Hi, I’ve posted a few times and last few days have been feeling extremely low. So I guess just here to offload.. I have no-one really to share with
I’m 6 months on from RA diagnosis, taking methotrexate (albeit which is pretty rough but is generally working on the disease)
But just struggling so much coming to terms with how much this has changed my life. I’m a single mum, sole provider, have little support.. until 4 months ago was working full time..then everything just caught up with me and had a complete breakdown, also lost my young dog 6 weeks ago in very traumatic circumstances, so has been pretty tough few months
I just feel so lost. I’m now only working 1/3 of my job, doing something I hate with very unsupportive employer. I work in hospitality so not a good industry to be in with my health., and limitations. But I’m just so scared of how I will manage going forward. The RA pain I can tolerate, although I need surgery on my foot for a large tumour which is now pretty much constantly painful.. but the fatigue, and constant brain fog.. I find it utterly debilitating and completely wrecks me mentally too: I find this is the hardest part to explain to people… I used to be into powerlifting, do 12 hour shifts on my feet, walk my dog, care and support my daughter..and now I just struggle to get out of bed each day. I know I sound self pitying and I know there are loads of people worse off..but I just feel so scared, and so alone. Right now I feel like a complete failure.
My life has not been easy, I’ve suffered much trauma and always had the resilience and physical strength to pull me through. But right now I don’t have any.. I hate myself for feeling this way when I should just be able to pull myself out of it, but I just don’t know how. All I want is sleep..
I really hope this gets easier. I really am a fighter, but I’m failing right now.
I just had to write this down and to anyone who reads, or this resonates, I hope I don’t sound too self pitying.
Thank you
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Sapphire1701
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First off, no one here thinks you’re self pitying. That’s what the forum is for, letting people vent if they need to with people who understand.
I’m glad you’ve felt able to share how you are feeling with us and although it won’t help you physically, we have all been where you are and it’s really very tough, especially trying to keep working and look after your family. I would speak to your rheumy nurse about how you are doing as it doesn’t sound if your RA is fully under control, I would also give the NRAS helpline a call as they’re great when you aren’t doing well or are feeling low with regards your diagnosis. It’s a big shock being diagnosed and it can take a while to come to terms with so keep talking to us too for support. Let us know how you’re doing 🤗
Hi Sapphire, I'm sorry to hear all that you're going through, it's no wonder you feel as you do. I'm really sorry to hear about your dog too and can imagine how much that's upset you. I completely agree with everything Kitty has said, you're not self-pitying at all, there are many on this forum who have felt the same as you so you're not alone there. The tumour on your foot sounds awful and I really hope that's sorted sooner rather than later as it's certainly not helping. Give NRAS a call, as Kitty has suggested, they are there to help you. Good luck. xx
Thank you.. you’ve all been great. And yes the foot is agony! It’s actually a neuroma, but basically a benign tumour between the joints.. some links with RA. Surgery will help I hope 🤞🏼 x
Sapphire, you are not self pitying. RA is a difficult disease to live with and you are only recently diagnosed.Many of us have felt similar to the way you are now, so please do use the forum for support with people who understand.
As others have said, the NRAS helpline is excellent at listening and offering support too.
you’re allowed to have bad days we all do and ranting or venting is good way to let it out. You are having a hard time with your health, a busy life with your daughter, a job you are struggling with and dealing with the sad loss of the dog; who wouldn’t be feeling low, I know I would. Well done for holding it all together and even more so for reaching out for help. You are not alone, we’re all here to listen anytime and if you feel you want to talk to people outside the forum the Samaritans are a great group of listeners, they’ve helped me get through a bad patch many times. My diagnosis is not RA but similar so I won’t comment on your medical issues except to say I agree with the others that the NRAS will be helpful.
Remember you are not alone, you’re not the only one, it won’t last forever and tomorrow will be a new day and a better day , sending you strength, comfort and understanding 🤗
thank you for your support.. I actually used to be a Samaritan so know it well. Hopefully I will return when I’m feeling a little stronger.. I’m vey good at supporting others going through a difficult time, just useless at caring for myself in the same way.
Thank you for your understanding. Is much appreciated x
Sapphire1701 I'm so glad you decided to offload, you're going through so much and it's even harder when there aren't supportive people around to share the shock, feelings of loss and the lows. I was diagnosed about a year before you and remember very similar feelings, and feeling quite alone with it all, it's taken quite some time to work its way through. To be honest I'm probably still in the process of coming to terms with the effect RA has had on my work life and general functioning, though there have been significant improvements with treatment. I plan to make the absolute most of what I can still do, and am by no means giving up on further improvements either.
