first encounter with water.  It was the middle of the afternoon and she decided it was cuddle time, which is lovely and usually not a problem, except that I happened to be in the bath at the time!  Despite having her feet already immersed in the bath water, she walked along my legs into deeper water (my legs were at a slight angle due to the bath lift I use), patted it with her paw as if gently attacking it, walked back up my legs, looked at me quizzically, leapt out of the bath, ran around the flat in crazy mode, scurried back into the bathroom, leapt back into the bath, missed her footing on me and got absolutely drenched.  She ended up very spiky, utterly bemused, extremely soggy, and yet wanting more.  I don't really want to end up sharing all my baths with the cat from now on - that would be weird! - but it was very amusing, and I have to say that she's incredibly silky soft today.

I could probably post photos of Isobel ad infinitum, but I'll restrain myself (for now) and tell you some more of the better things that have been going on for me in recent times.

So, at the end of April my mum turned seventy, shortly followed by my step-dad at the beginning of this month, so between the two birthdays we had a family week away in celebration.  Mum, J (step-dad), my brother M, his wife, N, and their children, O and D, and my brother C, his wife, S, and their son, J, hired a 'cottage' in Shropshire.  The 'cottage' was in the grounds of a manor house with several other 'cottages' (mostly far too big to be called cottages), and amongst other things a huge building that contained a large games room and banqueting hall.  We'd arrived on the Friday, and on the Sunday we had a big party for Mum and J in the banqueting hall with various other factions of the family coming to join us for the day.  Most of the folk who came to the party were from J's side of the family, and it was great to have a chance to meet some of them for the first time, some for the first time since Mum and J got married over twenty years ago, and to chat to others who I have seen more recently but haven't had the opportunity for a good catch-up.

There are always some tensions when families get together for prolonged periods, but on the whole I don't think we did too badly, and I did have a good time.  There were times when I felt a bit 'spare part-ish' and lonely, because I was the only one who didn't have someone else, and a couple of days when I ended up spending much of the day on my own while others went off in their family groups, but I tried to make the most of it, and did have some good times.  I also had some very enjoyable times with my brothers and their families during trips out, and I really valued the time to get to know my youngest nephew, J, a bit better.  I don't get to see him very much, so even at age three, he didn't really know who I was, but by the end of the week he was inviting me to his next birthday party ... in February next year.  I do hope I get to see him (and his parents, of course!) rather more now and we can have the kind of aunty-nephew relationship I have with O and D.

What else has been good?  Well, I've been learning to crochet.  In my review of the year at the end of last year, and I think also at the end of the previous year, I said that I wanted to learn to crochet.  I sort of learnt a little bit in 2012, but not at all confidently, and I couldn't do it with any accuracy without having someone who knew what they were doing to guide me.  Earlier this year my friend R was off work for a few weeks.  Early on in her recovery from the surgery she had I went to visit her and happened to mention that I wanted to learn to crochet, and much to my delight she said that she did to and we set up a plan to learn together.  I'd bought a book (A Little Course in Crochet) a few weeks before in anticipation of teaching myself and we decided to use it as our tutor.  We met up frequently during R's recuperation, working methodically through the book, and practising on our own between times.  We still haven't reached the end of the book, and R is now back at work, but I feel like I can call myself a crocheter.  I can actually make things, things with straight edges where they're meant to be straight, and with corners where there are meant to be corners.  I've made all sorts of things, albeit mainly those in the book, but that's the beauty of the book, because it teaches you a skill and then gives you a project to make using the skill it's just taught.  R and I don't meet now like we did, but I'm still crocheting, I think she is too, and we certainly plan to get together for more creative crocheting times.  It's so relaxing, and actually it really helped me after Zach died.

So having heard what has been, I guess I should say a little about what is.  Right at the moment my priority is trying to keep breathing.  The weather has been lovely recently with lots of sunshine, but the air has been thick with humidity - around 60% to 75% according to the Met Office - and that's been causing me problems.  That and the high pollen count.  As much as I love going out in the sunshine - and I really need to get the vitamin D given my osteomalacia - I've had to spend a fair amount of this lovely weather indoors, breathing the clearer air produced by the ventilation system in my flat.  Even then I've had some very troublesome days and nights with my breathing, and have generally been quite exhausted.  I've put my steroids back up from 45mg to 60mg, and have been having extra nebs, but I'm also thankfully due to see my asthma consultant on Thursday.  I don't expect him to have any magic answers or even the glimpse of any new treatment, but at least he'll know where things are up to.

To be honest, it hasn't been too much of a hardship having to be inside at home.  Sure, I'd love to be outside enjoying the sun and the warmth, but I've also spent lots of time with Isobel and have been taking great delight in her.  We've played a lot, had lots of cuddles, and she's been learning the word no when she's looked up at the curtains with rather too much interest ;o)

I think that I'd better sign off for now as it's getting late, but I'll be back a whole lot sooner than I was last time.

Lurgies

It's a brand new year, and just as it gets going I have a brand new lurgy.  It's a viral thing.  You might be thinking, as part of me does, 'So what? Almost everyone picks up some bug or other during the winter months,' and that's true, but the problem is that, for a brittle asthmatic like myself, there is no such thing as a simple infection.

At the moment I don't feel too bad most of the time - a little bit sniffly, the edge of a headache, a slight sore throat, etc - except that, aside from those niggly things, I also have scratchy lungs and a barking cough.  The cough is tiring and it's beginning to make my lungs ache, and the worry with that feeling is that it's all too common when an upper respiratory tract infection is making its way south to become a lower respiratory tract infection.  And the trouble with that is that it will set off the asthma.

For most, a cold or a bit of viral bug is annoying and bit miserable, but you know you'll be back to normal after ten days or so.  My worry is that this could land me in hospital.  In fact, I've all to often ended up in Intensive Care on a ventilator because I've picked up a 'simple' cold.  Of course, there's the possibility - albeit limited - that I might get over this without any drama, and that is exactly what I want to happen, of course.  But the other possibility scares me.  Having a bit of a viral infection scares me.  I know that it could all go horribly, horribly wrong, and that it could end up putting my life in danger.

Mum's still with me at the moment - still here from her stay for New Year.  I have the appointment for the MRI on my back/spine first thing in the morning, and she's coming with me to that, but then she and J are going back home to Scotland.  It shouldn't make much of a difference, seeing as I'm almost 40, but actually it does, because while they are here they can (and do) make sure that I'm okay.  That's not to say that I can't look after myself - of course I can - but everyone knows that it's easier to have someone help look after them when they're under the weather.  More significantly, should my lungs have a big splat while Mum is here then I know that she can easily summon help quickly.  It's not quite so straight forward when I'm on my own again - if I haven't got the breath to speak clearly to ambulance control; if I lose the ability to judge how ill I'm becoming (which does have a tendency to happen due to a build up of carbon dioxide in my blood when my lungs get bad); if I push myself that little bit too far in trying to maintain my independence, which might be as little as trying to walk through to the kitchen to make a cup of tea, or through to the bathroom to use the toilet.

