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.

Relentless

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

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

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

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

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

Hard times

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

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

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

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

Going back

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

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

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

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

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

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

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

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

Overwhelmed

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

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

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.

End times

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

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

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

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

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

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

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

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

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

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

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

Very briefly

I am in hospital. I've been in ten days now, with a week in Intensive Care. I am mending, but still pretty poorly and completely exhausted. At the same time my dad is in a nursing home four or five miles away. He is dying. His wife and my brother have been called to his bedside this morning. He is in the final throes of life and death. I can't be with him and I can't say goodbye.

It's complicated

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

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

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

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

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

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

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

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

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

Longer than expected

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

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

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

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

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

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

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

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

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

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

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

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.