Long overdue

Gosh, I hardly know where to begin.  I've been wanting to update you for such a long time, but it's been an extremely difficult and traumatic few months.  Five months.  Gosh, it's five months since I last wrote here.  I can't possibly tell you all that has happened in that time in one post, so I shall just aim to cover the immediate period following my last post.

I started the betamethasone a few days after last posting here, while I was still in hospital so they could watch for any immediate difficulties, and we did a straight swap from 60mg prednisolone to 9mg betamethasone.  Thankfully the swap was uneventful and I was able to go home a day or two later.

It very quickly became apparent that I was absorbing the betamethasone very differently to the prednisolone.  The first noticeable difference was that I was bouncing with energy.  It was a false energy that I did know from previous very, very high doses of pred, but never to that extent.  I easily managed on four hours of sleep a night, and this was immediately after the admission when I knew that my body was actually exhausted and needed rest, but I couldn't.  I was bright and was eager to get on with a big declutter of my flat, starting with the bedroom.  Every day was filled with sorting through everything in my bedroom - in the desk, in the wardrobe, under the bed, in files I hadn't looked in for years.  I shredded years of old diaries, bank statements, old business paperwork; took bags upon bags of things to the tip; donated at least nine black bin bags full of things to the charity shop; cleaned the whole room to within an inch of its life; a friend ended up redecorating part of the room for me; I dismantled furniture and constructed new Ikea furniture; and then I started on the living room.

It was very hard work, but I had the energy so I got on with the decluttering while the energy lasted, because I knew that as the dose of betamethasone was weaned down the energy would begin to falter.  Of course the activity made me sweat, but I sweated excessively, even sitting shredding hundreds of pages of paper a few sheets at a time would soak my clothes through with sweat.  But whilst I was sweating, and sweating, and sweating my body was swelling, and swelling, and swelling with fluid. However much furosemide (diuretic) I took it did nothing to rid me of the excessive oedema, and I was/am on a huge dose of 120mg twice a day.

Then there was the hunger.  Of course, using a lot of energy with activity meant that I needed more energy in the form of food, but not that much more, and my hunger was excessive for the energy I was using.  I tried not to give in because I am already far too overweight and in desperate need of losing some, but it was incredibly difficult.  My hunger was never satisfied.  I could eat what I knew to be a normal-sized meal and I would feel as though I'd had a micro snack.  I could eat what I knew to be a big meal and I would feel as though I'd perhaps had a light spot of lunch.  It was awful to be permanently uncomfortable with hunger yet seeing the weight pile on, which combined with the excessive oedema to change my appearance significantly.

My face, my huge moon face, lost all definition.  My nose shrank into my ever growing cheeks, and my chin and jaw were lost to the depths of my neck.  This look is typical of someone on high dose steroids, and it is rightly named because the face becomes spherical like a full moon.  Yes, I have been moon faced for many years, but never to that extent, never to the extent where it felt like a facial disfigurement.  A whole body disfigurement with the extra weight and fluid too.

The disfigurement continued because my skin couldn't keep up with the rate at which it was needing to expand, and my whole torso, tops of my arms, and tops of my legs have become covered in huge, ugly striae.  These are essentially stretch marks, but they are so much more than stretch marks.  They are deep purple and red lines, some as wide as three or four centimetres, almost looking like huge lacerations snaking their way up my body and down the backs of my arms.  The skin is so thin that in places I can clearly see the fine veins below.  Sometimes they split and I bleed.  They happen quickly too, so quickly that I feel them happening - the fibres of my skin ripping apart, forever damaged, and now that I've lost a little of the weight again, the skin hangs limp, wrinkled, flaccid, separate from the tissue below so that I can pull it with my fingers like stretched chewing gum and just about see my fingers through the two layers of skin pressed together.



This is not me, but it may as well be.  This is what my torso looks like, except that the striae on the front of my body go all the way up to my breasts.  It is at least a disfigurement that I can mostly hide under clothes, except those at the tops of my arms and the top of my chest that often peak out from under my T-shirts.  Of course, there is no hiding them from a medic when I am examined, and although I warn them, and they are used to seeing such things, I still see the shock flicker across their face before professionalism hides it again.

I am told that over time the colour will fade, but I know that the skin will not, cannot, repair itself, and although they may become silvery, they will always be visible.

The plan was to try to reduce the betamethasone dose fairly quickly so that I could try to get to a more normal prednisolone-equivalent dose.  I was nervous about doing this because of so many failures of dose reduction with pred in the past, and the resultant life-threatening asthma attacks, but given the rapid destruction of my body I was willing to try.  In some ways this was made easier by the fact that each betamethasone tablet was a much smaller dose than each prednisolone tablet, so my lungs kind of didn't notice the reduction so acutely (although it also meant that to begin with I was taking eighteen betamethasone tablets each day!).

I thought that the quicker reduction in betamethasone dose would mean an equally rapid reduction in side effects, but in actuality, the only one that did subside as quickly was the false energy.  That was actually something of a relief, because while it was good to be living more in the same time zone as everyone else around me, I could feel that my body was, in reality, completely exhausted.  But one side effect that actually continued to increase was severe weakness in my thigh muscles in particular, but other muscles too.  I quickly became unable to stand from a chair without pushing off something, and if I ended up on the floor (as is the wont of someone like myself with POTS) then I was basically stuck until someone could help me up or I could somehow clamber onto my footstool and from there shuffle onto the sofa, where I would still have to brace myself for the huge effort and several attempts to get to standing again.

I went to my GP in the end, not really because I expected him to be able to do anything, but simply because the whole combination of all the symptoms, and their rapid progression, was getting to me.  I came away with an official diagnosis of Cushing's Syndrome. Of course, because I have been on such high doses of steroids for such a long time, and because I am aware of their many, many side effects, I have been known about Cushing's Syndrome for a lot of years.  I have known that I have exhibited many signs and features of it at various times to varying degrees over those years, but there was still something rather shocking about receiving the diagnosis.  One thing I have had particular difficulty with is the prognosis as fifty percent of people with untreated Cushing's Syndrome die within five years of diagnosis.  My CS cannot be treated as the only treatment is to remove the cause, which in my case would be to remove the steroids.  Remove the steroids I die either of an asthma attack or adrenal crisis, as my body is now dependent on the prescribed steroids because it can no longer produce any of its own.  I can only hope that I am in the other fifty percent.

