15th day in rehab (dealing with the emotional rollercoaster of chronic illness + back pain & vintage bargain shopping)

Today marks week 5 of my 1st ever hospital admission, and since the 1st half of the day was spent doing sod all I thought I’d reflect on a few things.
I started this journey thinking I’d be in over night…  Just till the diazepam wore off… I was wrong. The last 5 week’s have been an emotional rollercoaster. Relief, dispair, shock, frustration and a mix of happiness and hope too. The one I want to talk about is anger. I should be angry that my local hospital left me with a resting hr of 100bpm for over a year. I should be angry that 3 different A&E departments saw me dislocate hundreds of times over the course of a few hours (on multiple occasions) and never once wondered what was happening to my body. I should be angry that no matter how dedicated I am to my physiotherapy it will never be enough to ‘fix’ me. I should be angry I’ve have to take a ‘gap year’ just before starting my dissertation.

And I was.

I have had moments where I’ve sworn and cried and blamed the whole world and it’s brother. Mostly I’ve blamed myself. But in reality it’s pretty simple. Shit happens. Anger (by it’s self) can’t change any of the things that have happened to ME.
In my mind there are a few ways of dealing with anger, you can let it consume you, or denie it’s existence totally and bottle it up. Or you can channel it into something, let it be the driving force behind something.

With this in mind a few months ago I started a series of complaints against Serco Wheelchair Repair. As some of you know I had experienced serious issues with trying to get simple repairs and maintenance in my NHS wheelchair. And I wanted justice. Not revenge, this isn’t about an eye for an eye, it’s about making sure this Never happens to anyone else.

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My chair was unsafe and using it put me at risk, serious risk. After 9 months of complaints and unanswered phone calls I contacted PALS, Serco HQ and my local MP. Within a week I had received a response and within 2 weeks I had received a temporary repair. A week later the complete repair was carried out and my chair was back to pretty good condition. The frame it’s self has been stressed a lot through 9 months of broken front casters and rubbish tracking so it will never be 100% but pretty good….(until a few days ago when I snapped a footplate off)
The next photo is from a letter I received after all of this happened. It details the unsatisfactory service I received and it explains what Serco and the other high ups are doing about it. The changes they are making will (hopefully) improve service for all NSH wheelchair users who are dependent on them for repairs and maintenance. They are also contacting everyone who’s interacted with them in the last few months to ask about their experiences. Most of all there was an apology in almost every paragraph!

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I’m not sharing this to gloat but because tomorrow I take delivery of a brand new chair that belongs just to me. I’m no longer dependent on Serco. In my mind, I won.
I was angry, but I channeled that anger into changing service provision for the better and making sure that the big bosses knew exactly what their company was doing to (potentially) the most vulnerable members of sociaty.

With any big change in life (even positive ones) comes grief.  this emotional journey should eventually end with acceptance and moving on.

‘Acceptance’ isn’t a decisive moment. It can happen over weeks, months or years with ups and downs along the way just like ‘Moving on’ isn’t just one action, today I got out of bed and did 10mins of solid physio, that’s me moving on. One small step at a time. (even the bits that don’t involve actual steps!)

When Mum arrived to visit before supper I got dressed and we went to thorpeness where I picked up a bargain skirt and some vintage crystal beads.

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If you asked me this morning if that would have happened I would have said
“no, I’m staying in bed all day my back hurts”
If this experience has taught me anything it’s that life can change in the blink of an eye or it can be a gradual shift.
All you can do is make the most of whatever experiences you go through and try to let your emotions be a driving force for positive change.

To finish with, I promise that tomorrow there will be less of my philosophical ramblings and lots of photos of my beautiful new Quickie Helium Wheelchair!

here is a photo of a squirrel to lighten the mood

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