so yesterday I had a wheelchair fitting. I was not letting the bloke leave until everything t was perfect. I’m also upgrading to a salsa quickie mini, plus shoulder straps so my spine stays upright.
I can’t wait, with the chair I have, I leave the house once a week.
I can’t wait to go back to bingo and spent two hours in Waterstones just browsing the bookshelves. It’s silly the little things you take for granted. I can’t wait to have my independence back and finally go places on my own for example, hour excursions to the shopping centre will simply people watching and eating ice cream at the beach on a sunny day
Can’t wait till it comes don’t worry they’ll be plenty of pictures on my Instagram for you to see:-)
Until then I’m promoting carefree in consequence which you can get on my blog and there are links for my various social media. My library is even considering let me do a book signing. I also have a local independent bookstore interested all I have to do is send them a copy of the book and sign the contract.
I hope you enjoy it and I hope the paperback quality is its absolute best because that’s what I want my readers. It would be really nice if you could leave me a review on Amazon as well ❤️
Today has been my ‘get-my-medical-shit-together’ day.
So guess who was overdue for a wheelchair review! Waiting for somebody to ring back with an appointment! (Honestly, their systems for following up appointments is rubbish, you end up doing the job for them.)
I’ve left a message with my doctor receptionist about the spinal injections because according to radiology he hasn’t sent a referral even though it’s in his dictation notes(?) – so, the referral needs to be typed up and sent again urgently as I’m not coping with medication alone.
When they come out to reassess my chair I’m not being brushed off until it’s absolutely perfect. It’s not right to be in pain and only tolerate your wheelchair for an hour.
My point? If you don’t hound and chase up things then you don’t get. Be a #girlboss/boy boss and get your shit done! Things aren’t going to fall into your lap.
I’m quite proud considering I’m woozy from needing morphine last night.
So yesterday I had my bone scan for my arthritis. I can confirm that I now know how it feels to have radioactive dye in me, being strapped down to a bed and rotated like a rotisserie chicken!!
I lit up like a glow worm on steroids. I now have to wait for my injections and fight with my GP to start anti-inflammatories… joy.
Who said life is boring?!
Fast forward to today and I’m in agony… surprise surprise!!
By the way, the radiology department needs to come up with a less frightening name than nuclear medicine, it doesn’t exactly put you at ease.
Apparently, my veins are thin and spindly.. great!!
So this morning I got my appointment through to have the steroid injections in my back, it’s next Monday. It can’t come soon enough! I just hope they work, I’m sick of taking morphine with it not doing anything. Hopefully after that my GP will finally put me on some anti inflammatory.
If any of you have any tips of how to manage spinal arthritis please let me know! I’ll try anything!
I’m currently waiting for a new arm chair and waiting to get my wheelchair adjusted. They say that movement is best but when you’re wheelchair bound, that kind of goes out the window. It pisses me off that my body is so complicated!
I have anxiety about going outside just in case it’s cold or wet and I flare up! It’s ridiculous! I know they said winter was going to be tough but I didn’t imagine flare ups every week!
Does anybody else get a headache when your pain flares up?
Please drop me a line, I’d love to get to know some other young adults with the condition.
So as you guys know I had my MRI results last Thursday and I have been diagnosed with degenerative arthritis in my Fasset joints and spine. Am I relieved it’s not something sinister? of course, that goes without saying. But, the fact that there is no permanent fix is disappointing. Now I am waiting for wheelchair adjustments as well as a radiology appointment for injections… sigh.
What’s annoyed me already is the stereotypes that people associate with arthritis, for example, the elderly or children and that is not much support for working professionals in their twenties.
I don’t want to be on morphine forever but if that’s what I need to work and enjoy life then I haven’t really got a choice.
I’m not writing this for sympathy but for awareness and wanting to let other people know they aren’t alone.
I can finally say to the people who say it’s in my head to go and fuck themselves.
If you know of any online support groups please let me know, there’s no time for a pity party I have to rock the PR world. I’ll keep you all updated. This winter will be tough but, I am tougher.
This is not the end
I’m down now
But I’ll be standing tall again
Times are hard but
I was built tough
I’m gonna show you all that I’m made of – Cher.