Whilst all of this was going on with the explosion of betamethasone side effects and the additional diagnosis of Cushing's Syndrome, another problem was developing.  There was a supply 'issue' with the betamethasone at manufacturing level.  I had been given enough in my initial prescription to keep me going for quite a while, but before too long I needed another prescription.  My local pharmacy was able to honour the first three hundred tablets on that prescription, but that wasn't going to last me all that long, even though I was reducing the dose and therefore eking out the medication.  I managed to get in touch with my consultant's secretary and Dr H wrote a hospital prescription for me that he hoped would tide me over until my local pharmacy was able to source the rest of the meds they owed me.  The hospital out-patient pharmacy had some, but not enough, and they had to do some internal negotiations to borrow from the in-patient pharmacy so that prescription could be fulfilled.  They normally wouldn't be able to do this, but as the problem extended into community pharmacies as well then they made an exception.  However, this was not a problem that was going to be resolved in time for the next prescription, and before too long I found myself with only enough tablets to last about six more days and then I'd be without any steroids at all.  This wasn't an option.

I had been keeping J, my Complex Respiratory Disease Specialist Nurse, informed all the way through as the problem arose and progressed.  He liaised with my consultant, and the three of us ended up having a discussion about it in clinic, by which time I was about three days away from prescription crisis point.  Dr H had to come up with a new plan.

One thing had firmly been established - that I clearly hadn't been absorbing or utilising the prednisolone as I ought to have been, and that I clearly was absorbing or utilising the betamethasone very differently.  This added credence to  the hypothesis that not all steroids are equal, and I needed a different one.

Dr H decided, as I hoped he would, that it would be foolish to go back to a reliance on only prednisolone as it obviously wasn't working satisfactorily.  However, we also knew from the side effects that prednisolone had given me over the years that I had been absorbing at least some of it.  So Dr H started me back on 40mg prednisolone alongside an injection of 40mg IM triamcinolone every three weeks, with instructions to reduce the pred relatively quickly to 25mg.  I wasn't able to reduce it quite as quickly as Dr H had wanted me to, in part because my lungs did notice the reduction, though I did eventually get the dose down to 25mg, and then subsequently to 10mg.  Ideally he would like me to get to 5mg pred, but so many things have prevented further reduction for now.

The other reason I was unable to reduce the prednisolone down to 25mg as quickly as Dr H wanted me to was because I ruptured my Achilles tendon.  Most people get this injury through contact sports, or extreme adventures, or a vicious football tackle, or some other 'exciting' activity.  I did it by slowly walking from my living room to my bedroom.  I did nothing unusual.  I didn't trip.  I didn't fall.  I didn't stand on anything, though I did go back to the 'scene of the crime' to see if I'd trodden on something.  No, I simply stepped forward as normal and then crunch!  Sudden extreme pain, followed surprisingly quickly by relatively little pain, but I couldn't walk properly and it felt 'all wrong.'  Another trip to the GP and I came away with an 'urgent 24 hour referral' to an orthopod at the hospital.  Only this 'urgent 24 hour referral' took almost two weeks to come through.

It transpired that the betamethasone/Cushing's Syndrome has also weakened my tendons and ligaments, and the orthopod took literally two seconds to confirm the diagnosis of a spontaneously ruptured Achilles tendon.  Obviously with my lungs in the state that they are he was extremely reluctant to operate, so it is being treated conservatively - with a moon boot.  For the first two months I had a hard moon boot (like that shown in the link) to wear through the day, and a softer, lighter one to wear at night.  Since my check up in mid-October I have been able to stop wearing the night time boot, but I still have to wear the heavy, cumbersome one through the day when I'm up and about.  Only now I have a matching pair of moon boots, because the stress put on the left leg by the heavy, cumbersome moon boot on the right leg has caused the Achilles in the left leg to tear.  Thankfully it isn't a full rupture, but for the foreseeable future I have a pair of moon boots to go with my moon face and alien appearance of my torso.

This is far, far from all that has happened since I last posted, but it is enough for now.  I will return very soon with a continuation of the update, but as you have now read some of the traumas of the past few months you may be able to appreciate a little of why I have felt too overwhelmed to write about it.  Instead I have been living it and trying to muddle my way through.

Full of busy

Since I got back from Edinburgh I've had a very busy time, which is why I haven't been around on here, but I promise I will try to make time for blogging again.

Last week was my first week back at university after the Easter holidays, and this term I have three modules for my MA running concurrently.  Two of them only have a few weeks left, but they both then have assignments that need to be written.  One of these modules has two pieces of work, but the first is only a short piece of 750 words - a review of an event - and I've done that already.  However, I do need to seriously start working on the longer essay.  I do have a bit of time till it's due in - 6th June - so I'm trying not to get stressed out about it.  The problem is, though, that I can never be sure when I'm going to end up back in hospital, so I can't rely on having all the time until the essay's due in to actually write it.  Alongside that, there're are also the other two modules, and whilst I've done the first draft (and a couple of redrafts) of the piece I'm doing for the novel writing workshop module, there's still a bit to do for it, and there's the entire piece for the Writing for Children module.  I've only just started that module and as yet have only a very basic idea of what I'm going to do for it. I'm looking forward to getting stuck in to it, but it's going to be a challenge, I know that for sure.  The assignment for Writing for Children is due in on 11th June, so you can see that I have a lot to do at the moment.

So I had three classes last week, and each class is two hours.  That might not sound like much, but it's hard work when you're doing it alongside life with POTS and chronic severe brittle asthma, and although I find that writing and studying sustains me, the effort of going to classes can be exhausting.  Overall, it's a great thing, which is why I keep on doing it, but it also means that I'm constantly battling with the conflict of wanting and needing to study/go out, and wanting and needing to rest.  Last week was a week when I couldn't do as much resting as I needed, and consequently I spent a lot of the weekend recovering.

Aside from study, last week, I also had my assessment appointment with the health psychologist.  I was nervous because I didn't want it to end up with the same outcome as when I saw the psychologist at the difficult asthma clinic.  As I've said previously, that concluded with the psychologist giving me a verbal pat on the back for having come so far since I saw a psychologist in the department years ago, and then basically being sent on my way.  This time I needed the psychologist to understand that what I'm dealing with now is a whole lot of different things from what I was dealing with nine years ago.  I needed to get across that the issues I need help with at the moment are issues about now, issues to do with my health and how the lack of health is impacting on my life, the upset of that, and the difficulties of adapting to ever shifting boundaries of limitation that my health is imposing.

The psychologist I saw wasn't someone I recognised, but then it is nine years since I was last going to the department regularly so it's not surprising that some staff have changed.  However, as I've taken part in extensive therapy before I wasn't afraid of actually talking to the psychologist, and found that I was quite easily able to open up and talk to her freely.  I have to admit that I was very surprised at how emotional I got when I was talking to her.  Most of the time I try just to get on with my situation and my life, making the most of what I have, but having the opportunity to talk to someone impartial about all the upsetting things made me very tearful.

One of the things I want to have the chance to talk about is the loss of my hopes and dreams.  I had many.  I've lost most of them.  I've made new dreams and have different hopes, but they don't stop me from grieving the loss of those that I had, and those are things that I need to be able to share and come to terms with.

