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.

Acceptance

It was a long and difficult bank holiday weekend with no answers to all my questions, no conversations with anyone with authority to give any suggestion of answers, and a lot of time to think and fret. I was able to talk about it a little with my mum and step-dad who'd come down from Edinburgh to see me, but visiting times can sometimes pass too quickly, especially when you're trying to make space for serious discussion without being miserable all the time. It can be a difficult balance. We did talk a bit, though, and I cried a bit, and Mum gave me a hug, and neither of us came up with any answers because we're the people with the questions, not the answers. Then all too soon Sunday afternoon arrived, Mum and J went back home, and I had an extra day of weekend to get through before I had any chance of asking the questions to folk with the answers.

Tuesday morning and an email from J in response to the email I'd sent him on Friday. It said that he could understand my frustration and he'd speak with Dr H. I thanked him and waited. I didn't see J today when I thought perhaps I may have done, but he was likely very busy with the curtailed week. I presume, though, that at some point he did have that conversation with Dr H that he said he would, but I'm not sure if it was before Dr H came on his ward round.

At first there was no mention of any of last week's discussions. It was all about what progress I'd made since Friday, how I was feeling this morning, what my peak flows were doing, and planning to get the aminophylline infusion down. All important, but not what was at the forefront of my mind. That came at the end when he asked if I had any questions. I thought he might be a little exasperated when I again rose the subject of the steroids, but he wasn't, and although there was still a lot of that professional detachment from Friday, there was a little more emotional engagement too.

One of the reasons Dr H had given for not giving me triamcinolone was that there is no clear dose equivalent of it to the 60mg of prednisolone I take. A friend had then sent me a link to a web page with a conversion table for different steroid medications, including triamcinolone and prednisolone, which of course flew in the face of what Dr H had said. I asked him about this today and he said that there is a dosage equivalence for the two medications in tablet form, but not converting from oral prednisolone to intramuscular (IM) triamcinolone, and with that he really doesn't know what dose he would give me. That made more sense to me than him just not knowing.

We talked some more about betamethasone, and I put to him my concerns about the lack of any evidence for its efficacy. I have actually found one paper online about its use in severe refractory asthma that's unresponsive/minimally responsive to prednisolone, but it was on a tiny cohort of only twelve patients. Dr H didn't know about it. He said he hadn't known any research had been done on it; it had just been a thought he'd had once and decided to give it a try with a few patients. I have to say that it did surprise me somewhat that he wasn't aware of the paper, but at least he said he'd look it up. So then I went on to say that there had been more articles online about triamcinolone, and more anecdotal evidence of its efficacy, including J's introduction to me of a patient who's been on it for seven months with good effect. I also said that I've spoken to friends who've tried it, some with positive results, and again it's the lack of any kind of evidence of betamethasone being effective that bothers me. Dr H reiterated that in theory there really shouldn't be any difference in their efficacy because a steroid is a steroid is a steroid, but he did then go on to tell me of one man he treated, who had been on high dose prednisolone for a long time with minimal positive effect whilst having a number of the negative side effects (all much like me). After four weeks of being on betamethasone he had piled on the weight, but he was breathing better, had more energy, and was quickly able to reduce the betamethasone dose to levels equivalent to much lower doses of prednisolone. It's only one anecdote of one patient, but it is at least some evidence.

I would like to be able to say that we came to a compromise, but we didn't. What actually happened was that I relented. Or came to accept the situation. Or something in between.

Perhaps it is acceptance. I have accepted trying betamethasone. I am still hugely disappointed that I'm not going to have the opportunity at this time to try triamcinolone, but to be fair to Dr H he did say today that 'It's not an either or,' and that if we can get my overall steroid dose down to more reasonable levels with the betamethasone then we could perhaps give triamcinolone a go (the advantage then of the triamcinolone being that it would mean I could take fewer tablets overall as the steroids would be given as an injection). I guess that, to a degree, I've accepted that betamethasone is my only option ... and all the stress and upset and fretting over the long weekend has exhausted me into a place of thinking that if betamethasone is my only option then at least it is an option, and there haven't been any of those for a very long time. I will try it.

