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.

Telling it as it is

My consultant came to see me on Monday morning and I decided to tell him how the relentlessness of my asthma has worn me to the core. I wanted to be clear that this isn't due to depression or is only about this immediate situation. I wanted to try to convey that I feel as I do because of the years of breathing difficulties, the incessant attacks, the repeated infections, and the lack of proper recovery between hospital admissions. This isn't just about my current situation. There was a time when things weren't quite so relentless, and I was younger so perhaps I had more stamina, but now I get no relief and there always seem to be something, some health difficulty, causing a problem. I don't have the energy any more.

The problem is that I want to live. I was apprehensive telling my consultant all this and actually saying, 'I can't live like this any more,' because I didn't want him to think that I'm suicidal. I'm not. If anything this is the opposite of being suicidal. I want to have a life beyond my disease, to have energy for living and doing things, for there to be more to 'life' than hospital appointments. I do try to get out and do things, to make the most of what I can when I can, but life has shrunk and asthma and illness have taken over far too much.

I'm not just feeling sorry for myself, although yes, perhaps there is a small aspect of that in there too. However, the overriding thing is needing more to life than I now have, and needing some improvement in my health to have that. All aspects of my being - physical, emotional, spiritual - are depleated, having had chunks ripped from them by the endless battle to breathe, with infection, with side effects from medications. At times I feel as though there is nothing left to me except illness and disease.

So I told Dr H all this, and I told him that I can't live like this any more, and he went very quiet, and he looked the saddest I have ever seen him. For a moment I felt guilty for inducing that sadness, but it was also good because it meant he understood, and he did understand. After a few moments of silence he slowly came back and then said, 'But you know that I don't have anything more to give you.' I do know, and that is the problem. It's not his fault, it's just that I'm at the end of the treatment line and have been for a long time. There had been the possibility of a new drug - mepolizumab - specifically developed for people with severe refractory asthma, but earlier in the year NICE (National Institute for Care Excellence) refused to approve it, seemingly largely on the grounds that it's too expensive and will benefit too few people. Dr H and a cohort of other specialists in difficult asthma submitted an appeal, the results of which are expected sometime in June, but Dr H has also told me that even if NICE approve mepolizumab this time I may well still be precluded from having it because my steroid dose is so high.

Dr H has been my consultant for twenty two years, during which time we have tried practically every medication there is. Still my asthma has deteriorated and I've been dependent on high dose oral steroids (prednisolone) for something like eighteen years. My current dose is 60mg and this is a reduction from the 80mg I was on six weeks ago. Steroids keep me alive, but they are also destroying my body in lots of ways too.

On Monday morning Dr H asked me if we'd ever tried a different steroid. We haven't. He said that in theory there should be no difference in therapeutic effect between steroids, but actually he has seen one steroid in particular - triamcinolone - have very good effect in some people who previously got little benefit from prednisolone. It is an old medication and, as far as I'm led to believe, it isn't used much in asthma. It used to be available as an inhaler, but Dr H was talking about it in its injectable form. It's given as a four-weekly injection into deep muscle where it is slowly released over time. It has been used in some where there's been question about their adherence in taking medication, but that's not the issue with me. The issue with me is how well I am absorbing the prednisolone and how well my body is utilising it. There's no question that I am absorbing some of it, because if I weren't I wouldn't have the side effects I do (most notably these days the diabetes), but to how much positive use is my body putting the prednisolone?

So this question of trying triamcinolone has arisen. I have talked about it with J, the Complex Lung Disease Nurse. I've asked friends who have severe refractory and/or brittle asrhma if they have experience of it and talked with those who do. J introduced me to another patient who's been on it for seven months with good effect and I was able to ask her questions about the pros and cons (for her there have been no cons!). I have read the patient information leaflet about it that J gave me. I've read various articles about it online. I want to try it. I'm aware that it may have no effect, but it has no chance of having any positive effect if we don't try it. I'm also aware that it may cause more problems with my diabetes, but I think/hope this could be dealt with in collaboration between Dr H and my diabetologist/endocrinologist, which is something I have put to J.

I hardly dare hope that there might be the possibility of some improvement in my health.

