Awareness month and What you need to know about my EDS part 2!!

a colourful zebra

I decided about half way through my previous post that not only was the post getting incredibly long, but it was also going to make everyone switch off!! 31 questions would be fine if they were really short answers, but they aren’t! So I apologise for what might be two really long and tedious posts, but I really want to make you aware of the effect that something like a chronic illness or disability can have on your life. I am not after sympathy for my many problems and I’m not after pity. What I want to do is tell you about my EDS, tell you what having an illness like this can mean. This has been the point of my blog all along. Yes I want to share my crafting with you too, and I want to share my struggles and triumphs but the main point has always been to help people to understand what conditions like this can mean to people. To help others who may have conditions but haven’t got the voice to share, and to perhaps gain a little bit of understanding for us all. So without further ado, here are the final questions and answers for you.

  1. What is your support system like? I am lucky, my support system is good. Mainly I have my amazing mum who is everything to me. I love her with all my heart and she does so very much for me. I also have the rest of my family and also my carers too who again I wouldn’t be without. I have friends too, a close group some of whom I see sometimes and others I see rarely but all I consider friends.
  2. Do you think EDS is “expensive”? Yes – VERY!! According to the pitch for the “diversability card” which can be found here if you are interested: “From expensive equipment and adaptive clothing to higher energy bills and costly insurance premiums, disabled people pay over the odds for essentials. On average, disabled people face extra costs of £570 a month related to their impairment or condition.”
    I know that I have to pay towards my carers, I have to pay for expensive shoes that fit with my splints, I have to pay more for socks to have ones that don’t cut into my swollen legs, I pay more for toiletries because I HAVE to buy low chemical or chemical free ones so not to set my allergies off and this is just a few. I think that a lot of people think that we just get everything given to us, we don’t!! If I get an electric wheelchair I will have to self fund a manual wheelchair too because I am entitled to one yet an electric one will not fit in our car because I cannot afford to have a disabled accessible vehicle. I had to buy my mobility scooter just so that I wasn’t housebound because I couldn’t self propel my wheelchair anymore and my mum couldn’t push me. Bed pads and other things for my incontinence have to be paid for (I get a few pads on the NHS but not all of them that I need). I know so many people who think that I get given everything, and even that my benefit covers all my costs…. it doesn’t. I’m not the only disabled person for whom this is true, so please do not assume that any or all of us have everything given to us. It really really isn’t the case!
  3. Do you consider yourself disabled? Unfortunately yes, although I only ever call myself this or say disabled when I’m filling in a form I have had to get used to the fact that I’m disabled. I cannot go out without my wheelchair or scooter, I can barely walk around the house now even with my sticks. It isn’t the only thing about me, but yes I’m disabled.
  4. Have you ever experienced ableism? I guess this depends on your scope of the term!! I was first discriminated against when I was only just disabled, at uni I was told that I wasn’t allowed to go to a disabled school for school practice because I was disabled (I just don’t know if that is considered ableism or not!!) There are lots of things that we can’t do because we’re disabled, for example I love west end show’s but I can’t go on any of the special offer show and stay breaks because I have to book my tickets direct with the theatre as I need disabled seats and disabled rooms at a hotel. Again I’m not sure if these things are 100% what you’d call ableism or even really what that is!!
  5. Worst part of EDS – I have to say that it’s very hard to say the worst part of EDS, there’s so many things. I know it makes me sound very self pitying and as if I’m just wanting sympathy but it’s just a fact. I cannot say the worst part of EDS it’s all really not good at all!!
  6. One thing EDS has taken form you – EDS has taken so much, but I suppose one of the biggest things is a lot of possibilities. A lot of the possibilities that you have as an able bodied person you don’t have as a disabled person. Without getting all soppy and starting a pity party I don’t think that I can elaborate!! So onto the next question!!
  7. One thing EDS have given you – Well there’s not a lot, but I have got some amazing friends from being a member of the support groups for EDS. OK I can’t meet up with them a lot because it’s difficult with the sorting it out etc, but I still consider them to be some of my best friends.
