Ehlers Danlos Syndrome Awareness Month

In a break from the norm I’m posting an article that has nothing to do with books or writing. Don’t worry, I’m not changing the focus of my blog to my health. And I’m not in search of sympathy, either. But my health has seriously impacted my ability to write. I’ve been working hard this last year to gain control of my health and you’ll be pleased to know I’m making progress, and I very much hope this will positively impact my writing, as well as many other aspects of my life.

I’m posting this in support of Ehlers Danlos Awareness Month. Many people, including health professionals, have never heard of this condition, much less understand it and how it affects sufferers. For treatment and the understanding of this group of conditions to improve it’s essential that we discuss it more openly. This is my contibution, and thanks in advance for taking the time to read it.

My EDS Story

May is Ehlers Danlos Syndrome Awareness month. My friend Cassandra Campbell, who is also a fellow EDS-er, encouraged me to share my story to help highlight this condition and the impact it has on sufferers lives. I don’t have any qualms talking about my illness but I do struggle when it comes to expressing how it truly affects me in my day to day life and how it makes me feel about myself. I often downplay it or laugh it off, mainly because I feel embarrassed or misunderstood (“But you don’t look/sound disabled!”), or guilty because I’ve missed yet another friends birthday/dinner/night out, or my son has had to help me up off the floor again, or stay home to help with chores instead of going out with his friends.

So here goes. Here’s my story. Today I’m not going to downplay it, but I can’t promise not to laugh it off. Sometimes it’s the only way.

Throughout my teens I was always injuring myself. Sprained ankles, torn ligaments, broken bones, aches in my legs and arms. But I was very sporty and put it down to that. I thought everyone was the same at that age. A combination of growing pains and clumsiness. I was always active, always out. I went back to work after my son started school and enjoyed a full and busy life. I suffered from IBS but was dealing with it reasonably well for a time. But soon I was in constant pain and discomfort. Sitting and walking became very uncomfortable. I had pain from my back and abdomen down my leg. Then in 2009 I was diagnosed with Endometriosis. I had major surgery that year to remove cysts. But I still felt unwell. The following year I lost my mum and my job. The cysts came back. I had keyhole surgery, but I just wasn’t recovering. My whole body hurt, I was constantly fatigued. The cysts came back again so finally, at 35, I decided to have a hysterectomy in 2011. And still I couldn’t recover. My body felt like lead. I was lost, swallowed up by this black hole of pain, fatigue, fear and confusion about what was wrong with me. My GP was no help. He told me I was depressed and accused me of being addicted to painkillers. I probably was depressed but that was not the root of my problems, it was a result of them.

It wasn’t until 2012 that I was finally diagnosed with EDS, by a Benefits doctor of all people. I was then able to get referred to Prof. Rodney Grahame’s hypermobility clinic at UCLH (Prof Grahame has now retired but the clinic is still there). I spent much of the next few years being farmed out to numerous doctors all over London; gastroenterology, uro-neurology, neurology, podiatry, physiotherapy, occupational therapy, dietitian. I had bladder tests, nerve conduction tests and the dreaded Tilt-Table Test. It all confirmed that I had EDS, POTS (Postural Orthostatic Tachycardia Syndrome) which is a form of dysautonomia, and secondary Fibromyalgia. And I learned that my IBS was connected to the EDS.

I suffer nerve compression in my elbows and sciatic area. I’m starting to get nerve pain in my fingers and toes. I have bladder urgency and frequency. I get up 4-6 times at night to go to the loo. My joints feel loose and are constantly slipping, or subluxating (partially dislocating) with occasional dislocations. I subluxated my shoulder 18 months ago walking my Yorkie Russell when she was a pup. I ended up tearing part of my rotator cuff which still hasn’t healed properly. My fingers, wrists and elbows pop out almost daily, sometimes just from combing my hair or brushing my teeth.