After my conversations with Dr H, J, and the patient to whom I was introduced, I haven't been sure if the triamcinolone is something that has been offered to try or merely suggested as a possible maybe. I needed to clarify this so I emailed J and he responded, 'I'm game if you are.' I am. I want this opportunity with all my being. Dr H has been away since after he saw me on Monday morning so there hasn't been any chance to talk about it further or for J to discuss it with him either. But he's back now and will be doing his ward round later today. J said he'll talk to him, and I'm sure they will both talk to me too. Dr H is always much more amenable to ideas if he comes to believe that they were always his (and maybe this was, but from something that J said to me I'm also not sure that it wasn't originally J's idea), and J knows him so well that he's excellent at achieving this. The final decision lies with Dr H, but I have a strong chance of being allowed this possibility of a little bit of hope with J on my side.

It's a frightening thing to let myself hope for this because I want it so much that I'll be crushed if it's taken from me. I am desperate for an opportunity to live again. I may find out if that opportunity is to be allowed within the next few hours.

It's complicated

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

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

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

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

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

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

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

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

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

Getting back to it

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

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.

Interlude

The plan had been to write a second post about Norfolk a couple of days after the first.  Plans don't always go as I'd hope, and this time it certainly hasn't.  A day or two after my last post I started to feel grotty.  It wasn't anything particularly tangible - a deep fatigue and malaise, and an inability even to think properly.  I was hoping it was just a bad day of some kind as I was supposed to be going to Liverpool the next day to meet up with some good friends from the Open University.

That night (Thursday) I had an awful night.  I didn't sleep well, I was very restless, I just didn't feel well, and when my alarm went off on Friday morning I felt awful.  My insides decided they'd prefer to be on the outside and my temperature was up to 39.7C.  There was absolutely no way I was going to get to Liverpool, but to be honest, I felt too ill to be too disappointed.

I couldn't keep my meds down, and I was concerned that my asthma would get completely out of control because of that.  My temperature wasn't responding to the tiny amount of paracetamol that I did manage to get inside me, and I was becoming dehydrated.  I rang the GP.  When I said to the receptionist that I think I needed a home visit she sounded a bit incredulous, but really she should know that I would never ask for a home visit if there was any chance I could get to the surgery.  She said that the doctor might just phone me, instead of visiting.

The doctor did ring me, but he said he was quite concerned so would do a home visit too.  I unlocked the door the next time I got up to go to the bathroom, and when Dr Cn arrived he let himself in.  He could see that I really wasn't well, and he was also worried that I wasn't able to keep my meds down, so he prescribed some Buccastem -  an antisickness tablet that dissolves slowly in the mouth.  He then rang the local pharmacy and got them to deliver it to my home, telling them that I was in no way well enough to go to the pharmacy myself.  I then gave them the prescription Dr Cn had left when they came around with the meds.

The day passed in a haze with weird dreams of high temperature, interspersed with many, many trips to the bathroom.  The doctor then rang me again before he left work for home at the end of the day.  He asked if I'd be okay.  I said that I probably would, but I was thinking, 'I don't know.  You're the doctor.'  Anyway, he told me that I should contact the out of hours doctors immediately if I got any worse or was at all worried.  I promised I would.

The cat was obviously really worried as he wouldn't leave my side.  This may sound odd, but Zach is very sensitive, and when I'm ill at night with my asthma he pats my face gently with his paw until I wake up.  He then watches me intently until I'm sorted and breathing easier.  He didn't need to wake me on the Friday, but he did stay glued to my side, following me into the bathroom and watching me closely all the time.  W came round in the evening and she realised that Zach must be starving because he hadn't touched his food in the kitchen.  He wouldn't go through to the kitchen because he was too busy guarding me, but W brought his food into my bedroom and he snaffled it down.

W was brilliant (as ever).  She cleaned my toilet and the bin that I'd earlier vomited in because I couldn't get to the bathroom fast enough.  She went back to her house and brought her fan back to mine to try to help cool me down.  She sat with me for several hours until I was fast asleep, sometime in the early hours of the morning.

Saturday was much the same as Friday, but I was getting more dehydrated.  When W came round in the evening she went to the supermarket for me to get some rehydration salts (and she also came back with some beautiful flowers that cheered me up loads).  She checked the ingredients in the shop.  I checked the ingredients when she got to mine with them.  W checked the ingredients again.  I checked the ingredients again, and again for luck.  There didn't seem to be anything in them that I am allergic to, so I set to trying to get them into me and keep them down.

