This week I had a rant on Facebook about how people assume my problem is simply psychological. I’m not sure if it’s because it was such a faff to get a diagnosis, or because they don’t know anything about Ehlers-Danlos Syndrome. I think people think it’s just a wishy washy problem and it’s probably in my noggin. This is NOT true. It’s poorly understood, but if anyone wants to throw endless amounts of cash at research, the information would soon appear. It drives me loopy when people, in an attempt to be supportive, tell me that if I got out and about more it’d make me feel better. Psychologically, yes. Physically, no no no no NO! I am slowly getting to know my body and I’m figuring out when I can push my body to benefit my mind and when pushing my body is like hitting self-destruct. Do you know what’s really not good for my psychological well being? Pain. Unmanaged, unbearable, crippling pain.
I have a diagnosed connective tissue disorder. People don’t understand it. I’m not sure why. But when I was lying in bed the other week, I thought of a pretty good way to explain my illness:
My pain is as real as the biting cold would be if you were naked and alone, standing in the Antarctic. Just imagine it for a moment. It’s literally freezing cold and you are naked. In my situation, EDS is the Antarctic and the cold is pain. My treatment is what warms me up:
Drugs – These are hit and miss. Sometimes, they can be like the most amazing thermal underwear. More often than not, though, they throw a bucket of ice cold water over you and laugh in your face.
Physiotherapy – This is a process whereby you get a new item of clothing every month. Except sometimes it’s not directly beneficial. Sometimes you end up with 52 socks and only when you have enough, can you use them to make a cosy jumper. It’s a lot of work and takes a long time. Often you need the drugs to be able to cope, and most of us don’t have an effective drug cocktail, so often struggle with the physio. We end up stuck on socks.
Supports and braces – I think of my supports and braces like a blanket. Not practical for constant use, but there when I need them. There are times when my joints are on a mission to ruin themselves and I have no option but to Velcro them onto a metal rod that stops them moving from where they SHOULD stop.
Kindness – Kindness is like shelter. Sometimes it can be in the form of a small wooden shed and at other times it is like a luxury hotel room with a pre-run hot bath and a glass of prosecco. Some people in life can only offer a shed, but we’ll happily take the shed. Kindness should never be overlooked. You can’t take our pain away, but you can come over for a coffee and help us feel normal, just for an hour. Occasional access to a shed is certainly preferential to hypothermia.
Other remedies – My TENS machine, my CBD vaporiser, a hot shower… These are a pair of shorts here, a t-shirt there. They don’t stop you being cold, but they stop you being naked. Sometimes they are like a roaring fire, but it always goes out. I love my TENS, but I can’t sleep with it on. Nights are cold.
Pacing myself – This sounds stupid, but it makes sense. You’re freezing cold and starving. It’s all about survival. You have to measure up what energy you have for the day and the “cost” of certain activities like hunting or looking for warmth. It’s no different with pain. I think of this as a pair of snow boots. It’s *really* hard to get right, especially when you want to go to birthdays, weddings and to see friends (these can all set us back for weeks) or even do a load of washing. But when you get it right, it’s without a doubt snow boots. Keeping these boots is the challenge and it’s soul destroying when they are taken away.
Wheelchair – This is my snow mobile. It can literally get me the hell out of there. No one wants to be stuck in the Antarctic in their birthday suit, but when they wake up there one day, no one would criticise them for hopping on their powered little escape wagon. I didn’t ask for EDS. I don’t want a wheelchair. But I DO want to be able to escape the confines of being a full time sickie and my trusty steed is the only way that’s going to happen without stripping me of my sock jumper and snow boots.
Some days, my body does superbly shitty things like dumping me in a week-long blizzard or giving me a polar bear to run from and there is nooooothing I can do about it. It’s entirely out with my control and I just need wait it out. Please don’t tell me that “getting out the house” will make my pain better. It won’t. Kindness will.