  8. Something you wish everyone understood – There are a lot of things again that I wish people understood, but the biggest thing is that I’ve not chosen to be disabled or to have all the issues that I’ve got. It’s not because I’m fat (yes I’ve heard this), it’s not because I have wanted to be disabled. This sounds strange to some people because who would choose to be disabled, but there are people who think that I’ve either done it to myself by how I’ve been or that I’ve simply decided to be disabled. I haven’t, I wouldn’t. It’s just not a life to choose. If I had chosen my life I would be working as a teacher now, I’d be married and have children and would be living the life that I’d chosen. No I would not and have not chosen to be disabled and I wish that I could get everyone to understand that!!
  9. If you could rid yourself of of EDS symptom, which would it be? Sorry but again this is a pity answer, there isn’t one single symptom that I wouldn’t get rid of if I could!! I don’t know of any part of my EDS that I would keep, unless I was a dancer or gymnast and then I’d get rid of everything else except my bendiness!!!!
  10. One person you’re grateful for? My mum, without a doubt and without a second thought my mum. She’s my carer, my defender and my mum and friend. She’s most definitely the person that I’m most grateful for, I simply couldn’t be without her.
  11. Scariest part of your future with EDS? Being alone. Simply being alone, without my mum and family I don’t know what I’d do. Council care considers 4 hours of calls a day as full time, without mum for the rest of the time I honestly don’t know what I’d do. I don’t want to think about it to be honest, because it’s just not something I can do much about!!
  12. What are your health goals? I don’t have any, sorry not really my thing!!! EDS is so random, nothing is set and so even if I came up with goals something else would happen and that would be the end of that one!! It’s just not predictable and so I don’t have health goals!!
  13. Have you ever met someone with EDS in person? Yes a number of them, and made some great friends who have it too!! Also, quite bizarrely, someone who I went to school with has also been diagnosed with it too!! Life can be strange!
  14. If there was a cure for EDS would you take it? In a heartbeat. The problem is that I don’t know that if you cured my EDS that I’d be any better now because of all the issues that my EDS has caused. I think that if I could have cured it when I was younger and before all my problems I would have then, now I guess that thinking about it I don’t think that it would work!! I would love to be able to give one to my niece though as she has EDS too and I would not wish this condition onto her.
  15. How do you make your invisible illness visible? My invisible illness isn’t really so invisible any more! I have splints and a catheter, I use both walking sticks and a wheelchair and so really you can see that I have issues.
    And last but not least…….
  16. What does awareness mean to you? Exactly this. Sharing what my condition is like and how it affects me. Telling people how things affect me and what having my conditions are like builds understanding. As I’ve always said it’s not about pity or wanting sympathy, but instead I want to share what issues I have so that it might make people who have the condition too feel less alone.

Last time I said too that I would explain to you why the zebra. This picture explains it well…….

a why-the-zebra

Unfortunately because of this a lot of doctors think that “zebra’s” don’t exist, meaning that many people with EDS and other rare conditions struggle to ever get diagnosed. It’s often also why a lot of us don’t like doctors as we’ve had so many poor experiences and so are wary of seeking help for our problems. But we have to keep trying, and that is why awareness is so important. If we can get our message out there then maybe more doctors will start looking for zebra’s!

So that’s it, if you’ve finished reading this well done! I hope that I’ve at least helped you understand a little bit more about the condition and how it affects me. I’ve got a few more blog posts on the drawing board so hopefully it won’t be as long between posts this time! I’m hoping that I’ve done a little bit towards awareness for EDS, again if you would like to find out more (or suspect that you might have the condition) or would like to donate to EDS Support you can find Ehlers-Danlos Support UK here. I’ve added a list of common problems (that if you have a lot of you might want to look more into EDS) below for you to look at.

I hope you will join me again soon.

EDS symptoms

This is an American picture, if you suspect that you have EDS then please talk to your GP, genetic testing is only suitable for some forms of EDS and for hypermobility type there is no genetic test at all.

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