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.

Relentless

I was discharged from hospital in Edinburgh on 9th April - earlier than I would have been had I been going home, but I went from RIE to my mum's and stayed with her and J for ten days. I'd have liked to stay longer, but I had to get home for various medical appointments - blood tests for immunology, blood tests for anaemia, an appointment with the GI surgeons, an appointment with my GP, an appointment with my psychologist...the list goes on.

I've had five or six weeks out of hospital, but then a week ago I woke up one morning and I was wheezing again. No warning, no apparent reason, no protracted relief from nebulisers. I persisted. I took things easy and didn't push myself. I kept a close eye on things. My lungs didn't ease up, and on Thursday I decided that I ought to get checked over by my GP. When I rang the surgery it turned out they were closing at midday for staff and doctor training, and it was already 11.40am (I'd had the gas man in changing my meter), so they had no appointments, but I mentioned to the new receptionist taking my call that my breathing wasn't very good and she said the doctor would call me. Five minutes later the lovely Dr T rang, said she could hear me wheezing, and that she would visit me at home. I tried to insist that I'd be okay to trundle to the surgery in my wheelchair, but the doctor said she'd much prefer to do a home visit. She knows me well. Dr T arrived within an hour, did a quick examination and assessment and said that she thought I needed to go to hospital, especially given that I was poorly enough to need a home visit. I applaud her stealth and sneakiness with that.

There were no beds on my usual ward at Freeman Hospital so I had no option but to go to A&E at RVI, and from there to the Emergency Admissions Unit (EAU). I was put in the monitoring bay - the part of EAU where the sickest patients go. It has a high turnover of patients with folk being moved in and out at all times of day and night. Lights are always being turned on and off as patients are attended to and tests are done. Monitors alarm constantly. Staff talk. Patients are ill. The patient who was next to me for twenty four hours shouted aggressive demands incessantly. I couldn't breathe and I was exhausted.

I came here on Thursday and it is now Sunday. I am still not breathing easily and I am utterly, utterly exhausted. At the insistence of one of the night shift nurses last night, who could see that the Monitoring Bay environment was doing me no good, I have been moved to a slightly quieter bay in the unit, thank goodness. But I am still exhausted. I am beyond exhausted.

It is only May and so far this year has been dreadful. This is my third hospital admission of the year, each one a battle for breath. No time to recover properly between admissions, and I'm done in. I can't keep doing this. I don't want to die, but I can't keep on like this either. I don't know what the answer is, and this isn't about feeling sorry for myself. I just don't have the strength, stamina, and energy any more to 'live' like this. I've run out of me.

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.

End times

Dad died the day after I wrote my last post. I asked the doctor if I there was any chance that I could go and say a last goodbye, but I wasn't well enough or stable enough. I know the consultant was right, but it's still impossibly difficult that I didn't get to say goodbye.

The last time I saw Dad was a couple of days before I came into hospital, although up until then I had been visiting him every day. I got a virus and didn't want to risk giving it to Dad so I stayed away, but when I last saw him I'd fully expected to see him again. Alive. I didn't know that the seemingly innocuous sore throat that I woke up with on the Tuesday was suddenly going to turn on me and have me almost dead by Thursday.

I woke up confused, not knowing whether to see a doctor or not, so I put it off so as not to be a nuisance. My mum phoned me in the afternoon, said I sounded awful, and I told her my dilemma. She said that if I was in doubt about whether or not to see a doctor then I needed to see a doctor - "That is the rule," she said.  So I rang the surgery, apologising for calling late in the day (3.10pm) when I knew it was unlikely they'd have any appointments.  Much to my surprise I was given one for twenty minutes later.

I waited fifteen minutes beyond my appointment time before being called through to the doctor, but almost as soon as he saw me he was calling for an eight-minute, blue light ambulance. In my confusion I was surprised. It frightens me that I am so poor at realising how ill I am, however many times it happens.

