Ehlers F@cking Danlos

So again I start this post with the caveat that I am not in any way a doctor or a scientist and being honest, I actually have the attention span of a gnat, so I promise you I won’t have fully read all of the articles on EDS properly. If you want to know more about it you can find the info here:

Super bendy

I was always super bendy as a child, I could jump into the splits easily as a child, I could do a back-bend on command ( Oh how I loved showing my Salt-n-pepa back-bends at uni). People would comment on my arms looking weird, my ankles would bend so far inwards that my shoes would last five minutes. I was even videoed for a college to show how odd my ankles, feet, knees and hips were! But still we didn’t think anything was wrong. I did used to wake at night sometimes with the most horrendous pain in my legs, but we just put that down to growing pains.

Fast forward to my twenties and pregnancy. I was having huge issues with my pelvis and was diagnosed with Symphysis pubis dysfunction caused by pregnancy. This resulted in me being induced as I could hardly walk. Unlike most people, once the baby was here I didn’t get better, but thought I was just unlucky. I ended up in a wheelchair with my 2nd pregnancy and quite disabled. Around this time my sister ( who had already been diagnosed with Chiari Malformation and scoliosis) was diagnosed with HEDS.

Diagnosis

I avoided diagnosis for years after my sister was diagnosed, being honest I was scared and didn’t want it. But the signs were there and I got to the point that I couldn’t avoid it any more. I had almost died giving birth via section to my daughter as my artery was cut as the surgeon did not expect it to be where it was and then I had a subsequent CFS leak, all can be linked back to EDS. After yet another trip to A and E I was referred to a rheumatologist who confirmed HEDS. I was then referred to the Royal National Orthopaedic Hospital where again it was confirmed and I was offered a 3 week hospital stay which I can honestly say changed my life with regards to managing the condition.

Life with a chronic illness

Well being honest it is utter shite. I am not about to wear zebra t-shirts or call myself a spoonie (not that there is anything wrong with doing that). It’s just not me. Everyone has different coping mechanisms and mine is mostly to try and ignore it.

I am lucky that I do have good days, I have days where I can exercise and days when I can go for walks, I know some people aren’t so lucky. Unless I tell you, you probably wouldn’t know there is anything wrong with me. But there is, and it’s tough. At the moment I am in the middle of the mother of all flares, I think my hip has sub-luxed which is causing massive pain and I literally haven’t been able to walk for the last few days. The pain is bad enough but flares also bring on extreme fatigue, I tend to just want to sleep when I flare, but I am a Mum and I can’t always just sleep. Luckily my husband is great and totally gets it but it is still hard.

Frustration

Ooh do I feel frustrated! I am frustrated that my body lets me down so much. It is really frustrating when you have plans you have looked forward to only for EDS to take them away from you. It’s frustrating when you have paid for a gym membership to help your EDS that you can’t use as you just aren’t well enough. It’s also frustrating when people keep asking ‘have you tried…’ yes Janet I have tried that but for some reason eating vegan, yoga, reflexology, positive thinking etc etc hasn’t worked. I am frustrated that a lovely few days away can result in extreme exhaustion and a massive flare.

I am also frustrated that there are many comormbid conditions associated with EDS which I have, such as migraines, Reynaud’s , IBS, and I also have POTS symptoms!

Guilt

Yep, I feel so guilty about my condition. I feel guilt that my children may inherit it and I feel guilt that I can’t do what I need to do for my kids all of the time. I hate that I can’t always give lifts. I feel guilt that sometimes I just want to sleep when I should be making cakes or some other crafty Mum thing. I feel guilt that my husband who works really hard has to pick up the slack. I feel guilt that our house is not as clean and tidy as I would like because I just can’t do it, I feel guilt that my kids know all about the condition and have never known their Mum at full capacity. It truly is crap.

Anger

I am also angry. Obviously I am angry that I have EDS, but hey I am grateful that I have it quite mildly compared to others. I am angry how people with chronic illness and people who are disabled are treated in this world.

I have had people who think I am lucky that I get to rest in bed and watch Netflix or whatever. I promise you that I and am sure everyone else with a condition would happily swap that for our freedom back! What they also don’t get is often we aren’t watching TV as we are so exhausted we can’t take it in or we are in so much pain it’s impossible to get in to anything. I do get out and about when I am well but some people really don’t, imagine lockdown for the rest of your life, still so lucky??

Sadness

I am sad, sad that I can’t live like I would like to. Sad that I can’t be everything that I need to be for my kids and I am sad that society still thinks people with chronic illness are lazy.

Why did I write this?

Quite often when I am really poorly I want people to know, I think it may be because I want them to know that I am not making it up (anyone with a chronic illness will have been made to feel like they are a hypochondriac or have Munchausen’s syndrome at some point). It took 17 years for me to receive a diagnosis and many times I was made to feel like a liar or a time waster. Hearing a doctors receptionist telling you yet again that your test results are fine is just demoralising, it honestly isn’t good news.

I also just wanted to acknowledge that it isn’t fun having a chronic illness and people just don’t like to hear about it, I get that it’s boring and we don’t always manage to say we are fine. Sometimes we just aren’t and sometimes we want to be able to say ‘Fuck this, I am not a zebra* I am a human and I am a particularly pissed off one at this point!!

*Zebra – https://www.ehlers-danlos.com/why-the-zebra/

Much love,

B xx

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