Then there are night times, those dreaded times when lungs have a habit of deteriorating and GP surgeries are closed.  Now, in my cogent head I know that in an emergency I should call an ambulance, and that ambulances exist throughout the night as well as the daytime.  But the trouble, once again, is that muddled brain that I get when my lungs go into that dangerous slip, and I forget about ambulances.  I forget about other portals of help.  I worry that I will wake a friend from needed sleep, rather than thinking that they'd much rather be tired the next day having been woken by me to help me get the right help, than to later find out that I've died from an exacerbation of asthma.  My CO2-muddled brain worries about getting my health record info and my meds list up to date in the event that I might need to go to hospital, but it doesn't always register that I should be going to hospital there and then, rather than faffing around with paperwork.  My CO2-muddled brain thinks about making sure that there's everything in my hospital case that I need, not about getting to hospital itself.  My CO2-muddled brain is a dangerous brain to have, probably because it's in danger, and it's that CO2-muddled brain - the possibility of it - that scares me now.

Of course, of course, of course I know that it might not happen this time.  I hope to God that it doesn't, but I can't trust that it won't, and that uncertainty is frightening too.  And then there's the thought that it might all drag on, and I'll get more and more tired and weary, and then I won't have the energy to fight if I need to.  The possibility of a long, slow slip downwards is frightening.  The possibility of a long, hard fight at the end of that is even more frightening.

I have home antibiotics if I need them, but there's no point in taking them at the moment while it's almost certainly viral.  I won't take them unless I need them.  I'm keeping an eye of signs of an antibiotic-worthy infection, but so far there's none.  I just cough, and I feel the heaviness in the top of my chest, hear the gentle wheeze and the edge of an occasional crackle, feel the scratchiness in my throat, and take the meds I can to alleviate what is possible to alleviate.  No relief lasts long, but I'm thankful that at the moment I'm not in crisis, and I hope that it stays that way throughout.

All this from a bit of a lurgy.  It scares me, and I wonder how much people understand about why my fears are real, and why they're not an over-reaction to a 'simple' viral bug.  And I wonder how much people understand why, at times like this, living on my own is a frightening thing, and why it means quite so much that my mum's going home tomorrow.  Perhaps it shouldn't matter what others understand ... but for some reason it does.

Christmas and all that jazz

In case you haven't noticed, it's Christmas time.  Well, it's been Christmas and now we're in that limbo time between Christmas and New Year, during which I have done a whole lot of nothing.  It's been prescribed nothingness because I've got some collapsed vertebrae (i.e. compression fractures in the spine) in my lower spine.  It's another side effect of the long-term high-dose steroids I take for my lungs.

I first had back pain in August/September, but didn't think much of it.  Then a couple of weeks ago I suddenly had excruciating pain that was making my legs feel weird - kind of tingly and achy all at once - and some weakness in left leg.  I thought maybe I'd pulled something so waiting until the next day to go to my GP, thinking that maybe a good night's sleep would help.  Only I didn't get a good night's sleep, and half way through the next day I decided that I probably should see my doc.  When I did at last see him he sent me straight up to A&E, which was rather a surprise because I hadn't thought that back pain would warrant an A&E trip.  X-rays apparently showed vertebral wedging and compressed vertebrae, and the A&E doc decided that I needed to have an urgent MRI, though thankfully not so urgent that I needed to be kept in.  It turns out that a request for an urgent MRI can take several weeks, but I got my appointment through the other day, weirdly for next Sunday at stupid o'clock in the morning.

So I've spent the majority of the festive season flat on my back dosed up on Tramadol.  Unfortunately Tramadol and alcohol are a bad combination, so I've had to skip the meds on the days I've wanted a drink, like Christmas Day.  I don't usually drink much alcohol, but I have to say that I did make an exception this Christmas, although it was spread throughout the day.

Despite essentially having a broken back, I had a lovely Christmas Day.  I've usually gone to my mum's in Edinburgh for Christmas, but this year she and my step-dad spent it with one of my brothers and his family down south, so I went to my good friends R and M.  Just to be clear, I was invited; I didn't just turn up and say, 'Hi, I'm spending the day with you, and by the way, happy Christmas' ;o)  R and M picked me up around 11am, and as previously arranged, we were all in our Christmas pyjamas for a truly comfortable Christmas Day :o)  When we arrived back at R and M's it wasn't long before we got stuck in to the enormous spread of cheese and biscuits and wine.  Mmmmmmmmm cheese.....  I think it's fair to say that we stuffed ourselves.

Once we could move again, or rather, once R could move again - about six hours later - she started on the Christmas dinner.  As my main contribution to the shared meal, I'd bought the turkey, but R did amazing things to it (nothing weird!  Just tasty things like soaking it in brine and spices for 24 hours prior to cooking, as per a Nigella recipe) to make it exceptionally tasty and succulent.  Ahh, it was delicious!  Oh yeah, we had all the usual turkey trimmings too, but it was an hour and half later that any of us were able to squeeze in a slither of my mum's Becky-friendly Christmas cake.  In fact, it probably would have been longer if time hadn't been an issue, but my taxi was due at 11pm, so it was then or never (or more likely, Boxing Day), and seeing as we hadn't opened the Baileys it seemed rude not to wash down the cake with a large glass of the creamy stuff each :o) hic!

So that's an outline of my Christmas Day.  A very relaxing day with friendship, food, alcohol, presents (yes, we had a time of presents too, obviously), chat, laughs, Doctor Who, cheese, santa hats, pyjamas, fun, and lying around on the sofa.  Yes, I'm rather afraid that I hogged one of their sofas (sorry R and M), but I was only obeying doctors' orders, and neither or them seemed to mind ... or at least, they didn't say they minded...

Anyway, Christmas Day was lovely.

I've had a very, very quiet time since then, having done very little indeed.  I've needed it to be like that, if I'm honest, although it's also a bit lonesome at times, and definitely boring.  I've caught up on some of my TiVo recordings, cuddled the cat a lot, slept a lot (thanks to the Tramadol), read a bit, tried not to think too much about most of the year that has been (although I will be doing so in the next day or two for my annual Review of the Year), and enjoyed the Christmas decorations.

My mum and step-dad are coming down to stay for a few days over New Year.  R and M are coming on New Year's Eve too :o)  It'll be another cheese fest with wine, chat, and maybe some games, but generally low-key.  I'm looking forward to seeing Mum.  For all that I had an excellent Christmas Day, I did miss Mum too.  She and J were only going to stay until Friday, but since I got my MRI appointment for Sunday, Mum's offered to stay until after that and come to it with me :o)  We won't get any results then - they'll take two to three weeks to get back to my GP (oh, and they're checking for disc, nerve, and spinal cord involvement) - but it'll still be good to have her support.

