Cosmic unicorn bubbles : Wide awake still thinking lots... - NRAS

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Cosmic unicorn bubbles

New50 profile image
19 Replies

Wide awake still thinking lots. And before I forget thank you lovely people who have posted good bad or indifferent posts. I have this last two days felt positively but still struggling with my symptoms and not quite knowing what to think or do. Finances are really important as 317 pounds a month isn’t enough to support myself. I house share but need to be mobile in order to continue my independence and pay towards bills. I want to apply for pip but still need a solo confirmation from my doctors. So far rhumey has said it joint disease/ synovial inflammatory. I depend on my friends at this current moment to help with shopping as I can hardly be on my feet. In a word it’s hard as fuck to walk. Two years of go away it’s something else n go put some gloves on or we don’t know what your knees looked like before!!! It’s not rocket science to look at a slim built person with swollen joints who cry’s with pain. The only respite I had was with the rhumey I was assigned to who now is leaving the practice. I don’t have family who care I have limited friends as they too have a life. Gladly I have Ra sufferers who lend there support and share there experience which is greatly appreciated. I’m sick n tired of waiting. Two years of being told go away from my gp. 3 months of waiting till I get a rhumey appointment. Good god there’s over 400.000 people who suffer this Dis-ease surely there should be a basic pamphlet explaining basic feelings that affect us. I’m just one of many but not being able to go to do the basics and as much as having online support. Sorry kids but very pissed off. Two years of feeling shit still no help given diagnosis.

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New50 profile image
New50
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19 Replies
New50 profile image
New50

It’s not like I diagnosed myself

sylvi profile image
sylvi

If your seeing a rheumy they will have pamphlets you can take away with you darling. Keep pestering your medics who are looking after you.xxxx

helixhelix profile image
helixhelix

Hello, sounds like you need a bit of extra support right now. Have you tried phoning the NRAS helpline? They can be really great. Number is 0800 298 7650. And look on NRAS.org.uk website as have some good material.

See also this sort of thimg which might give you some ideas

kcl.ac.uk/ioppn/depts/pm/re...

New50 profile image
New50 in reply to helixhelix

Thank you so much that’s really helpful xxx

LillithMay profile image
LillithMay

I can’t offer practical help as I’m new to all this myself but I just wanted to send you a message to let you know I’m sorry your suffering, I’m sorry we all are but we are all here for each other! Sending you some love and support, I’m so glad we have this forum and we can be here for each other xxxx

VeronicaF profile image
VeronicaF

can you go to A and E? tell them you can't walk

your in so much pain, your knees are swollen let them see them, tell them you can't stand the pain

see if they can help you?

That’s what is so frustrating about this disease. You can have some really good days and then bam it hits you hard again. The good days will come back and in the meantime you have to take care of yourself in whatever way helps you.

You do not have to have a diagnosis to apply for pip but it does help if you have letters from your dr or rheumy to support you. You don’t say if you are working but have you been to citizens advice to check you are getting all the financial help you can ?

Keep pestering your GP and rheumy if you feel the steroids aren’t helping any more. Sadly it’s what we have to do sometimes to be heard.

I hope you have a better day tomorrow. We are all here for you so keep talking to us.

New50 profile image
New50 in reply to

My contract was terminated as I was off work for so long due to illness and inability to do the job as it was too painful. It didn’t help that my doctor diagnosed me with Achilles tendinitis for over 18 months. I kept going back to the docs and complained that surely I should have healed by now that I was sent for an ultrasound. It was the chap at the hospital who mentioned it could be RA as I started getting other symptoms. I don’t feel depressed just frustrated with myself for not knowing what or how to help myself. I really appreciate the advice and that has given me the strength and insight rather than sitting around like a lemon. Xxx

in reply to New50

So did you get medical retirement and your pension? That’s what happened to me when I was 27 as they couldn’t see me ever being able to do my job again.

I’m glad some of the info from everyone may help you. I’m sure most of us didn’t have a clue about what we could get benefits wise before we got RA it’s only from experience, you’re not the only lemon 😁

Keep in touch and ask for help if you need it. x

VeronicaF profile image
VeronicaF

do you know what rheumy your going to see? ring the hosptail and ask to be put through to the name your going to see that department, once through tell them nicely you have an appt in 3 months but you can't stand the pain, is there anyone who can see you sooner

New50 profile image
New50

Thank you all for your concern and advice it’s really appreciated. I will get the ball rolling regarding pip as of Monday. Unfortunately I’ve still got to wait till the end of the month for my mri on my back and pelvis so once rhumey has received that info then he will have a better picture. I feel a bit more informed now with all your good advice. It’s hard to think straight some days. Thank you for being there xxx

Nessa28 profile image
Nessa28

Go for pip and ESA as you were working . Get someone to help you with the forms . Part of the esa form not sure about pip asks if a friend can give a statement , ask one of your friends to write exactly how it is for you and how they help you on a daily basis . It will not be easy but you must really be proactive and help yourself . Start a pains diary listing your day and rate the score and what you do . Try to get the pain under control easier said than done I know , but this prevents the oh so commonly used " they're depressed so their concept of pain isn't strictly true" . I wish you well stay positive it took me many years to get a diagnosis and a consultant to remove it it five minutes and that's another story . 🤗💐

New50 profile image
New50

I didn’t know you could get medical retirement. Work just cancelled my contract and that was that. Since June I have been on sick pay from the government which is 317 a month. Fortunately I had the sense to move house and down size to keep living costs down. That was just over a year ago. Even better I’ve now got some fantastic neighbours. 😀 xxx

in reply to New50

Hmm, I don’t know much about it only what happened to me really. I’m sorry you didn’t get given that option.

I’m glad you now have fantastic neighbours and are living in a more manageable house.

Let us know how you get on with pip, a lot of us have been there and can give you advice if you need it x

HappykindaGal profile image
HappykindaGal in reply to New50

Hi. I’m not sure if you want to continue working or not, so I may be on the wrong track here. Lots of companies employ home workers now. Google, HMRC, Enterprise cars, travel agents, me (!) and many more. Usually customer service roles. May not be for you as I have no clue what you want to do, but could help?

New50 profile image
New50

I’ve looked into home working but there isn’t much out there. If my body would behave like it should I’d be happy to do pretty much anything. I can manage 15 mins continuous but then have to sit as my feet end up in so much pain. I thought the steroids would help but hardly makes a difference. I tried to go shopping last week and walked for nearly half an hour and omg that was so painful and ended up not able to do anything for days. I would love a sewing job as I’m a creative person. Xxx

Chrissycl profile image
Chrissycl

on the citizens advice website there is some great help with pip and how to fill the form in.

New50 profile image
New50 in reply to Chrissycl

I have asked about pip, I’ve been told I can get a helper via the job shop. So that’s good news. I’m awaiting my mri in ten days so think once they confirm the other parts of my body are knackered lol I will have enough info to support my claim. Just was a bit lost as to what to do. Despite me having RA for a few years I didn’t know till recently so been getting my head round the whole thing. And getting the right support. I’m glad everyone has been so helpful because it’s made me think a bit more clearly. You know what it’s like we just bumble on till we can’t. It’s all very real now. Xxx

in reply to New50

It’s a lot to take in all at once, especially as you are probably feeling really unwell. You’re in the right place for support from lots of people who have been there.

You never know what will come up work wise in the future. I’ve only had my job 18 months and that came out of the blue through a friend. I hadn’t been able to find a job I could physically cope with for many years.

Here’s hoping things improve for you soon x

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