Me and my disability: May 2021 update.

Hi gang!

Yes, your eyes do not deceive you, it’s me chickonwheelz, and I’m here to give you an update on what’s been going on. But first, i’d like to thank all my readers who still been reading my blog and commenting even though I haven’t new posted anything. You will support and love is always appreciated. I guess I just got caught up I was living by myself including how to do things and kinda forgotten you guys…sorry!

But anyway back to my update, I finally had my telephone consultation with my spinal specialist and she has agreed to do an up-to-date MRI scan to see what’s going on in regards to my back pain and she also wants my folic levels investigated since they were elevated in 2017 but nobody followed up (and that can sometimes be the cause of muscle and joint pain). She said that with my type of pain it’s not going to be an easy process and it’s probably going to be a case of elimination rather than a straight diagnosis. She did give me some good news though; they are developing a blood test for fibromyalgia but it’s still in its early stages and treatment is yet to be found.

I also have wheelchair clinic coming out on the 24th of May to either adjust my wheelchair or I’m hoping fit me for a new one seeing as since my mum took off the custom seat with lateral support (due to me having gained weight in lockdown) I’m finding I’m slipping when I’m out and about with Meg my PA. I’m also leaning to the right a lot more and my posture isn’t great which probably isn’t helping my back problems either.

The OT has also requested that I get an armchair with lateral support but this one won’t have any belts, trays or buckles because if you’ve been a reader of my blog for a long time you’ll know that my last care chair from the occupational therapy cut off my catheter supply and urine exploded all over the floor! With this new chair it’s going to have lateral support on all sides as well as a recline function and pressure sensitive material.

I’m also looking into twice weekly physio that somebody could come in and do on my bed and help manipulate my spine and help with posture as well as alleviate some of their tightness in my calves and abductors. I’m also considering having a twice-weekly massage to try and alleviate some of the pain and overall body fatigue I experience

There still still no news on a permanent property for me yet but that’s okay I don’t mind waiting because as you know it needs to be the right place. (See previous from post) it’s going to be hard to leave this lovely property though when it eventually does happen but, at the same time it would be nice to have a place of my own where I can put my own stamp on things. If I could afford to buy the current property I’m in I would in a heartbeat but I don’t have a quarter of £1 million to hand!

I love independent living it’s the best. don’t get me wrong it hasn’t been easy there have been loads of kinks to work out from things such as sickness and diarrhoea to ordering a takeaway and coordinating it with the carers visits but, I would never go back. Finally I think my parents are starting to see me as an adult rather than a seven-year-old helpless kid in a purple wheelchair!

My scriptwriting module is so dull and complicated. Every time I receive tutor feedback on an assignment it makes me want to blow my brains out! I know she’s pushing me to be the best but I’m a novelist first and foremost and so I’m used to that format. Nothing I write seems to be good enough for her at the moment and it’s making me doubt my writing abilities. The only thing that’s getting me through is counting down the number of assignments left before I start my new module and I currently only have two assignments left to go! But I don’t think I’ll score very highly on this module… We’ll see!

I’m also thinking about going back to dance class in a couple of weeks when I get my wheelchair sorted now that things are slowly returning to normal. I probably won’t compete myself and my fibromyalgia do not contender well with pressure I’m just going for a social life.

I’m also going to join the local book group at the library. Hopefully it will be easy now that Meg has an extra five hours per week taking us up to 15 hours to fit all my extracurricular activities as well as household chores in.

It was a brief moment; but a moment none the less where I tried online dating again but I’m just not ready. Moving out has given me the opportunity to fully explore who I am and what I want for the first time in my life and I need to be sure of myself before I let anyone in. Remember I’ve been burned before… Several times actually…

But other than that I’m just enjoying the freedom that comes with independent living; wether it be the weekly online food shop, a walk along the seafront or an afternoon curled up in my living room (which I called my little greenhouse) reading my book or rediscovering my love of singing.

Yes I still have pyjama days like any of the 20 something but when I go to bed at night I feel that even the smallest things amount to the biggest achievements. I feel good when I wake up in the morning because it’s my morning and I can do what I like.

Here’s what I’ve been enjoying this month:

Books: Malice by Heather Walters

TV: Still Greys…

Movie: Look who’s talking

Album on repeat: Demi lovatoDancing with the devil / The Art Of Starting Over

Podcast: Wheelchair Barbie by Madison Lawson

New guilty pleasure: Carte ‘Dore strawberry ice cream

Something I’m not looking forward to: My blood test

Something I am looking forward too: Eating IN a restaurant/ An answer to my pain?

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