As others have suggested, I called the NRAS helpline a couple of times to talk about what was happening soon after being diagnosed - mainly uncertainties around treatment decisions and practical things. I also came across the Wren Project, which is an organisation offering supportive listening to people recently diagnosed with autoimmune conditions, especially around the social and emotional impact (although you can talk about whatever you like). The sessions were an hour each fortnight. It's not counselling, but I did find it a lovely and helpful space to vent, reflect and process. Their website is here if you'd like to know more about it: wrenproject.org
Personally I found the initial stages around diagnosis the hardest because my symptoms were at their worst, I didn't know what I was dealing with and the uncertainties of prognosis (and treatment) was quite a thing to get my head around. It is so much better now, and more settled. It sounds like you've got yourself through a lot of challenges in life already and I bet this will be the same. It's hard when you're a parent too, but I hope you can allow yourself some time and grace to adjust to all this - you deserve it. Please let us know how you go, if you feel like staying in touch. Sending you all the love and strength x
I’d not heard of the Wren project and just looked it up.. so thank you.
And yes I’m still very much coming to terms, I think I was in denial to start with, as were my family & some well meaning colleagues who tried to make me feel it’s ‘mind over matter’.. when it really isn’t.
I think it’s the loss of the old me, and the dreams I had - just before I was diagnosed last year I had a place to do nursing degree - which has been my dream for years, just needed to wait until my daughter was old enough. I was too ill to start, and this year would be my last year of eligibility, and j know it’s no longer something I can pursue.. so it’s kind of like starting over, when I’m at my weakest, with no confidence and so tired I feel like I’m trudging through mud..
So it’s all the uncertainty and the pressures, I literally can’t afford to be unwell. But I’m completely unemployable at the moment, hopefully that will change.
Thank you for replying, though I'm sorry to hear about the impact this has had on your plans for nursing training. I can imagine that feeling like the rug's been pulled out on top of the medical challenges you're dealing with. Could there be another route in maybe, in future? It's so hard trying to think things through when the symptoms are still in such a difficult phase, though. With any luck your treatment will get things to a point where day to day life is a whole lot easier for you than it is right now.
Just wondering if you see your rheumatology team regularly, and have opportunities to discuss adding to / adjusting your medication? It can take a bit of trial and error finding the right combination, but it can improve things a lot. I take three DMARDs now with a bit of prednisolone, and it's the most effective combination I've had so far. Personally hold methotrexate responsible for a lot of the cognitive issues like brain fog - one of the aspects I've found most debilitating and destructive to confidence - but that has got better with time. Switching to methotrexate injections helped as well.
Despite the pressures of the situation, do you think it's possible to give yourself a little time just to regroup a bit after the emotional impact of everything that's happened, and maybe the treatment effects will take hold a bit more too? Six months in is still quite early days, and there's a good chance things will improve significantly from where they are now with the right meds. I was pretty much reeling for a few months after diagnosis and too ill to make any big decisions. Probably went back to work too soon, but it was good to have that structure - and hopefully do something useful to other people. I couldn't have coped with physically demanding work like you're doing in hospitality though - that's pretty amazing. Keeping my fingers crossed that things get better for you very soon x
Thank you.. and yes I plan to give myself some time, fortunately I receive universal credit now I’m on low income so we can manage for a while.
I’ve also been tried on sulfasalazine, but my leg swelled badly and I had terrible insomnia (the irony when you’re so tired) so was switched back to just mtx, I’ve only been back on for 2 weeks, so symptoms should improve again.
I don’t do front of house anymore, I was in the management team, but now just do admin..I attempted one hosting event so on my feet.. but it was too much. Even before my diagnosis I have been desperate to get out of hospitality anyway, so this is just a bump in the road..I hope. And I’m sure better times will come.
But this is most definitely a journey, for us all. So grateful for this space. Thank you again x
It gives advice and support.you’re entitled to feel some self pity.
I hav RA,lupus and lungs disease- NSIPand lung fibrosis.
It’s really hard having no one to confide in. My husband is supportive,but he doesn’t get some of my concerns.
This morning he suggested arranging a meet up with old work mates.
I wasn’t keen.
I’m on 3 tablets,which can cause hair loss.
My hair was never good,it’s even worse now.
My other big issue is that Ihavent been able to wear a bra.the slightest pressure on my right lung causes pain,I’ve tried all sorts,now resort to a vest top under my tops.he laughed and said none of my problems should keep me in the house.