It was a productive appointment.  As far as a psychology appointment can be good, it was, and I really felt that psychologist I saw got a handle on the issues I'm dealing with and understood their far-reaching consequences.  All through the appointment, though, I was wondering if I was touching all these sensitive issues only to have the psychologist turn around to me at the end and say that she couldn't help.  However, much to my relief, she said that she thought the referral was completely appropriate and that she did think the department would be able to offer me some input.  It may not be with her, but if it was to be with one of her colleagues then she'd pass on everything I'd told her (she took notes while we talked), and it'd only be with her colleague if it was going to be quicker for me to start with them than with her.  Unfortunately all that can be offered is six to ten session, but she assured me that should I need more from them in the future then my GP could re-refer me.  It's a shame that there isn't any on-going support these days like there used to be, but this is a lot better than nothing and hopefully it'll give me a bit more emotional strength to deal with what I have to.

Now the other thing that I did last week, that is totally different from any of the other stuff, is that I had a birthday :o)  I have lived another year beyond my life expectancy, although it's been a challenge to get through at times, as you know.  My birthday was on Thursday, so a university day, and a full one at that with two classes - one in the morning and one in the early evening.  I took a cake into my first class of the day and shared it with everyone, which made it all very jolly, and everyone's papers very chocolatey ;oP  Between classes I met with W and we went to the cinema to see 'The Pirates: In an Adventure with Scientists'.  It was great fun, light-hearted, and just what was needed for an afternoon film showing on my birthday.

On the Friday evening I went to Gibside.  This is a National Trust property on the edge of Gateshead and County Durham.  It's a lovely place, and somewhere I enjoy going whatever the weather, which is just as well because the last couple of times I've visited it's either been snowing or raining.  It was raining on Friday, but it didn't matter.  Every Friday between 6pm and 9pm they keep the walled garden open while the rest of the grounds are closed, and in an area next to the walled garden they have picnic tables and log burning braziers in a beer garden.  They serve beers from a local brewery, Fentimans soft drinks (also made locally), cakes, snacks, and ice-creams.  They're all sold from a little hut, which unfortunately isn't directly wheelchair accessible, but when they saw that I was sitting out in the rain they came and said that if I wanted to go inside they'd open up the main shop as there's a way through that to the rest of the hut.  As it was I was fine because we were sitting under a huge picnic table parasol, and not far from one of the braziers so it wasn't too chilly.  The rain also eased off a fair bit while we were there and at one point we had a gorgeous double rainbow.  I'd post a photo of the rainbows except that I haven't actually downloaded them onto my computer yet.

I'd invited a fair few people to join me at Gibside, but I left it a bit late to ask, and actually a lot of folk were away at various different places.  However, several people were able to come and I think all had a good time.  I know I did :o)  I don't think any of those who came had been to the Gibside beer garden before, but I think it is somewhere we might all end up again, though perhaps on a slightly less soggy evening.

As I mentioned before, I didn't do a huge amount at the weekend as I was recovering from the busy week I'd had.  This week has so far seen me back at university, doing some of the homework I've had from university (I still have some to do), an appointment with the physiotherapist at the hand clinic, two trips to the dentist as I had a filling fall out on Friday afternoon, and a quick visit to ward 29 for a portacath flush.  Not exactly a relaxing or fun-filled time, but all necessary.  I still have another two classes at university to go, more homework before tomorrow afternoon's class, and a follow-up appointment with the surgeon at the hand clinic.  Thankfully, I have a nice day with W planned for Saturday, so that will redress the balance somewhat :o)

Right then, I'd better get myself to bed or I'll never manage to get myself up in the morning in time for my class, which this week is an hour earlier than usual as the tutor has to go and host an event at the Hexham Book Festival in the early afternoon.  I wish her luck, but I so wish I could have that extra hour in bed ;o)

A mixed bag

Once again I apologise for my absence.  It's far, far too long since I blogged, but I've actually needed a little bit of a break as quite a lot has been going on.  It's also been quite difficult to type comfortably while my hand has been recovering from the carpal tunnel release surgery.  The recovery hasn't been as straight forward with my left hand as it was with my right, and when I went back to clinic to have the stitches removed the wound fell open.  The nurse put an antiseptic dressing on it, steri-stripped the wound back together, and told me to come back this week to see how it was getting on.  Thankfully, when I went back on Wednesday the wound seemed a fair bit better - at least it was holding together - but it's a lot more painful/sensitive than the other one was, it's still very swollen (to be expected really), and there's a bit of an odd lump at the base of the wound that's very tender.  I've been told that I may need some ultrasound therapy on it from the physios, but to see how it goes over the next couple of weeks and get in touch for physio after that if it's still really sore.  One relief is that I now have the big bandages off, and whilst I still need to wear a tubigrip support bandage sometimes, I'm generally much more dexterous again, and typing isn't anywhere near as painful as it was.

This time of absence has been very mixed aside from the slight anxieties of my hand not healing brilliantly.  Very sadly a friend from church died suddenly and unexpectedly at the end of March.  It's been quite a shock.  It doesn't matter that she was seventy years old - that's no age at all these days - she was a lovely person who always went out of her way to find out how I was doing, even though things weren't always straightforward in her own life.  It's her funeral on Tuesday, but I won't be able to go as I'm up in Edinburgh at my mum's for a bit of a break.  I'm sorry not to be going to celebrate J's life at her funeral, but I will have some quite time of contemplation and remembering her on my own on Tuesday afternoon, and if I get a chance to get to the cathedral sometimes while I'm here then I'll light a candle for her.  Rest in peace, J.

This past week has also seen the first anniversary of my step-brother's suicide.  It was a year ago last Tuesday that he went missing and killed himself and three days afterwards that he was found.  I've thought about him a lot.  I've missed him.  I've thought about my step-sister A and my step-brother N (Nn's sister and brother) a lot.  It's still all so very sad and tragic.  W came round for a bit on Tuesday evening to keep me company :o)  That was lovely.  We had a quiet evening doing cross-stitch and eating chip shop chips with baked beans added at home.  An evening of comfort food and comfort activity :o)  Just what I needed.

Not everything has been sad though.  There have been positives too, which is why I said that it's been a mixed time.  Firstly, there's been the positive of the clocks having gone forward, which means that we've made it through the winter and the long, dark nights that come with winter.  I've been enjoying the lighter evenings and going for trundles in the park to make the most of them.  I went to local park here by my mum's this evening with my step-dad, which was lovely, and it was fabulous that it was still light when we got back at 7pm.

