Wow, 6 months is very almost over, but this challenge started long before this. When Keith first mentioned this challenge he asked me if I could be open about my condition to our friends and family. This wasn’t an easy decision. I have always been very closed about what I go through on a daily basis and now I had to accept that people would need to know, questions would be asked and my biggest fear, people would look at me like an injured puppy!! However, how do I not agree, there’s Keith offering to do something incredible to raise awareness for a charity that has given me hope.
Over the last year and especially the last 6 months, I have had to open up and explain my condition to family, friends and strangers. Understandably there have been questions along the way, some funny, some much harder to acknowledge – I will get onto that later.
This is me, Bendy, but not Broken!
I have always been bendy, but it just meant I could sit in a W and lay flat, bend my thumbs down to my wrist and do my bra up without difficulty! However, I honestly don’t remember a time when I didn’t hurt; to start with the pain was a niggle, but it grew. I first started to dislocate when I was 10 following a trampoline accident (however, I have always had the condition). Believe it or not I was actually good at it and fit; how things change. These dislocations continued to increase in frequency, I’ve had three knee operations but can still splat the floor in style, as many of you know! The knee dislocations are very obvious to others, but all my joints like to pop out, fingers dislocate when cutting my dinner (or holding a glass of wine – I have never dropped a glass, I was brought up to well for that!), shoulders dislocate from wearing my bra or holding a bag on my shoulder and the new and more painful hip dislocations. But, to be honest, the thing I find the hardest is the fatigue. I sleep for an average of a couple of hours per night, my pain is closely linked to my fatigue, but it is very hard to explain to others. It isn’t a case of being tried, my whole body stops working. I have been walking to the shop and suddenly unable to move my legs and had to call Keith, I have been sat on the sofa after a bad day and suddenly can’t lift my arms or walk – Isabella finds this particularly comical as she likens me to a sloth! Daily life is tough, but hay everyone’s is. I don’t want sympathy, I don’t want to be picked up when I fall – leave me to swear, relocate joints and then find me a glass of wine!
As for the questions I have been asked; as I say have made me chuckle, some I have had to think carefully about.
Can your bendiness me useful (wink wink)? No! Dislocations are a turnoff!!
Can you not just take a pill? If it were that simple, don’t you think I would?! I have tried loads of meds, but a joyful part of the condition is that you can become sensitive to meds and their unwanted side effects. I take what I can to remain functional.
I’ve heard this diet helps! Ummm, no it doesn’t, otherwise I would be better. My condition isn’t something that is currently curable. The collagen is faulty and until that’s fixed I won’t be fixed.
Surely you should not work and just rest? I have worked very hard to be a teacher, I love my job (most of the time) and mentally work is essential. I accept that reducing hours in the future is inevitable, but for now work gives me a purpose.
I bet having a baby is easy for you, bendy is good? Isabella is our miracle baby, her twin sister was not so healthy and didn’t survive in my body. I am not well enough to have any more babies, I would love to, I have always wanted more babies. So if you have a baby please let me have a squeeze!
Wouldn’t it not be better for Keith to be at home to help you rather than doing this challenge? NO! Keith is my husband and not my carer. What Keith is doing is raising awareness for an invisible condition. He is showing Isabella that not all of us are broken, that those who can, should.
Weirdly this challenge has impacted me more than I ever thought it would. I have accepted my condition on a whole new level, people know now. I now know the impact it truly has on Keith. His recent post about the day I was rushed into hospital made me cry. I remember that day like it were yesterday, I honestly thought I was going to die, but hearing Keith’s version made me see it from a totally different angle. Keith, my mum and Isabella see me at my worst, they see my tears, they see me when I take off my i’m Ok face. I try to hide it from Isabella but she is way to clever and sees through it most of the time. Keith literally picks me up, hold me when life gets too much and gives me the strength to keep fighting.
So that’s me.
Please if you can donate please do, my husband is amazing and deserves all the support he can get. www.ironcause.co.uk/donate