I find the POTS very hard to deal with, maybe more so than the pain from the EDS. In fact, this was one of the main reasons I got rid of my car. My body doesn’t cope well in the vertical position. My temperature doesn’t regulate well. I have poor balance, constantly stumble. I get very dizzy, experience visual and auditory distortions. Sometimes I black out. My heartbeat palpitates and races (90-120 bpm), blood pressure crashes (90/45) or spikes (170/135). My hands and face go numb and spasm. I have blacked out in public places several times so I now wear medical badges around my neck when I go out. Or sometimes I feel Potsy and have to lie on the floor before I collapse. Mostly, I just tend to not go out very often, especially alone. It’s scary and embarrassing for me and for the people around me.

If I want to go out I have to make sure I have 2-3 free days before and after so I have time to rest and recover. I can’t really do multiple things in a week as one outing can wipe me out for days, sometimes weeks. If I do go out I have to plan strategically who’s coming with me, how I’m getting there, how far I may have to walk, how long I have to be upright for, where are the toilets, will I have to negotiate stairs. And as I have stairs at home, I frequently sleep on my sofa instead of going up to bed. But the toilet is upstairs so I have to use a commode in my living room. I struggle getting in and out of the bath for a shower so I mostly wash in a bowl downstairs. All these little indignities add up so it’s really important to have a thick skin and a sense of humour.

I don’t sleep well, usually 2-4 hours of broken sleep at night if I’m lucky. Sometimes I sleep all day. I have to be vary aware of my pacing or I have massive crashes or flare ups that can last for weeks. When I’m having a flare up I tend to hide away from everyone because I worry they’ll get fed up with me bailing on them or not having the energy to talk. Sometimes I go too far the other way and try to emotionally support everyone all the time because I feel it is the only thing left that I can do for the people I love, and then I have nothing left for me.

I’m constantly struggling to find where my line is. I’m learning. It’s important to push, but only up to the line, not over it. After spending 3 weeks in Stanmore Hospital’s Pain Rehab I think that maybe, sometimes, I’m even winning. I learnt so much, and met some amazing people there that have become very important to me, a little network of people who I don’t have to explain to, or make excuses to or feel guilty around. It helps so much. I met others who have it much worse than I do and yet still laugh, still smile, still live their lives to the fullest of their abilities. I’m now exercising (very carefully) and getting stronger. I’m pacing better. I’m planning nice things to do with my friends and family. And, God knows, I’m blessed to have friends and family that support me, even if they don’t completely get it. To those of you who have been by my side every step of the way, I give you my thanks. I wouldn’t have remained intact without you. You have my deepest love and appreciation. My son, Akira, is my biggest source of support and he never complains. He works, goes to college and helps me out at home. He comes with me to my hospital appointments. We plan fun days out at least every couple of months so we have nice things to look forward to. We make memories. And we laugh. A lot. I hope he knows how much I love him and value him, and how proud of him I am.

That’s really why I decided to share my story. Perhaps I’ve been too scared of being pitied or embarrassed by my limitations to really explain to the people I care about exactly how this condition affects me. Perhaps I’ve stepped away from people out of fear they’ll step away from me. That’s something I’m working on. Let me say right now, I neither want nor need your pity. Or sympathy. Just understanding and compassion, your friendship. Some of you I don’t see much of anymore, and that’s largely on me. I miss you. Please don’t be afraid to come over or invite me places, and please understand if I have to say no that it’s not because I don’t care. And though I may not be able to do all of the things I used to do there are other things I can do. Maybe you could come have a cuppa with me and laugh when I fall over and then help me up off the floor. Maybe you could come with me when I take the dog out on my scooter instead of meeting for a drink, or do a workout session instead of going dancing.

And maybe sometimes we EDS-ers just need time and patience and an arm around the shoulder while we grieve for the person we were, and accept, adjust and embrace the new version of who we are now. Don’t give up on us. We’re still us, just a bit different. And who says different is less?


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