It's still early days for my back - I'm told it will take two to three months to repair itself - but the rest/lying down does seem to be helping.  Having said that, I will go completely mad if I'm not able to get up and do things soon, and I'm pretty sure it would be good for my back muscles to start having to do some work before long ... wouldn't it?  It's surprising how little information I've been given about these sorts of things actually.  Hmm.  Oh well, I guess the doc will tell me more when I go for a check up the week after next.

Well for now I think it's time I peel myself off the sofa, feed the cat, and go to bed.  The Tramadol (and nefopam and paracetamol) has really messed with my sleep pattern, but I don't care much if it means that I sleep through some of the pain.



Oh, and my blogosphere new year's resolution will be to post more often.  I've been rubbish at it this year.  Sorry.  It's been tough.

Telling it as it is

Again, again, again, it's far too long since I last blogged, and again I apologise.  I've been wanting to blog since shortly after my last post, but there was something stopping me ... something I couldn't quite put in to words.  I've been thinking about this over the past few days as again I've had itchy fingers for blogging without actually putting fingers to keyboard.  It should have been obvious to me what this was about, but for some reason it wasn't until now.

Some of you will be aware that a couple of months back I had some trolls on my blog, and as much as I hate to admit it they got to me.  Coupled with the depression I've been battling even without the trolls, I've felt uneasy about sharing myself with the ether as I've previously done, but I've come to the conclusion that I can't let them win.  They are bullies and I can't let bullies win.  I can't even let them hurt me because they're not worth it - they're not worth that power.  So today I'm writing my blog.

Last time I wrote I said that things were improving in respect to the depression, and it's true that I'm not in the same place of crisis that I was earlier in the year, but over the past couple of weeks I've realised who unstable that improvement is.  It's not that I'm suicidal again (as I was earlier in the year), but I do still struggle.  Considerably.  A couple of things have happened in recent weeks that have shaken the weak foundations I was trying to build myself on, and consequently I've fallen.  I've seen my psychologist and again spent the session in tears, after a few sessions when I felt as though I could get my thoughts and feelings out without tears coming with them.  I'd got to a level where S thought that we should try making the sessions fortnightly instead of weekly, and I thought this might be manageable.  We tried it, and it was okay for a short time, but then at the end of last week's session S suggested she see me again this week because of my downward slip.  I was pleased to accept the increased frequency, even if it's only for a short time.  I know that for now I need that extra bit of support, but I don't like to suggest it myself because I know too that S's time is limited and in demand.

One of the things that's happened recently is that I've had yet another diagnosis added to my list.  I've been feeling unwell in a different way for a while so I went to my GP with some suspicions of the cause of the unwellness.  I thought I was developing diabetes, which is a common side effect corticosteroids, especially when you've been on them for a long time like I have.  I went through my symptoms with my GP, and as I had already been checking my blood sugars (BMs) some of the times I'd felt particularly unwell (I used to get low blood sugars for some reason so had a monitor from this time) I was able to tell the doc that BMs had been very erratic and often going up to between 11-13.  The GP said he was 90% sure that I was right, but wanted to do some other blood tests to confirm.  These were spread over about three weeks, so it was stressful time of kind of being in limbo - having a strong suspicion of diagnosis, but nothing actually confirmed, and no treatment when feeling so unwell.  Eventually the results came back and I was called back to the GP, and the results weren't quite what we were expecting.  In many ways this is a very good thing, but it's also confusing because I'd pretty much prepared myself for a diagnosis of diabetes.  The actual diagnosis that's been made is Impaired Glucose Tolerance (IGT) - basically pre-diabetes - but the perplexing thing is that with IGT I should not be symptomatic, and I am.

One of the gold-standard tests for diabetes is a blood test called HbA1c.  This measures the average blood glucose level over the previous three months, and for me this came back as borderline.  My GP is wondering if perhaps diabetes has developed relatively quickly so there's been a sudden increase in my blood glucose levels, but that because the HbA1c is an average then this has given a lower reading than it would if I'd been diabetic for the full three months.  Does that make sense?  So, the upshot is that I have to go for another HbA1c blood test at the end of January - exactly three months from first one.  However, the weirdness continues, because as well as the HbA1c I also had to have some fasting blood sugar tests (basically BMs done by the GP first thing in the morning before having anything to eat or drink), and these results were rather all over the place.  One was normal-low; one was normal-high; and one was high.  I am confused and my GP is confused.  I still have symptoms.  I still feel unwell, particularly with what I've come to term 'hyper-head' - a weird kind of feeling of pressure building up in my head, sort of a headache, but not quite a headache feeling, and it comes on when my BMs are high.  But even with hyper-head and other symptoms I'm not on any medication to alleviate any of it.  That's usual for IGT - not to have medication - except sometimes when it's steroid-induced, as mine is ... but then with IGT I shouldn't be symptomatic.

It may not sound like much really, but actually it's all been stressful, and the lack of anything to alleviate any of it is difficult because I can do nothing to make myself feel better.  The suggestion at this stage is diet control, which would be fine if there were much I could do to alter my diet, but I already eat a high fibre diet with wholegrain pasta, rice, and bread rather than the refined white stuff (I'm allergic to the white varieties, which is too complex to go in to here); I don't eat many refined sugar products; I don't/can't eat ready meals - all main meals are cooked from scratch by my carers - because of allergies, and that's also in accordance with a pre-diabetes diet.  I haven't yet found any major changes I can make to my diet to suit IGT other than to reduce the number of oranges or other high fructose fruits I consume.  Oh, and reduce the amount of fruit juice I have, not that I've drunk litres of it before now.

You know what's ridiculous about all this?  The cat (Zach) was diagnosed with diabetes in the summer.  When I got home from hospital in August I was really worried about him because he'd lost loads of weight and just didn't seem right.  I took him to the vet thinking that the problems with his kidneys may have returned/worsened, and actually that's what the vet initially thought.  She did some blood tests, and much to her surprise his kidney function was back in the normal range, but his blood sugar was high.  She did a test similar to the HbA1c, and after a half hour wait the results were back and diabetes was confirmed.  Zach was immediately started on insulin injections twice a day, initially on a low dose, but further tests a couple of weeks later showed the insulin had to be increased.  He's now a lot better, has his energy back, is back to running around the house, eating properly again, and loves to munch on people again too (this isn't something I enjoy, and try not to let him do it, but he's particularly 'characterful').  He'll have to go back for another full day of tests in a month's time - just before Christmas - to see how things are going with his bloods through the course of the day, but he's so much better.