I felt a bit deflated as these are major things to me- also my back pain is restricting.
I’m sorry to talk about myself,but I just needed to let you know that even with support,it can be hard. People ask me if I’m better,my lung disease won’t get better.they don’t appreciate my honesty.
This forum is good as you can obtain advice,support and understanding.
It also lets you have a rant if you need to.
YOU ARE NOT A FAILURE,please ease don’t label yourself as one.please pm me if you need to xx
Hi I too avoid social occasions as sitting is so painful, feel fatigued and my hair is awful. But I have discovered wigs! Not fashion wigs but good wigs mainly used my cancer patients. And it has helped so much for my confidence too. The sitting pain & fatigue I can’t remove but at least I feel I look ok. 😁
hi,thanks for your reply.I I have had a couple of wigs and though I look better,I get very hot due to lupus sweats,husband would say it’s slipping while we we were in supermarkets.that never ended well,I’m on more of a short fuse since I’ve been Unwell.
When I got home I’d throw it in a corner.
I’m considering another wig for special occasions,but I’m unsure,I don’t want him telling me it’s slipping whilst we’re at a christening.
Ive got quite a bit on at present,have had to go on blood pressure tablets.
Have spoke to ILD pharmacist,she said she will order Nintendanib for lung fibrosis,which is a relief,I’ve not had any for 3 months,so that’s a major relief.
So possibly upwards and onwards.have a good day every one
Hi sorry you having such bad time . I get my wigs from Trendco who have branches in many locations. My wigs never slip as fitted well by experienced sensitive staff. And they cut & style them to my liking. No one has ever thought it actually was a wig. I also have a topper for warm weather that clips onto my own thin hair . Not so cheap as he fashion wigs but worth every penny. Hope things improve for you soon. Xx 😘
M son and dilaw bought me aspecial cushion- it’s fleecy and nicely padded with armsa the sides.
I use it in conjunction with whatever extra cushions etc,depending how I am on the day.
The fatigue isn’t too bad at present,I schedule sitting down and resting times.
I’ve been on Myclophenate for two and a half years,cautiously I think I’m not too bad.I’ve got morphine patches for my spinal pain.which helps a bit.take care
thank you all for taking the time to support me here. It really helped just to write it down. Today has been particularly bad… the adjustment is so hard, and add on financial pressures and work worries..and trying to still be the best parent I can, there are days it just feels too much. I know it’s only early days and I had 6 weeks off methotrexate, which caused me to flare quite badly, which is why the disease has become more active again.
But thank you again to all. This forum is amazing and your kind words have really helped. My best wishes to you all also x
I’m sorry to read your post and assume you mean a mortons neuroma in your foot ? It you have one of them have you been offered a steroid injection which does stop the awful pain in hours. It really only puts off surgery but worth getting done and if you can afford it a bout £200 well spent. RA is controllable so don’t give up and everyone has bad days RA or not, it’s called life. I hope you are better tomorrow and stay strong, positive and things will get better in time. It isn’t always easy but it is a journey that we’ve all travelled and do understand. Xx
Yes is Morton’s neuroma, I have them in both feet..well 2 in my right, but they are smaller at the moment and the MTX helps. I have had a steroid injection already in my left, but the consultant thinks it’s now time for surgery..it’s 10mm in size so pretty big and I really couldn’t have the steroid injection again…so just managing on painkillers at the moment.
And I know, bad days are part of life for sure, I completely understand that. Thank you x
I’ve had one removed twice they can regrow and the stump is painful so again injected. Try not to get too depressed as even though painful they aren’t dangerous. I remember it’s like walking on broken glass and surgery was quick and like a miracle except over 5 years it regrew so injections and the surgery again. These things are sent to try us, have you tried insoles ? as I found useless in fact made it worse, ! I had insurance so the operations were done privately, these days the wait times are horrific yet it’s a simple operation that makes such a difference. One thing I was advised was wear a shoe with a small heel which helps take the pressure off and roll the foot over a bottle of ice when it was really bad and that did help.
Oh that's interesting, I've seen a podiatrist who said I've got a neuroma & really told me off foe wearing boots with a slight heel, I'm going back next week with all my daps / trainers for her to give me insoles, I went initially as my toes & feet keep going numb whilst walking & it was only after she manipulated my foot that I now get pain 🙄 x
Sorry to have to say this to you but your just a normal person. Obviously, before you were a super woman doing it all but just now your fighting a lot of battles on many fronts and it's perfectly normal to be exhausted physically and mentally from it. Speak to your GP about how you feel and the rheumatology team.
