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.

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.

Lurgies

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

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

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

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

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

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

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

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

Christmas and all that jazz

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

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

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

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

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

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

Anyway, Christmas Day was lovely.

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

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

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

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



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

Telling it as it is

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

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

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

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

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

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

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

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

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

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

A little bit of a few things

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

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

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

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

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

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

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

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

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

Stability

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

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

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

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

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

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

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

Heart of the matter

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

Re-engaging

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

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

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

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

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

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

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

Coming out of the hodpits

I sent a text to my mother this evening in which I somehow misspelled the word 'hospital' as 'hodpit.'  On reflection I thought this rather a good word that well describes the hospital-induced grumps, so I've decided to adopt it as such :o)  Today has been a better day as far as the grumps have been concerned, so it could be said that I'm coming out of the hodpits :o)

One of the cheerier things about today has been the registrar saying that, providing I feel well enough, I can go home tomorrow!  She initially said we'd see how I went over the weekend and think about it for Monday, but I then suggested Saturday.  It turns out that my liver function tests (LFTs) went somewhat awry when I was on antibiotics for the chest infection (the doc didn't explain any further than this, but I think I'll ask out of interest), so they took blood again today to check that things are back to normal with that before they give me the final okay for home tomorrow, so I have everything crossed.

Although I haven't slept well for a few nights, with difficulty getting to sleep more than anything else, I had a slightly better night last night.  I didn't get to sleep any earlier, but I think I slept more deeply once asleep, and I was left to sleep on in the morning as well.  I suspect being a little less tired has helped me to come out of the hodpits too.

W and I had been planning to go to a fireworks display this evening, but of course I wasn't able to go in the end because of still being in hospital.  W almost didn't go herself, thinking it would upset me that she was able to do something she knew I wanted to do, but in the end she did go and I'm glad she did - there's little point us both missing out on the fun.  Anyway, W videoed most of the display on her camera and we watched it together on my laptop when she came to visit afterwards.  The other thing we did was light sparklers in the hospital garden.  I was sat there in my pyjamas and a blanket in my wheelchair, twizzling sparklers, waving them in the air, and calling out, 'hello' to all who passed by.  It was great fun.  Here's a very rare photo of me with sparkler in hand in the hospital grounds:

W also had sparklers, but she didn't join in the calling out of, 'hello' to strangers, though I think she enjoyed mine.  I certainly had fun, and it definitely got me out of the hodpits :o)

Briefly

Very briefly dropping by to say that I'm home :oD I was discharged on Thursday late afternoon, despite feeling as though I may have been starting with a chest infection. The CT1 (SHO as was) said that I could stay if I wanted to, but I was determined to come home if at all possible, so I have been allowed to escape providing I got in touch with either them or my GP if the chest infection warning signs got at all worse. I promised I would. And first thing on Friday morning I was phoning my GP surgery for an appointment as I was producing pondlife :o( I'm okay, but I'm lurgified, and that seems grossly unfair. However, I now have PLECs - Pond Life Extermination Capsules - aka antibiotics, so I'm hoping they'll do the trick. While I was seeing the GP I asked about a short course of furosemide to help the water retention, and she was okay with that. I have to have my bloods done anyway (to check thyroid function and a diabetes screen, because of the possible carpal tunnel syndrome), so she's going to add on a renal function screening, although she could see from tests I had done in hospital that they appear to be okay. She was lovely. I hate my body, and I hate having it examined, but I knew she had to assess the oedema for herself so I let her and she put me at ease, and I was able to show her that although I'm far too big anyway, the *huge* pockets of fluid are not normal. She agreed. She was gentle while she examined me, but she could also see how tender I am, so she has given me a week's course of furosemide to help alleviate things. I have to go back to see her next week, partly to see how things are regarding the fluid retention, and partly regarding the chest infection. I hate that I seem to spend most of my life in hospital and doctor waiting rooms, but it really helps when the medics I encouter are so lovely.



By the way, I have a story to tell about a spider, but I'll get back to you with that next time.

Next!