The paramedics ignored my calm demeanour and misleading numbers, correctly reading the calm as a sign of a life-threatening asthma attack, and the numbers as a tiring asthmatic who is too used to the scenario and is on medication that affects some of those numbers. They bundled me into the ambulance, miraculously got a cannula into a vein in my arm, and gave me hydrocortisone, adrenaline,  chlorphenamine, and several nebulisers. They strapped me firmly onto the stretcher, then tossed us through the streets with flashing lights, screeching sirens, and blaring horns. The journey to the city centre hospital took no more than five minutes, during which time the paramedic called ambulance control to give the A&E department warning of our imminent arrival.

I was taken straight into resus, where I was greeted by the waiting doctors and nurses, and was there only minutes before the ITU team were being called. An aminophylline infusion was started, blood gases were done, bloods were taken, an x-ray was done, the anaesthetist arrived, they all hoped the aminophylline would start to work quickly, but it never does. It works, but with me it takes a while, a long while. Hours. Time wasn't on my side and I was taken to HDU, but only in passing, because as soon as the anaesthetist consultant saw me he had me moved to Intensive Care.

I spent a week in ITU on BiPAP, all the while receiving texts about my dad's decline. The nurses rang the home for me to enquire how Dad was, but they never told us anything useful, and the real information came from Dad's wife - the news that his respiratory nerves had started to fail, he was breathless and distressed, time was running short. I was useless. I was struggling myself to keep breathing, and I couldn't be with him when I wanted to be.

I was moved to my usual ward, teansferred by ambulance from the hospital in the city centre to the one in the outskirts. Moved to the ward that is my second home and the staff are like family and friends. I was closer to Dad than I had been, but I still may as well have been a million miles from him. I so desperately wanted to be with him, to hold his hand, to say goodbye, to see him one last time, to see him as I had expected. It didn't happen.

At 12.25pm in the afternoon of Sunday 22nd February I received a call on my mobile, while I was lying in my hospital bed, to say that Dad had died just five minutes beforehand.

I hadn't been there. I hadn't been able to say goodbye. I hadn't been able to hold his hand. I hadn't been able to see him again as I'd been sure that I would. I still wasn't well myself.

More than a week later, I am still in hospital. My lungs are much better, but I am not coping terribly well with Dad's death, my own near-fatal asthma attack, my time in ITU, a whole host of emotions, and trying to think about Dad's funeral. I have a room on my own, and I'm ever so thankful for the privacy, but I still don't have the space to grieve. My day is dictated by the functioning of the ward, and all the while I'm here I'm watched. I need now to be home, except that I'm also fearful of going home, of the suddenness of my decline (again), and to be alone with my grief for the first time.

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.

Longer than expected

When I wrote my last post I fully intended to write again very soon, but for one reason or another I haven't been able to.  I've written my next post in my head several times, with it being different each time because of what's been going on at the time, but because of that I've also rather lost track of how long it is since I actually managed to post anything.  At last I'm here, albeit two and a half months since my last posting.

So what's been going on for me?  Well, it's been the summer and traditionally a time when folk go on holiday.  I haven't really been on holiday as such, but I have been up to Edinburgh to stay with my mum on two occasions, each time for about a week.  I've taken the kitten - Isobel Artemis - with me each time and she's had no problem with the car journeys or getting used to a different environment, and has really loved darting up and down the stairs at Mum's.  I don't have stairs in my flat, so Isobel's first encounter with stairs was at Mum's, and each time we've visited she's had great fun galloping up and down them, sounding like she's wearing boots.  She's five months old now, and although young for it, she was spayed last week, mostly because she's desperate to investigate the outside world, but I don't want to risk her getting pregnant.  She's healing well, and hasn't had any problems at all, which has been a huge relief because I was worried that she was a little too young, even though the vet said she'd be fine because she's quite 'long for her age'.  I am completely besotted with Isobel and she's giving me so much pleasure and delight.