When I first started to notice my own symptoms, I thought I was imagining it, or just had too much empathy with the cat, or something.  To be honest it was kind of a relief to have the doctor confirm that something was awry, but actually I'd much rather have nothing more be going wrong.

Is it petty that it's all been getting to me and contributing to my depression?  It some ways it feels it is; in others it seems reasonable.  I could just do with some time of no added stress, but it doesn't look like that's going to be any time soon, what with all this, various other big on-going stresses, and my lungs playing up.

I didn't really mean for this to be a moan, so apologies for that, but I guess this is me not being defeated by the bullies - I'm telling it how it is.

A little bit of a few things

I'm far too aware that it's far, far too long that I wrote a proper post, any post at all in fact, but particularly a proper one.  I haven't even finished showing you photos of my holiday, but it's even longer since I actually wrote anything.  Part of my absence is because I've been trying to gather myself.  This year has been tough, very tough, in many different ways.  I've shared some of the depression here, and some of the physical illness, and some of the other stresses, but there's been a fair bit that I haven't shared.  Some of it I can't talk about here, not yet anyway, but I think it's enough for the moment just to say that there's more going on behind the scenes than most are aware of.

I've needed a bit of space.  My holiday helped, but there's always a certain amount of post-holiday gathering that needs to be done to get one back in to the real world.  That can be tough when the real world has been tough.

I still have a fair amount going on - difficult things/situations  to deal with - but I'm slowly beginning to feel a bit more ... more me.  I think the start of term has helped somewhat, not that I'm a student these days, but choir (Flotsam) only runs through term time, and it just feels like there's generally a bit more structure around with other things going on.  Having said that, I did sign up for a short writing course at Newcastle University again.  It's actually a course - Memoir Writing -  that I did as a module towards my MA, but the short modules are open to the public too.  After not having my brain function in the right way for 'proper writing' almost all year, I was feeling closed up, blocked, trapped, and I thought that the short course might help to open things up again.  It did.  Six weeks of prompting, encouragement, recapping on technical aspects, etc really helped, and I wrote close to 10,000 words towards my book.  After almost a year of practically zero words, that's a huge improvement.  I hope I can keep up the momentum, but finding motivation for anything is still challenging at times.

One major difference between now and a few months ago is that I am able to look forward to things.  I was trying to keep putting things in the diary before, but mustering up a sense of excited anticipation for anything I would ordinary have looked forward to wasn't happening.  I'm a way up that hole now and can enjoy the anticipation of good things ahead.  Last weekend I went over to a friend's for chocolate fondue with a few others to help R celebrate her birthday.  I had a lovely evening with lovely people, lovely fondue, and a fun game of Apples to Apples, which I'd never heard of before.

On Tuesday a couple of us went to a local fireworks display.  Twenty to thirty minutes or so of colourful explosions filling the dark November sky really does help to blow dust from the brain - that and friendship :o)

Tomorrow afternoon I'm joining some friends for a workshop in glass work.  I'm not quite sure what it's going to involve, but I'm really looking forward to it.  The anticipation of fun with others, learning something new, something creative, making something, it's all good, and I love that I can enjoy the anticipation.

There's been some health stuff going on over the past couple of weeks.  I don't really want to discuss it at the moment because I don't have firm answers yet.  I've had various blood tests, and have another - hopefully the last for a while - on Monday, after which I'm hoping my GP will give me some of those answers.  When he does I'll tell you about it, but to be honest, I've been finding it all rather overwhelming lately and haven't wanted to think about it too much while I still don't have a truly confirmed diagnosis, even though the doctor is 90% certain of his preliminary diagnosis.

Part of the process of gathering myself has been evaluating where I'm at in a slightly more general way than just the immediate present.  For quite some time I've had ideas of possibilities for myself and my life, but they all ground to a halt when I got trapped in the great pit of depression.  In reality, the possibilities never really disappeared, but I was so far down the pit that I couldn't see the possibilities over the top of the hole.  I'm climbing out of that pit now, and every so often I get a little glimpse of things that are waiting at the top.  I've caught sight of one of those possibilities, and after failing to believe it for a while, I'm now thinking that maybe it could happen - maybe I'll get out of the pit, climb over the edge, and have those possibilities become realities.  I'm digging a foothold in to the edge of this hole to give me more of a grasp to the edge.  I'm trying to climb up and eventually out, and one of the things I've done that I'm hoping will get me out is arrange a meeting.  I have a meeting next week with one of the professors in the English department at Newcastle University to informally discuss the possibilities of doing a PhD in creative writing.  There are a lot of things around it to discuss, with funding being a major issue, and my health not being insignificant either, but it's something I want to do.  I do.  I really want to do it.  You know, even ten years ago I didn't think I was intelligent enough even to do an undergraduate degree, but I got a First class honours in my BA.  I actually started my post graduate studies during my last year of my undergraduate degree so got my Post Graduate Certificate in creative writing within a month of undergrad degree ceremony.  A year later I got my MA.  I want to go further.  I want to do a PhD, and not just for the sake of it, or to prove anything to myself or anyone else.  I want to do it because I love learning, I know what my proposal would be, I know what I want to get out of it, and there might be possibilities for me once I've done it.  The earliest I could possibly start would be next September, but I know too what I would do between now and then - the book that I've been working on for a while.  The meeting next Wednesday is one huge mass of possibilities, and the outcome of it could have a huge impact on the rest of my life, even though it's informal.

This, all of this, the possibility of a PhD, the love of education, what I get from writing, what I hope I give through writing, my music, my singing, my health, my creativity, my friends, my friendships, fireworks, games, fondue, and words, these are the things that help make up me.  These are my possibilities.  These are all important in rediscovering myself.  Gathering them all together again, back in to the pot of me, takes time because they've been spilled out and scattered in dark corners of the pit, but I'm finding them again, and I'm more hopeful that before too long I'll be standing at the top of that deep hole and shouting, 'Hello folks, I'm me again.'

Stability

Eight days after entering ITU I was recovered enough and stable enough to be moved to a ward, my usual ward at Freeman Hospital. I'd managed to wean down the BiPAP a fair bit, although I did still need it at night and for some periods in the day. I still had some abdominal pain, despite the appendicitis having been treated, and the surgeons were still wanting to do an investigative laparoscopy because scans had come back clear. They were still 'discussing' this option as I left the unit and their hospital, but I'm thankful to say that the medical doctors weren't going to risk putting me under an anaesthetic for anything at that time.

