As regular readers know I have Ehlers-Danlos syndrome. Ehlers-Danlos quite often seems to bring along quite a collection of it’s friends to play with those of us who have it. It’s really not a case of the more the merrier though!
For some of us, including myself, EDS affects the digestive system. It can cause a variety of problems there including delayed gastric emptying, otherwise known as gastroparesis. Continue reading
NOTE: The Fay Farm‘s CBD Rejuvenation Lotion was gifted to me as a member of Chronic Illness Bloggers free of charge in exchange for an honest, unbiased review. All views in this post are my own and I have in no way been influenced by the company.
I haven’t forayed into reviewing body products before but I jumped at the chance to be able to try it and to share this product with you all in partnership with the Chronic Illness Bloggers network. It’s very unusual and sounds absolutely perfect for many of us spoonie types.
Handily it arrived just in time for a bad episode health wise for me – the perfect time to put it to the test! Regular readers will know I was at home sick as I was in a lot of pain from my conditions and multiple dislocations. Continue reading
What a week! I have not had time to sit down and write a single word here as every day this week I have had an appointment (or even two!) somewhere. So many hospitals! Oh the life of a spoonie!
On Monday morning I was at the vascular surgeon who is planning some scans and tests to hopefully rule out another possible rare condition (I’m not having much luck so far on those fronts so wish me luck!) and then over to haematology in the afternoon. I’ll worry about those if/when I know more after all my tests but I have several planned including scans and one involving a hospital stay which I’m hoping I can get out of the way before September. Continue reading
To round off EDS Awareness month for 2016 I have my first ever guest post!
This post is by my amazing friend, the lovely Bobbi of Ring Splints by Zomile who has the rare Arthrochalasia Type of EDS. When EDS is covered in the media it’s usually sufferers with my own type which is the most common form of the syndrome.
Arthrochalasia EDS – My Story
I’m Bobbi, I have Ehlers-Danlos type 7 – now called Arthrochalasia Type along with associated conditions and rheumatoid arthritis.
There are believed to be only around 40 confirmed cases of arthrochalasia EDS in the world, which I suppose makes me pretty rare!
Ehlers-Danlos is a connective tissue disorder and there are many types all of which share some complications. The severity of the illness can vary greatly from person to person and type to type.
I have known all my life I suffered with this rare syndrome. When I was born My Mum said she knew I would be trouble, how little did she know! I was born breach like a small package; all parcelled up, arms and legs and head folded in like a ready packaged chicken. My Grandma commented that I looked like a Pekingese dog which sounds funny but actually I had a very tiny little face with big eyes and my skin was so loose and wrinkly it was as if I had skin two sizes too big. It was said at first that I was very overdue, but that quickly turned out not to be the case. I just had the cutis laxa type appearance of wrinkly see-through veiny skin all over my body.
There are many times I feel like I could happily wish away my EDS, days when I’m in a lot of pain, having a lot of dislocations, or otherwise feeling very much under the weather as a result of its myriad symptoms.
When I think about it more deeply however I realise that without my EDS I would have grown up to be a totally different person! I have had many experiences and learned many things as a result of it that regular folks don’t have.
So, in no particular order, here are ten things EDS has taught me:
- There is always a way to do something! EDSers become very good at thinking outside the box in order to find a way to join in with an activity or get somewhere. If you want it badly enough, you will find a way.
- To treat my body with the respect it deserves. Rest is pro-active not time wasting! Over-doing it will only lead to a bigger crash later on, pacing is the best way of making sure everything gets done.
- I can be who I want to be. Just because I’m disabled doesn’t mean that’s the only label I can ever have.
- It’s OK to be different… Using a visible mobility aid or support and braces is a hard thing to get used to, people stare and ask awkward questions as they assume someone my age must have injured themselves – after all they couldn’t possibly be one of those “disableds”!
- …and that what other people think of you doesn’t really matter. In the grand scheme of things the only person whose opinion of yourself matters is your own. If you need that cane or wheelchair to help you get about it doesn’t matter what Mrs. Busybody thinks of you what really matters is how much more able you are as a result of using it and how much easier it is to manage your condition. The moment you stop judging other people and forget about other people judging you, you feel so much more free.
- I have a voice! And I mean literally not figuratively here. For me I was pretty used to standing out as a 6ft tall marfanoid woman so I had never had to speak loudly to be noticed. When I became a wheelchair user I had to discover an “out-door” voice that I’d never had before as many people seem indifferent to chair users.
- Never say never. I thought I would never go back to college or find a way to use my skills, now look at me! I’ve done the former and I’m doing my best at the latter.
- I’m stronger than I ever thought. I’ve been through so much! Operations, hospital stays, physiotherapy, all manner of tests, ongoing gastric problems, years of corrective therapy for my feet and yet I’m still here and still fighting.
- Who my real friends are. When you’re chronically ill you need your friends more than ever but they seem to magically fall away over the years. Many people just can’t deal with having a sick friend and stop calling or coming over. Your real friends will always be there for you, even at 3am in an emergency.
- How to prioritise. In order to get the best out of life I have to prioritise my activities and spread them out, I’ve learnt the hard way that I can’t do everything as much as I want to.
If you have a chronic illness, what things has it taught you?