Twenty or so minutes after taking the rehydration salts I was lying in bed (in fresh sheets that W had just changed for me) when I realised that I was itching a lot.  Then my eyes started to get itchy and sore and my left eye was swelling up.  I took some antihistamine, but still, my lungs began to tighten and I could feel my throat beginning to swell.  When my nebuliser did nothing to ease the chest tightness and wheezing, and I was being more sick than I had been, I knew I had to take my epi-pen.  I was heading towards anaphylaxis.

The protocol for anaphylaxis is that when you use an epi-pen you have to go to hospital.  You should also call an ambulance to get to hospital.  I hate ambulances.  I did go to hospital, but W took me in her car...  Thankfully, we got there no problem, and possibly quicker than in an ambulance as it was a Saturday night in Newcastle.

I was seen as soon as we went into A&E, and taken straight through for treatment.  The department was full of drunks and people laid out on trolleys in various states of drunken unconsciousness.  The bloke in the bed next to me was absolutely wasted, and trying to get up despite being in head blocks because he had a suspected broken neck.  The poor nurses really had their hands full.  But regardless of that, they were great with me.

Once I was stabilised in A&E I was taken to the Emergency Admissions Unit where I spent the rest of the night and most of the next day.  The anaphylaxis was settling well, but I still had a high temperature, I was still vomiting, and I still had bad diarrhoea so I was far from well.  The medics said they wanted to keep me in for a while, but said that they'd probably keep me in my side room on EAU.  This is why it was a particular surprise when the porter came to take me to the ward.  Nobody had told me I was going to the ward, or what kind of ward it was, so it was even more of a surprise when the porter said I was going to the ward for Tropical Diseases!

It turned out that the ward for Tropical Diseases is also the ward for Infectious Diseases, which gastroenteritis certainly is, and a ward for those with compromised immune systems.  Nonetheless, it was still somewhat unnerving to be going there, and even more so when I arrived.  The Tropical and Infectious Diseases ward is the only ward on the top floor of an isolated part of the hospital.  The corridor leading to the ward is locked.  The door going on to the ward is locked.  There is a red light above the door that indicates when someone on the ward has something particularly nasty.  Each patient has their own room, and each room has a double door/airlock entry system.  Each cubicle can have the pressure inside adapted (I guess some tropical diseases affect pressures, or something), and each room has a camera on the wall so that the patient can be watched with medical staff requiring as little contact as possible.  At night time the camera lens is encircled by red LED eyelashes so that the patient can still be seen in the dark.  The windows in the room don't open.  People hardly ever come in, and when they do they're clad in apron and gloves.  You see these kinds of wards on apocalyptic sci-fi films, but you never think they really exist.  You think there must be some artistic licence for dramatic effect, but no, they do really exist, and I found myself on one.  It was all very, very surreal.

I was on the T&ID ward for three days before coming home on Wednesday evening.  I'm a lot better than I was - so, so much better than I was - but I'm still not right.  It turned out that the gastroenteritis was a bacterial bug, and one that's reportable to the Health Protection Agency, so apparently I might get a call from them to see if they can locate the source of the infection.  I have an idea, but I'll leave it up to the HPA to confirm or otherwise.

I am now completely wiped out.  I still don't feel terribly well, and apparently I could have some symptoms for up to four weeks!  I think this is going to be a slow recovery, and definitely not helped by the anaphylactic reaction.  W and I have contacted the manufacturers of the rehydration salts about that.  The only thing it can have been that caused the reaction is the flavouring, for which the ingredients weren't listed, and under the 'side effects' section in the patient information leaflet it says, 'None known.'  I've filled in a couple of forms for them, and they're also sending one of the sachets off to Germany to be analysed, so at least they're taking it seriously, although I'm still going to try to get in touch with them to find out what the ingredients are in the flavouring.  It's important that I know.  Either there's something in it that I know I am allergic to, but which isn't listed in the ingredients, or I have developed an allergy to something else.  I just hope they give me the information I need.

It's been quite some week.  I'm hoping for a much less eventful week this week.