It does get better yesterday I woke up and just cried because so many bits of me were sore, I'd cried going to bed the night prior also. This morning don't feel that bad...not actually got up yet...but your not alone in how you feel, there are plenty of days I could have written the same post.
thank you, and yes I know this was just a normal bad day..and that we all get them. But being able to share here with others also on similar journeys really helped. I get little support or understanding elsewhere. Which I’m sure is the same for many.
I’m sorry to hear how much pain you’ve been in too. I completely hear you.
My gp is pretty useless, well I don’t really have one and they just tell me to speak to rheumy team, who fortunately are excellent.
I hope your pain subsides a little and thank you for your reply and support.
Don't chat, few weeks ago I rang GP for advice regarding pain relief and was told he wouldn't know. 🙈 They tell you speak to the rheumatology people who then say prescription of pain killers is down to the GP. I have zero patience now for anyone saying they are sore but not taking pain killers. It's just not possible to explain to others how difficult it is to be sore and feeling ill all the time.
you are not alone in this journey which has fears ,uncertainty,fatigue,Moran,breaking and at end rising again ti fight ,ti struggle till the last ball .
Mega cwtch to ya really really know how you feel on times. It has taken me a long time to accept my diagnosis. I used to be mega fit and constantly on the go. I left my job quite a few years ago when I worked part time. I couldn't cope I would be struggling to keep my eyes open come lunchtime. I really really feel for ya. Hang on in there and take careXxxx
Adjusting to a new way of life which includes lots of declining evenings out and struggling with fatigue
I’m often in bed at 7:30 and feeling rubbish and like I’m going to work coming home and going to bed
I’m still learning to pace myself and have had lots of different medications but still looking for the right mix for me x. In the meantime it’s all very ip and down emotionally and quite often I have a vent in here where everyone understands how you’re feeling
You’re defo not a failure yiur just tired but you will start to feel better and learn how to manage everything
It’s a long road that’s for sure and it’s hard to get your head round at times and I get frustrated and cross with myself and then I overdo it by doing too much at the weekends and the week and end up feeling really rough and sore.
Chin up stay strong x. Pace yourself and don’t beat yourself up xx
Coming to terms with a chronic and at times debilitating disease, is difficult.
Being a single parent is difficult.
Combining all of the above (and you have more to deal with) would be overwhelming for anybody.
I share Kitty’s advice - call the RA team and tell them how you are. Also NRAS helpline, there’s always someone to help. It might be worth calling your GP too, if you tell them your mental health is suffering, they should offer help or at least pointers, pretty quickly.
So sorry to hear you are going through some tough times and well done for reaching out. Am no expert but wondering in the short term at least if you have a bit of time in the day for some self care to help you relax it might be a start. In my experience the mind and the body are very connected so a quiet session of yoga or meditation may help. I start my day with Clare Connolly’s 15 minute beginners yoga stretch (on Youtube) but there are hundreds of other options available depending on what you like. I find this really helps my day get off to a positive start. Try to find the time to prioritise yourself and your health. No-one else can do this for you. Wishing you all the best.
Hi. You have such a lot going on and your life has changed dramatically. It isn't easy to accept and it is still early in your RA life but once you do accept it, it will be easier for you. Do not blame yourself or feel it is your fault that you can't cope at the moment. Losing your dog is a terrible tragedy and you are still dealing with that. RA is a disease that changes everything and fatigue can often be the worst factor. You don't say how old your daughter is but being a single parent is very difficult for anyone without have a chronic illness. I would suggest that you try to deal with one thing at a time. Don't be so hard on yourself. You didn't ask for RA but you now have to deal with it. I know this is difficult and there isn't an easy solution but being kind to yourself, giving yourself time off from worrying and all the other emotions that come with the disease. Is there a NRAS meeting near you where you can meet others with RA. You could ring the NRAS helpline, they are great and will help you. Maybe you could speak to your GP about something to help with your mood, for a short time. Of course, you can always post on here. No-one will think your moaning, no-one will judge, no-one thinks you are self pitying. We have all been where you are now and I know things will get easier for you once you accept it and even embrace it. Keep posting. xx
Hi Sapphire1701Let me start by saying you are NOT a failure and you are NOT self pitying! You are strong and youve had the fortitude to see this.❤
Everything you have described is what's happening to me. I completely understand how you are feeling low, fatigued and wanting to sleep all the time. The difference between you and me is you have your beautiful daughter to fight for. I only have my cat's who are I am ashamed to admit are the only reason I get out of my bed for.
