Me and my Disability: Six weeks living independently

Hi guys,

I am so sorry that I haven’t been writing much, there’s just so much going on that I forget to update you both. I cannot believe I’ve been living alone for six weeks!

So if you follow my Facebook page, you’ll know I’ve been having frequent spinal and hip flare ups which I’ve been managing with hot water bottles and diazepam with oramorph breaks in between. But I have good news! I have a telephone consultation with my spinal consultant next Monday and I have my MRI scan booked for the 27th of April just to check on my scoliosis and disc degeneration. I know I should will be excited about a telephone consultation with a doctor but I am it is the only person that listens to me and I am going to query about fibromyalgia, I fit all the symptoms but every time I go to the GP to talk about it they say it’s my mental health when I know it’s not. I know that she takes me seriously and doesn’t feel like I need to be admitted to a psych ward!

But this week, I seemed to gravitate towards urine. On Saturday, I was in my wheelchair building up my tolerance and my leg bag was full so I went to empty it in the toilet but the back to bed carers had left to come out in front of the toilet so I couldn’t access it! (I’ve told them repeatedly not to do this but they don’t listen so now I live not so subtle and maybe passive aggressive notices around my house.) so anyway I managed to scratch my wheelchair is close to the toilet as I could but as I flicked the tap on my leg bag decided to spray like an out of control fire hose, soaking my leggings and the floor. Then Sunday night I kept bypassing so I had to have the district nurse out to change my catheter but the carers had left a key inside the door so when she inserted the key from the key safe it wouldn’t open but, luckily we keep a spare key under the shell. It’s so unusual for my catheter block when I have it changed every five weeks. Then yesterday, my leg bag had an air bubble and wasn’t flowing into my night bag resulting in it disconnecting from the catheter port itself and going everywhere! I swear I can’t make this up. Luckily I managed to rescue it without too much collateral damage.

Two weeks ago the council did attempt to try and house me in a permanent property in the valleys but did not consider things like accessible amenities, terrrain, and transport. The OT didn’t pick up on the lack of drop curbs, widened pathways and parking, I couldn’t even get in the house to view it! My parents were not happy, if they were going to place me in that house then I would essentially be housebound relying on other people again and the whole point of me moving out was so that I could be independent and have a freedom of other women in their 20s. Then housing turned around and said that if I turn down the property without a sufficient reason and the OT still doing it suitable I would be kicked off the housing register for a period of 12 months and my temporary accommodation will be terminated! Thankfully my mum and I submitted evidence and the house nomination was given to somebody else in need and I get to stay in my temporary accommodation until a suitable house is found. I just couldn’t believe all the stress and anxiety they put me through and if I had no choice and had to stay in that house my social workers answer was that I rely on community transport and go out on set days. It was utterly ridiculous! The nearest doctor’s surgery was a 45 minute bus ride away and the bus stop was a 30 minute walk away from my house so I would have to leave my house a whole 90 minutes early with my PA before I even get to the doctors appointment and the social worker thought that an hour a month was acceptable for my doctors visits! Only get 2 1/2 hours a day and a doctors appointment would take up more than that considering I’m in the doctors every other week. But thankfully that nightmare is over and I had grovelling apologies from housing and by social worker about the unnecessary stress and anxiety they put me through.

But life is good. Even though I am in a property with partial adaptions I have a more freedom than I did in my previous property. On Mondays myself and Meg go into town for I’ve cream and to visit the shops, then my neighbour picks up my click and collect shopping on Fridays and drops it over with her lovely little girl.

I had my second lockdown birthday and it was lovely I was able to see my grandparents, drink Pimms and eat all my favourite foods just feeling content.

I am just feeling fulfilled – take this week for example, I have a chest infection so I’ve been taking it easy having pj days and taking advantage of the deck and all the natural light and fresh air. This week we’ve baked cupcakes, made banana ice cream, my auntie visited and it’s just been nice and chill. I’m not punishing myself for not feeling 100% or motivated, I’m just listening to my body and resting.

This move has been the best thing I’ve done, I didn’t think it was possible but it’s bettered my relationship with them, they finally see me as an adult and our relationship is no longer carer/ client but mum/daughter and dad. Don’t get me wrong their never going to stop being involved in my medical treatments and will still offer emotional support but I’ve lifted the burden from them and they are able to finally think about themselves.

I wish I could say everyone is supportive of my newfound independence and is providing support but that’s not so. Hey, you’ll never please anyone so don’t chase after their approval instead, put yourself first and continue to prove the motherfuckers wrong.

So that’s my update in a nutshell! Thank you so much to my 303 readers for following me after all this time, your support is invaluable and I would like to thank you for your lovely comments and please support my Redbubble shop.

Until next time because my scriptwriting assignment isn’t going to do itself! (It’s not due till 06/05 so one more episode of Greys Anatomy won’t hurt surely? Season 13 is pretty addictive!)

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