The other excellent thing that has happened since I last blogged is that I have been granted funding by Motability for a wheelchair accessible vehicle (WAV) and a powered ramp for it.  They're not giving me funding for privacy glass in the rear windows as I said it was for security rather than privacy, but to be honest I'm not terribly surprised and I'm actually going to fund this myself.  At first they were being a bit iffy about giving me funding for a powered ramp, questioning why I couldn't manage a gas-assisted ramp, despite my GP having written a letter saying that bending down to deploy and lift a gas-assisted ramp requires a change in blood pressure which I cannot maintain and would very likely be frequently passing out.  One of the cars that I test-drove actually had a gas-assisted ramp, which I'd tried and couldn't manage, and Bill (the guy from the car converter company) had stated this in his report, along with a suggestion that I'd need a powered ramp.  However, Motability insisted that I try it again and laughably suggested that I flick the ramp back up with my foot.  As Bill said after he demonstrated this manoeuvre to me, 'It's nothing that no premier league footballer or professional athlete couldn't manage' ;oP  Again, he wrote on another report for Motability that I would need a powered ramp, and thankfully they saw sense and have granted me funding for it.  I have now ordered my new car - a Citroen Berlingo - and should get it in about six weeks time.  It may be a little longer (possibly up to ten weeks), but Bill was hopeful for about six weeks.  I'm looking forward to it, even though I hate what it stands for and I'm loathed to part with my Vauxhall Meriva, which I love.  The WAV Berlingo is going to open up my life again and that's invaluable.

The only other little bit of news is that I went to falls and syncope clinic again last week and my consultant doesn't think they can do anything for the POTS so I don't have to go back.  I'm not sure how I feel about this.  Yeah, it's good to be free of another hospital appointment, but it's not great that yet again I've reached the end of treatment possibilities ... not that there are many treatment possibilities for POTS.  I don't think I've actually been discharged, so to speak, but rather that there's not a lot of point in me going back at the moment, as the consultant said that I can get in touch with them if I feel I need to or if my GP thinks I need to be seen again.  I guess we'll just have to see how things go.

That's about all my news for now.  Hopefully I'll be back with you again in the next few days.  In the meantime, have a very happy Easter.

Contemplation

If I'm honest, I'm finding things difficult at the moment.  I still enjoy the things that I do, but I'm so tired and get exhausted so easily, it's difficult to stay as positive as I'd like, perhaps because there's so much more that I'd like to be doing.  It also doesn't help that since coming out of hospital I've had to have yet another course of antibiotics, which have played havoc with my insides, so that's added to the grottiness alongside the beginnings of the infection for which the antibiotics were prescribed.

Then there's the whole new car thing.  It's good that there is the possibility of a new car, and it's good that Taz will be able to go into whatever new car I get, but the fact that I need a car that will take Taz is difficult to get my head around because it signifies another decline in my health.  Yes, I know that it will open up my independence again, and that will undoubtedly be good for my mental health, but I find it hard to think that it's come to this, that I have so little mobility now.  It's not just the asthma, it's the POTS too.  It's the combination of the two.  It's all the other bits of me that are letting me down too, and in combination with the asthma and the POTS.  None of this is what I expected from life...

I've been filling in the forms for a grant from Motability towards the cost of a new car and the powered ramp that I'll be needing.  The forms necessarily make one concentrate on all the things that one can't do, nowhere near as much as DLA forms, but still, the focus is on how your body fails you ... and to some degree, what few prospects you have, I have...  Okay, so I'm hoping to be able to develop my writing, finish writing the book I've started about my experiences of asthma and hospital, get published, but what about all the things in life that I'd hope for ... like family, children.  That is the biggest sadness for me - that I don't have children.  I always imagined, and hoped, that I'd have maybe four children and a loving husband, but instead I have no children and no hint of a relationship.  I might not be the most physically attractive woman on Earth, what with being overweight, but I'm not the ugliest either, and I think I probably have a lot to offer in personality, but the truth is that chronic illness and repeated near-death is not attractive.  That is something I can do nothing about.

There are so many things that I would love to have done and would love to see as possibilities in my future.  So many things that there's no way I'll do.  The impact on my life of the asthma and everything else has been enormous ... devastating in some respects, even though it's given me different opportunities as a result of having lost the chance of some many other opportunities.  It's tough.  Most of the time I get on with it, and I appreciate all the things I can do and all the things that I do have, but sometimes the reality of the losses hits hard.

Some time ago now I asked for a referral to the health psychologist attached to the difficult asthma clinic run by my consultant so that I could have some support for the impact that the asthma has had on my life.  After a long wait I had the assessment meeting, which I had to go to from the ward as I was an in-patient at the time.  I wasn't feeling great either physically or emotionally, but as I knew that I'd have the rest of the admission to get through, I had to hold myself together to a certain extent, which perhaps didn't do me any favours.

A lot of years ago now I suffered from terrible, debilitating depression, and for nine years of that time I saw a clincial psychologist from the health psychology department.  L was incredibly patient with me and a fantastic support, seeing me through the worst depression of my life, and ultimately all the way through the other side of it.  I had come through a lot, somewhat unexpectedly.  But the things that caused that terrible, awful, horrendous depression weren't the things of chronic illness.  Unfortunately, the health psychologist attached to the difficult asthma clinic didn't recognise that.  She had read my notes from all those years ago and saw how far I'd come, without any acknowledgement of how my physical health has deteriorated since then, so I got a verbal pat on the back for having come so far and sent on my way with no offer of support.  It was far from satisfactory, and it also surprised both my GP and my psychiatrist.  The psychiatrist has said that I don't really need the psychiatric services any more as my mental health is generally good these days, and has been so since 2003, but she has also said that as there doesn't seem to be anybody else who is willing/able to give me the support I need to cope with repeated life-threatening asthma attacks, and all the other health problems I have, then she will continue to see me.  At first she had said that she'd see me every six weeks, but gradually that support has waned and it is now four and a half months since I last saw her.  I was supposed to have an appointment with her on Monday last week, but she cancelled on me, and not for the first time.  The replacement appointment isn't until the middle-end of March, and to be honest I don't feel very supported by her at all any more.  I wrote to her last week expressing my dissatisfaction, but I don't suppose I'll hear anything from her before the rescheduled appointment.

I had to go to see my GP on Monday.  I told him about the cancelled the psychiatrist appointment, and I also mentioned, almost in passing, that I'm feeling a bit low at the moment, finding the chronic ill-health difficult, and the impact it's had/having on my life tough.  He asked if I'd ever seen a clinical psychologist from the health psychology department so I told him about my years of seeing L, and I told him about the assessment by the health psychologist at the difficult asthma clinic.  He immediately suggested a referral back to health psychology, but to the department rather than to the difficult asthma clinic.  I agreed that it might be helpful, although I'm a little nervous that I might end up seeing the person who I saw at the difficult asthma clinic and who was a great deal less than helpful on that occasion.  The GP - Dr Cg - said it'd probably be about a four week wait and asked me if that would be okay.  I thought it would be okay, but he said that if I changed my mind and I needed to be seen sooner then I should get back to him and he'd speed things up for me.  I am so lucky to have such great GPs.  There are five or six GPs at the surgery I go to and I have complete confidence in all of them.  Anyway, I'm now waiting for that referral to come through and to receive an appointment in the post.  For all that I'm reluctant in some ways to go back to therapy, I think that perhaps I need something at the moment.  I am struggling a bit and I know that I can't afford to let it get anywhere close to depression, so I suppose the first step in managing it is realising that I need more professional support than I'm currently getting and to accept that support now that the opportunity has been offered.  Who knows what will happen at the assessment appointment, but I need to make it clear to whoever I see that the issues I have now are very different from those I dealt with when I saw L nine years ago.  This is about now and the future.

