A post I can’t think of a title for…

For some reason I’m being plagued by depression. Every evening it roars in like a tsunami and rolls me under, and it’s getting tiresome.

The only reason I can think of is that pain in my legs is greater in the evening and overnight (why? – and don’t get me started on the itching!), restless legs have arrived from nowhere and, as we’ll see, I’m not sleeping, but which is cause and which is effect? Buggered if I know. Anyway, tonight I’m trying antihistamines in the hope they’ll shut down the itching.

My GP came a couple of days ago to discuss an alternative antibiotic (the previous one shut down my breathing big-time), and he raised the prospect of a return to hospital, for i-v antibiotics. I made it quite clear that while I was fine with the antibiotics idea, returning to APH as an in-patient was way down my list of priorities.

Of course, if it was unavoidable, I’d go, but not without exploring the alternatives first. For example, the district nurses are here twice a day, so could, presumably, set up an i-v in the morning and, as long as I’m fitted with a cannula with a bayonet-fitting adapter, I could safely detach myself from it once it was finished.

Anyway, while he was here I asked him what my prospects were, as the nurses had suggested my lymphoedema was curable, but everything I’ve read, as I’ve already mentioned, says that while the cellulitis might be curable, the underlying condition is not (see here  – I’m worse than fig. 3 but nowhere near as bad as fig. 4). I also asked – as I did when admitted to APH – if the cellulitis infection could be poisoning my entire system, given how appallingly crappy I feel these days** – again, online research, and a doc at APH, say yes.

**To which the new antibiotic, Ciproxin, is adding its own insults. It’s aggravating that, as I get older, drugs I’ve taken previously without problems now cause me a lot of grief. Having said that, I’m constantly surprised that after a lifetime of filtering toxic chemicals  from my blood, my liver still works at all, but apparently it’s fine. Not much else in there is, but liver and kidneys are still doing their thing.

In both instances he confirmed what I already knew. Not happy about that – it’s not always good to be right! – but at least I know where I stand. Or, rather, sit, because for the last few months I’ve not been able to wear boots or even socks, my feet and legs are so grotesquely  swollen (yep, I’ve tried larger sizes, doesn’t work as my feet are no longer entirely foot-shaped), so it’s becoming increasingly clear that my future is going to be spent on wheels, to a large extent. Especially if I ever want to go out or have any sort of social life (I’ve been out just once since September, and that was a week ago), wheelchairs will be involved.

Being on wheels doesn’t bother me unduly – been there before – but it is restricting when it comes to the choice of venue if, say, I fancy a pint or several. I can count the number of local, wheelie-friendly, real ale, pubs on one hand – hell, on one finger! – while my usual site for waterfowl photography is just too dangerous on wheels. Roodee Mere, Royden Park, Wirral, needs a hell of a lot of work on its perimeter path to be safe for wheelies – with a myriad tree roots just waiting to steer the unwary into the water.

I have a powerchair for venturing outdoors, and a somewhat elderly Quickie Ti rigid manual chair which is mostly used indoors. What I need is a high-end lightweight folder – much easier to stuff in the boot of a taxi. This is likely to be the fixed footrest-hanger version of the Quickie Life rather than with swing-away footrests (the extra cost of those doesn’t justify the minor convenience.

Right now, though, I have a more pressing problem. For the better part of  a week, I haven’t slept worth a damn (typical example – at the weekend I had a long, complicated dream and woke feeling that hours had passed – it was 12 minutes, and that was it for the night).

The reason for this is that my lymphoedema/cellulitis lesions have taken a turn for the itchy** which, in my personal Lexicon of Intolerable Buggeration is way above pain in its ability to massively disrupt my life, and especially my sleep.

**Please! Don’t tell me the itching means it’s getting better – it’s not.

So 04.00 one morning** saw me frantically ripping off my dressings in the (ultimately vain), hope that exposure to the air might abate the itching. Yeah, right… And this is an itch that can’t be scratched, as the skin on my legs is so spongy that scratching, even through the bandages, rips it open. I could also expose it to an even worse infection than I currently have.

**04.00 seems to be the point before which sleep is impossible right now, and at which exhaustion wipes me out. As I have to be awake to start my meds just two hours later, at 06.00, this isn’t wildly helpful.

I think it’s fair to say that that night I was pushed closer to the edge than I want to think about. And if you think that’s an over-reaction you should check out sleep deprivation.

Nothing moves more slowly than the hands of an insomniac’s clock!

And pray you don’t itch unstoppably the while.

Finally, in terms of patient support at a national level, there seems to be mainly, perhaps only, the Lymphoedema Support Network and, guys, you really do need to get your act together, and make it easier for people to join – having to download an application form, complete it, and post it back with a cheque, is so last century, and a massive disincentive to people like me who are housebound.


10 thoughts on “A post I can’t think of a title for…

  1. Empathy with the itchy skin, my only respite is to spray legs/arms/body with cold water, or even better a cooling spray, & leave to air dry; helps a little.

    Hoping your Dr comes up with some cocktail soon to assist you

    All best as always xx

  2. *Squishes*

    Cool stuff helps my itching as well- I’ve resorted to bags of peas before (it worked which is all I cared about then). Maybe look into something to cool it? I do find itching worse than pain, and you already know my pain can get pretty bad.

    You can get socks for massively swollen, misshapen feet, and some shoes as well. Not normally that stylish but they cover the feet.

    If brain was working better I’d give you links. Maybe the information may be helpful anyway?

    • Thanks Danni – I have a couple of links so don’t worry about it.

      I’m looking at outsize shoes and socks at the moment. Might have to wait a week or two – just bought a new wheelchair and an electric bed lift (not been able to sleep in bed for 2.5 years), so pretty broke right now. One thing about having no social life – the money in the bank mounts up quickly!

    • Unfortunately not, Chrissie – it has to be kept as dry as possible which, since it’s sucking fluid out of my leg by the pint and pouring it on the floor, is an uphill battle.

  3. Oh dear Ron no sleep is NOT good!
    I used to get itchy skin, foot / leg cramps and restless legs. I take Cetirizine nightly and the itching is no more. Quinine taken at night cured the cramps and for some unexplained reason, no more restless legs for over a year. Have you tried these drugs at all?

    • The big problem, Geoff, is lymphoedema and a cellulitis infection causing the itching. If they can fix the infection the itching should go – not happening yet! Last night I took Benadryl, which dialled it down to sane levels, the downside being that I got even less sleep – as in none at all.

      So far, so unimpressed. Still, the alternative is being back in hospital on i-v antibiotics, and I’d be even less impressed.

  4. Sorry to say the only thing that fixes my cellulitis is IV antibiotics.. But I do have them at home once organised by the hospital.. Nurse comes night and morning and they put them through in about 20 minutes each time.. Works well and better than being in hospital!!

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