Another assessment – good, and bad in parts…

For those of you who’ve been following my saga of late, things have taken a turn for the better, to be followed by a turn for the worse.

I’ve had a long meeting with the Tissue Viability Service nurse, and a treatment plan has been put together which, I’m told, should fix the leaks and infection in my legs in 7-10 days.

The underlying condition – bilateral lymphoedema – is, sadly, a gift that keeps on giving, so I’m stuck with it. And probably with repeat infections too – it’s the nature of the beast. As is my having to wear compression socks for the rest of my life – how old-fartish is that?

You know, prior to the crisis – gradually assuming capital-letter status as The Crisis – that put me in hospital, I looked pretty much like my avi photo which was taken when I was 60, in Appledore,  Devon. Now, 6 weeks in hospital has aged me 10 years or more, about which I am deeply unhappy. Vanity? Probably, but I was happy with how I looked – now I’m not.

Anyway, I digress. When I went into hospital, assorted goodies were on offer. A care package, which I quickly realised I didn’t need and terminated the assessment – no point in wasting time on me when there are people who really need them; a profiling (electrically-adjustable), bed, and a wheelchair-friendly flat, both of which disappeared from the agenda with alacrity.

Still, I’m getting the bed, probably next week. The Tissue Viability nurse says it’s essential in getting my legs to heal and – cheerful soul! – it’ll be better for my carers further down the line as my heart failure is only going to get worse. Which I already know but she needn’t be so sodding cheerful about my prospects of being confined to bed! Which I won’t be – if it gets to that stage I’m out of here. I made up my mind about that as soon as I heard the diagnosis.

The other thing I’m unhappy with is that she wants me to go to bed for 2-3 hours in the afternoon, to rest my legs. No. Absolutely not. Thanks to ME I spent years in bed in the afternoons. I finally broke the cycle, I’m not going back to it. Anyway, it’ll keep me awake at night, when sleep is problematic enough already.

For me, though, the important thing is stopping the leaks. If I’m not leaving a track like a snail, and a puddle every time I stop, I might recover some semblance of a social life, even if it’s only going to the pub for too much beer.

In the meantime, as in hospital, I have strict instructions to eat a high-protein diet. This is because the fluid leaking from my legs is an organic soup that’s mostly protein, the loss of which has to be compensated for. This will be easier at home than in APH, where the meals got ever smaller the longer I was there but, of course, protein equals calories, and I need to watch my weight. Meals, then, need to be proteins, veg and carbs, in that order to keep the calories down.

Otherwise, I’ll balloon – been fat, not going there again. At the moment I’m 79kg, which is about 13kg above my allegedly ideal weight but, as I have dense bones, my ideal weight looks skeletal. While I look far less so at my current weight a lot of that is retained fluid, so even now I’m a bit skinny.

Not, on the whole, a bad look…

7 thoughts on “Another assessment – good, and bad in parts…

    • Thanks. The bed should work well – had one in hospital and it was the first time I could sleep in a bed in over two years.

  1. Going to bed in pm to rest is not about sleeping Ron – take your laptop/kindle etc and whatever gadgets you have to allow your legs to rest & your mind to remain active – but you know this.

    Sorry to behave like mum!

    All best xx

    • Oh, I know it’s not about sleep, but it is about wasting time. Most days I have only a narrow window for activity (if I have one at all), and, these days, it tends to be in the afternoon. Slobbing out in bed will mean that whatever I might want to do during that period won’t get done, and life will become even more constrained.

  2. cant you split the rest time into say 2 x 1.5 hr sessions or 3x 1hr sessions? dont know what time you get up. but maybe an hour before you start to prepare your lunch, another before tea and one mid evening? would a chair with a foot rest help? i know,its all right me talking. i am like you. only time i’ll go to bed in the afternoons is if i am really ill or cant keep my eyes open possibly due to a bad night the previous night. i then do a 40 minute power nap.. i still sleep at night then/ but this is not a regular thing. plus i have fluid accumulates through the day on my left ankle (down each morning but quickly starts to build up again once feet touch floor. i am the worlds worst at sitting with feet up. etc. much too much to do on this

  3. Hi Ron

    I’m not sure if you are aware as I don’t tend to mention it too much, but I am now mostly bedbound as cannot sit up for any length of time. I have to lie down pretty much 95% of the time (without exaggeration). On better days I can go out for 20-30 mins and I very occasionally can go out, say, for a meal.

    Feel free to ignore everything I’m about to say. Sometimes someone’s well meaning “sharing” or advice can be highly irritating as it is totally useless to one’s own situation. However on the off chance that what I’ve done to cope *might* apply or help you I thought I should share it.

    I have replaced the sofa in my lounge with a daybed, which is pretty much a bed which looks like a big sofa. Unlike futons or similar it has a proper standard mattress which is absolutely crucial for my comfort. Psychologically this has made all the difference. I’m no longer restricted to my bedroom which after 6 months was really wearing me down despite having all the mod cons I could wish for. I now really do “get up” in the morning even if it is only to move to the lounge. I am still housebound, certainly, but I really don’t feel “bedbound” like I used to.

    I wonder if this could be a compromise for you, be it now or in the future. I realise that you do need an adapted bed, but the compromise could be that you use the hospital bed at night for sleeping and the daybed during, well, the day, so that you still get the lying down you require while not enduring the psychologically difficult situation of being stuck in the bedroom 24/7.

    As to the advice of lying down for 2-3 hours every afternoon, is there any particular reason it has to be then? If that is your “good patch” then I infer that there are other times of the day when you are not doing quite so well. Could you not lie down then, perhaps at a time when you would normally sit? For instance I have adapted such that I now use a laptop on a laptray (one of those ones with a sort of beanbag bottom) and do all my computing on that from a lying down position. Would that be a possibility for you? Couple that with a daybed in the lounge and you could maybe get those hours in without interfering too much with your routine. This is but one suggestion and only you know what your routine is and what might best fit in.

    I think what I’m really suggesting here is that rather than the goal being to stop what you’re doing in order to “go and lie down”, try to find a way do some of the things you are doing anyway but from a lying down position. That is what I have had to do, at least to the greatest extent possible. If I hadn’t, living would now simply be an existence, not a life.

    I hope you will be able to find some sort of compromise and solutions which best fit you.
    Take care.

    • Hi Sarah,

      I’ve started out to reply to you twice, and twice forgot and closed the tab. Bear with me, I’ll have another go later.


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