The ambulance trip between the hospitals was very uncomfortable, mostly because by this time I was terribly water-logged due to the right-sided heart failure. I'd been on a fluid balance chart (measuring how much fluid I take in and how much I pee out), so we knew that during each day of my admission I'd retained between 500 - 750 ml fluid. That's a lot! After 8 days that's somewhere around 6 litres! It felt like it. My torso, thighs, hips, and waste were incredibly swollen, even my arms were pudding-like. In fact the only part of my that wasn't blown up like a baloon was the lower half of my legs that had surgical stockings squeezing the fluid upwards. My skin was stretched to splitting point, and it felt as though it would tear if I moved and caught it on the bed sheet, so bumping around in the back if an ambulance was truly excrutiating, let alone with the additional mystery abdominal pain.

We arrived on the ward at long last, and I shuffled my pained, exhausted, and weary self into the bed. Not quite as delectably comfortable as the moving airbed mattress I'd had in ITU, but comfy enough, and more importantly I was with my usual care team - almost my friends; almost my second family.

I couldn't sleep. I've had a huge amount of stress recently, and the trauma of all that had immediately prior to, and during, the admission so far was filling my mind. But eventually I dozed, though only for three-quarters of an hour,  when I woke once again unable to breathe. I had nebs, and more nebs, and the doctor was called. She did blood gases, which weren't utterly dreadful, but they were far from good, so the BiPAP pressures were increased again, having only just begun to drop them a smidgeon earlier in the day. I wasn't quite back to square one, but I wasn't that far from it either, with my potassium levels destabilising again and my infection markers rising. I was back on BiPAP full time, unsure again if I was going to survive. I didn't know if I had the physical energy or mental strength to get through, to live, and part of me was questioning the futility of it - why fight to survive this when it will only strike again in the future if I do. Part of me did give up, maybe even died. My only option was to ask my friends to pray, and leave It for God to decide. I don't know why God makes the decisions He does, or how He got me through it, be He did in the end, and I'm still in the world. It's more than I expected.

Nearly four weeks since I was admitted and I'm still in hospital. Although the Freeman ITU Outreach Team were assessing me several times a day,  everyday, for about a week after my transfer, I've managed to stay on my usual ward, the only change being that soon after I arrived I was moved to a room right next to the nurses' station where they could more easily keep a very close eye on me. I've been off BiPAP now, after a slow wean, for a week I think, but then there was the reduction in aminophylline to get through, and with the fluid retention and heart failure, this was becoming a pressing concern. We know from experience that I have to do a very slow wean off the aminophylline or my lungs go off again and I'm back at the beginning. We had to take a risk this time, and although it was still slow in comparison to most, we had to go more quickly than we usually would. The sooner they could stop any extra fluids the better for my heart,  which still isn't it great shape. I'm told it could take some months for my heart to recover, even if/when the fluid reduces, and that this time is somewhat dependent on how well behaved or otherwise my lungs are during that period. Certainly this time I've been knocked well of course,  though that's not surprising given the complexity of the admission and the many complications along the way. I am incredibly weak, can barely walk at all, although last night I did begin to insist that I have help to walk through to the en suite toilet instead of using a commode. Regaining toilet rights is always a big step along the road to recovery, physically and emotionally. Everyday I have a short session with the physios, with one of them supporting me and the other following behind with a chair for when I'm about to pass out with the effort. I don't feel like I'm making much progress, if I'm honest, and I get really frustrated, but the physio tries to be encouraging and she keeps reminding me how poorly I've been. Part of my reclaiming of toilet rights is self-imposed physio, because I know that while it's really hard work and I'm pushing myself hard, it's only by doing the work that I'm going to get stronger.

The mystery of the abdominal pain in addition to that from the appendicitis still hasn't been solved. It's still very much there, being painful at a score of 5 or 6 out of 10, despite copious pain killers. There was a snuffle of excitement when I contracted another UTI because they thought that could be the cause, but the antibiotics did their thing, the infection was cleared, and the pain has remained. At the end of last week the consult suddenly decided that I should have an xray of my spine to check that I haven't developed a crushed vertebrae from the long-term high-dose steroids. He thought the pain could be referred to my abdomen by nerves, but the xray has shown that this is unlikely,  because while it does show some wear and tear of my spine, they've decided it's not yet signigicant or something to worry about (though personally, it doesn't fill me with joy to know my spine is worn and torn). Next up, I'm told, is the gynaecologist,  not that they have any specific concerns they want investigating,  but rather just to cover all bases. I've almost given up on finding an answer, and I'm very much feeling like a lab rat undergoing test after test after test. The consultant says he tries to he reassured by the clear scans and xrays, etc, but actually he is a bit concerned. He wants, if possible,  and for as long as possible, to 'keep things non-invasive', but says that it might in end up with investigative surgery. Maybe I'll see if it settles itself. Maybe I've had enough of being prodded and poked and tested and scanned. Yes, I most definitely want to be pain-free, but there aren't any guarantees that investigative surgery would find anything or fix anything, so then what?

Now I'm tired - physically drained and emotionally exhausted. I have a lot of pressing on-going matters and situations to deal with, and then there's the fall-out from having been so poorly for so long and with so many aspects to it. I was struggling with depression before this admission began, as you know, and the unexpected and atypical nature of it has compounded that. What I really want now is to get well enough to go home; cuddle the cat who I'm missing dreadfully; perhaps take the cat with me for a few days at my mum's; and go on holiday as planned at the end of the month. I want to recuperate, regenerate,  spend time with friends and family. I said to my psychologist on the phone the other day that I feel like I've lost myself somewhere - with all that's happened and still happening, I've left myself behind and I don't know where. I'd like to find where I am, go meet myself, and bring myself back to somewhere familiar. Good familiar. I can't do that while I'm still on hospital, so I need to get home as soon as is realistically possible, but as yet I still don't have a date for discharge.

Heart of the matter

I'd dozed. It hadn't felt like long, but on waking I couldn't breathe. My lungs had clamped shut. I rang the nurse call bell, she came, I gasped my need for a nebuliser, she said okay, and she left the room. I waited. I gasped. I waited. I rang the bell again. Still nothing. I could feel myself suffocating, and I knew that the staff here didn't know quite how quickly and dramatically my lungs could seize up. The bell rang on, and the nurses passed by the room busily trying to see to each of their patients, not deliberately ignoring me, but not having time to see that i was getting into trouble. I banged something on the table. I can't remember what, perhaps it was a spoon or a cup. It didn't matter, I just needed to make a noise, attract their attention, be given a nebuliser. She came again, surprised that I was gasping so hard after seemingly such a short period of time. I had a nebuliser, and then another, and I felt whoozy, and drifty, and drunk, and unwell.

Another nurse, concern splashed all over her face, trotting this way and that to get meds, get masks, get medics.

Time didn't exist. I have no idea how long this was happening, and I hardly felt like I existed, let alone the abstract of time.

