A favourite quote and a way by which to approach life.

Today is the tomorrow that you worried about yesterday.

Wednesday, 27 January 2010

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.

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