We are hoping that we can get the aminophylline infusion down tomorrow.  The dose has been reduced over the past several days so hopefully stopping the infusion and restarting the oral theophylline will be uneventful, but it's always a slightly anxious time as I've had many disasterous attempts at this in the past. Given that Dr H and I have come to this 'agreement' regarding the betamethasone, I said I needed to know what the plan now is. I can't now be sitting on maybes and waiting for some undetermined start date; I need to know when it will be started. Thinking about it, Dr H didn't actually give an exact day, but said that we'd get the aminophylline down and they'd start it while I'm still in hospital because they will need to keep an eye on me. To me this suggests it'll be sometime in the next couple of days, but I kind of feel like I need to make sure it does actually happen.

Dr H has warned me that my body will probably miss the prednisolone in a number of ways. He didn't say how, but said that I might not feel great. It's not exactly a physical addiction to the prednisolone, but it's something akin to it. I don't know how much of 'not feeling great' and 'withdrawal' from the prednisolone is going to be overridden by the betamethasone going into my system, but then I don't know if there'll just be a straight swap, dose for dose, or a gradual decrease of prednisolone alongside a gradual increase of betamethasone. I suppose these are things to ask and find out about over the next day or two.

Steroids

Dr H came this morning as expected, but didn't broach the subject of triamcinolone and a change in steroid medication. We discussed the immediate aspects of my treatment and the fact that I'd had a very bad night last night, and then he asked if I had any questions. Well yes, I did. The big question hanging over me was about trying triamcinolone as we'd discussed earlier in the week before he'd gone away. As I said yesterday, I had thought Dr H had got some measure of where I'm up to with my asthma in terms of physical and emotional stamina, that he'd understood, and maybe he has, but something had changed by this morning. Perhaps it was his time away doing whatever he's been doing for the rest of the week; or perhaps he applied professional emotional detachment (not always a good thing, in my opinion); or perhaps he's just a man being a man who doesn't want/like to 'do' emotions. Maybe it was something else. Whatever it was, though, was harder and less approachable. Less forthcoming. Almost less understanding.

I realise now that I'd slipped up and had allowed myself to let a smidgen of hope squeeze through the cracks. Maybe it was helped along by the positive vibes I had got from J, and having been introduced to someone for whom triamcinolone has been beneficial. I think I'd told myself that that introduction wouldn't have happened if it wasn't at least likely that I'd be allowed to try it, and that J saying, 'He's game if I am,' was almost confirmation that it was practically decided that I'd be given this opportunity.

I am a fool.

I had been led to believe that J and Dr H would be having a conversation about it all, and then would follow a conversation in which I was included too. Perhaps the first of these conversations happened, but I'm not convinced.

This morning, when I asked Dr H about triamcinolone, he basically said no. Now it's not quite as straightforward as that, and I know he's not dismissing everything I said to him on Monday, but I feel almost bereft. The reasoning behind this retraction is that there is no direct equivalent of dose between prednisolone (my current steroid) and triamcinolone, which makes the transition complicated. Dr H knows what dose of triamcinolone he gives to patients on a much lower maintenance dose of prednisolone, e.g. 15-20mg, but not for the dose that I take - 50-60mg. He said that they'd have to give me so much that he's not sure it's feasible/possible. I understand that. I can appreciate that. The logical part of my mind can see where he's coming from, but the emotional part is screaming that surely this must have crossed his mind before and if so why mention it in the first place and plant those first seeds of hope?! It is unfair of him to have done that! I'm cross! I'm fuming!

I'm broken.

But I said before that the no is not a straightforward no. It appears to be a no for triamcinolone, which is shattering, but he said that they might yet try a different oral steroid, beclomethasone. I think I mentioned it briefly in my previous post. It's used a lot in asthma in its inhaled form, but not so much as tablets. In fact I can find nothing about its use in tablet form in the treatment of asthma when hunting on Google. Neither have I heard the same anecdotal evidence for its efficacy in asthma (as tablets, not inhaler) when prednisolone has failed as I did for triamcinolone. This isn't to say that it won't work or doesn't have the same chance of working as triamcinolone, but that it doesn't seem as likely to me because the evidence isn't as forthcoming.