At the moment I feel as though I'm spending most of my life sitting in doctors' waiting rooms. As you know, a couple of weeks ago I had an appointment with an ENT consultant to see if they could help with the chronic dizziness and imbalance that I have due to the POTS. They can't. I was only in the room for five minutes max, during which time the consultant seemed rather perplexed as to why I might need his help... He got a little excited when he asked about the tinnitus that I get and as well as it being in my ears it's often in the middle of my head. I know this is also due to the POTS, but suddenly the consultant wanted an MRI scan of my head to check for any anomalies in my brain! I've got an appointment through for this at 6pm this coming Friday. I'm not expecting there to be any problems, and it all seems a bit pointless as I'm sure the tinnitus is being caused by the POTS, and also, that's not why I went to see the ENT doc and I'm no further forward with any management of the dizziness and imbalance. Okay, so neither are related to my ears, but ENT docs deal with people all the time who are dizzy and have rubbish balance because they do have problems with their ears, so surely they must have ways of managing it???

Tomorrow morning I have an appointment with my asthma consultant. There won't be any miracle cures, but I'm hoping there might be some suggestion at least of what's making my lungs so grumpy at the moment. They've never really settled after my last admission and I haven't had a decent night's sleep since I got home. I got a chest infection shortly after coming back home, but I'm pretty sure the antibiotics the GP gave me cleared that up, although I'm still coughing up some nasty stuff (I won't go into detail, which I'm sure you're very pleased about). I dunno, maybe there won't be anything Dr H can suggest tomorrow, after all, it's probably 'just' my lungs being their usual stroppy selves with no discernible reason, but maybe... The other thing I'm hoping for tomorrow is that Dr H will be able to give me some idea of when my portacath op will be. It'd be good to know roughly when it might be so that I can plan the summer a bit, because at the moment I can't really put anything definite in the diary, and I'd like to go up to Edinburgh to some of the book festival at the end of August if possible. Dr H won't be able to give me any exact timing as he won't be doing the op - that's going to be Dr G at RVI - but he may know roughly how long I'll have to wait.

So that's two hospital appointments with consultants and one for a scan. I was also at the General Hospital on Saturday evening, although this was to see the out of hours doctor. I'd seen my GP at the beginning of last week because I had pain in the veins in my right arm and it felt like it was burning inside. It started in my hand and was really tender, and the GP thought that maybe it was vasculitis, but seeing as that morning I'd just taken the last dose of antibiotics for the chest infection she didn't want to immediately give me any more, and I'm already on high dose steroids for the asthma, so she said we'd see how it goes, but told me to go back if it got any worse. Well, it got worse, and while I thought I'd be able to hang on until after the weekend it was getting increasingly painful, and I was starting to get neuropathy in my hand. The pain, inflammation and swelling was also spreading up my arm, so that by Saturday evening it was two thirds of the way up my forearm. A GP friend of mine said that I ought to get it looked at so after a bit of procrastination I phoned the out of hours doctors service to ask for advice, who also thought that the doc should see me. The OOH docs are at the General Hospital, so I was given an appointment for 9pm and I duly took myself up there, where the doc agreed with my GP that he thought it was vasculitis, and seeing as it was now several days since I'd finished the antibiotics I'd for my chest infection and now my arm was getting worse he gave me a prescription for some more antibiotics.

On Monday morning I woke up with conjunctivitis in my right eye, so I then had to get an appointment with one of my GPs. When I phoned up there were no appointments left with any of the docs in the practice so I went on the waiting list in case of any cancellations. I wasn't very hopeful as I was told there were a few people ahead of me on the list, but I did in fact get a call back and got to see the doc in the late afternoon/early evening. He gave me the drops I needed for my eye, but also had a look at my arm and decided that he'd give me a second lot of antibiotics for it to take in addition to the ones the OOH doc had given me. I have to say that I took the opportunity to have a little moan about feeling like I'm physically falling apart at the moment. I wondered if there was any connection between the various decreptitudes, but he said he didn't know, and he didn't suggest trying to find out ... not that I'm sure what 'trying to find out' might entail ... I'd just like all the bits of me that aren't working properly to start working properly, and to keep working properly.