Then doctors, several doctors, and a Sister from the ITU Outreach Team.
'Am I really that ill already?' I think, and close my eyes for a rest. I'd like them all to go away, let me sleep, nestle into the fog in my brain. The doctor wanted to do my blood gasses, and the Sister kept telling me to open my eyes, so I handed over my wrist and let myself be stabbed, too tired to feel any pain.

'She's well known to ITU,' says the Outreach Sister.  'Very severe and often brittle asthma.'

Please, just let me rest. You're all very noisy, I hurt, and I'm sick of being prodded and poked. But as I turn to my right to try to ease some of the pain in my tummy, the doctor leans over from my left and tells me my blood gasses are back and they're not good.

'What are they?' I gasp,
'7.5'
'No, my pCO2,' I correct,  thinking that he's telling me an alkaline pH.
'Yes, your pCO2 is 7.5. Your pH is 7.2.' Worry hangs around his words.
The information seeps in, nuzzling it's way through the brain fog, until it bumps into a small area of consciousness. 'Oh...' Oh, indeed. They are not good numbers. 7.5? My pCO2 is 7.5?! That's a bit of a worry. But I think it rather too rationally, and it's almost as though it's happening to a different me, a not-me.

And we're off! Someone is worried that I'm going to die. Suddenly I am too. I watch the corridors skid around me, hear voices running behind, and feet tapping quickly on the lino beside me. Places I recognise slip by and beyond, we take the lift to level three, they roll me through the empty third floor corridors in haste, following signs for 'Burns Unit','Theatres', 'Intensive Care Units.' A scoot to the left, through the controlled double doors with the swipe of a card, twisted around the bends in the vestibule, arriving in the unit, lain flat, slid on to the most comfortable bed in the world that moves underneath me and massages my tired and pained body. I cry. I am afraid. I don't want this, didn't expect this. I came here with a sore tummy, not my asthma. I should be able to breathe. What's happening?

The mask is strapped to my face, forever blowing air into me, keeping me breathing, bursting the bridge of my nose because it's a little too tight. The doctor takes my left wrist, tapes my hand to the bed frame with it resting over a bag of 0.9% saline, and guides a long wire into and up the artery in my wrist. It is secured in place, bloods are taken from the line, and my hand is released from the captivity of the bed frame, but the wire is left inside to perpetually measure my blood pressure. My readings blink in red and green and yellow on the screen above my bed.

At the same time, someone else has been fumbling with my other hand,  and arm, and foot, and at last they've managed to get another needle into a vein. I am hooked up to fluids and antibiotics, and my portacath is recharged with another infusion of aminophylline. I ask if I'm turning into a machine, which is how it feels with all these wires and lines and lights and bleeps. Someone chuckles a soft no, and a reminder that I'm ITU. Oh yes, I remember now.

Prods and pokes, and, 'Does this still hurt?' I scream out, 'Yes!' and try to move his hand away from my tummy, but he presses again just to make sure. I yelp, he stops, he apologises, and all too soon he and others will be back to do the same again. Appendicitis, that's what they say. They can't operate because 'she won't survive the anaesthetic with lungs like this.' The surgeons insist, the medical doctors deny them access. The surgeons tell me there's no research for survival of appendicitis treated solely with antibiotics - surgery always follows. The medical doctors tell me they have prescribed multiple antibiotics and hope. I pray.

And then I begin to quiver. A kind of shiver, but I'm not cold. I shake as if in fear, and I am afraid, but it doesn't account for this movement. It gets worse. It takes over my body. I squirm, and wriggle, and shake, and I can see, but I  can't make sense of what I can see. My arms wave, my legs jump, my torso twists and writhes, and I cannot stop. The world is static, two dimensional, like a drawing on cardboard. I move my eyes and the image swivels, but it doesn't really change until I blink,  and then I get the next two-dimensional cardboard drawing that doesn't really look like the world. I feel myself being held on the bed, writhing under the grip of multiple hands and bodies. Alarms chime, voices utter words that make no sense, my eyes find those of the consultant in front of me. He speaks clearly, I see his words leave his mouth, and I see his compassion when I tell him I'm scared.
'What's happening? Make it stop,' I plead.
'We will,' he reassures me, then turns to his junior and asks, 'What do we know?'
He perches on the end of the long bench at the nurses' station, which suddenly feels to me like it's in the wrong place. My world is spinning, and twisting, and jerking, and disorienting me while my uncontrollable body tries to fling itself from the bed.

They look to me, study my scans, read my notes, check my blood results, over and over. The consultant has become a detective sifting through evidence, piecing together tge crime that he is witnessing my body inflict on itself.

'Calcium! Her calcium is low, too low. Her potassium and sodium too. This is heart failure with tetany.'

The juniors look unsure, the nurse I think is afraid, and I am filled with terror, not because of the words that are being spoken, but purely because of the physical experience. I am hot, exhausted, can't breathe, desperate to rest, unable really to comprehend the sight of the world around me, and I have no control over my body at all. It insists on flailing around the bed, like someone with a severe brain injury. 'Make it stop. Help me, please! I'm scared.'

The consultant stands at the end of the bed, his junior comes to be by my side. One of the hands that is holding me in place shifts their grasp to take my hand, and keeps it as steady as possible while the junior doctor injects calcium into the needle in my knuckle. My hand stings, my thumb goes warm, and a great heat swells in the middle of my body. It spreads like liquid fire through my insides, up into my chest, across my ribs, and fills me up. The twisting, jerking, writhing spasms ease to become twitches and flutters. The world starts to redevelop it's third dimension, and those around me look more human. I know now what I am seeing, where I am, and feel released from the grip of a deep and physical fear. A few final flicks and I'm free. My calcium stores have been replenished, whilst my potassium and sodium levels are being restored with intravenous infusions. My heart is still failing, and it will for a while, but they are already hopeful that it can be reversed.

I am exhausted. My body has assaulted itself, beaten itself to a pulp, and my mind is battered. I'm in shock. I cannot take in all that has happened since I went to my GP with a pain in my tummy. But I don't have time to rest and consider because I still cannot breathe, I am still in pain, and I still need to concentrate to stay alive. And as I lie in the bed gasping for breath, with the BiPAP mask permanently strapped tight to my face, my body begins to swell with fluid that my heart is unable to pump around my body. I grow. I almost feel myself expand day by day, and as I grow my skin stretches, tightens, prepares to split open with the tension, and it hurts. The weight of the fluid building up around my waist, my hips, my tummy, my chest is heavy and makes breathing even more difficult. I am drowning in myself, I think I will probably die, I hate that I am alone amongst a crowd of strangers, and I shuffle myself away to a corner of my mind that thinks about tummies and asthma and breathing, but doesn't think too much about dying in isolation.

