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Hello everyone. Recently put on LCWRA after tribunal, 18 months of battling with the DWP

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carguy97
carguy97 Community member Posts: 11 Listener
edited July 5 in Universal Credit (UC)

Thought I would introduce myself to this forum properly. I'm Sam, I'm 27 and I've been sick now for the best part of 4 years total up to this point. It started when I was 22 but for the first year it was tolerable. It began with a mystery sickness bug during the first quarter of 2020 that landed me in the hospital, and since then, my health, both physical and mental, have declined quite rapidly.

My main symptoms started out as gut issues and dysautonomia symptoms such as fatigue, shortness of breath, heart palpitations, becoming intolerant to temperatures that are to hot or too cold. Frequent awakenings during sleep, high heart rates after eating a meal, not even exercising or anything. Then in 2021 I started getting heart palpitations out of nowhere (PVC's), in 2022 my fatigue started to worsen and I started to develop neurological symptoms towards the end of the year that of course the doctors attributed to anxiety. in 2023 those neurological issues worsened significantly, to the point now where I experience dizziness and vertigo basically any time I am on my feet and moving around. Bending over is a huge trigger for this. I've started to become unsteady on my feet when walking and my head feels like it's going to slide off my neck, and my body feels like it's being pulled down into the ground

Recently I have come across a condition called CCI (cervical instability), and I have managed to find a medical study that is exploring this condition that I have signed myself up for, because it seems no doctor in this country even knows about it except for literally a couple of very expensive specialists, that my LCWRA backpay will mean I can finally go and see to get evaluated for this condition, as that was the barrier previously.

But yeah… I won't keep this going for too long, just thought I'd say hi and introduce myself. I'm pretty limited in what I can do physically because of the combination of issues I have, but I'd say 75% of it is due to the neurological symptoms. Being finally awarded LCWRA after all this time feels like a huge weight has been lifted. Finally I can actually go and see the specialists I've been wanting to see for months now, and hopefully I can get some answers to improve something about my situation.

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  • Rachel_Scope
    Rachel_Scope Posts: 286 Empowering
    edited July 4
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    Hi @carguy97!

    Thank you for sharing your story. You’ve been through so much in such a short space of time, it must have been difficult for you.

    The medical study sounds interesting, I really hope you get some more answers from it. Also, great news that the backpay can help you see the specialists 😊 It must be so frustrating not knowing exactly what’s wrong.

    How do you look after yourself? Do you do any self-care? I like to listen to music and put on galaxy light and watch the colours dance around when I’m struggling with my disability. It puts me in my happy place 😊

    Rachel (she/her)

    Online Community Coordinator @ Scope

  • carguy97
    carguy97 Community member Posts: 11 Listener
    edited July 4
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    It's been very frustrating. I just seem to be deteriorating little by little each month, and to not have any clear cut answer as to why is both frustrating and also scary. That money is now hopefully going to allow me now to get some answers, and some closure as to why I'm suffering like I am.

    I don't really do any self care per say. I just do what I can to get through the days to be honest. I watch YouTube quite a lot, I have a dog (it's my parents), but I can't play with him and walk him as much as I'd want to. A good chunk of my day is spent resting and lying down depending on how badly my fatigue and neuro issues are flaring that particular day. I do enjoy listening to music as well actually. (What's your favourite genre of music?), and I'll have some rum when I turn my playlist on, and I will just chill to the music, and maybe play some drunk video games with my online friends of I can manage it

    Alcohol weirdly is one of the only things that doesn't really make my symptoms worse, it takes the edge off ever so slightly. But this isn't a long term solution and I know this. I only found this out recently though, since getting sick I haven't touched alcohol at all, so the best part of 4 years, I just did it as an experiment one night because I thought to myself "well I've experimented with pills enough, let's try something less pharmaceutical. Oddly it does more than any OTC and prescribed medications have done for both my gut issues and neurological ones, but I think that's just because it diverts my attention away from my usual symptoms, and so then I'm focused on the things that come with being drunk lol. Being drunk is much more pleasant than how things usually are normally though, but it doesn't completely eliminate my symptoms. I tried weed once as well, and that did not go well unfortunately. Gave me a huge panic attack and my neurological symptoms became absolutely awful for an hour or so

  • Rachel_Scope
    Rachel_Scope Posts: 286 Empowering
    edited July 4
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    I truly hope you get some answers so you can take some steps towards feeling better.

    I love watching YouTube too. I’m into documentaries or videos about creepy things. The creepy stuff isn’t for everyone!

    A dog!? What’s their name? I’m sure they enjoy snuggles with you when you’re not feeling up to playing 😊

    I love music and I’m into literally anything from classical to classic rock. There’s a discussion going on now about music, have you seen it?

    I understand being drunk may feel pleasant at the time but it isn’t something you should rely on or do too often. It can lead to lots of other complications and you need to focus on feeling better. Do you think drinking is a problem for you? Just want to make sure you’re ok and get the support you deserve 😊

    Rachel (she/her)

    Online Community Coordinator @ Scope

  • carguy97
    carguy97 Community member Posts: 11 Listener
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    Oh no, do not be concerned, drinking is something reserved for the weekend to have a laugh with my online friends, if I feel up to it. I could easily see how someone in my position could end up abusing it, but I'm not drinking every day to try and cope or anything like that. If anything, it's something to do to feel a sense of normalcy for a few hours, since my life is anything but normal, if that makes sense?

    I thought I was the only one lol, I love watching creepy YouTube videos haha. Our dog is an English bulldog. He's not a cuddly dog 🤣. He's a bit "special" I think 🤣, he's only a year old, so he's got more energy than I have most days lol.

  • Rachel_Scope
    Rachel_Scope Posts: 286 Empowering
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    Hi @carguy97.

    I'm glad the drinking isn't too often. We all deserve some relaxation sometimes and as long as it's in moderation and safe then it's all ok 😊

    Yay, another creepy video lover! I love Nexpo, are you a fan? Oh my goodness, an English Bulldog! Amazing. I have 2 cats but wish we could have a dog too.

    Have you had a look around the forum? There may be more creepy YouTube video enjoyers here!

    Rachel (she/her)

    Online Community Coordinator @ Scope

  • Albus_Scope
    Albus_Scope Posts: 5,709 Championing
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    And it's a big hello from me too @carguy97 I'm also a big fan of creepy videos. I'm currently working my way through the SCP videos. 😊

    Albus (he/him)

    Online Community Coordinator @ Scope

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