Oh yeah, and I was also at the GP seeing my regular doc on Wednesday or Thursday last week. This at least was a planned appointment - a check on the ivabradine I take for my heart rate. We've gradually been increasing the dose, but we have to do it slowly in case it causes my BP to fall, which wouldn't be good for the vasovagal syncope. Thankfully, this time there wasn't any significant drop in my BP when the doc checked it, although he did get a little excited at being able to hear the increase in my heart rate when I stood up (he was using his stethoscope. It wasn't that he suddenly developed the powers of super-hearing). I'm not convinced this is a good thing as that's what the invabradine is supposed to be helping with... Oh well. Anyway, the meds are now at the dose that Dr N at the falls clinic suggested we aim towards - 7.5mg twice a day. I see Dr N in clinic again next week.

I should get out more ... and not to doctor and hospital appointments. Actually, I have been doing some other things, but a lot of my energies have gone into these various appointments, and again illness and physical decrepitudes seem to be taking over.

The ups and downs and ins and outs

Phew, it's been a bit of time of medical things and hospital appointments lately. Last week I went back to the falls and syncope clinic at RVI for another tilt table test, but this time 'in a hoover back', as it was described to me at my previous appointment. It turned out not to be a hoover bag as such, but more of a vacuum chamber that covered my lower body and came up to somewhere around the bottom of my ribs. The test started with me lying flat for five minutes or so, with my bp and heart rate being constantly monitored, and then the bed was tilted to about 70 - 80 degrees. The vacuum was kept off for the first ten minutes, so I was just standing there (the bed has a footplate), although I felt incredibly nauseous and kept retching. The almost-upright bed was at such a height that I was towering above the nurses and the consultant and I imagined that I was going to throw up all over the tops of their heads. Thankfully I didn't, and I'm sure they're even more thankful! Although the nausea had started only a few minutes into the test, I lasted for a total of seventeen minutes, with the vacuum having been turned on after ten minutes. The last thing I remember saying was, 'I think I'm going to go.' I was right. I passed out and came around with the bed flat, the vacuum chamber removed, my legs up on a beanbag and the consultant wiggling my feet. It's bad enough fainting when I'm on my own or even when there are other people around who are just getting on with life, but it's another thing having people stand around, watching, and waiting for you to pass out. It's also not so great when those who have just seen you pass out are really pleased that you have done. The consultant was just a bit too happy about it for my liking ;oP Anyway, he said that my blood pressure 'went ridiculously low, but it was conclusive.' I asked about my BP, and was told that it had gone from 128/70 - text book normal - to 20/0 - barely a BP at all! So the conclusion is that as well as POTS, I have vasovagal syncope. Now the medication I was on for the POTS - ditiazem - has the potential to lower BP so it obviously wasn't a good idea that I stay on it, and it's been changed to ivabradine, another med really designed for angina. I've started on a very low dose, but it's planned that this will be increased in another couple of weeks time, so hopefully I'll see a bit more improvement in my heart rate then, because at the moment it's going faster than it was when I was on the diltiazem, though still slower than it was (most of the time) before any medication. So that's where I'm up to ... or down to ... with the falls and syncope clinic, and I'm due back in 11 or 12 weeks.

On Wednesday I managed to dislocate my right shoulder. I don't recommend it. It hurts. I managed to get it back in myself by holding my right wrist with my left hand and swinging my arms at a weird kind of angle. I just did what it felt like needed to be done, and thankfully it worked, though the pain of it going back in caused me to pass out, but I was expecting this as I did the same thing about 15 years ago, so I was standing next to the bed while I did this so that I had a soft landing. It was still very sore and movement was restricted, but I thought I'd see how things went. In the end though I went to A&E to get it checked out and x-rayed. I'm pleased to say that it was fully back in place and in the right place, and that there was no fracture. The nurse was about to put a sling on me, but I wondered if my shoulder was likely to better more quickly if I keep using it. The nurse that to an extent that's true, but to keep the sling because I'd probably find that I need it to rest my arm for several days at least, and it'll take about six weeks for my shoulder to heal properly :o( I did take the sling, and I'm glad that I did because my shoulder's been very painful and resting it has helped a little, although it's very inconvenient, especially as I'm right handed. Anyway, I'm using it a lot and my asthma consultant yesterday said that he'd recommend using the sling all the time for a week or so, but then start mobilising it a bit more so that it doesn't seize up. That's what I'm doing.