Still here

Apologies, all, for the lack of posts recently. I'm still here, but have been a bit busy trying to catch up with my OU studies whilst also writing my submission for the Postgrad Certificate Memoir Writing module I recently finished. In the end I did three short-ish pieces for the submission, which I'm reasonably happy with, but it's the tutor/marker that has to like them so I'm hoping she does. I did the commentary - self-critique of the pieces and process of writing them - on Wednesday, and although I wasn't brilliantly happy with it I decided that it'd do and I put the submission in this afternoon. It feels good to have got it done and out of the way, and it feels good to have confirmed with Newcastle University English Department that I'm going to go on and complete my PGCert this academic year ... and go onto the MA in October! I still have to finish my undergrad degree of course, but I've only got a very small amount of that left to do - one proper assignment; one small, reflective assignment; and the extended essay. I'm at the thinking stage of the proper assignment, with ideas floating around my head, so I should hopefully get it done in the next week.

OU studies have been delayed during this past week and bit not only because of the PGC submission, but also becasue I haven't been feeling too grand. My lungs aren't behaving very well and when I went to the ward last week for my portacath flush, J (Charge Nurse) offered to find a bed for me :o( I was tight and wheezy, but not awful so said I'd prefer not to have to stay if I could avoid it. He said okay, but also to email him when I think I need a bed reserving, which neither of us think will be too long :o( I'm wondering if part of it is due to a rise in pollen as I've been sneezing a bit and my eyes have been itchy, though I'm sure it's also just part of the pattern of things. It seems to be a fairly slow decline as I'm still not at the 'really struggling, but somehow managing' stage, despite having been slipping for ten days or so. It can stay slow for the moment, because I've got things I want to do, like go to my friend's graduation on 8th April... Hmm, I wonder if I'll last two weeks...I hope so, but I also hope that I'll still be well enough to enjoy the graduation, despite being on the slip... Hmmm.......

I've been very POTSy today as well as the lungs not playing properly. I had an awful night's sleep last night with the most horrendous, stabbing headache that somehow throbbed at the same time as being stabbing. It kept waking me up, and it sometimes felt like my head was literally going to split in half. It intermittently continued through the morning and early afternoon, and although it abated later in the day I've still been feeling fairly rubbish and completely wiped out. The wiped-out-ness has most likely been contributing to the POTSiness, and I've been good for nothing other than sofa surfing. The only thing I've done today is take my submission to the university (as I said before), and I only did that today because I didn't want it hanging over me through the weekend when Monday's the cut-off date and there's no saying whether Monday will be any better.

I'm off to bed now and hoping for a much better night.

Appointments

Last weekend I was approached by one of my neighbours while I was out shopping in the local small supermarket. She's someone I've seen around a lot, but never actually spoken to, but this is an area with a good sense of community so it wasn't much of a surprise that someone I frequently saw in the street should stop to speak to me. What was a little surprising was that she was asking me about my care needs and what care I currently get. It turns out that she used to be an occupational therapist, took a career break to have children, and now that they're all at school she wants to get back into work, but OT jobs seem to be a rarity so she's thinking of becoming a carer or PA for the time being. She was asking which agencies my carers come from, so I told her and explained that they're sub-contracted from Social Services. So then she asked about whether I'd ever considered getting direct payments so that I could choose my own carers, and I explained that it was something I'd recently been thinking about, but I don't think it's possible as my care is now paid for by the NHS after the Continuing Care Assessment I had last year. Anyway, she was lovely and I said I'd be happy to give her the phone numbers of the agencies that provide my carers in case she wanted to get in touch with them about employment. She popped round to my flat a little later that evening and we had another lovely chat, during which she asked if I'd consider employing her as my carer, and that she could supply references and get a CRB check etc. Although this might seem a bit odd given how quickly and unexpectedly this has all come about, she is actually someone I would consider appointing as a carer (providing she can cook! ;oP ) if I could get direct payments. I decided I'd enquire about the possibility of direct payments and found the address to email the right department. That was on Friday/Saturday night, and I had a phone call back from them on Monday morning, but unfortunately the news wasn't good, and it seems that because I now have my care paid for by the NHS then I can't get direct payments, which seems not only daft but somewhat unfair. Why shouldn't I be able to choose who my carer is just because of the funding body? The social services person who phoned me back (it may even have been a social worker) did give me the phone number of the 'nursing assessors', whoever they might be, who may be able to help, and a friend of mine who's a social worker has said that it may be that something akin to direct payments is an option, but with a different name. I've yet to contact the nursing assessors, but I will do when I've got a bit of time not taken up with study and hospital appointments.

I've had two hospital appointments since Thursday. The first was with my asthma consultant, Dr H. I wasn't expecting anything much as there are never any new treatments on the horizon that'll be suitable for me, and sure enough, this is still the case. However, Dr H is unhappy at the huge dose of predisolone I'm on and have been on for well over a year now - for the past eighteen months I don't think I've managed to get my pred dose below 85mg, and at the moment I'm on 100mg! This is down from the 125mg I was on at the beginning of the year, but not by much and it's still an absolutely enormous dose. Now it should be that a corticosteroid is a corticosteroid is a corticosteroid, but Dr H is wondering if I may respond better to another one - not pred - so we're considering changing over to Kenalog. He said it's tricky to work out comparable doses of Kenalog to prednisolone, and he also explained that Kenalog is given as a depo-injection every few weeks, rather than by tablet. This would kind of be an advantage I suppose as it'd be one less medication (and a whole load of tablets) to have to think about, but I guess the disadvantage is that the dose can't be varied so if there's a brewing splat I don't know if I'd have to up my steroid intake with extra pred... I guess that'd be something to discuss with Dr H, but the final decision on Kenalog hasn't yet been made. We're both going to think about it over the next few weeks and then perhaps come to a decision when I next see him. I'm hoping that this will be in clinic in May, but I'm not convinced I'll make it that long without another splat. The old breathing bags are being quite grumbly and unpredictable at the moment, and my peak flows are more erratic than usual with an emphasis on being low :o( I'll keep you posted about all that.

