Days like today, I wake up and everything seems to hurt, my bones, my joints, and my neck in particular. These are the days that you feel like you could just crawl back into bed and just sleep it off, but that doesn’t make it go away as it is still there when you wake up, so you just have to get up and deal with it before it takes control of you.
My first diagnosis of being Hypermobile with EDS (Ehlers Danlos Syndrome) actually came before I had my operation in February 22, which was lucky as I could provide that to the surgeons before I went under the knife! Thank God that I had the conversation with the specialist regards to my Rectocele that I had been diagnosed with by the doctor back in July 21 as where I am today may have been so different.
It came about as during that conversation when I was explaining what I had experienced as a child, things that I didn’t even think were relevant, like having hip dysplasia, bruising by simply touching the table, being able to do the splits and sitting cross legged with my knees right down, twisting around like an owl and my skin being extra stretchy.
I did not realise that was not a normal thing to do, I thought everyone was like this. But for me this was my normal, this was me, yet I was not prepared that it would come to haunt me as an adult.
As I continued discussing about the various things that had happened when I was a child, like dislocating my kneecap when I was in primary school, twisting my vertebrates in my back in secondary school, and when I broke my elbows, when I fell off a ladder just over 12 years ago, all of them taking so long to heal, longer than normal he suspected this could be down to suffering with EDS, which makes such sense to me now.
The more I am learning about EDS, the more I realise that there are now reasons why my body is doing what it does and why it takes longer to heal. It is why I have to now work on myself to keep my body stronger inside, especially as everything tends to move about with that extra elasticity you have with EDS, and yet another reason to explain my early onset of prolapses!
So, one of the best things that came out of that day was this diagnosis of EDS that can often take 10 years to diagnose.
In May 24 after seeing my rheumatologist about a flare up with my Raynaud’s I was experiencing, which I now realise was to do with the huge emotional stress, he explained that the EDS was also a huge factor. The yoga I had been doing is great, but I had to watch that I did not overdo it, especially with my neck as I did not want to aggravate this anymore. Having an exceptionally good yoga teacher that understands my condition and would tell me when I was bending too far enabled me to continue what I loved.
It becomes frustrating as often I am not aware just how far I am twisting or bending as it is natural for me. You also find that you have to bend further or twist further to feel like you are actually doing something, but then you also have to be careful as you can actually damage yourself by things popping out like my hip bone used to do (and also my jaw has started to if I spend the day talking!) and that is where my teacher helps me.
Currently my EDS journey has given me a new problem with my neck which is causing an awful lot of pain, and mobility and weakness issues with my hands and arms. Seeing the impacts on my wrists and my shoulders already is worrying. My ability to not grip things for long periods, problems with unscrewing lids, lifting the kettle when it’s full, carrying bags of shopping, filling a flask from the kettle, all things that I used to be able to do automatically, now I have to accept some days I just simply can’t do it anymore.
I have good days and bad days. Some days there is nothing wrong and other days everything is a mission, but I have now learnt over time to accept this is just the way it is. This is part of both my EDS and my Raynaud’s and sometimes it is difficult to know which ones is which as there is such a crossover between the two. My journey now is to learn more about how it affects me and how I can overcome the problems I have. I am not giving into this, and walking is really helping me fight both of these. Even though there are days where I feel that I have aged 30 years overnight and my body is just living in the body of an older person, I carry on. With the walking, it enables me to try and forget what is going on with my body.
Yes, it is challenging, and at times when you start out walking, you’re in an awful lot of pain, however within 10-20 minutes of walking and constantly looking around in nature and observing what is happening with the trees, the birds, the air and the smells I am able to forget and take my mind off of my pain.
This is how walking has really helped with my EDS & Raynaud’s.
If you suffer with EDS, then why not visit the website, and see how they can help you too but also try walking. Walking has helped so much. Walking is helping me deal with my EDS and Raynaud’s. Walking has given me a new mindset. It is enabling me to be in control of my life again.
When the pain gets too much, I just learn to accept it. I have good days and I have bad days and on those good days, I choose to thrive and get out there and do what I can. On the bad days, I just let my body recover and heal. I cannot change my diagnosis, but I can change my mind and how I deal with my days.
The Ehlers-Danlos Society: Â Â Â Â