Pausing for breath

Last week was a bit manic and mainly with health related appointments. Monday's was with the disabilities advisor at Newcastle University's Student Welfare, during which we went through what needs I may have while I'm studying with them. It was very useful, but obviously concentrated on how decrepit I am so I came out feeling a bit pleugh, although I did also feel positive about how they're going to manage things. One of the most ridiculous things the DA is having to sort out is for staff to get permission to use my Epi-Pen on me if the need should arise. At the moment they're not allowed to in case I sue them for assault! Crackers! The DA is going to speak to Occupational Health and also the Health and Safety Officer, who apparently is the only person currently allowed to use my Epi-Pen on me, but that's no good if he's not immediately around because if I need someone else to administer the adrenaline then I need it there and then. Various other things are going to be put in place too, including a note-taker to attend my lectures when I'm in hospital. Brill. There'll likely be bits of equipment I'll be getting too, either through the university or through the Disabled Students Allowance, which I've eventually got around to applying for after all these years of study.

Tuesday's appointment was relatively brief and was with the optician. I'd been told after my cataract operation that I had to go to my regular optician for a sight test and check-up two days before my check-up with the ophthalmologist. It seems a bit daft to me seeing as they do a basic sight test at the ophthalmology department when you go for your appointment, but I was good and went to the optician. The verdict is that my general sight in my right eye has improved a little since the cataract was removed, but my reading sight is a little worse. I could've told them that myself ;o) I have to go back for another sight test and new glasses after my second op.

My psychiatrist was supposed to come on Wednesday morning - 8.30. Ug - but twenty minutes after she was due here she rang me to say that the centre had been crazy all week so she'd had to go straight there. Somewhat ironic that she should describe a mental health centre as 'crazy' ;oP It made me smile anyway. After apologising for not being able to make it she said, 'I have a confession to make,' which made me a little nervous until she continued, 'I was watching telly the other day and I saw you. I shouted, "That's Becky! That's Becky!"' Tee hee :o) After that we had a relatively short telephone consultation, which went okay and was really just a quick monitoring and my conveyance of a self-assessment of how I am. I'm doing okay emotionally - certainly better than the last time I saw her :o)

On Wednesday afternoon I had an appointment with the physio at Freeman Hospital - a pre-pulmonary rehab assessment. This mainly consisted of going through a questionnaire I'd had to fill in before the appointment and going through another questionnaire the physio had there that concentrated on exercise tolerance, perception of health, and my goals for the pulmonary rehab. We obviously also discussed their concerns about my passing out and how they/I will manage them during rehab. Then I had to do a 6 minute walk test to see what happened to my oxygen saturations and my pulse rate. Predictably, my O2 dropped (but only a little) and my pulse rate went up, and of course I staggered around a fair bit, frequently using the wall for support, as walking in a straight line for anything more than a few steps (and sometimes not even that much) doesn't happen with me these days. The verdict is that I'm decrepit enough to warrant being on pulmonary rehab and not so awfully decrepit (at this moment in time) that I'm excluded from taking part :oD I start on Thursday next week.

Most of Thursday afternoon was taken up with the ophthalmology appointment I mentioned before. I was running a little late through the day after a bit of a rubbish night and I was worried that I might be late for my appointment, but honestly it's their time-keeping that needs putting in check, not mine. Like last time, I was there for three hours! Three hours! Three hours for a five minute sight set and a five minute consult with the doctor. At least I got a date for my second cataract removal op - 13th October. I was hoping that I'd get something before that, but as it's the consultant doing the op that's the earliest they had, but said they'd give me a call if they got a cancellation.

Friday morning was taken up with a 'Continuing Care' assessment by Social Services, which took about an hour and a half and again meant concentrating on how utterly rubbish my health is. The point of it is to assess my level of care needs that are medical based, rather than socially based, and therefore how much, if any, the Primary Care Trust (PCT) will pay towards it. To be honest I'm not completely sure how this may effect me. I mean, I don't know if it effects how much I have to pay towards my care or if it's purely to see if I pay the PCT or Social Services ... or some other variation of this. All I really know is that it's something to do with payment, and that going through the assessment made me feel pretty lousy about my health and general state of well-being :o( And to top off the day (and the week) I had a dentist appointment. It was just a check-up, but going to the dentist is never fun. I haven't actually been to the dentist since June last year when he accidentally instigated anaphylaxis by smearing something with a tiny amount of banana derivative in it on my teeth. As soon as the dentist saw me in the waiting room he came and sat beside me and said he was about to go into the room and clean everything thoroughly before I went in and he wasn't going to wear latex gloves, even though I'm not (yet) allergic to latex. When I went in he said, 'I'll have a look, but I'll probably just need to do a scale and polish and I'll get the hygienist to do that.' I got the impression he was slightly nervous ;oP He must have spent all of about a minute looking at my teeth before saying that he was right - a scale and polish with the hygienist is all that's needed. I wonder if the dentist will warn the hygienist that I'm a terrifying patient to have in the practice ;oP He certainly couldn't get me out of there fast enough.

So that was last week, during which time my lungs have been slipping and I'm not sure how long I'm going to last. I've been taking things easy the past few days, trying to beat the old breathing bags into submission with rather a lot of salbutamol and prednisolone. I think I'm much the same today as I was yesterday, and I need to keep on a level as I'm going up to Edinburgh later in the week. I was supposed to be going up there tomorrow, but yesterday I had a phone call from Dr G's secretary giving me an appointment for a pre-portacath consultation on Thursday afternoon. This is good news. I've been waiting for this for what feels like ages. Dr G is going on holiday for two weeks after this, but his secretary said that he's trying to organise a date for theatre for when he gets back. Maybe I'll get a date for the operation when I see him on Thursday. I'm sure it'll give me a lot to think about on the drive north immediately after the appointment.

I'm sincerely hoping that I'm going to be okay while I'm in Edinburgh - breathing wise, I mean - but things are really quite iffy at the moment. I can manage if I stay still, but breathing and walking is something of a challenge. I've got an appointment with Dr H (asthma consultant) on Thursday next week so we'll see what he has to say, and how I am, but at the moment I'm very unimpressed with the state of things ... and I'm not excluding the possibility that I'll end up in hospital while I'm in Edinburgh :o( I hope not. I really do. I'll keep you informed.

Question 1

Sometimes things puzzle me. Here's one of those things:

Why did God make moths nocturnal when they're attracted to light?

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!