Perhaps my upset over the apparent no to triamcinolone is out of proportion given that beclomethasone is being presented as an alternative, but the lack of evidence or anecdotes of helpfulness does bother me. I know there were never any guarantees that triamcinolone would work for me, but it sounded possible. Beclomethasone feels much more like a stab in the dark, with a vague chance that changing the steroid drug might help but with no/little past experience on which to base any solid hope. Given the option I will try it, because after all I have absolutely nothing else to try, but I don't have anywhere near the same level of hopefulness for a positive result. I was such a fool to allow myself to begin hoping for triamcinolone and the possibility of the positivity that seemed to be being presented to me. I should know better by now than to allow myself to begin hoping when it comes to 'new' asthma treatments for me.

I emailed J this afternoon. I told him what Dr H had said and how the triamcinolone has been retracted as a possibility. I told him of my upset and confusion. I told him I need his help so I can understand what the hell is happening with these apparent opportunities to try to get some life back. I heard nothing back. One of the ward nurses said J had popped up to say goodbye before he went home but he'd seen I was asleep and hadn't wanted to disturb me. On one level I appreciate that, but on another I'm cross because I thought it would have been apparent from my email that I very much needed to discuss the steroids and all the questions I raised.

Now it's the weekend and neither J nor Dr H will be in. It is also a bank holiday weekend so I suspect neither of them will be in until Tuesday. That's a long time to wait for answers that have potential to impact on my life so enormously. Maybe you don't see it that way. Maybe Dr H doesn't understand it as much as I thought he did. But for me it feels like the difference between life and none life. I want to live, but not like this. This is not living.

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.

Departed

Oh, it's so long since I posted, but given all that was going on at the time of my last post, perhaps you understand some of why I haven't blogged.

As you have probably guessed (or perhaps hoped), I have been discharged from hospital since I last posted.  I had a long admission with a very, very slow weaning of the aminophylline, which went smoothly, but given the upset of my father's death shortly after I was moved from ITU to the ward, we all wanted to be sure that my lungs were going to cope with the reduction in IV and its replacement with the tablets.

Asthma is most definitely a physical illness, but like many illnesses, it can be affected by emotional upset and distress.  This doesn't mean that it's psychosomatic or 'all in the mind', just that physical and emotional well-being is intertwined, and asthma can become worse with both repressed emotion or expressed emotion.  Laughing or crying can both induce an asthma attack in some, including me, which seems most unfair.  When I was in hospital this last time, and out of ITU, I was trying to recover from a terrible asthma attack whilst also trying to find a way to grieve for my father without undoing the healing that my lungs had thus far done.  One of the junior doctors came to see me one weekend evening, still doing her ward round.  I poured out some of my upset that most of the time I was trapped with on my own, and as I forced back some of the tears she said, 'There's no harm in crying and letting some of it out.'  I replied that I wanted to and needed to, but the harm might be that it could set off the asthma again.  She held my hand, which was enough to tell me that she understood that dilemma and that fear, but didn't have the words to make it right.  I'm glad that she didn't try to make it right.  Through a series of comments and observations on both our parts I established that she was a Christian, and I asked if she would pray for me.  She told me that as a doctor she has to be careful about not imposing her beliefs on others, but as I had asked then of course she would pray, and she did.  This lovely young doctor sat with me in my hospital room, with my upset and distress very much on show, and prayed, and it was exactly the right 'medicine' for me that evening.

After my week in the Intensive Care Unit at RVI, I had another three weeks on the ward at the Freeman Hospital.  It was a difficult discharge, not so much because of the asthma, but because I felt like I'd had everything knocked out of me - physically and emotionally.  The one thing I was holding on for was cuddles with Isobel Artemis, my gorgeous kitten.  I had actually seen her once during my admission when a collaboration between my friend J, who was looking after Isobel, and N, the hospital chaplain, meant that J was able to bring Isobel to the hospital chapel (with the permission of Infection Control), and N was able to trundle me down there from the ward in a wheelchair.

