If, like me (bilaterally in my case), you have the lymphoedema & cellulitis combo, then you know just how badly it can screw up your life – as in you’ll barely have one any longer. I certainly don’t.
Because of the swelling, none of my footwear fits me, nor do my socks, and my trousers simply won’t fit over the bulky absorbent dressings (for those of you unfamiliar with these conditions, my legs and feet leak – as much as 3 litres a day at their worst. Even if I could get shoes or boots on, they’d be soaked and wrecked within an hour or two, and my trousers, likewise, would be wet to the knees.
And just to add to the joy, the infection stinks. It can also be extremely painful and – far worse – itches intolerably, depriving me of sleep for days until I crash from sheer exhaustion. After which the cycle starts again. This is by far the worst aspect of it. Pain I can deal with, but the itch worms its way deep into my soul. Can’t scratch it either as the skin is far too wet and fragile
So, although I’m now otherwise well enough, though tired, to consider having some sort of social life, it’s still quite impossible.
My GP has tried the normally accepted antibiotic, Flucloxacillin, though this had to be stopped as it adversely affected my breathing, but it was having no visible effect anyway, nor did its replacement, Ciproxin. I also took the anti-fungal drug Terbenafine, to no visible effect.
However, about a week ago, via the Lymphoedema Support Network website, I came across a report from the Lymphology Society, “Revised Cellulitis Guidelines March 2013 – Consensus Document on the Management of Cellulitis in Lymphoedema.” This recommends oral Amoxicillin, 500mg every 8 hours. And that’s something I always have plenty of, as I buy my own to treat my COPD flare-ups.
So, at the moment I’m taking a loading dose of 1g every 8 hours for a couple of days, before settling into the 500g/8hourly routine. In theory, at least, I should see some improvement in 48 hours – we’ll see…
The trouble is, though, from reading the same report, it’s clear that this is likely to be with me the rest of my life, the lymphoedema because of my heart failure, despite APH’s best attempts to rubbish their previous diagnosis (look, if it looks like a duck, walks like a duck, and quacks like a duck, it’s a fucking duck, OK?!), and cellulitis is a notorious repeat performer.
So it seems that this is going to be with me for a long time, one way or another, and as I have no desire to sit looking at 4 walls and a computer for the rest of my life, I need to adapt to my new circumstances.
The first priority is already in hand – a new manual wheelchair (because although exercise is allegedly beneficial for lymphoedema, in my case it also ramps up the rate of leakage, so that I leave a trail behind me like some human snail), not to mention the ruinous effect on my footwear and clothes. I do have a manual chair, a Quickie Ti, but the frame inset is such that my hugely swollen legs no longer fit the available space.
Then I need footwear that can survive being soaked in bodily fluids. Crocs spring to mind as, being moulded from plastic (or rubber, not sure which), they’re pretty much impervious and can easily be washed. The only question is – do they come in a wide enough fitting? I know I can buy shoes for people with swollen feet (at a pretty hefty price), but they’d be ruined by leakage as easily as conventional shoes.
That leaves trousers, and you have my full permission to turn me in to the style police if I ever wear joggers, a.k.a. trackie bottoms! That leaves baggy, old-fart-style trousers (please, kill me now!**), but they’d still get wet. Shorts or zip-offs are OK, the latter currently being worn but I need more than the one pair I have and they’re not feasible in winter. It’s possible that the mysteriously popular calf-length shorts (are they long shorts, or short trousers?), might serve, but I’ve not seen anyone wearing them who doesn’t look a complete pillock!
**OK, chronologically I’m actually an old fart – and I aged horribly in hospital (next to haggard in the dictionary, it said “See Ron…), though I’m recovering somewhat – but only chronologically, not in any other respect, like having no pride and buying baggy trousers from Chums!
That leaves socks. SealSkinz is a company that makes waterproof socks – among much else – for cyclists, and I figure that if they keep water out, they’ll also keep it in, protecting my shoes and trouser-bottoms from leakage from my legs and feet. As with Crocs, it depends on a suitable size being available.
And I must ask the district nurses if they know of anyone who produces a waterproof bandage, if all else fails.
Finally, if you are in the same situation, and losing fluid in fairly dramatic quantities, it is vitally important to look to your hydration, the more so if you are also, like me, taking diuretics. A sachet or two of Dioralyte a day might be a good idea too.