As I've just mentioned, yesterday I had an appointment with Dr H, and of course the main thing on my mind for this appointment was the result of any conversations he'd had with Dr G about the possibility of portacath, as I talked about here. Dr H said he'd spoken to both Dr G and Dr K - an ITU consultant who knows me very well, and that initially both were taken aback by the idea, but when they went on to discuss it further they could see the positives and all have decided that it can happen. They do all have their concerns, most importantly my MRSA positive status as the portacath obviously goes straight into the bloodstream so any infection is potentially extremely serious. There is one proviso, and that is that the port is never used in A&E, because they're not trained in using them. It can of course be used on ward 29 and also on emergency admissions at RVI as one of the nurses from the respiratory ward there (wd 52) can come, and they're as experienced as the staff on 29 because they deal with a lot of CF patients. Dr H had been going to suggest that the op be done very soon, but we're having to wait now until my shoulder is better :o( Apparently ports are usually put in the left side, but sometimes they have to go in the right if the docs can't get into the left well enough, and Dr H didn't want to get me all geared up for it only to have to postpone it because we couldn't move my arm into a suitable position. He said he'd email Dr G and let him know what the plan is, and that it'll likely happen in July/August. I'm disappointed that it's being delayed by my shoulder (though I understand and agree with the argument), but I'm 'pleased' that the portacath is going ahead ... pleased in an odd kind of way, because it's not something that one really wants to have to be pleased about.

I told you in my Head-spin post that the ophthalmologists have agreed to remove my cataracts, but that by the time my appointment had finished all the 'dates people' had gone home, because the clinic was running three hours late! I was told that I'd get a letter in the post with an appointment, but I still haven't heard anything so I phoned them up today. They still can't give me a date as I'm down to have the op done by the consultant. I don't really understand why this means they can't yet give me a date, but they did say that it's likely to be mid-June that I have the op. Although this is a couple of months wait it actually fits in quite well with other things that are going on, like my OU course that's due to finish on 27th May, and a few days away with W in the first week of June. There might even be a little bit of recovery time between the first cataract op, the portacath op, and then the second cataract op.

Off on a tangent of ins and outs... I can't drive for a few days because of my shoulder so I had to get a taxi to my appointment with Dr H yesterday. I ordered the taxi at 8:40 thinking this would give me plenty of time to get to my 9am appointment. I went to wait for it outside, sitting on the garden wall, and I waited, and I waited, and I waited some more. I was getting a little frustrated when it hadn't turned up by 8:55am and was about to phone the taxi firm to ask where the cab was when the car pulled in and flashed its lights. I got into the car, and said where I wanted to go. The driver looked at me. She looked rather scared. Then I realised that I wasn't sitting in a taxi, but in a random woman's car! 'You're not a taxi, are you?' I said. She shook her head. 'Um, okay ... I'll be getting out, then...' I mumbled in a very embarrassed hurry as I clambered out and attempted to appear unruffled. I ambled back to the wall, sat down again, and realised that the poor, now traumatised lady, had pulled in and flashed her lights to allow another car to pass. Oops.

Testing times

The last couple of weeks have been something of a challenge, which is part of why I haven't updated my blog.

It started with a standard review appointment with my asthma consultant, who described my asthma to a medical student as 'terrible' and then made the usual comment that there's nothing more we can do at the moment. In a last ditch attempt to try anything we thought we'd maybe give tiotropium a go seeing as it's probably the last thing we haven't tried to date. This would have to be in place of the ipratropium nebules as they're very closely related drugs and there's a significant increase of risk of side-effects such as glaucoma if used in conjunction. It was a gamble, but a gamble worth taking. It didn't work out though, and although it would've been nice to have been able to cut down on the time I spend using the nebuliser, and the generally quantity of medication I take, my lungs didn't like the change and began to go downhill. My consultant has gone on holiday for a couple of weeks so wasn't around when I called his secretary to explain the situation and get the official say-so to go back to my old meds, but she spoke to one of my consultant's colleagues and they've given that say-so.