I am not too sure what RA is, it sounds quite debilitating. Throughout your life, it sound's an uphill struggle for you. It must of been heart wrenching for you losing your beloved dog. I was a single Mum but the difference is my girl's are now young women and have all moved a long way away. One of my girl's lives in New Zealand, the nearest lives down South 3 hours away.
I too have had a difficult life but looking back my daughter's were my strength. Now living on my own creates so much loneliness 😪 where at times I feel like I am down some dark hole & I can't scramble out of it. I have gone from being a fun loving extroverted woman, to becoming a reclusive introvert even afraid of answering my own front door.
However, my Mum & Dad used to say to me - "The only person who can help you is yourself". Oh how I miss them, they were both philosophical and came out with brilliant mind provoking phrases. I adopted a lot if their phrases and use them as tools to push myself through to the bright side.
I start by looking in a mirror and telling myself stuff e.g. "I am beautiful." - "I am intelligent". etc. Basically it's self affirmation. I purchased a book by Louise Hays which have lots of inspirational quotes using them when I do my affirmations.
I've had a really traumatic life, I fell 30 feet braking 12 bones, mainly in my back, plus my foot. 2 years ago I was rushed to hospital by ambulance with it's sirens & blue light's. I had a cardiac arrest before I got to A&E, I woke up in I.C.U. diagnosed with Sepsis. Apparently my gallbladder which was packed full of gallstones infected my liver and kidneys, plus they found a large blood clot in my portal vein. The nurse had told my daughter's it was 50/50 whether I lived. They weren't allowed to visit me due to Covid. I also had lost 70 per cent hair volume due to my condition.
I survived because like you I am a fighter, I have tried so hard to remain upbeat but it's as though my energy levels have depleted, I am just so tired all of the time and all I want to do is sleep all the time. Then I was told I needed B12 because my B12 levels were virtually zilch. I have been told once I start with the B12 injections I will feel great like I used to feel.
Your condition is obviously affecting you too. I am not saying you should get B12 injections but I feel you should discuss the possibility with your GP.
Maybe you could explain to me what RA is? Is it your condition that is making you weak, tired all the time and wanting to sleep? When your body goes through trauma, it affects every sphere of your body, your life.
Why don't you contact MIND? This organisation is brilliant helping you understand why you are feeling so low. When it was suggested to me, I refused to admit that my depression warranted this intervention, but eventually I contacted them and now I feel much better than I did - you are not alone Sapphire1701, there are people only too willing to help you. If you want you can use me as your sounding board. I will help you OK?🙂
Just know you are in my thoughts and I will pray your life starts to get better real soon. You've taken the first step and now you will find there are lot's of lovely people on this site who'll be only too happy to help you in any way. We are your new family and we're here to help you.
Hi, it will get better. know it’s not easy but unfortunately something we have to deal with to control the R A. I suffered with brain fog, was really down having to go on medication it really made my life miserable. The MTX did get it under control but takes time. I’m now on Benapali ( No MTX ) and the brain fog is sooooo much better. Not free of pain, but better than I was so hopefully under control. So please stick with it talk to your Rhuematoid nurse, ours are brilliant! We all understand what you are going through so pour your heart out anytime. Sending hugs! Hope you feel better soon 🤗 x
I know it's hard to get to grips with what your going through at the present and reassuring words from people are Great all I can say is I've been there too and Just take a day at a time lots of rest and don't let anything or anyone get you down, easy for me to say but I've been there quite recently too.
Remember you have support here it's a great website.
Sorry life is so tough for you at the moment, whilst it doesn’t change things, pretty much everything you say resonates and I bet we all understand what you’re going through.
I only joined recently in the middle of my own sh%#tstorm and the replies from everyone gave me hope to carry on, plus they’re is so much experience here.
Like you, I have a young child and that’s hard, I feel guilty and resentful for what I can’t do for her or with her, she puts my bobble in for me when I should be platting her hair for school and little things like that are crushing sometimes.
I was a keen runner before RA so I know how it feels for things to change there too if fitness was your thing.
I’m praying my next meditation works when I get it and then I’m going to shove RA as far as I can to the back of my mind and enjoy some life again hopefully, appreciate every little thing and seize any opportunity or invitation my body allows because that’s the one positive things it’s changed in me, it’s simplified life to good & bad days and only we appreciate how that is and a good day in our currency means so much more than the average Joe and I’m going to relish them! Not to say I wouldn’t love to be the average Joe again 😄
I can echo what others have said, please put yourself first, lean on others where you can, get the best you can out of your Gp and Rheumatologist. Take care and I hope the tide turns for you soon x
I’m sorry it’s so hard. I was diagnosed in 2018 and remember how long it took me to accept that I have this disease… tbh, it’s a constant process but you know what, i’m glad i’m still here.