At the middle of July/beginning of August I spent two weeks in hospital with my asthma.  I'd had a brilliant couple of days down in London for the Monty Python show and then drove back home on the Thursday.  I wanted to be back home in time for choir as it was the last Flotsam rehearsal before the summer break and we were singing at the wedding of a couple of choir members at the end of August.  In the end I decided to go straight to Flotsam so that I didn't have that post-drive slump at home and have to go out again almost straight away, but then as I was approaching Gateshead I realised that I was going to arrive a bit too soon so I decided to stop at the Angel of the North.  I was absolutely fine when I arrived and when I got out of the car, and fine when I got the wheelchair out of the car and had a little trundle around, but very quickly and suddenly I became extremely ill.  I couldn't breathe and my chest felt incredibly tight.  I got out my nebuliser and started to use it, but I could feel myself going - the world was going black and I was about to pass out.  I knew that if I passed out then I would die.  I could see an elderly man sitting on a nearby bench, watching me, looking concerned, but he didn't approach me or ask if I needed help, and then he started to disappear into the encroaching blackness.  Just as I was resigning myself to dying under the gaze of an angel, the drugs in my nebuliser started to kick in, the blackness started to dissipate, and my breathing started to ease.  For the first time ever I went from being absolutely fine to incredibly ill to fairly okay again in one 'sitting.'  It was a huge relief, but also very confusing because I didn't know how to deal with this new situation - would I continue to be okay?  Should I go to hospital?  Would I be alright if I went home?

When I got back in the car I looked in the mirror and could see that I was far from being the right colour, but my breathing did feel a lot better than they had done and I thought I was probably okay to drive ... although, in retrospect, I probably ought not to have done.  I had been very scared by what had just happened and was feeling rather shocked by it, all of which probably contributed to my decision to leave getting checked out until the next day.  In the meantime I decided that I would go to choir as planned because it was probably safer for me to be with people in the immediate aftermath of this than to go home and be alone all evening.

It took a long time - a good couple of hours - for me to get back to being the right colour, and during choir I was sweating a great deal and not feeling well, although my breathing remained okay given what had occurred on the way.  Perhaps because of the fear of the attack at the angel and being so close to passing out, I didn't tell anyone at the time quite how poorly I'd been (it would be like admitting it to myself), but I did go straight home afterwards rather than join others in the pub for an end of term drink.  And when I got home I was exhausted.

I had every intention of phoning my GP the next day to get checked over, and I set my alarm to wake me in time to phone for an appointment, but when morning arrived I was too tired to move.  I tried to wake up, but I couldn't.  My head didn't feel right.  In fact it hadn't felt right since I'd almost passed out in the asthma attack - it felt thick and heavy and I couldn't really think straight.  I went back to sleep, telling myself that I'd phone the doctor soon, but as the day progressed I wasn't able to stay awake long enough to make the call, and I was fumbling around doing my nebs practically in my sleep.  I don't know what happened to the day, but it disappeared, and the next thing I knew my carer for the day was calling my name from the hall.  I hadn't heard her ring the bell, knock on the door, or even phone me up, so she'd got the code for my keysafe and let herself in.  I managed to explain what had happened, but I still wasn't right, and she said that I seemed a bit confused.  I said that I wasn't, that I was just tired, but actually I think I was confused.  The carer stayed a while, made me a drink (I didn't want anything to eat), and phoned the office/on-call to tell them what had happened and how I was, and then she had to go.

I can't remember much about that weekend, except that my head didn't feel right and my lungs were slipping again.  My GP surgery is closed at weekends and I don't like A&E (plus, I didn't think I really needed to go to A&E) so I was hanging on for Monday.  When Monday morning arrived I managed to wake up to make the call to the surgery, got an appointment with one of the doctors, and went straight up to the surgery.  Part of me must have known that I'd end up in hospital because I had checked my hospital bag was ready, but part of me was still in denial, or maybe not thinking properly, so I didn't gather my meds together or take anything with me to the surgery.  The doctor was lovely, but clearly concerned so had me admitted to my usual ward at Freeman Hospital via an ambulance straight from the surgery.

At first the docs on the ward didn't do very much for me, but I could feel my lungs getting slowly tighter, and the nurses who know me well were concerned for me.  My consultant was off (his first sick leave in his whole career), and the registrar had opted to wait and see how things went with me before doing anything proactive, which was tiring and frustrating for me.  I didn't see the point of being in hospital if they weren't going to do anything different from what I could do and was doing at home, besides which I could feel my lungs getting slowly tighter and tighter.  The following day they agreed that the time had come to intervene and they put up the aminophylline infusion, which slowly, slowly did its thing and I started to get better, except that then the docs were too eager to get it down, despite my telling them that I need to be weaned off it very slowly.  It all went pear-shaped and I ended up back on it very soon after it'd first come down.  This time they kept it up until I was more stable, and as far as I remember it was up until after my consultant came back to work and could oversee the whole the process.  Eventually I was well enough to be free of the aminophylline infusion, and I could start to get some better rest before going home.