Today I had an appointment at the Falls and Syncope Clinic, and again I wasn't expecting any miracle cures, and again I was right that there aren't any miracle cures. However, the doc does want to see if they can get me any better than I currently am, with less passing out, less falling about, less dizziness, less POTSiness and vasovagal syncope-ness all round. He said that the first thing to do is to get a 24-hour blood pressure monitoring, so he's put me down for that between now and my next clinic appointment. He said they monitors seem to be coming available quite quickly at the moment so I may not have to wait too long for that, which would be good, especially as he wants to see me back in clinic in six weeks time. After that there are a couple of possibilities primarily targeting my tendency for low blood pressure (and vasovagal syncope), the first of which is the mineralocorticoid Fludrocortisone. I think it works by causing retention of water and therefore raising blood pressure, but of course, as a steroid, it has all the possible side-effects of steroids too ... not that that's going to be increased very much from what I'm already on for my lungs. To be honest, I'm not thrilled with the thought of intentional water retention after my miserable experiences of unintentional water retention, so I'd prefer the second option - Midodrine. I don't yet know a huge amount about midodrine, other than it raises blood pressure (and a very little bit about how it does that), and that it's not currently licenced for raising blood pressure so it'd have to be prescribed off-licence. The doc explained some of the potential side-effects, the most notable being that it can reduce potassium levels, which may be a concern as my nebs can do that too and low potassium levels can be dangerous to heart function (and other organ systems too). The other side-effect he said that some people find intolerable is a kind of goosebumpy feeling as the med makes all your hairs stand on end. I'm not sure which of those two drug options I'd prefer. The doc said he'd prefer to try fludrocortisone first, but I think I'd be more inclined to try midodrine first, though I suspect that at the end of the day it'll come down to the doc's preference, not mine. Before a decision is made, though, we'll see what my 24-hour BP monitoring shows.

It couldn't be done

Last week was a bad week with POTS - lots of dizziness, unsteadiness, and passing out; racing heart; exhaustion; poor concentration; tinnitus; and host of other things, but these were the main ones last week. As a result of the POTS-iness I was finding study practically impossible, and although I had an extension for my End of Module Assessment (EMA) for my postgraduate certificate course in Writing for Young Adults, my new deadline was to be this coming Friday - 11th February. I couldn't see that I was going to be able to meet the deadline and thought I was probably going to have to ask for a further extension. I was reluctant to do this, though, as I still have a lot of OU study to catch up on (I'm an essay behind with them again, as of last Friday), and I can't start on that until I've done the PGCert submission. I was beginning to feel like I was chasing after myself.



Sunday came and although I wasn't great, I did find that I had more concentration than I'd had all week so I decided to make the most of it. I sat down and set to it, trying to write the first three chapters of my novel for young adults, of which I only had about 500 words. It took a long time to focus, to find direction, for my character to start to speak to me again and tell me what she was up to, what she was thinking, what she wanted, what she was feeling, and what was going on around her, but gradually she revealed herself, and bit by bit I was able to put her down onto paper. By the end of Sunday I had most of my three chapters! Monday was spent editing and then thinking about what I was going to write in the reflective commentary. This is basically where we discuss the process of writing and editing our work; how we have incorporated what we've learnt through the course into the work that we've produced and are submitting for the EMA; what feedback we've had from peers/others, and how we've responded to that feedback; and give any information that's vital for the understanding of the extract of the book we're presenting for submission. All in 1000 words. Not an easy task so it does take some contemplation. Although there were other things I wanted to do yesterday I made myself get down to work, and by the end of the day I had a little over 1000 words of commentary! To be honest I didn't spend much time editing the commentary, and perhaps it could be more concise in places, but I'm fairly happy with it, and I'm sure it's more than enough to get a pretty good pass. I went into town today, went to the university, submitted my EMA! I have surprised myself! I've also surprised several others who, like me, weren't convinced that I'd be able to meet Friday's deadline, let alone submit my piece early. Now that I've written the first three chapters I want to write the rest, but it's going to have to wait, because now I have all that OU work to catch up on, and last Thursday I started my second PGCert module - Memoir Writing. Maybe one day I'll be able to say that I'm on track and running to schedule, but my decrepitude keeps interfering with that, and it seems that whenever I'm on the cusp of achieving this goal I end up in hospital or almost in hospital or full of POTS-iness. Most frustrating. However, I've got this far so I'll press on.

There's an elderly woman from church, A, who comes to see me every few weeks. She's part of the pastoral care team and has been visiting me for a couple of years now. In name it's for my benefit; in practice it serves us both. We're quite different, not least in age as she's 81 (although extremely fit and sprightly), but A's lovely and we get on well. We chat, sometimes we have tea/coffee, we tell each other what we've been doing with ourselves, what we plan on doing, and how we feel. Basically it's friendship, and it's lovely. I was telling her today a little about my studies, how last week had been POTSy so I hadn't got anywhere with my studies, but that I'd worked my socks off since Sunday and had got my Newcastle University project done. She was not only pleased for me, but said that she didn't know how I did it. To be honest, I'm not sure how I do it ... except that it's self-belief that I can do it and the knowledge that I want to do it. I want finally to achieve my academic potential, and when I'm behind at the moment I remind myself that my OU course will be finishing in about three months time, and on 16th September I'll be graduating. Me! Me! The person who under-achieved all through school; the person who got ill with depression when at university studying nursing when she was 19/20; the person who became immobilised by depression for many years and didn't achieve anything much (or didn't feel like she did). Me, I am going to graduate! ...I just need to get to the end of this current Open University course, and the end is in sight. And the plan after that? To continue with post graduate studies at Newcastle - finish the PGCert in creative writing and go onto either an MA or MLitt. I never used to believe I could achieve anything like this, like that. These days I do. My teachers weren't ever very encouraging, and I never got the impression that they believed I'd achieve anything much, although none of them ever said this explicitly. My father didn't believe in my academic potential. So many, including myself, didn't think that it could be done. Here I am doing it.

I have a book of poetry called The Swallow, The Owl, & The Sandpiper. It's a fantastic poetry book, and is published by Finks Publishing in aid of The Sandpiper Trust. The following is taken from their website: 'The Sandpiper Trust aims to provide Scotland’s doctors and nurses, who have been highly trained in accident and emergency skills by BASICS ( The British Association of Immediate Care, Scotland), with appropriate emergency medical equipment known as the Sandpiper Bag.' That's a very small snippet of what they do, but it's a great cause and a fantastic book, which you can buy directly from their website. On page 56 of the book is a wonderful poem that my mum read out to me on the phone one day when I was in hospital and I'd come through another life-threatening asthma attack (Mum originally bought me the book as well as a copy for herself). The poem is 'It couldn't be done', by Edgar Guest:


It couldn't be done

Somebody said that it couldn't be done,
But, he with a chuckle replied
That, 'maybe it couldn't' but he would be one
Who wouldn't say no till he'd tried.