I close my eyes, and try to comprehend all that has happened. I think of the cat and wish he were curled up on the bed with me here. Behind the confines of the BiPAP mask, I clear a space in my head and create an open, green space of calm in which to be alone - an escape from the strangers around me, the machines punctiring the air with perpetual alarms, and the extreme presence of Death lurking in the folds of my bed sheets.

A long time

Again, again, it's another long time since I last posted, but this time it's because I'm in hospital.

I've had some horrid tummy pain for a few weeks now, which suddenly got much worse in the afternoon of 11th July. I tried to call my GP surgery to see if there was any chance of an appointment, but their phone line was down for some reason, so I trundled along on the off-chance that I might be able to see a doctor. The receptionist asked if it was an emergency, and although I wasn't altogether sure, I said that it probably was. I was told to take a seat and that I'd be seen after the booked appointments - what I expected.

While I waited the pain was getting worse and I was feeling more unwell so that by the time I saw the doctor an hour later I felt really quite rubbish. He examined me carefully but it didn't take huge observation skills to see that I was in a lot of pain, which Dr Cn said concerned him because, he said, 'I know you're no wimp.'

The doctor wasn't all together sure what the problem was, but suspected appendicitis with some symptoms being masked by my regular high dose steroids. He called an ambulance, requesting it be blue light, but somewhere along the way the message got confused and the ambulance took over an hour to get to me, by which time the surgery was meant to have been long closed.

When the ambulance arrived they got me on board and then ambled along to the hospital Emergency Admissions Unit (EAU), as the doctor had arranged. I was taken straight to a bed in one of the bays and then waited. And waited. And was refused pain killers because I hadn't seen a doctor so hadn't had any prescribed. And I waited,  and the nurses kept phoning the surgical docs to come to assess me and my ever worsening pain, and they kept not coming and I waited. I thought it would have been quicker to have gone along the corridor to A&E, and I still suspect it would have been because I waited four and a half hours before the surgical junior got to see me. Mind you, once she did at last get to me she stepped right up to the mark and I was quickly seen by her seniors several times. They were certain I had appendicitis and I was fairly quickly taken to a surgical ward, stopping on the way at CT for a scan.

Apparently they usually use an IV contrast dye to help show everything up on a CT scan, but they hadn't on this occasion because they were afraid I might be allergic to it. Unfortunately it meant that the scan was inconclusive and I'd have to wait until the following morning to see the consultant before any surgical decisions would be made. In the meantime I was prescribed IV antibiotics and a fentanyl PCA (Patient Controlled Analgesia). At last, some pain relief.

It was a long night with barely any rest, but the staff were nice enough and keen to keep me stable at the very least, so they checked on me regularly and told me to let them know if I needed anything.

Come the morning and I was exhausted,  having slept very little,  and quite frankly, the possibility of an enforced sleep during surgery,  as the consultant explained his plan to be, wasn't an entirely unwelcome prospect. It looked as though I would have an ultrasound scan and then have an investigative laparoscopy, with a probable appendectomy. I would spend a couple of days in ITU, probably on a ventilator, to make sure that my lungs were stable, then return to the surgical ward for a few days before being allowed home.

So there was a plan, and although I didn't relish the prospect of surgery, at least it would fix the problem. I relaxed a little. I fell asleep a while. I woke up, and I couldn't breathe.

The pit and the monster

I think I've said before how, some time ago, I came to the understanding that depression is a monster that tells you lies.  I've used this analogy a lot in my psychology sessions, and it's come to represent depression itself as a beast.  I've described the experience of depression probably as many others have done - like being in a deep pit.  Whilst it's quite an easy and obvious metaphor, it's also quite useful, because emerging from depression isn't usually (unlike my previous miraculous experience) a change that happens in an instant.  Rather, there is a slow recovery, a gradual relief that can be difficult to see happening whilst you're in the experience.  Using the analogy of the pit kind of gives a scale to the depression ... it means you can sort of describe how far down or up the pit you are; whether or not there are any signs of life in the soil or above the hole; whether or not you can see light at the top of the pit; how muddy the pit is and whether or not it's sucking you down further; and whether or not there's anything around that you can use to get out of the pit.  I also imagine that the vicious beast - monster - of depression lives at the bottom of the pit, and the closer I am to the bottom, the louder and more numerous are the lies it is telling me about myself.

I was talking with my psychologist again during the last session about where in the pit I see myself as being at the moment.  A couple of weeks ago, when I wrote Away with it, I/we thought that I was maybe half way up - things were still very difficult, but there was a bit of light at the top of the pit, and perhaps there was a worm (a sign of life) wiggling a little way out of a hole in the side of the pit.  Talking in the last session, I said that I felt that I'd sunk a bit.  I'm not on the bottom, like I was when at my worst point, but there was no sign of any worms for company, no signs of external life.

I often talk with my psychologist about the things that make me sink in to the pit, how I ended up there, etc, but my homework this week is to think about those things that have perhaps helped me to get off the bottom of the pit; the things that have helped me to ignore/challenge/not listen to the lies the monster tell me; the things that helped me to get as far up the pit as I managed to get before slipping back.  It was suggested that perhaps I might write my thoughts about these things on my blog, and before the end of the session I'd decided that yes, I'd write about it here because, after all, I've shared with my blog readers much of my depression experience.  This might take me a while because I haven't actually thought about it a great deal since my psychology session on Friday as my mum's been staying with me over the weekend.  What follows will very much be me thinking out loud, so if it doesn't make a great deal of sense, that's why.

So, Things that have helped me so far in surviving/recovering from depression:

1.  My psychologist and the sessions with her

S has been a constant for me during all of the distress.  I have felt able to talk to her about anything and everything, sharing my darkest and most frightening thoughts, the true extent of my desperation.  I've cried a thousand tears in front of her, broken down in uncontrollable sobs, and known that I've been safe to do so.  I've trusted S with the most vulnerable and broken pieces of myself and known that none of it would be turned around and used against me (this is in contrast to someone else in an on-going situation, so has been a very pertinent point, and a significant trust).  Unlike the multiple faces of the Crisis Assessment and Treatment Team (CATT), and the unreliable presence of the CPN, S has been there throughout without sessions being cancelled or postponed, and she is one person with whom I haven't continually had to relate the origins of my distress.  Yes, S has been, and remains, vital in this process of defeating the beast and finding a way out of the pit.