I was discharged two weeks after being admitted.  The general consensus was that there was most likely something at the Angel of the North to which I'm allergic - a pollen of some kind, probably - and that the confusion and headaches had been due to the lack of oxygen to my brain when I was so acutely unwell.  These seemed to get better with time and rest, although I was still extremely tired for about a week after I got home and did very, very little other than sleep or lie in bed for my first week home.

Since then my lungs have settled back into their usual state of unpredictability, but I've got back into life, taking each day as it comes.  I've been up to Edinburgh once since then and had some Mum TLC, which is always good for recovery from poorliness, and I've seen various friends at various times too, which help my spirits and remind me how lucky I am to have such lovely people in my life.

There have been a few other medical things going on throughout the summer and recent weeks too, but I'll post about them separately because otherwise it might be overload for both me and you.  Besides which, I've just noticed that it's almost 1.40am and I really ought to take myself to bed if I'm to have any chance of seeing any of tomorrow morning, which I'd like to do as I've been enjoying the sunny September weather.  So for now I'll bid you goodnight and I'll take Isobel for a cuddle in bed.

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.'

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.

Progress report

'Progress' isn't really the right term to use as there hasn't been much of it.  Since I came home I've had something of a relapse, and haven't been able to do very much at all.

Earlier in the week, when the fentanyl patch was due to be replaced I thought I'd see how I went without it, thinking that I won't know what progress I'm making if the patch is so effective as to eliminate my pain, or perhaps it's that the pain is no longer a problem.  In a matter of a few hours it became clear that pain was still a problem.  My kidneys were again thumping me in the back, and then I noticed some bladder pain on urinating.  I slapped another patch on and waited for it to take effect, but as the levels of fentanyl in my system had dropped during those few hours without a patch, I had to wait some time for the drug to kick in again.  The pain gradually lessened, but I was still utterly exhausted, and then my temperature started to rise again.

I knew there wasn't a lot of point in phoning the GP surgery to get an appointment to see a doctor as it was the middle of the afternoon, and it's usually fairly impossible to get an appointment if you phone any later that 8.50am.  I rang anyway, on the off-chance that there might be a cancellation, which there wasn't, but I went on the call-back list.  After putting the phone down it occurred to me that, even if I couldn't get to see a doctor that day, I really ought to speak to one as my temperature was back up to 38.7C.  I rang them back, explained to the receptionist that I'd been in hospital, and that things were now deteriorating again.  He suggested the on-call doctor phone me back at the end of surgery.  That was fine by me so I waited.

One of the very good things about my GP practice, isn't just that all the doctors and nurses are very good (and the reception staff/secretaries too), but they also give each patient what time they need, rather than insisting that each patient consultant must be a maximum of ten minutes.  Of course, the downside to this is that the doctors quite often run behind.  Many complain when they have to wait, but personally I don't mind, because I know it's down to the doctors putting the needs of each patient first.  But on this particular day last week it meant that the doctor didn't get to call me back until 6.25pm.

I explained again about having been in hospital with pyelonephritis and how, since being home, I'd had a resurgence of symptoms.  He said that given the history, it was probably safe to assume that the pyelonephritis was back/hadn't ever gone away properly, and said to resume the antibiotics.  The problem was that the surgery was officially closed, the pharmacy was due to close any moment, and I was too ill to get up to the surgery to collect the script anyway.  He asked if anyone would be able to collect the script for me, but I didn't think there would that evening.  However, someone may be able to the following day.  The doc told me to keep a close eye on my temperature and if it rose much more overnight I was to seek medical help, but otherwise he'd leave the prescription at reception for me to get in the morning.

I have a great friend, JM, who also happens to be a GP, though not at the surgery I'm at.  However, he knew I'd been ill and was struggling a fair bit at home.  Just as I put the phone down from my own GP, JM called me to say he was just leaving work and could he drop round on his way home to check me over.  Bless him.  He came, he wasn't too impressed with the bedraggled heap that lay before him on the sofa, and I told him of the conversation with my GP.