So he buckled right in with the trace of a grin
On his face. If he worried he hid it.
He started to sing as he tackled the thing
That couldn't be done, as he did it.

Somebody scoffed: 'Oh, you'll never do that;
At least no one we know has done it';
But he took off his coat and he took off his hat,
And the first thing we knew he'd begun it.

With a lift of his chin and a bit of a grin,
Without any doubting or quiddit,
He started to sing as he tackled the thing
That couldn't be done, as he did it.

There are thousands to tell you it cannot be done,
There are thousands to prophesy failure;
There are thousands to point out to you, one by one,
The dangers that wait to assail you.

But just buckle right in with a bit of a grin,
Just take off your coat and go to it;
Just start to sing as you tackle the thing
That cannot be done, and you'll do it.

- Edgar Guest

(1881-1959)

Results!

Hurrah! I have good things to report! First off, I got the results for my latest OU course - children's literature - and I got a Distinction (a First) with 90% for the End of Course Assessment (the one I wrote when I was so desperately ill because I was refused an extension) and 86.5% for the continuous assessment. All but one of my continuous assessment essays were over 85%, but my OCA mark was brought down a little by the 78% I got for the second assignment Sooo, the Distinction I've got for this course adds to the other three I've got, and although I have one more course to do before I graduate I know now that I will come out with a First Class Honours degree, providing I pass the last course. As I'm doing things in my typical backwards way, this last course I have to do is only a foundation course so it's just pass or fail - no variation in pass levels - and as a foundation course it doesn't count towards my final class of degree, which is how come I know what degree classification I'll graduate with :oD It certainly takes the pressure off, and I can be extremely proud of myself achieving what I have, and against the odds with my health.

Continuing with the education theme, I've had my official acceptance from Newcastle University onto the Post Graduate Certificate in creative writing - an unconditional offer after a glowing reference from my latest OU tutor :oD I'm a very happy bunny and looking forward to starting my post grad studies ... even though I'll simultaneously be finishing my undergraduate degree...

Now you may remember that some time ago I asked if it'd be possible for me to have pulmonary rehab at the Freeman. Initially the physio had agreed, but then they got scared off by my regular passing out, which is understandable I suppose. So then, feeling rather despondent, I asked my GP if he could help, but he was then pushed from pillar to post and apparently ended up writing to Dr H (asthma consultant) to see what he could do. Then at the beginning of last week I had an appointment with the physio at the Falls and Syncope Service at RVI to see if they could help with the imbalance I have due to the POTS. The physio here, L, was great (as all the staff at the F&S clinic have been in all of my contact with them) and she's given me some balance exercises to do. Anyway, while I was there I spoke to L about the pulmonary rehab and the reticence of physios not used to POTS (fair enough considering the rarity of it) to take me on, and also whether she thought it'd be reasonable for me to take part in pulmonary rehab. After my assessment with her L thought pulmonary rehab would be great for me, and said that she'd discuss it with Prof N (one of my POTS consultants - for some reason I have 2 in the same department!). The next day I had a call from L saying that she'd discussed the pulmonary rehab option with Prof N and she also thought it would be of great benefit to me. Prof N had written a letter to the physios at Freeman to put forward my case, whilst acknowledging the justification for their anxieties, and L said that I should hear from the Freeman shortly, but to get back in touch with her if I hadn't heard anything in three weeks time. Well, that afternoon I received a phone call from the physio at the Freeman offering me an appointment for my pre-pulmonary rehab assessment! L must have faxed the letter through to Freeman. I'm so pleased. I can't wait to start getting some level of fitness back, and to get my confidence with it back too. I'll keep you posted with how the assessment goes and what happens in pulmonary rehab.

It's three weeks today since I had my first cataract op, and things are now much more settled with it. I'm still surprised by the brightness of colours and the fact that things have actual edges! My sight is still lopsided as I've yet to have the second eye done, and also get new glasses, but already things are so much better than before the op and it's all very exciting :oD I have one more lot of eye drops to do at midnight tonight before I can stop being ruled by the clock and having to remember to take the drops with me if I go out (ensuring too that they're kept cold as they're supposed to be refrigerated), and then I have my follow-up appointment at the hospital on Thursday next week. Two days before this I have to go to the optician to have a post-op eye test so that the surgeon has something to work on at my clinic appointment, so that's all booked in for Tuesday. I'm still having problems reading and doing any kind of close work, which is very frustrating, but I know that'll be sorted when I get new glasses after my second op. In the meantime I'm enjoying already improved sight.

Oh, the other thing is that I've had the super duper ventilation system from EnviroVent installed. The bulk of the work was done on Monday with the BBC news reporter here too doing lots of filming and interviewing in the morning - he was here for almost three hours! He came back a couple of hours later to do a bit more filming and to interview one of the directors from EnviroVent who had come up from their head office in Harrogate. He was lovely, and actually the person who had seen me on the initial news item a few weeks ago, and thus instigated the whole thing with EnviroVent. It's so very generous of them, and while only time will tell if it helps my asthma, I can already feel an improvement in the level of humidity in my flat. The installation was finished off this afternoon, with the last of the boxing-in of the piping being done and the new fan in the kitchen. The engineer was brilliant, friendly, efficient, hard working, and an all round good guy :o) Both of us were on the telly on Monday evening on both the 6.30pm programme and the 10.30pm programme, and I learnt from a friend today who had a visit from her social worker yesterday that, as a result of my appearance on the telly, the local social services are going to review their provision of services for severe asthmatics. Apparently they weren't really aware of the impact that severe asthma can have on an individual, learnt a lot from the news report I was in, and consequently think that they're not doing enough for people with asthma. I think this is an amazing result and more than I could have hoped for from the report, so I'm now more than ecstatic that I agreed to put my insecurities aside and take part in the TV publicity.

Results all round!

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!

A bit less Wensleydale

Last time I posted I was feeling pretty emotionally crumbly, but things in that respect have improved over the past five days or so. I think this was in part down to an appointment with my new psychiatrist. I've seen a psychiatrist for many years now, initially because I was extremely depressed (for reasons that I won't go into), but I've been really well in that respect for almost seven years. Of course I've had the occasional reactional blip, almost exclusively in response to my physical illness, but they've been short-lived and understandable. I now see the psychiatrist because of the emotional impact that my asthma has, but I don't see them very often these days simply because I don't need to - I generally cope a whole lot better with the things that life throws at me. In fact several years ago the psychiatrist I was seeing at the time said that he wouldn't discharge me because I cheer him up too much :o) That was two psychiatrists back.

The psych services are very unstable with extremely little consistency, which I think is terrible as it's one area of medicine where the development and maintenance of a trusting doctor-patient relationship is vital, but it's just not there. Maybe it's doctor burn-out, I don't know, but whatever it is I'm now onto something like my 12th psychiatrist in 14 or 15 years! Things have been more stable since the middle of 2003, although I am now onto the third psych since then.