Allsorts

Oh dear, yet again I seem to be apologising for the lengthy gap between posts.  I truly am sorry.  Life has been busy lately, but things have now slowed down again for a while.

So one of the things that's limited my posting has been on-going problems with my left hand.  I've told you in previous posts how I had carpal tunnel syndrome surgery back in May, and how I've developed some complications post-surgery.  I'm still seeing the physio every week and things are improving a little bit, very very slowly, but no major positive change.  I've been doing the massage I have to do, and the exercises, but it's difficult to motivate myself to do this as it's painful and can instigate more on-going pain, tingling, and stiffness.  The physio says it's a matter of getting a balance of doing enough to stimulate healing, but not enough to aggravate things.  For the past 3 weeks I've had to wear a sling most of the time because my hand swelled up causing further pressure on the ulnar nerve and worsening symptoms.  I saw the surgeon again today who said that I should now use the sling as little as possible as the nerves all along the length of the arm need to be stimulated.  He said that it will hurt, but I should try to work through the pain as much as possible.  The physio then said that I should rest my hand in the sling intermittently and not work my hand so hard that the pain gets too much.

When things suddenly got worse with my hand three weeks ago I saw the physio as an emergency and she got one of the doctors to have a look.  The doctor then decided that I needed some nerve specific pain killers, but asked for my GP to prescribe the meds because of the complexity of prescribing for me around my allergies.  So I saw my GP and was prescribed gabapentin, which is actually an anti-convulsive medication, as are most nerve-specific pain meds.

At first, all was going okay with the gabapentin, but very quickly I was feeling nauseous most of the time.  My GP was reluctant to increase the dose whilst I was so nauseous and lacking in appetite, so I was waiting for those side effects to ease off before having the doc put the dose up.  However, once the nausea eventually began to settle I noticed that I was also feeling tearful and my mood generally was a little low.  I was becoming a bit hyper-sensitive and letting things get to me that usually wouldn't cause much more than a slight annoyance.  I read up a bit on gabapentin and found that depression can be a side effect, and as I know that I can't afford to go back down that route after such severe depression in previous times, I went back to the GP.  I saw her yesterday and she's switched me onto pregabalin.  I'm only on a low dose at the moment, and today the pain has been more bothersome (although that could be from the prodding and poking by the surgeon), but I have to have a phone consultation with the GP on Friday when they might increase the dose.

Whilst all this has been going on I've been trying to write stuff for my MA.  I managed to get my module submissions done on time, and even a few days early.  It wasn't easy doing it all with one hand, that's for sure.  Then, of course, I had a fair bit of work to do for my portfolio.  I had to get some done for my supervisor.  I had it in my head it that I had to get work to my supervisor by 14th for our meeting on 21st, but it turned out that our meeting was on 14th and I should have got work to her by 7th.  I only realised this on 12th, so of course, I didn't get it written on time or sent on time.  Thankfully my supervisor is very understanding and although she's not in Newcastle this week so can't meet up, she's going to do this supervision by email.  Thank you, V.

So then there's the car, or rather cars.  Somebody bumped into my current car, MacTavish, and smashed the wing mirror.  The whole thing was twisted sideways and the mirror was wobbling on its post.  Thankfully it was only the wing mirror that was damaged, but it was still extremely frustrating as whoever did it didn't leave a note with any contact details or insurance details.  I haven't been able to drive recently because of all the problems with my hand, so I don't know exactly when the damage to the car happened, but when I did notice then I contacted Motability Insurance.  They've been great.  They sorted out getting it fixed and had the mobile service sent out to me.  They came today and it's all mended, and I'm £75 worse off because of the excess :o(

There was a bit of a rush to get MacTavish mended because I'm getting my new car next week.  I'm actually going on holiday up into Northumberland at the weekend and will be away for a week, but the company I'm getting the new car from are bringing it up to me on holiday.  How great is that?!  I've still got rather mixed feelings about having to get this new car (which still needs a name), but I am getting excited now.  I'm focusing on the positives and know how liberating it's going to be to have a car I can get Taz into.

That's probably enough to be getting on with, but I will endeavour to post again very soon.  I promise.

