Just Saying Hello before I start posting. — Scope | Disability forum
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Just Saying Hello before I start posting.

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kellym73
kellym73 Community member Posts: 2 Connected
Been a member for quite some time but never really took part.  I have a few stories that maybe of interest… plus a few obstacles I’ve yet to overcome no matter how hard I try.  So maybe some of you may be able to help me…. I thought it was about time I said hi to everyone, and put virtual pen to paper and share.  

My name’s Kelly, I have struggled with various different conditions.  The first apparent one is Lipoedema.. I know something wasn’t right from an early age, but that wasnt acknowledged until I was 20 and even then not attributed to Lipoedema for another 25yrs.  Up until that point it was given a general label of “fat distribution” disorder.  But other than that I was fit and felt fine.  I would regularly bite off almost more than I could chew, and have high stress and be wired most of the time.  By the time I was 30 I was from time to time collapsing and fitting… but that was put down to exhaustion and not any conditions.

My energy levels began to wain during my 30s… then terrible pain in random places for no reason, that could last an hour or months at a time….  I initially refused to accept any of it, and did the very British thing of stiff upper lip and carry on… but gave myself a burn out, which in turn started off extra phantom/neuropathic pain in random places…eventually I had no choice and  I had to resign from my successful career.. which sent me into a terrible depression… while trying to work out what the hell is wrong with me…

18 months of consultants and I was told I had musculoskeletal pain & neuropathic pain…. But no explanation for the chronic fatigue and other symptoms, nor really explanations their conclusions. They diagnosed me with CRPS (Chronic Regional Pain Syndrome) I was prescribed neuropathic pain meds and regular pain meds and initially they made my so drowsy I slept away the first year… But eventually, I adjusted to them but my whole life has changed from what it was… from a high flyer to someone with no income, lost identity and not really sure what to do with myself… as this wasn’t how I’d planned my life to be.  It was later changed to a diagnosis of Fibromyalgia.  This seemed to explain all the other symptoms of the fatigue, the various other ailments.

I grieved for my former self for another couple of years, then decided resigned myself to being an invalid and never working again.. literally pottering around being mindful of my physical & mental health.  After a while this never felt right I still felt I had a lot to give and needed more… so I scratched my head thinking about what I was able to do.  Basically anything that could use my mind and my IT skills… I ended up volunteering helping charities w websites, or IT woes as I could do this from home, no commuting to trigger a fibro flare.. but I was taking on more and more tasks… and after 3 years of doing that, I decided if I was managing to do all this voluntarily, then I should be able to do my former job again, with the caveat of it has to be home working full time… with maybe an occasional visit to the office.  So I started looking… the Pandemic hit… everyone was working from home so you’d think that would have been a perfect time to land a role.  instead I found that everyone was sticking with their current staff, no one was moving jobs, interviewing was non existent.  So I carried on with the volunteering waiting for things to improve.

When the pandemic was over they decided home working should change to hybrid working… which would be fine by me if it were at most once a week or once a fortnight..
 but they require 2-3 times a week… I know with my disabilities I will not manage that, so I am very frustrated.

I feel if I’m honest about what’s been going on in my life over the past 11years of outage I’ll be overlooked…. If I cannot go in the required 2-3 times a week I will be overlooked too… but state I’m disabled,then in theory they should consider my needs…. But it’s a dilemma!

The longer I’m out of this work circle the less opportunity I have to return to it.  So I recently took an accreditation in Project Management in hope to have more irons in the fire.

So that’s me in a nutshell!!

I’ll post my specific stories and queries soon, but I think this one’s enough writing/reading for one day.

Comments

  • woodbine
    woodbine Community member Posts: 11,656 Disability Gamechanger
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    @kellym73 hi and a warm welcome to the forum.
    2024 The year of the general election...the time for change is coming 💡

  • Sandy_123
    Sandy_123 Scope Member Posts: 50,529 Disability Gamechanger
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    Hi @kellym73 welcome to the forum. Sounds like you've been through the mill, yet still managing to be strong. 
    Have a look at scopes work support link below 

    https://www.scope.org.uk/employment-services/

    You might find it useful. It's aimed at England and Wales. 

    While your here join in with the conversations and games
  • Beaver79
    Beaver79 Community member, Community Co-Production Group, Scope Member Posts: 20,210 Disability Gamechanger
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    Hi @kellym73 Welcome to the Community from me too. Thank your for telling us your story. Have a look around and join in when you are ready. If you have any questions please ask. Take care. 
  • Ada
    Ada Scope Member Posts: 14,200 Disability Gamechanger
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    It’s a warm welcome from me 
  • Albus_Scope
    Albus_Scope Posts: 4,180 Scope online community team
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    Hey there @kellym73 and it's a big warm welcome from me too! 

    Thank you for sharing your story with us, that doesn't sound easy at all, but I'm glad you've taken the bull by its horns so to speak, so if there's anything we can do to support you, please just ask. I see our support to work scheme has already been linked :)
    There's a lot of places that do 100% work from home now, I'm lucky to be in one of those roles.  I think with all the volunteering under your belt, that'll show the recruiters you're really serious about things and work in your favour. 
    Albus (he/him)

    Online Community Coordinator @ Scope

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