I was so looking forward to seeing Isobel Artemis again and giving her masses of cuddles because I'd missed her so much ... but when I got home she wasn't there.  J said that Isobel hadn't been at home when she'd come in to feed her that morning, but we waited in hope that Isobel would return.  Isobel hasn't come home.  She's still missing almost eight weeks later.  I have been so lost without her and every day I wish she would saunter in through the cat flap as though she doesn't know what all the fuss has been about, but every day there is nothing.  I have registered her as missing with the microchip company so that we will be reunited if/when she's taken to a vets or shelter that scans for microchips.  I have registered her as missing with the company Animal Search UK who have put her details on her website and Facebook page.  They've also produced this poster.

 I've put up forty five of these all around the area, plus dropped about 2000 similar flyers through letterboxes in the area.  I've been out calling her at all different times of day (and night).  I've emptied the vacuum cleaner out in the back yard and tied a piece of my clothing to the back fence as both these things carry my and her scent so are meant to attract her home if she's anywhere nearby.  I've contacted the dog and cat shelter, and put her details on every appropriate Facebook page that covers the area.  I've contacted several vets practices in the area.  I've had a few calls from Animal Search UK with possible sightings that I've followed up immediately, but they've turned out to be other cats or nothing at all.  Nothing.  It's like she's just vanished.  The vet receptionists think that, given all that I've done to try to find her and there's been so little response, she's most likely been stolen.  I can only hope that she is eventually scanned for a microchip and discovered to be missing from me.  I long to have her home.

I will never give up on getting my precious Isobel Artemis home unless I get a call to say that she's been found dead, but I'm not good at having no cat in my life.  I'm going to get another kitten.  J has a grown up nephew who has cat who had kittens thirteen days ago.  I would like another little girl kitten if possible, and in a couple of weeks J's nephew and I are going to take the four kittens in Daisy cat's litter to the vet to be sexed.  One of the kittens is a little calico so is almost certainly female, the other three are tabbies like Daisy, and I'm kind of hoping that one of them is female too as I think I'd quite like a tabby.  Anyway, I went to meet all four of them when they were just two days old.

I can't tell from the photos which is which, but I do know that all four of them appear in these photos.  Let me know if you can tell the difference between them.  They'll be much easier to tell apart the next time I see them at four weeks old, and I'll hopefully be able to see more of their personalities too.

So, the other departure, the one I've been avoiding saying much about.  Dad.  We had to wait a month after Dad had died until we could have his funeral, in part because of a backlog at the crematorium.  It was a difficult day, and actually I don't want to say very much about it ... Although I will say that after the funeral and the wake I had a really good family time with my mum, step-dad, my brother M and his family, and my brother C and his family.  M and family were staying in an apartment hotel (a hotel comprised of little apartments, with self-catering facilities as well as food/drink that can be ordered and brought to the apartments) that we all congregated at both between the crematorium and wake and after the wake.  The children were able to run around inside and play together, which they all needed as there isn't much scope for that at a funeral.  The rest of us sat and chatted, and remembered Dad, and then we ate and talked about 'normal' things too - things that weren't about death and dying, or the people we've struggled with through the whole process, or the difficult aspects of Dad that were ignored in the wake remembrances.  We enjoyed being together and being a family, and you know, since then we've perhaps had more contact with each other than we had before.  Maybe it won't last, but at the moment it is good, and that is the positive that's come out of Dad's death.

It's complicated

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

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

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

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

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

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

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

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

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

Getting back to it

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Lurgies

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

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

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

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

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

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

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

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

Christmas and all that jazz

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

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

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

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

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

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

Anyway, Christmas Day was lovely.

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

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

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

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



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

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(

Ninety nine per cent

Ninety nine per cent is how certain the rheumatologist said he was that I have fibromyalgia (see my post 'Something else').  However, he had x-rays done and bloods taken just to check that one per cent of possibility that it could be something else causing my pain.  There are many things that can cause some symptoms similar to Fibromyalgia Syndrome (FMS) that can be picked up in blood tests, including hypothyroidism and vitamin D deficiency.  These are two of the things I was tested for.