In hand

Slowly, ever so slowly, I'm getting through my work.  I have now submitted two of the pieces of work for my MA and only have 1000 words left to do of the third submission.  Of course, I then have 15000 words of portfolio/dissertation to write, but that's not due in until the end of August so there's plenty of time left to worry about that get that done ;oP

Things have been somewhat slowed by a complication arising from the carpal tunnel surgery I had in March.  One side of my hand has swollen, is incredibly tender, and is causing horrible pain in two of my fingers and some of my arm.  I've been seeing the physio at the hospital for several weeks because I've had reduced mobility at my wrist, and hypersensitivity at the site of the scar, so when things got a whole lot worse at the beginning of last week I called the physio department for advice.  The physio told me to see my GP that day and also made an emergency appointment to see her the following day.  Amazingly, I actually managed to get an appointment with the GP - amazing because it was almost midday when I rang and usually all appointments have been taken ten minutes after the phone lines open at 8.30am.  So I got to see the GP, but it was a trainee, who was very nice, but didn't have much idea what the problem was or what to suggest, other than increasing my diuretics to try to reduce the swelling.

I saw the physio the following day - Wednesday.  She also didn't know why my hand has swollen, but she thought the swelling was causing compression of the ulna nerve.  Rather than seeing me in the rehab department where she usually sees me, she had told me to see her in the hand clinic in case she thought I should see a doctor.  She did, and she grabbed one (I presume not literally, but I didn't follow her into the corridor to see), and the doc agreed with the physio's diagnosis as there was no evidence of infection.  They decided that my appointment with the surgeon should probably be brought forward, and that came through the post two days later for 19th June.  They also decided that for now I ought to use my hand as little as possible (easily done, because it's far too painful to use much anyway), have it elevated in a sling, and have some nerve-specific pain killers.

The hospital doctor had two pain killers in mind, gabapentin and amyltriptyline, but didn't have time to check through all the ingredients to see if either contain anything I'm allergic to, so instead said I should contact my GP.  I phoned the GP as soon as I got home, explained the situation to the receptionist I spoke to, giving the name and contact number of the physio in case the doctor wanted to speak to them.  Anyway, after the doc had finished surgery she called me back, but hadn't been able to speak to the physio so I explained it all again to her.  She was lovely (as ever), and checked both drugs for potential allergens.  As it turns out, I can't have amyltriptyline because it's in the same classification as a medication that I had an anaphylactic to several years ago.  However, gabapentin seemed okay so she prescribed that and faxed it over to the pharmacy for me to collect as the surgery was about to close.

Gabapentin does seem to work, but it also makes me feel very nauseous, so I'm trying to cope with the pain  some of the time.  I say this very tentatively, but I think it might be a little bit better anyway, and I think the swelling might have gone down a bit too.  I hope so because the doctor at the hospital said that nerve compression can cause long-lasting muscle weakness, which itself can cause the hand to wither and permanent loss of function.  There are some things you just don't need to hear!

I have to go back to the physio on Wednesday morning so we'll see what she thinks then.  I'm hoping that I will at least be able to take the sling off when I've seen her.  It makes life tricky, and isn't helping me get my work done.

Okey dokey, I'm off to bed now, but hopefully I'll have got the last of my MA coursework out of the way in the next few days and will be able to tell you all so when I next blog, which I promise will be a lot sooner than the time between this post and the previous one.

Not as planned

I was hoping to post an update last Thursday, but it didn't happen because I had a visitor just as I was about to set to task.  So then I determined that I'd do it on Friday instead, but nothing went to plan on Friday and after a week of struggling on at home with what turned out to be 'flu, I ended up in hospital.

As I say, the lurgies I've had weren't 'just a cold', but 'flu, and for all the wishing in the world things didn't settle.  I was reluctant to go to my GP partly because I know there's nothing a GP can do for viruses so there's no point in going to the surgery and infecting everyone there, and partly because I was pretty sure that the effort it would take to get to the surgery (even in Taz) would set the lungs off into a catastrophic state.

