I thought I'd do an update post on my health, as it's been a while that I have properly talked about the situation. In fact, I'm not sure I've ever really put out there how much and how quickly things have changed. Last weekend... I couldn't walk. I couldn't lift my legs, lay down or move properly at all. I was crying in front of my husband, teeth gritted through fit-like spasms and the kind of pain I couldn't even try to describe searing through my back and legs. I needed to be dressed, I needed family to take my children to and from school, I couldn't bathe, I felt a burden and a failure. This is the first time I've been so honest about it.
Most of you know that after the birth of my second son three years ago I became quite unwell. I'd had a lot of odd things most of my life but it was post partum that my body really decided to rebel against itself. I spent the next 2 years going from hospital to hospital, consultants, specialists and clinics to finally be diagnosed with post partum Hashimotos Disease, Ehlers Danlos Syndrome H-T and Postural Orthostatic Tachycardia Syndrome. The big one of the three being the Ehlers Danlos syndrome H-T (Hypermobility type).
It's a genetic disorder which means my collagen is faulty. Collagen is present in pretty much every aspect of the body, so therefore, pretty much every aspect of my body is affected. It makes me hypermobile and stretchy inside and out. I've always had this and I have always had problems through my childhood, puberty and first pregnancy - however most symptoms, such as pain, bruising, swelling, subluxations etc were attributed to another odd condition I developed aged 6 (Henoch Schonlein Purpura). We never knew there was an underlying genetic fault running through my maternal line. Now, you can be hypermobile and have no problems with it at all. In fact for athletes and dancers it can be a wonderful aid. If however you experience uncontrollable joint subluxation and dislocations, pain, fatigue and dysautonomia alongside it (amongst other things - intolerance to local anaesthetic, heart problems, gastric issues) then it becomes something more than just a party trick. It becomes something you have to fight not to take over your life. I am struggling with that part right now.
I'm writing this today because I'm coming out of a really bad time, last weekend/week was horrendous. The thing is, it happened 10 weeks prior to me writing this now and it's pretty much on the cards that it's going to happen again... and again. Years of low level damage to my back, hips and other major joints mean they are weak. I do physio exercises most days and have taken up Pilates when I can manage it yet my decline is more rapid than I can try to claw back. My physio is concerned there may be spinal issues on top of hypermobility (my nan had to have a fusion) so I am seeing a specialist this Tuesday to see if anything else can be done to stop or help with this new debilitating aspect of my disability.
Personally, I believe the time may have come for me to look into some kind of wheelchair when I am coming towards/out of or smack bang in the middle of a flare up. This is a HUGE admission for me but you know what? It's one that brings relief to me, more than dread. It would mean I could take my children to school for the two weeks I'm usually out of action, it would mean I don't have to rely on (amazing) family members who already do their fair share in helping me out. It feels like a beginning rather than an end. I cannot live a life in fear of walking because of what it might do to me, I am petrified enough of experiencing that pain again when it comes around. The big question is will the professionals agree with me? Or will they see it as me giving up? After being diagnosed, I realised disability is so far from black and white, it's effectively rainbow. When looking for a cause or reason for our undiagnosed problems we focus so much on labels, comparable symptoms and statistics that emotion and personal feeling is shoved aside. When it comes down to the crunch, who ultimately decides what is right for my family and I? I shall see what Tuesday brings...
In the meantime, feel free to check out this link for more information on EDS. Cherylee Houston from Coronation Street (Izzy Armstrong) is a patron of EDS UK and has the same disability I have (so does her character on corrie). http://www.ehlers-danlos.org/about-eds-uk/our-patron
Do you live with chronic pain or a disability that affects your mobility? Do you use a wheelchair or mobility aid? I'd love to hear your comments and experiences.
Who is Julie?
30 something, mother of two gorgeous boys, lover of one gorgeous husband, perpetually living in a dream world full of wine, chocolate and artsy crafty things.