2.  Friends

I was terribly afraid of telling my friends that I was in the bottom of the pit and being devoured by the monster (and that's not how I put it to them when I did tell them).  I was afraid because of all that I'd put them through during my previous severe (and very long) depression.  I thought that maybe they'd be too afraid to stick around, not so much afraid of depression, but afraid of what depression has done to me before and how difficult that was for them to watch.  So I tried to keep it from them this time.  I tried to separate myself from them to pre-empt the pain I would feel if they couldn't cope with the depression again and opted to separate themselves from me.  It turned out that all of that was one of the lies that the monster was telling me and got me to believe, because when I did ultimately 'come clean' to them about how desperate I was, they held me in their friendship.  My close friends came to me, sat with me, and took gentle care of the pieces of me that they came across.  They still do.  They text, email, tweet, talk to me on FB, and come round to my flat.  They encourage me to do things with them, to go places, and when I'm not physically well enough to do that, they come round.  One of them has started tidying up my huge back yard for me so that it's a nice area for me to sit in or just to trundle through as my wheelchair access is at the back of the house.  They encourage me to go out with them, meet them in the park for a trundle.  They suggest that maybe they come over to bake cupcakes, just because it's a nice thing to do.  They take me to shops I didn't know about to buy games for my Wii.  One of them has sometimes phoned me in the middle of the night when she knows that I'm likely to be at me lowest, and she has talked with me for five hours, six hours, all through the night, during which time we've cried, we've laughed, we've done the whole spectrum of emotions and covered every subject imaginable and some you might not think about.  They 'keep me safe' in all my insecurities about seeing mutual acquaintances in group situations that terrify me simply because I haven't seen others for so long and I dread the question, 'How are you?'  One or two of those friends occasionally read my blog, and if those friends happen to read this I would like to say a sincere and heart-felt thank you.  You are so very precious, and I hardly dare believe that I deserve such wonderful friends.  Thank you.

3.  Music

I've written a little about playing the piano again, and spending hours immersed in playing the violin again.  I haven't been physically well enough to do any of that for several weeks now, but those were things I was doing when I was a little further up the pit than I currently am.  But they haven't been the only musical things I've been doing.  The choir I helped get up and running last year - Flotsam - is very important to me.  Since being ill with the pyelonephritis again I've been too poorly to go to choir and I've found that really difficult.  Choir gives me time with people (very important when I spend so much time on my own, unable to work, unable to get out much because of chronic ill-health) without having to interact too much with many if I'm feeling fragile.  Choir gives me a place to belong, somewhere I can be a part of something good, a place where I'm the same as everyone else because we are all singing.  Okay, so I can't be the same when they all stand to sing, but I'm kind of used to that, and it doesn't change the fact that I'm still singing just as they are.  Flotsam's choir master is a dear friend who has known me (and I've known, obviously) since I was thirteen.  He has seen me through some of the toughest times of my life, and even if I don't tell him any details, I always feel able to tell him if I'm not doing too well, and that has made Flotsam a very safe place to be.  Of course, music itself can have an emotional effect, as I'm sure most of you have experienced for yourself, and the music we sing in Flotsam tends to be either uplifting or soothing.  Music is also a part of me, something that has always been in my life, and has sometimes been my only way of expressing anything at all.  It allows me to connect with the world - something in the world - that nothing else quite reaches, and it has been a creative outlet for me at a time when I've felt extremely stunted in my ability to creatively express myself in writing.  It's not the same, but it helps.

4.  Mum

During most of my previous deep depression I was largely unable to talk to my mum about any of my feelings.  For various reasons I was angry with Mum, and I closed myself off from her.  It was kind of necessary at the time, but there's been an enormous amount of healing that has gone on between us and we now have a wonderful relationship.  Mum's support throughout this horrible time of depression has been invaluable and constant.  She's phoned me often, but not intrusively so, and during the calls I've been able to tell her a lot of how I've been ... yes, at times I've held back from telling her everything, but in the end - maybe a few weeks down the line - I've been able to share most of those things too.  Mum's been down to visit a few times, which has been very supportive, great company, and has provided much-needed TLC.  Of course, there was also my trip up north to stay with her and J that unfortunately culminated in a hospital admission with pyelonephritis.  Before I took ill, I was having a lovely, relaxed, gentle time with Mum and J, which felt nurturing and lightly refreshing.  It was bad luck that I got so poorly and didn't really get over it while I was away so that it came back almost full-on shortly after getting home.  The goodness gained by staying with Mum was largely erased, unfortunately, except that it helped me with number 5...

5.  Making some decisions

Out of necessity, I'm going to be quite vague here.  Firstly, there has been an on-going situation that has caused me a lot of distress.  I'm not currently at liberty to expand on this for various reasons, but time with Mum, talking with Mum, and several in-depth conversations with my psychologist about the situation have led to me reaching a decision.  I've yet to act on the decision made, but I'm working on it, and even coming to the conclusion that I have has helped.

There is another decision that I'm going to be equally vague about, but concerns something I've thought about a little in the past.  I mentioned it to Mum when I was with her in Edinburgh, and since then have thought about a great deal.  It's probably something for the long-view rather than to implement immediately, but I am beginning more detailed thinking about it, and have decided that I will most likely follow it through at some point.  I think it's a good decision to have made, but will take considerable work.  Anyway, enough of being vague.

6.  Getting out

I've been too unwell with the recurrent pyelonephritis since coming home from Edinburgh to go out much at all.  My days have been pain-filled and isolated as I've lain in bed or on the sofa trying to rest, trying to get/keep my temperature down, watching the clock for when the next antibiotic is due or pain killer can be taken, cuddling the cat whenever he's wanted and sometimes when he hasn't been too keen on it, watching daytime telly, and whiling away time on FaceBook.  Before that I was trying really hard to make sure that I got out at least once a day.  It might just have been to the shop, the park, a trundle around the local streets, or it might have been to town for some window shopping, or a wander along the quayside.  I was avoiding driving anywhere because my concentration was so poor that I didn't trust myself to be safe, which meant that I couldn't take myself off to the coast - a place I usually manage to find some solace.

7.  FaceBook

Okay, so this might sound strange to some, but I've found the contact with others through FaceBook valuable.  At my very worst, when I wasn't able to tell my friends how I was, I didn't go there - I found it very, very difficult to interact with anyone in case I let it slip how I was - but when I did tell folk what was happening, FaceBook helped a lot.  While I was isolated in my depression and by my difficulties in mixing effectively with others, I could roam around FB in the ethereal presence of others online.  I have wasted many, many hours playing Bejeweled Blitz (sic) and Scrabble, clicking on links to You Tube videos posted by others, reading every status update of everyone on my friends list, and looking at millions of pictures of cats.  To those of you who have never experienced depression and have busy, active lives may see all that time on FB as a total waste, but actually it's kept me connected to the world and reminded me of all people I know who are out there.  It's given me something to do, and 'somewhere' to be.


I'm finding it very difficult now to think of other things that have helped.  I'm sure there are more things, but I've been trying to write this list for three hours now and I'm brain-dead.  Perhaps more will come to mind in the coming days, but I have more 'homework' to do ... and it's difficult, so it may be a while until I get back to you.