 Late last Thursday night I was a little anxious that things weren't improving (in fact I got rather cyanosed on moving from the sofa to the bed - a very bad sign), and I was very aware that the weekend was fast approaching and that medical services reduce significantly over the weekend.  I compromised with myself and decided to phone the GP surgery in the morning and get a telephone consultation with the doctor.  I somehow managed to wake myself up with the alarm at 8.30am on Friday and set about the task of getting through to the surgery, but as soon as the lines open they become almost permanently engaged, so it took me 7 minutes to get through, by which time the receptionist told me that there weren't any telephone consult appointments left for that day.  She went on to say that there were, however, lots of contact appointments at the surgery, so there'd be no problem if I could get up there.  I explained my predicament of not being horrendously short of breath at that precise moment (although she interjected saying she thought I did actually sound very breathless), but I was concerned that getting myself to the surgery would set my lungs off big time.  'Oh,' she said.  'In that case, all I can do is to get the on-call doctor to phone you up in the next 20 to 30 minutes.'  Now I don't know about you, but to me that sounds rather like a telephone consultation, which is what I'd originally asked for... 'Yes, that's absolutely fine.  I'll keep the phone by me.'

The doc phoned back within twenty minutes, and I immediately knew that I'm far too frequent a customer at the surgery as she greeted me with, 'Hello, Becky?  It' M.  Dr P.'  First name terms.  She didn't even call me Rebecca, as on my notes, but Becky because she knows me so well (and I always sign off cards, letters, etc that I send them as Becky, so they know that's what I like to be called).  Anyway, the conversation was relatively brief.  Dr P could tell that I wasn't great, although not in crisis, and she said that one of the things that concerned her was not just that I'd been struggling on at home on my own with 'flu for the past week, but also that I was phoning them for advice, which I hardly ever do.  That, she said, meant that I was concerned, which in turn made her concerned.  I saw her point.  She fairly quickly decided that I ought to go to hospital, and when I suggested that the exertion of this might set things off, she came back to me with, 'In which case you need to be there, don't you think?'  Again, she had a point.  Dr P tried to placate me with the suggestion that I may just be kept in hospital for a few hours while they observe me, but I knew that once I was in the hands of the medics I wouldn't be going home any time soon.

'So do you want me to call you an ambulance then?' Dr P asked.
'No, not really,' I replied, with the edge of a joke in a my voice.  'Could you maybe see if Ward 29 have a bed first?'
'Okay.  I'll phone the ward, speak to them there, then call you back.'
'Alright.'
'And Becky?' She called down the phone just as I was about to hang up
'Yes?'
'Pack a bag, because you're going to hospital whatever.'
'Oh. Okay.'  So disappointed, but I knew she was right.  I knew I needed to be going to there really, even if I didn't want to.

I didn't actually need to pack a bag as I keep one packed and stocked all the time, but I did need to think about brushing my teeth, getting meds together to take with me, getting the last few 'luxuries' such as mobile, kindle and book, letting my mum and W know, and then maybe changing from pyjamas to clothes.  I managed a few of those things before the doc called back to say that I was in luck, Ward 29 had a bed, she'd called a 20 minute ambulance, and she hoped it would be an easy and short admission.  She is very lovely, and most importantly very good.

So here I am on Ward 29.  To be honest I've felt like something of a fraud because I wasn't in my usual state of total desperation when I arrived, but I actually don't think I would have made it through the weekend without going splat, and I have been on the aminophylline infusion ever since I arrived.  As one of my friends who's a GP said when she came to visit me, 'You're not a fraud just because you haven't ended up in ITU this time.  Most people don't go to Intensive Care when they come into hospital.'  Ah, yes, good point, S, good point.  So I'm not a fraud, and I know it really, and of course I wouldn't have been kept in or put on the aminophylline if I were, but it makes me think about how used I have become to being desperately ill when I usually arrive in hospital...

I am mending.  I'm still on the infusion at the moment, but we're hoping to try to get that down in the next couple of days.  My temperature has also been much more settled today, and whilst I'm still a bit snuffly, I'm doing okay.  This might turn out to be a shortish admission for me :o)  though of course I'm saying that ever so quietly so that my lungs don't hear and don't go getting any ideas about acting up.

As seems to have become the way of things during admissions over the past couple of years, I have once again swelled up immensely with fluid retention.  Aminophylline is meant to have mild diuretic properties, but it appears to have had the opposite effect with me ever since the POTS started.  I am currently gargantuan.  I am whale-like, and the only relief is that, despite my marine animal appearance, I don't yet appear to have developed a barnacle problem.

