Since July my body has undoubtedly changed. There has been something new going on with my illness and I’m not exactly sure what or why. I’ve been battling chronic fatigue like nothing I’ve experienced before and it has be accompanied by a general sense of feeling really unwell. It has been severe, debilitating and at times relentless.
I have managed to build up fitness within this time and pushed on through and succeeded to an extent. After 5 weeks of slowly climbing up from rock bottom I went on an amazing trip to California and then had a fleeting return back to work. Both were extremely difficult but rewarding and worth it. It’s like I seem to slowly and steadily climb up towards wellness but then, all of a sudden, my grip is lost and I tumble right back down to the bottom and have to start all over again.
I’ve come to accept a few things. I’ve known it all along but failed to accept it as truth. Pushing on through may result in temporary success but inevitably it makes things a whole lot worse. However, not one to be defeated, I have also accepted that a few adjustments may be necessary at times to achieve my goals.
If you had spoken to me at the beginning of the year and told me I would need to rely on a wheelchair a couple of times I would have told you that you were crazy. No way. I was capable and I was managing. I was walking miles each day and I was doing it. The truth is, my body was doing amazing things for me. Amazing things that it simply could not sustain. Eventually it would break down and say “no more”.
The first time I used an electric scooter I was mortified. I was in California, at Disneyland, and even though I felt like hell I was determined I was going to do it all and enjoy it. By 11am, a measly two hours in, I was dead on my feet and struggling to even walk. My husband, bless him, talked me round into hiring a scooter. We had only one day to enjoy both theme parks and the options were 1) go home or 2) hire a scooter.
Like I said, I was mortified. That’s the plain truth. I didn’t feel like I justified the use of one. I mean, I am in my twenties and I don’t look sick. Surely they would think I was a fraud? And what would people think when they saw me?
Well I’ll tell you something. As soon as I sat in that scooter all those worries dissipated. I had this huge smile on my face and I couldn’t stop giggling. It was simply the best decision I made that day. It was like a weight has been lifted and I instantly felt better and I had an amazing time.
The staff at Disney are wonderful and, as for other people, I simply couldn’t care less. Yes people looked. I’m sure many thought, “I wonder what’s wrong with her?” or “she doesn’t look sick”. But you know what? I was oblivious the majority of the time. I was too busy enjoying myself. And any time I did notice I started singing “Ridin'” to my husband and we would be in stitches.
“They see me rollin’, they hatin’, patrollin’, they tryin’ to catch me ridin’ dirty”
I have no prejudice against wheelchairs at all. I just did not see myself being in one. Since that day at Disney though, my whole perspective has shifted. You just have to adapt and do anything that will help you achieve what you want to do. I am capable of walking a lot on some days. On others I simply haven’t been capable. It’s just the nature of the illness. It doesn’t make me a fraud.
I have used a chair on another occasion and that was to visit the Enchanted Forest with friends. I rented one and my mum and I gleefully road tested it to make sure I was feeling well enough to go out in it. We whirled around the park and again the smile quickly spread across my face. What a joy it was to be outside in the fresh air after being house bound.
My friends are amazing and were so supportive and totally understood the need for the chair. My husband wheeled me round the Enchanted Forest and I had my tripod and camera to take some photos without even leaving the chair. Without it, I simply would not have managed and would have been sat at home upset and frustrated at missing out. It was the start of me getting out and about again and then slowly getting back on my feet.
I’ve come to accept that I need help and assistance at times. It might seem embarrassing at first but please embrace anything that will help you to get out and do the things you want to do. Life with fibromyalgia is a bit of a roller coaster. There’s some ups, some downs and some unexpected turns. Embrace the ride and do all you can to enjoy it.
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