shiraphant: (Default)
[personal profile] shiraphant
Well, shit, dudes. I am just not sure how well I'll cope with the progression of my lipoedema. I can't exactly do anything about it, but damn. I am not looking forward to it. Currently, my legs look like this (I am affected from waist down and on arms, but I'm only showing you my legs because you don't need to see my arse and because I couldn't find any arm-comparison photos):

Those are 24 and 25-inch calves, there, and 37-inch thighs.
You'll have to excuse the hairiness. I'm not meant to shave my legs (though I usually do if I have a medical appointment which involves my legs being on display), hair-removal creams do nothing on my PCOS hair, and buggered if I'll wax. Also, really, what difference does it make on legs like these?
The nature of lipoedema is such that even in cases without the extra complications of fibromyalgia, chronic myofascial pain, PCOS and severe insulin resistance messing things up, weight gain is literally inevitable and weight loss is literally impossible. So I know that my future lower half is going to look something like a combination of these women:

I can already recognise certain shapes and patterns of fat distribution from these women, in my own body and also that of my mother. For instance, I'm getting a pretty impressive shelf from the waist down - it really does look like two people of vastly different sizes spliced together.
My father expressed concern that I was focusing on this too much. I explained to him that I am doing no such thing. Every now and then, my body decides to gain a lot of weight in a short space of time. Typically it's something like a stone in a fortnight, or two stone in a month, and then nothing else for ages and ages. Recently I was on some drugs which caused another weight spurt and noticeably changed my shape and size, so I have been thinking about this for the last few days. I'm posting in order to express my fears openly and be able to face them without shame. I don't expect or need sympathy or "helpful" suggestions; nothing can be done for this condition except wearing (fucking expensive - I mean, hundreds of pounds per pair) compression tights to slow the expansion very slightly, and once the lymphoedema develops sufficiently, manual lymphatic drainage - if it's available. Quite apart from the way it looks and the dangers of infections which could kill me once the condition is advanced, having lipoedema fucking hurts. You know when you get out of bed, and the backs of your calves brush against the side of the bed? That really hurts me. James has to be careful when he's hugging me because sometimes it can feel like he's digging his fingers in really hard, when he's not doing anything of the sort. It will still feel bruised and sore fifteen minutes later. I can't have the cats walk across my lap without pain.

One day I'm going to be unable to walk.
One day I'm not going to be able to be intimate with my husband (I won't get into my self-esteem issues here but I am sure you can all imagine)
One day I'm going to be unable to leave my house for fear of the aggravation I'll get, but more importantly for fear of injuring myself - the slightest cut or tear or bite could be fatal. I've seen my mum nearly die, several times, as a result of an insect bite, or a tiny break in her skin through which bacteria entered and caused cellulitis which left her in intensive care. With each subsequent attack, the body's defenses weaken. She used to have a day or two of warning to get started on her antibiotics. These days she has no more than a couple of minutes. I know what to expect, and all of it scares the shit out of me. And lipoedema is just one of the many things wrong with me, and the thing about having fibro and CMP is that most warning signs for most serious conditions and illnesses are things which fibro sufferers have all the time anyway; anything major gets ignored as "just normal" until it becomes serious enough to rise above the background noise of daily symptoms, by which time it's usually become pretty dangerous.

Forgive me if it sounds like I'm whinging. I'm really not. I'm just saying, most of the time I get on with it, but every now and then I get really fucking scared, and really fucking sick of not being able to have a normal life or wear anything that's not ankle-length or, you know, just be healthy. I get really tired of doctors who don't know anything about lipoedema (because it's not in medical textbooks yet, or at least it wasn't in 2006 when I got diagnosed) telling me just to lose weight. I am especially sick of doctors telling me to lose weight even after they've read the documents I take them, or that my specialist sends them.

I will get on with it, because that's my only option, and I am extremely lucky to have James who is supportive and understanding. I just wanted to say: shit, this lipoedema business is horrible.
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December 2010

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