Re-engaging

It's taken me a while to get back into life after my most recent hospital admission, probably because it was such a long one, but I'm getting there now.  When I first came home I was feeling quite overwhelmed by the world, having spent most of the previous four weeks in one small room because of being MRSA positive.  I found that almost everytime I left my flat I'd begin to feel very emotional, and on several occasions was almost in tears simply because I was doing something normal.  I was alive.  I'd survived the asthma attacks (somewhat surprisingly), and was back in the world where people try not to think about being ill or death.  One day last week I was in Tesco when I suddenly felt really tearful at the normality of checking a box of eggs for broken ones.  It was almost too much, and part of me wanted to abandon my shopping and come home.  I didn't.  I moved on to the milk and instead nearly cried over the bottles as I considered the normality of checking expiration dates.

It's odd how emotional it can be to come home from hospital after a long admission.  I suppose it's partly the relief of having survived another severe attack, and this time there were various complications along the way that added to that relief.  Coming home can be exhausting as well, though, so perhaps some of the emotion comes from that too.  I mean, when you're in hospital you don't have to do anything except the hard task of get well (or relatively well) and then stay stable.  When you get home you have to maintain what stability of wellness you've achieved, hopefully improve further, and do all the day-to-day living things like meal-planning and prep, getting drinks, getting dressed, shopping, maintaining the home.  It's wonderful to be able to do these things, and to have the freedom of being home, but it is also exhausting and takes a fair amount of getting used to again.

I tend to throw myself back into life when I get home from hospital, often to the dismay of friends and family.  In part this is because I have so many hospital admissions, and so little time between them, that if I had 'recuperation time' then I'd only ever have that and time in hospital without any proper time for living a life.  It's also the way I've learnt to deal with the trauma of being in hospital, and yes, each admission is traumatic even though I'm used to it.  I am used to the routine.  I know what to expect in terms of treatment and procedures.  I know all too well what ITU and HDU are like.  I know the usual course of my attacks.  But I never get used to the uncertainty of my survival, the possibility that each attack may kill me.  I never get used to the fear and sensation of suffocation.  Each attack is physically and emotionally draining.  Jumping straight back into things when I'm home is my way of making the most of life while I have it, and reaffirming that there is more to my life than illness.

That is something I sometimes struggle with - knowing that there's more to my life than illness.  Sometimes I feel like I just bounce from one hospital appointment to another, to my GP, to my carers, to feeling ill, and back to hospital.  There's been a fair amount of that even during these past two weeks at home as it seems that I've developed some problems with my liver, most likely as a result of long-term high-dose steroids for my lungs.  Since coming home I've already been back to my GP once, had bloods taken by the surgery phlebotomist, been to the hospital for a scan, and been back to the surgery twice for blood results.  It's looking likely that I have (non-viral) hepatitis, so yet something else to contend with, and probably another referral to another hospital consultant and therefore yet more hospital appointments and 'life' as a patient, rather than life as BeckyG.  I'm hoping to get a better picture of things next week, and maybe find out a little more about diagnosis, prognosis, treatment (if any) etc.

All this liver stuff has certainly been making me feel rubbish, with pain and constant nausea, and more lethargy, and it might well be contributing to the water retention problems I've been having.  It's been more difficult to throw myself back into life, but I've been determined to do what I can so I actually managed to get to homegroup (bible study group) on Wednesday for the first time in a long time.  It was good to be there.  I was tired, but it was a small group of people who know me well, and I was able to share some of my worries and concerns with them, and pray about them, and that was all a relief. 

I also went to a Bellowhead concert on Monday night at The Sage.  I love Bellowhead, though I find it very difficult to describe their music ... perhaps you could call it funk folk...  Anyway, they're brill and they clearly enjoy themselves while they're performing.  I'll post some photos of the gig when I get around to taking them off my camera.  Actually, Monday night's Bellowhead gig went a long way towards helping me to feel alive again, like that kind of concert is what being alive is all about.  It was fantastic, and come to think about it, I've been a lot less suddenly tearful since then too :o)

So yes, I am gradually settling back into life outside of hospital, albeit with some (more) health complications, and I am re-engaging with the world :o)