The day after my appointment with the asthma consultant I had an appointment with my POTS consultant at the falls and syncope service. I had a huge number of questions for Dr N, and managed to get through most of them, although some of the time was taken up with questions to and from three medical students who were sitting in on the consultation. On the whole, I don't mind med students coming in, because they have to learn and they're going to learn best by having patient contact. There's been one occasion I can think of where I've requested a preference not to have a student present, but that was because I'd wanted to discuss a sensitive issue that might have needed some explanation to the student, and I didn't want to go into it. Anyway, this time I had no objection and it meant that the three third years learnt a little about POTS. As I'm still passing out a lot Dr N decided that it'd be a good idea to get a tilt table test done, and before I knew it I found myself being strapped to a bed and tilted to an angle of 70 degrees. The plan had been to leave me for thirty minutes and if I didn't pass out by then they'd give me GTN (this is supposed to make you more sensitive to fainting, or something), but I'm allergic to nitrites so I can't have GTN so they changed the plan to a forty minute test without GTN. After 6 minutes I was feeling really nauseous. After 13 minutes I was throwing up and almost out. At 13 1/2 minutes the test was stopped. In addition to the POTS diagnosis they've now also given me the vague diagnosis of vasovagal syncope, which basically means that I faint, so it's not a very informative diagnosis really. However, because I didn't actually reach the point of passing out, but was only very, very close to it, Dr N wants to repeat the tilt table test. I'm not looking forward to it, especially as, to use Dr N's description, next time they'll 'put me in a hoover bag'!!! Er, great... Apparently this will reduce the test time from 40 minutes to 20 minutes, but to be honest I can't see the use in this seeing as I only lasted 13 minutes last time.

The following few days were doctor-/appointment-free and on the Monday evening W and I went to the theatre to a fantastic production of Pride and Prejudice at Theatre Royal. It was great fun, and the company (Theatre Royal Bath Productions) really brought out the humour in the story. We both really enjoyed it, but it turned out that we also both picked up a cold while we were there. I had to do what I could to ignore feeling coldy and grotty and the ensuing lung-grumpiness as I had another late essay to write for my OU course. I eventually got it done and sent off into the ether towards my tutor on the evening of Wednesday last week, but then proceeded to feel grottier with the cold. Miserable.

The next day I had an appointment for a sight test at the optician - the 'usual' optician, not the hospital optician I go to every six months. My prescription has changed again (though not by much), but I'm not getting new lenses just at the moment because the optician says she thinks my cataracts are now at a stage where they need removing. Things have been getting cloudier/mistier and the light scattering has been getting worse, so I knew that the cataracts were getting denser even if maybe not all that much bigger. I know the cataracts themselves are still pretty small, but they're dead central so interfere with vision significantly, and I've been aware that the one in the right eye is definitely getting worse. The optician wrote a letter to my GP suggesting a re-referral to the opthalmologist and I now have an appointment with them for 1st April. The thing is that last time i saw the opthalmologist she said that she'd be extremely reluctant ever to operate on my cataracts because of the risk of the anaesthetic on my asthma. She said that there's even a risk using local anaesthetic so really wouldn't be keen to do the op. But I'm not keen on going blind, and personally I'd rather take the risk, especially as I know that Dr H (my asthma cons) can give advise and be involved if need be. I have a whole host of thoughts and emotions running through me with this ... I don't want to go blind so I want the cataract removal op; I don't want to die from asthma so I'm nervous about the risks to my lungs; I don't want to have cataracts in the first place and I slightly resent the steroids I take for my asthma that have caused them in the first place; I don't relish the idea of any kind of surgery, full stop; I'd love the world to be clearer again and know that once the cataracts are removed then there's almost zero chance of them returning (the only possibility would be if they didn't remove every little scrap of lens). I'm nervous, impatient, anxious, excited (at the prospect of clear sight, not at having surgery!). Very mixed up.