Usually psychiatrists are fairly good at telling you that they're going to leave, but the last one didn't tell me and the first thing I knew about it was when I received a very strange letter from the community mental health team (CMHT) that I think I mentioned a few posts back. The name and address at the top of the letter were mine, but it then went on with 'Dear Lesley', told me that the appointment I'd been expecting just a couple of days later with Dr G had been cancelled and a new one made for me with Dr M - a psychiatrist I hadn't seen for two years - on 32nd January. Hmmm, someone obviously wasn't with it! I phoned the CMHT to ask them what was going on, and while they couldn't account for the date or the wrong name, they assured me that the letter was for me and that the reason my appointment was to be with Dr M was because Dr G had left. Oh. News to me. They said they'd send me another appointment, this time for a date that existed, so I waited, and I waited, and then I got a letter saying they were sorry that I couldn't/didn't attend an appointment with a Dr T on 30th December. Had I known about it (and had I actually been in Newcastle) then I would've gone, but I didn't go because I didn't know ... and anyway, who was this Dr T? I phoned the CMHT again, explained my reason for not attending and asked who Dr T is, and the answer? A new psychiatrist. Really? What a surprise. Oh well. Eventually, having supposed to have had an appointment with Dr G at the beginning of November, I saw Dr T on Monday just gone. I hadn't realised how uncertain I was about meeting yet another psychiatrist until afterwards. It's not just the prospect of having to get to know yet somebody else, explaining the past and my current health/disability, but also the prospect that it's yet another locum so there's no real point in going into things in too much detail or working out their approach to 'treatment'. I had nothing to worry about. Dr T has taken on a permanent position, is fairly young, a lovely, approachable woman with a good sense of humour, on the ball, and not too quick to jump in with medication. Like almost every other doctor I've seen in the past couple of months she hadn't heard of POTS before, but as this has been the thing that's impacted so enormously on my life over recent times, this is what I needed to talk about. She was open to learning about POTS, and of course was concerned about the impact it's having on my life both physically and emotionally. She also said that if there's ever a time when I'm not well enough to get to my appointments with her, if I give her a few days notice then she's quite happy to come and see me at home! This is amazing. This is how the mental health services should operate, but it's not something that's ever been offered to me before. Occasionally Dr M would come to see me in the Freeman when in with my asthma, but it wasn't something that had specifically been offered, rather something that I asked if it would be possible.

After my appointment with Dr T I was hugely relieved. I knew I was in safe hands, and that those hands are here to stay, and I'd also been able to off-load a bit of the trauma of the past few month's life-changing on-set of POTS. I'd been miserable, crying, scared, and emotionally crumbly, but now I'm not so Wensleydale (like the cheese).

It's a huge relief, all of it.

Catching up

It's far too long since I last posted. Sorry about that. I managed to get myself better enough to come home from hospital about ten days ago, and since then I've been trying to catch up with myself. I'm so far behind with my OU work that it's been causing me a bit of panic (although my tutor has been very good and doesn't seem to have been panicking at all), so almost as soon as I got my freedom back I launched myself into my studies, and within three days I'd written and submitted an essay that had been due in six or seven weeks previously. I'm still trying to catch up, and I'm still an essay behind ... almost two essays behind as another is due in quite soon and there's no way I'll get caught up by then. At least I'm making some progress though and I have a germ of an idea for some of what I might write for my next (late) assignment.

The main thing getting in the way of my studies is exhaustion. I am knacked. Today I have been able to do very little other than sleep or sofa surf. Part of it is the post-hospital tiredness, but I think that some of it is also the POTS ... and I just don't feel well with it. My balance is completely shot to pieces, I've been getting a lot of palpitations, I'm very dizzy, and my hr has been fast (around 130-140 when standing). To be honest, it's getting to me. I'm sick of feeling ill and exhausted, and I'd really like some quality of life back. Okay, so things could be worse, I know that ... it's just ... hmmm ... I'm fed up ... Life's enough of a challenge with brittle asthma, never mind with POTS on top of it. I won't let it get me depressed. I can't let it get me depressed. It's not worth it, and I know that I have to make the most of life, but the impact that POTS is having on my life is significant at the moment, and while it's all relatively new to me I don't know what to expect from it, and that's difficult. Is this how things are going to be from now on? Will it wax and wane? Is it something I'm just going to have to learn to live with? Is there anything more that can be done to try to help me feel better? I have a long list of questions for my consultant next time I see her (12th February), but I'm also slightly nervous about asking the 'is there any hope of improvement?' question in case the answer is no. I will ask it though, because I need to know the answer. I need to know the prognosis and the prospects. At the moment it's tough, though. It's catching up with.

W has been poorly too. She developed a chest infection last week so I did some shopping for her and took it round on Friday, except that when I got there she was so breathless after coming downstairs to answer the door that she could hardly speak, so I ended up taking her to A&E. W can be as stubborn as me, and she took a fair bit of persuading to go to hospital, but I really wasn't happy to leave her at home, so it was a relief when she conceded defeat and let me take her up to the hospital. She was seen almost immediately and not surprisingly (not to me, although I think it was to W) she was admitted, and stayed in hospital until Monday evening. To be honest I think she could've done with another day or so in hospital, but her consultant (who I knew very well as an SpR) was relatively okay with her being discharged so long as she went to see him in Out Patients the following day. So after taking her home on Monday evening I then went with her to her OPD appointment yesterday morning. She's okay. She's tired, but enjoying being back in her own home, with her guinea pigs, and not being disturbed every five minutes to have her obs done, or with another patient calling for something, so although in someways she'd be better off in hospital, in others she's better at home. Getting that balance is always difficult.

I have to say that it was rather strange being on the other side of things in A&E. I'm so used to being the patient, but very unused to being the person with the patient. I can't say that it was any better than being the patient, except that I wasn't the one being stabbed with needles or gasping for breath. I was, however, glad to be able to be there for W, especially after the numerous occasions when she's been there for me.

Life hasn't consisted of very much else since I last wrote - hospitals and study has been pretty much it, so not terribly exciting. However, W and I have been planning our trip to Italy in April/May and we now have flights booked and a trullo to stay in at Alberobello. What we need now are return trains between Rome and Bari/Alberobello, a place to stay in Rome for a few days, and the incredibly costly health insurance. Oh, and I need to get all my medical letters etc translated somehow ... I might see if the lovely man who owns/runs Peppy's (the wonderful Italian restaurant down the road from me) can translate them for me, seeing as he's Italian, though I'm not sure about some of the medical terminology. I guess I can only ask and see what he says. So anyway, that's something for both W and I to look forward to, and I'm sure it'll creep up on us fast enough, like our Somerset holiday did. And who knows, maybe the Southern European spring sunshine will do me good and revitalise me a little. Let's hope so.