I have been labouring under the threat of 'needing a wheelchair' for about 2 years now, stubbornly doing physiotherapy exercises every evening- even when I would rather die than do another 30 knee dips (I seriously hate those!). I have forced myself way beyond my comfort levels in the pursuit of normality only to discover that my body doesn't feel like complying with my idea of normal....thanks!
Its a difficult concept to menouvre, finding the balance between fighting to get better and accepting the reality of your health and it's limitations. On one hand you have specialists promising you that you'll feel better soon, telling you that you have to push your boundaries and have higher expectations for yourself. On the other hand you are told, the first step to living well with a chronic illness is acceptance. Two very conflicting ideologies, which can leave you feeling like no matter what you choose, you just can't win!
For two years I chose the fight option. I really felt that I needed to try everything in my power to get better, my biggest fear is that in 10 years someone will tell me "if you had just done, (insert miraculous medical treatment here) you would have been well for the last decade....sorry!". The thought of finding out I could have been living better than I am is terrfiying. But at some point you have to realise that you can't possibly do more than the 10hrs of physio a week, work part time, eat well and take care of yourself and a home without making yourself really ill. Not to mention finding time for relaxation and some sense of a social life. You have to give in somewhere along the line and make a compromise.
All the hard work I have done with physio the last couple of years has undoubtably made a huge difference. I am certainly a lot stronger than i was and I will continue to do it, no matter how much I want to kill my physio every time she tells me "to walk properly", I will continue to smile and thank her... even though I want to shout " FUCK YOU DEBBIE!! JUST BECASUE YOUR COLLAGEN WORKS PROPERLY, DOESN'T MEAN YOU HAVE TO BRAG ABOUT IT!"
Anyway, rant over! I must get to the point.
At some point you just have to adjust your expectations and make the best of your current set of circumstances. For me that came about 6 months ago, when I realised that progress had plateaued and I wasn't getting any better. Not worse either. But definitely not better. So, armed with a new sense of self awareness, I decided i needed to find a way to enable me to do the things I couldn't do as I am....enter Rickie!
I decided to get a wheelchair because if I had to hear myself say 'I can't come, it's too much walking' one more time, id have to punch my own lights out!
Initially the wheelchair service sent me a very lovely, massive, heavy wheelchair my husband couldn't even lift! But after that went back and I explained that I couldn't lift let alone push it, they made me my very one wheelchair.
I made sure I emphasised the need for lightness, so I don't dislocate my arms when trying to move it. I explained that what I needed was just LESS wheelchair! Just give me the wheels and the seat! I am fiercely independent, and naturally spontaneous so it's important for me to be able to decide im going into town and just go. I have no idea about wheelchair terminology, when she asked me what kind of wheelchair I wanted, I said "a light one I can move myself!". Luckily the lovely lady understood what I was wanging on about after a while ...she tried her best to humour me and work out that I ment a self propelled chair.
Anyway, moving on, when I picked up my chair I had mixed feelings. It was like the difinative moment I had made the decision to accept I have a disability and it's not going away. But that was nothing to the overwhelming feeling of joy I felt the first time I went out, ON MY OWN, in my wheelchair AND I came back feeling good (as opposed to coming back feeling like I was gonna murder anyone who looked at me the wrong way because the pain was mental!). It was a revelation!
At first I felt pretty awkward about going out in my chair with people I know . People who don't know me just see a person in a chair. But people you know struggle to grasp the concept that you would use a wheelchair if you can walk. It's hard for them to imagine a reality where it hurts so much to walk that you would choose not to do it. And because I only use my chair for things I can't do without it (I don't use it for work, or about the house. just when I have to walk for more than a few mins), Most people at work can't reconcile the two Annie's. But, people have surprised me, no-one has judged me (well not to my face Anyway) and they have all been very supportive. Most people just want a go, which I don't mind, it gives them an idea of how strong your arms have to get to push yourself!
For Rickies maiden voyage I went to the harry potter studio tour on the day the forbidden Forrest opened. It was great! I was the first person to wheel through the forbidden forrest....beat That!!! I can go food shopping and pick my own fruit and veg, rather than having to rely on John from asda to bring me carrots that aren't off or not to substitute carrots for parsnips...even though I have already ordered parsnips and now I have 2kg of parsnips and no carrots... who can possibly use 2kg of parsnips...thanks John! Great job! Or mooch round town, or stay out for more than the bear minimum amount of time that is socially acceptable to reassure my friends that I am not antisocial, or go to live music! For the first time in years, the possibilities feel endless.
Really, I just wanted to share the most amazing feeling of freedom I got from getting this wheelchair. Acceptance has literally never felt this good!