At 8.25 the following morning, JM rang my doorbell.  He'd left a specimen bottle with me the previous evening, suggesting that I drop a urine sample round at my GP surgery, and this morning he'd come round to collect it and take it to the the surgery for me (that's friendship!).  Having dropped off the sample, he then picked up the prescription my doc had left at reception for me, went to the pharmacy, and was back at my flat by 9.10am.  I downed the first of the antibiotics and took myself back to bed.

I was rather hoping that the antibiotics would do their stuff very quickly and that I'd soon be better, but it hasn't worked like that.  Four days in to this course of antibiotics and my temperature is still going up to 38.2C fairly regularly, and on Friday it was 38.9C.

I am completely wiped out.  I have no appetite, I feel nauseous when I do eat, and at random other times too.  I have been out to a couple of hospital appointments during the week, but have then been knocked for six and unable even to get dressed.  Each day, usually in the afternoon, I've eventually managed to scrape myself out of bed in order to slop myself over the sofa, where I've stayed till late evening when I've duly scraped myself off the sofa and slopped back on the bed.  Time is passing, but I don't feel as though I'm making much progress at all.

JM has been keeping in contact via text, and has dropped by several times either to see how I'm doing and to leave me some fresh milk, juice, and fruit (he is ever so good to me).  Today we had a brief text conversation and JM suggested I see my GP this week because the antibiotics really ought to have me feeling a lot better by now.  I might try to get an appointment tomorrow, or I might see if the doc will do another phone consult with me, which would save me from having to drag myself to the surgery while I feel so crappy.  I'll see.  I have the CPN coming round tomorrow afternoon, and that might be quite enough for one day.

I am absolutely fed up with this.  I'm sick of being poorly and being exhausted.  After so long with such terrible pain, it now gets to me if I even have just a little niggle - I just can't be bothered with it and don't have the patience for it.  Most of all, this prolonged physical illness with pyelonephritis is not helping my mental health in the least.  I don't have the strength, energy, mental or physical capacity to do anything that might be at all helpful in easing any of the depression symptoms, and the pyelonephritis itself actually makes me feel more depressed.

I just want to be better.  I want to be physically better, and I want not to have this horrible depression hanging over me.  So far, this year has be crap.

Difficult

Hmm, I'm supposing you've guessed that I'm having a difficult time at the moment, that I'm not really coping too well.  Not a lot has changed since I last posted, and I haven't updated till now because I haven't wanted to bore you with the same old stuff over and over ... I reckon once in a while is okay, though, right?  So here it is...

I saw the psychologist a week ago.  As has always been the case with her, she was good.  It's never easy, and it's hard to say with such things that they're ever good experiences, but I think I've been lucky to be allocated the psychologist I have.

I'm not going to say anything about the content of last week's therapy session, because that's between me and the psychologist, but what I will say is that I was honest with her.  I had to be, and really, what is the point of therapy if you're not going to be honest with the therapist?  The session actually went a little over time, which is very unusual for therapy, but such was the nature of the session and of my need.

Two hours after my appointment with the psychologist I was due to see my GP, and by the time I got there my psychologist had already phoned the doctor to express her concerns.  She also tried to persuade the doctor to prescribe some sleeping tablets for me as I'm getting very little sleep and finding it incredibly difficult to get to sleep (it's more often than not at least 5am, and it's not unusual for it to be 7 or 8am before I get to sleep).  The lack of sleep is most likely contributing to my state of mind and general state of stress of at the moment, but the GP won't prescribe sleeping tablets of any description because all of them can suppress breathing.  She doesn't want to risk that with me, and tells me it's not worth it, and I can see where she's coming from, but I'm knacked.  I'm trying all the 'sleep hygiene' stuff, but it's not currently working for me, and I'm spending most of each night getting up after another 30 minutes of failing to get to sleep, sitting in the dark/dim light, doing very little, going back to bed, and failing to get to sleep.