At around 3am I woke up with my right eye stuck together and I immediately knew that I'd picked up conjunctivitis, most likely from the optician. I got up, gave my eyes a bit of a clean so that I was a little more comfortable, but they still continued to dribble their nasty gunk, and as the night went on the gunk got gunkier and my eyes got sorer. The right was definitely worse than the left, which would fit in with the optician having fiddled more with my right eye as she had a good look at the cataract in that eye. I phoned the optician in the morning just to make them aware, rather than to complain, but they were ever so defensive saying that they'd had no other complaints and it was 'probably just a coincidence'. I'm still sure I got it from there, and I wasn't really complaining, just telling them so they could make sure their equipment/opticians are clean and infection-free. Anyway, I ended up heading up to the walk-in centre for some chloramphenicol eye drops, so that was another medical contact. Drops in hand (well, drops in eyes really ;oP ) I went home to gather my things before taking myself up to Edinburgh for the weekend. I was staying with Mum, getting a bit of much-needed TLC and was planning on meeting up with a couple of OU friends, one of whom I'd never met before and was visiting Edinburgh from Portland for the weekend.

It was lovely to get some parental cossetting, especially while I was feeling so yuck with the cold, conjunctivitis and increasing lung-grumpiness. The lung-grumpiness was getting worse though and I started to produce pond life so on Sunday morning I ended up phoning NHS24. I needed some antibiotics before things got too nasty. I have to say that both the people I spoke to on NHS24 were very good and responsive, taking my medical history on-board with appropriate significance. Within half an hour I had an appointment with the out of hours doctor at the OPD at Edinburgh Royal Infirmary, so Mum, J (step-dad), and I got ourselves together and took ourselves off to the ERI. Again, I was impressed by the thoroughness of the doc (an experienced GP and out of hours doc), and appreciated his concern and reluctance to just prescribe some antibiotics and send me on my way, even though I didn't want to end up round the corner in A&E. The doc had taken a history from me and was subsequently aware of my potential to crash with my asthma, so he phoned through the medical registrar, explained my situation and discussed the best plan of action. He then called for a porter and I was trundled round to Immediate Care in A&E, where I was examined, x-rayed, jabbed with a cannula, had bloods taken, and nebulisers given. All the staff were lovely, and the doctor was very on the ball, and clearly concerned, though I think more by my history than by my presentation. He said that at that point I was 50/50 for admission, and I think that I had I not had my parents with me then he would definitely have admitted me. Even with them there he was very reluctant to let me go, and it was only after a few hours of observation that I was allowed home. I didn't feel great, but I didn't feel as though I needed to be in hospital, and with antibiotics now in hand things should settle. Settling grumpy lungs can be a bit of a long job though and they're still not very happy. In fact, today I've been barking like a seal :o(

I was back at the doctors' surgery yesterday too, because out of nowhere at around 9pm on Tuesday evening I started having intermittent waves of excruciating stabbing pain in my stomach/liver area. The GP made sure it wasn't pleurisy, which she said in my case is considered an emergency (!). Thankfully it isn't that, but I didn't think it was anyway. Other than that though she seemed a little uncertain as to what it is, but options include an ulcer (which would probably be medication induced), chest wall inflammation, or muscular (but it doesn't feel muscular). The plan of action is a passive wait and see if it settles on its own, and she's given me some pain killers. It is a little better than it was, though it hasn't gone yet and I'm dosing myself up when I can. I'll see how it goes over the weekend, and I'm hoping that it'll be much improved by Monday, whatever it is. I've had an ulcer from some of my meds in the past, and although the pain is presenting differently, it's a similar type of pain, so I wonder if this is another ulcer. Even if it is it could heal itself so I'll see, and I'll hope.

Today has been a pyjama day. I've done very little, barked like a seal, wheezed a fair bit, done an hour and a half's study, felt guilty about not having done more study, but not guilty enough to actually get productive. I will get down to it. I have to. I've got several weeks to catch up on, but on a positive note, that essay I mentioned earlier, I got 88% for!