My symptoms are debilitating yet I’m not diagnosed i believe it to be MCAS and EDS but obviously I don’t really know. I’ve been on a wait list for 3 years getting less and less able I have no support and I can’t do anything myself I need help but I can’t access it since I’m not diagnosed. I don’t know what to do anymore it’s like I’m watching my life fly by and everyone enjoy stuff while I’m stuck in pain in bed just suffering. I can’t do anything anymore and I just wish I was better. Any advice or kind words appreciated :)
#What to do - disabled
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marble sierra
Get out of bed then
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Get out of bed then
I go out almost every day but I’m in so much pain I can’t walk for more than a few minutes
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<@&993332385670246420> does anyone have any advice on this or just any comforts or similar experiences & how u got through it
sick elk
Not really but you can vent if you want
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<@&662497203570475059> <@&993332385670246420>
gray matrix
<@&662497203570475059> <@&993332385670246420>
What country are you in?
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England
gray matrix
Hi fellow England person! So, yes I’m aware the waiting lists for elective things are really long right now. It is genuinely something that really sucks, and I’m sorry you’re struggling so much with this! You’re doing amazing, you’re so strong for getting by through this, it can be really tough to not have any answers and still feel like this. I’d suggest reaching out to your GP; or calling 111 for some help. If it’s severe, and you’re struggling to even get up to make food, then call an ambulance for yourself.
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I’ll try get a gp appointment thank you, I’ve been to a and e several times trying to get help and they just say it’s ’growing pains’ or that they won’t diagnose me until I’m 25
I’ve had one referral rejected already and I think my current referral will also be rejected
It is to the pediatrician and I’m almost 17 and then I’ll be 18 next year so I don’t think I’ll get seen
I really need to access pip and get some money to change my house so I can actually shower without getting injured and I need a blue badge but idek where to start
I’ve been trying for two months to book an appointment but my gp means you have to fill out a form at 7am and they don’t accept calls or anything
Do you think if I call 111 they could even help me ?
I often struggle to make myself food since if there’s no clean plates in the Coubard and I have to lean down to get them out the dishwasher I just throw up from leaning down and give up but I think calling an ambulance might be a bit too very scary 😰😅
gray matrix
I think calling 111 is worth a try, particularly if A&E have said they can’t do anything. You need to eat, and if these symptoms are preventing that it’s not good for you at all.
Definitely try and complete the form from your GP, as they can refer you to services you need!
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I think calling 111 is worth a try, particularly if A&E have said they can’t do ...
I have an appointment for the 18th :D !!!!
gray matrix
I have an appointment for the 18th :D !!!!
That’s awesome! Great job for calling, and now hopefully this will be a step in the right direction! 
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:D tysm