So yes, the GP talked with me, but of course has no quick fix, or in fact any fix, but she's there.  The psychologist has been away this week, so the GP wanted to see me instead so that she could keep an eye on me/things with me.  I saw her yesterday.  Nothing much to report, but again, she's there, and it's probably a good thing that she knows the state of play even if she can't do anything about it.  As others have said, she too said that it's just going to take time, but she understands the complexities of my situation with recent events still fully to get my head around, and multiple factors around my health in general.  It's not about feeling sorry for myself; it's about coping with the challenges my health issues lay before me, the impact they have on my life, the way they've changed the course of my life, and how they continue to change every aspect of my life, always moving the boundaries.  Lots of things.  Too many things to try to mention, and perhaps I don't want to mention them simply because that feels like trying to justify them.  I'm not going to get in to that.

The psychologist is back next week, not until the end of the week, which seems like an impossible time away, but I suppose it'll arrive eventually.  In the meantime I have four other hospital appointments to get myself to next week, one of them at the ridiculous time of 9am.  Not so ridiculous if you have a normal sleep pattern, but if I don't get to sleep till 7am, then that'll leave me with about half an hour's kip.  I can only hope that the night before that appointment is better than anticipated.  To be honest, a week of hospital appointments isn't really what I need at the moment. I could do with some time trying to concentrate on things other than my health - or lack of it - but next week I have no choice.

I feel like I'm beginning not to make much sense or that I'm going round in circles.  Maybe it's more in my head than coming out like that on the 'page', but I think I'm going to have to end this post here.  Perhaps next time I post I'll be somewhere closer to myself, but apologies in advance if I'm not.

Three and a half weeks (part one)

I am home.  It is good to be home, but I had such a horrible time and was so poorly that I'm also quite apprehensive about being home.

After writing 'Which way?' on 16th January I went to bed, but I didn't get any sleep because my lungs went steadily downhill.  At 6.30 am I knew that I was going to have to see a doctor, but I only worked this out when I realised that my primary concern shouldn't be that I had clean hair, and I shouldn't have been sitting in the bath with my head lathered in shampoo.  It's a strange state that my mind goes in when my oxygen levels fall and my carbon dioxide levels begin to rise, but at least this time I did recognise it.  However, unlike any other time, I then had a terrible, terrible feeling of foreboding and doom.  Although my peak flow still wasn't desperately low I knew that things were going to be awful.  I was sure that I was going to die.

With the certainty of death in my mind I didn't call an ambulance.  This probably doesn't make any sense to anyone but me, but I wanted to see a friendly face before I died so I called my GP surgery instead of 999.  I phoned at 8.30 am when my peak flow was still 130, and got an emergency appointment for 10 am, but I actually went up (in Noah - new powered wheelchair) at 9.30 am, by which time my peak flow was 100.  The doctor called me in fifteen minutes before my appointment time as I'd pointed out to the (new) receptionist that I couldn't breathe, and by the time I saw Dr Cg my peak flow had dropped to 60.  Ten minutes later my peak flow was unrecordable on a paediatric peak flow meter that begins at 30.

Dr Cg said he could still hear a little air getting in to my lungs, which was very good news, and hasn't always been the case (silent chest), but he wanted me in hospital as soon as possible.  He phoned my usual ward, but there were no beds so I was going to have to go to A&E and he phoned for a blue light ambulance.  So much for the eight/nine minute target time for getting to a blue light call - it took an hour for the paramedics to arrive!  During that time I used my nebuliser numerous times and was on oxygen, but the surgery only had one small bottle of oxygen and it soon ran out (they have since invested in a second cylinder).  Dr Cg called ambulance control several times to enquire about the ambulance, stressing that he had a known severe brittle asthmatic in crisis in his office who needed to get to hospital asap.  They had me down as a standard response!

The ambulance eventually arrived and I was loaded on-board, but was taken to hospital without any urgency.  We ambled through the traffic as though all was well while I gasped for breath in the back.  I have to say that this lack of response from paramedics/the ambulance service is a very rare occurrence indeed, which is probably why it surprised and scared me so much.  However, we did at last arrive at A&E, where the ambulance crew took me through to Monitoring, although I was only there for a matter of minutes before the Sister and doctor whisked me through in to resus.