The results for hypothyroidism came through clear, which I was expecting as I've been tested for this a few times, most recently before Carpal Tunnel Syndrome surgery.  What I wasn't expecting was for the vitamin D level result to show that I am severely deficient.  My GP told me that vitamin D levels are supposed to be between 75 - 100 nmol/l, but my result came back at 16 nmol/l.  With this severely deficient level and some changes seen on my x-rays I have been diagnosed with osteomalacia, which is the adult equivalent of rickets.

Rickets, and the tell-tale bow-legged appearance of those with it, occurs in children before the bones' growth plates have sealed, but once these have sealed and growth has stopped, the diagnosis is osteomalacia, often (and in my case) with multiple fractures and pseudofractures throughout the body.  This certainly explains some of my pain and tenderness.  In fact, vitamin D deficiency may well explain the terrible cramping I've had in my hands and feet, the muscle weakness, the lethargy, fatigue, and exhaustion I've had in addition to that caused by the POTS I already have.

As severe vitamin D deficiency can cause problems with bone density, and I am already at risk of developing osteoporosis because of the long-term high-dose steroids I take, I have been referred to have a DEXA scan.  The appointment has come through for 21st January.  I've had them before, but my last one was two or three years ago, so it's definitely time it was done again.

In addition to all this, I had another letter from the rheumatologist saying that the x-rays of my hands show the possibility of 'an arthritis'.  He hasn't specified what kind of arthritis, just saying that I have some 'bony cysts' and that 'closer studies are needed.'  I have to have a CT scan of my hands next Monday (14th January), and then I suppose I wait to hear of the results from that before any firm diagnosis is given.

I guess that any treatment for arthritis might depend on the type of arthritis it is, if it is.  The treatment for osteomalacia and severe vitamin D deficiency is, not surprisingly, high doses of vitamin D.  The prognosis for osteomalacia is pretty good if the right treatment is given, and the fractures throughout my body should heal in three to six months of high dose vitamin D treatment.

However, there is a problem (isn't there always?).  It is proving incredibly difficult - actually, impossible at the moment - to find a preparation of high dose vitamin D supplement that doesn't contain something else to which I am allergic.  My GP has written to my immunologist for some advice, although this perplexes me somewhat as I'm not sure that he'll know anything more about vitamin D preparations than the GP.  I'd have thought that pharmacists would be the folk to talk to, and that, if necessary, pharmacists would be able to make a preparation of vitamin D especially tailored to my needs.  The thing is, that while the GP and I wait for a reply from the immunologist, who may not have any answers anyway, I'm not getting any treatment, and I presume my deficiency is getting worse.  Mind you, I don't know how long it takes for these levels to decrease.

The other thing I'm not sure about is whether I'll have to undergo any investigations to discover why my vitamin D levels are so low.  I know that anywhere north of Birmingham doesn't have enough UVB sunlight between October - April for anyone to produce adequate vitamin D, but most people store up enough through the summer months to see them through the winter.  Also, my blood tests were done towards the end of November so I still had most of the winter to get through, so what are my levels going to be like by April?

Of course, all of this leaves me not knowing if I do actually have fibromyalgia as well, and my GP says we won't know for sure until I've been successfully treated for the osteomalacia/vitamin deficiency for six months.  In the meantime I'm still taking the powerful meds for neuropathic pain whilst not being sure that I need to.  I'd rather not take them if I don't need them, not least because they make me so dopey that if I need to get up in the morning then I can't take the full evening dose.  I'm due to go back to my GP for a review of these meds, with a view to raising them further, but I think I'm going to suggest that I don't take them until it's proved that I need them.  After all, they haven't actually helped ease my pain anyway.  The problem, though, is managing to wake myself up in time to make that 8.30 am phone call needed to get an appointment with the GP.

Something I will probably never know the answer to is whether the rheumatologist in part made his 99% certain diagnosis of FMS because of my scars from self harm, the 'newest' of which is ten years old.  It would seem that however many years pass from those terrible years of self-hatred, self-destruction, depression, and suicidality, I will most likely always be judged on them, and they will always influence doctors who treat me for whatever reason.  I wonder how surprised the rheumatologist is that his 99% certainty has proved to be wrong.