I was given nebs and oxygen.  They had someone come down from the respiratory ward to put a gripper needle in my portacath and an infusion of aminophylline was started. I continued to deteriorate.  Only the medical student actually listened to my lungs, which shocked me somewhat, and no blood gases were done, but I knew I was getting worse and I knew I was getting tired.  An x-ray was done whilst I was en-route to the Emergency Admissions Unit (EAU), escorted by the resus nurse, which I was told looked 'fluffy' and is a sign of pulmonary oedema.  I presume this is a complication from the asthma, rather than a whole new thing to contend with.

I battled on in EAU, watching the world, seeing the world, feeling the world get 'thinner'.  My head was getting thicker, and as it did, it was like God was rubbing the world out from in front of me with an eraser.  I was being distanced from the world and losing the ability to take part in it.

And then a face - the face of one of the ITU Out-reach Sisters: 'I think she's getting worse.'  I think that I thought, 'she's right,' but actually I didn't know any more.  I didn't know anything other than exhaustion.

Snippets, that's what I remember now.  The junior doctor sitting at the desk with her colleague, almost in tears, saying, 'My patients are dying on me,' and pointing at me, then saying 'There's another one next door.'  The worried face of one of the ITU Out-reach Sisters.  Grabbing the hand of the ITU Out-reach Charge Nurse who I've met several times before and holding on so that I can get some life from him in to me.  Three different ITU consultants coming to assess me.  One of them - a woman I recognise from previous admissions - leaning very close to me: 'We're definitely taking you to Intensive Care, but there aren't any beds at the moment.  We're literally knitting you a bed as we speak.'  I think of a hammock.  Another of the ITU consultants is a short man who I also recognise and I realise he looked after my great friend Carol back in 2005 after she had a massive heart attack at age 42.  Carol died.  Then the EAU consultant who says my temperature is up, and notes that I'm tachypnoeic and tachycardic (breathing fast and have a fast heart rate), at 31 and 150 respectively.  He prescribes immediate IV antibiotics and more hyrdrocortisone (steroid injection).  Blood gases have been done and there's concern because I'm acidotic.  I'm shaking - it's all the salbutamol nebulisers that are doing it, and it's making me even more exhausted.  I can't stop.  I just want to sleep.  I am too tired.  I text my mum and tell her I love her.

All of a sudden I'm being whizzed along the corridor in my bed.  The two ITU Out-reach nurses (Sister and Charge Nurse) are there, the EAU nurse, the porter, the ITU anaesthetist, and lots of people standing back against the wall as I'm charged down the hall.  Faces, lots of faces, and they all look scared.  One looks terrified and then tries to smile at me.  I'm too tired, too poorly, and too afraid to smile back.  And one of the reasons I'm afraid is because the last time I was in ITU in this hospital I had the most horrendous experience that I don't really want to talk about, but it left me with no trust in them at all.

And then we arrive and it's a different ITU.  This is neuro ITU because there are no beds on General ITU, and my mind is eased a little, but I still wonder, wonder, wonder.

I'm taken through in to a room of my own - isolated because of my chronic MRSA positive status. Across the room to the right there's a window in to the main unit.  There's an elderly woman in the bed out there, all bunched up and contorted.  A woman I presume is her daughter is there.  She has brown hair and is wearing a red coat.  I can see the red.  The red is vibrant.  I am still just about in the world.

My room is full, at least it seems full.  Lots of people.  They lie me flat and slide me from one bed on to the other, then sit me up again.  They put the oxygen saturation probe on my finger and the alarm chimes when the machine records a reading of 79% (so I hear them say).  The anaesthetist has a gentle voice, calming, but his words are frightening: 'I really want to intubate you - put you to sleep and put a tube down your throat to breathe for you - but I think if I do, we'll never get you off the ventilator.  Have you had the tight mask before?  I want to try BiPAP because I think that without any ventilatory support you probably have a maximum of half an hour left.'  I nod, but I can't really process this information.  Half an hour left to live.  Half an hour.  Then dead.  I believe him because the world is disappearing.  I believe him because I am suffocating.  I believe him because I'm far too exhausted to keep on breathing.  I believe him.  Half an hour.

The Sister.  The doctor.  The nurse.  The anaesthetist.  They all put the mask on my face and strap it to my head.  Tight.  Tight.  Tight.  It blows air at me.  It blows air in to me.  It sucks air from me.  I still have to work hard, and I am so tired.

I look through the window to my right.  The woman with the brown hair and the red coat is still there.  The contorted woman in the bed is still there.  The machines attached to her are alarming and flashing red lights at the nurses who are standing nearby.  The woman with the brown hair and the red coat smiles in sadness.  The nurses watch.  The contorted woman in the bed dies.  The curtains are drawn around her and the woman with the brown hair and red coat slips out between them.  'I am next,' I think.

I look through the window to my left, and I see the university.  I know where I am in the hospital, in the city.  I know that place over there.  That place over there is the English Department.  That place over there is where I did my MA just last year.  That place over there has people in it who know me.  If that place is over there, then that means I'm still in the world.

I look to my right.  The curtains are open.  The contorted woman has gone.  The bed is empty.

I look to the left.  The English Department is still there.  I am still in the world.

________

I fought on, all through the night, all through the next day, all through the next night, all through the next day.  Several times I almost gave up.  I couldn't do it.  The machine took over, kept me breathing, just about.  W came, she watched me dying.  I wanted to apologise for putting her through this.  I texted my mum and told her I love her.

Eventually my lungs eased up a little - enough to come off the BiPAP for a while.  Eventually, after three days, I was transferred to my usual ward, but I had the BiPAP overnight to make sure that I stayed alive.  Eventually, I felt that maybe I might not be entirely separated from the world.  Eventually, I dared to think that I might live after all.

Which way?

I'm struggling with my lungs.  I've been struggling on and off since the beginning of the year, but it's getting worse.  Getting to sleep is a real problem, and once I do eventually get to sleep I keep being woken with a tight chest and wheezing.  I'm tired from it and tired of it.  I'm not yet needing to go to hospital, and there's still a chance that it might improve ... or perhaps that's wishful thinking.

Last night was bad.  This morning was bad.  The early afternoon was bad.  I spent the day in bad until 6pm, and then only migrated to the sofa in the sitting room to watch telly and to be up when W came round to say hello.  This evening has actually been a little better, but I'm still wheezing despite all the nebs.

I have a horrible feeling about this.  I have a slight panic whirling around inside, as though my body is preparing itself for an assault, a fight.  The night before last I was bradycardic with a pulse rate of only 48 bpm, which I've noticed often happens a little while before a big asthma attack.  I don't know why it happens, and neither does my consultant, although he was interested to hear about it.  Because of this, I'm not really sure whether or not to take the ivabradine that I'm prescribed for POTS as it reduces my heart rate (that's it's purpose).  Most of the time I still need it, and I get very symptomatic with a multitude of symptoms if I don't take it, but should I take it when there's a chance of periods of bradycardia?  The other thing to consider is, that when I'm in the throes of a severe asthma attack, conversely to this pre-attack time, my heart rate can go extremely high, which is also dangerous.  If I take the ivabradine as prescribed then my heart rate doesn't usually go to the high extremes it will without it, although this reduced tachycardia often confuses medics in the emergency situation as tachycardia is a symptom of a severe asthma attack.  It's all so complex.

As for what I'm going to do about my lungs, I don't know.  I suppose my plan is as always and to see what happens, but I hate this waiting, and I hate the exhaustion that comes with difficulty with breathing.  It consumes everything, because while I can do other things, at least part of my mind is always occupied with the act of breathing, which is exhausting in itself.

I saw the GP last week about the vitamin D preparation issue (I'm now waiting for a phone call from the GP surgery's pharmacist).  Even though I go to the surgery in my wheelchair - Noah - I like to walk from the waiting room to the consulting room.  When I did this last week I had to take a seat and a breather before I could speak to the doctor about why I was there.  We didn't talk about my breathing at all, not that I really saw any reason to as my GP can't do anything more for me until I need an ambulance, or in the event of an infection he can prescribe antibiotics.

Last night I thought that I had a high temperature, but it was only 37.4C, which is up a little, but nothing to worry about, and I don't think I've got an infection.  Saying that, W wasn't quite so sure about that when she came over this evening ... She also reckons I'll end up in hospital fairly soon.  She might be right, though I'm hoping otherwise.  Am I being unrealistic?

I don't know.

I may be seeing a doctor of some variety in the near future :o(