Hey, if MTX isn’t working for you in terms of quality of life, go see your Rhuematologist and ask to change your meds. It’s your body and your life and you can do that.
It will be a roller coaster. Right now you are down but I want you to remember that you will be up again.
Speak to your GP and tell them how you feel. You need proper medical support to get you through this. It is not self pity you just need someone to sort you out. My dad used to say it will be alright in the end so if it’s not alright it’s not the end … just a blip in the journey my lovely 🌺
Hi Sapphire, can't really add anything more than that has already said in the reply's,hang on in there, try and get some help ,always good advice on here, wishing you all the best, Jeremy
Its very hard to cope when RA does its worst, but remember, nothing ever stays the same, get help from your rheumy team, once the disease is under control you'll be surprised at how quickly you can bounce back. Like so many have said, we understand, we have been there, your doing a great job coping, be proud of that xx
Everything you feel is usual when first dealing with RD, it's an awful disease to deal with, overwhelming at the beginning. One reason is it's in the blood so symptoms are throughout your body. There's research that shows the inflammatory aspect of the disease puts pressure on the brain so can be a factor.
I got depression on & off prior to RD & could get through it with the usual ways to cope. Once I had RD the depression was for longer & harder to get through, in the end I spoke with my GP & we used antidepressants to take the edge off. Also at the time I had OA in my hips so the pain, lack of mobility was awful. Since had THP, now 11 years on & my RD is under control so pain is minimal which helps. I also go for reflexology & massage regularly.
We all have times when we off load here which is a big help, makes you realise how what we feel is usual.
Hi Sapphire1701, sorry to hear you have been feeling so low. It looks like you have had some lovely supportive replies from our forum members already, but just remember that if you do want to talk anything through, our Helpline is here for you. Just call 0800 298 7650 between 09:30 - 16:30 Monday to Friday.
wow..completely overwhelmed by all the supportive messages, truly can’t thank you all enough for taking the time to respond to my post.
Yesterday was a particularly bad day, but today has been better. I really am touched at all the kind words, encouragement and support.
I wish everyone here all the best on your own personal journeys too. I truly believe what doesn’t break us, makes us, and out of some of the darkest moments we find a way to be kinder to ourselves and other others. Thank you all so much. Pretty much lost for words to be honest. What an amazing group of people you all are x
Morning. It’s very traumatic and shocking. Be kind to yourself and get some Mental Health support. You can self refer to IAPTS or get your GP to refer. Your whole life has just blown up.
Work may well be making you worse. Go on long term sick and ask your GP to support you with this. Benefits are another drama, but join Benefits & Work (£20) for info and Fightback to help you with Applications. You have to pay them but it’s a great investment.
Someone has just dumped a truckload of bricks on your head. Don’t beat yourself up/ say ‘no’ to things you can’t do/ and take a day at a time.
I'm hoping that you are getting more support other than from all of us fellow sufferers,and that you have contacted your df?There is also a great nre service at most drs called social prescribing where you could access some one to talk to on the phone or something uplifting
You don't sound self pitying at all and you have taken one of the most difficult steps of all by reaching out to this forum. Give yourself a gentle pat on the back for that as its not a sign of weakness, thats a strength. I don't want to sound intrusive or nosey but are you getting all the benefits you are entitled to. I would contact CAB, to look into this as it may take some of the pressure off you. Do you have family members who can help? This diagnosis is scary, but you can live with it. I had to give up a job that I loved, I was a Nursery Nurse for 15 years, I'd exercised every week pulled up and laid carpets in my own home, wall papered etc but just couldn't anymore. It's difficult not to think in terms of the past, but you have to try. You have to begin to recognise the new you. You may be able to do some of the things you used to, just in a different way and it may take longer. Talk to your gp and rhuemy team and recognise the fact that you are doing all things to the best of your ability. That's got to be worth something, and whilst your body is in pain, recognise that you and it are dealing with such a lot at the moment and be kind to yourself, you are still worth it! Big gentle hugs.
Thank you.. i think when I wrote the post was a particularly bad day, emotionally..but it really helped sharing.
I get universal credit now I’m working part time, I’m not sure I would qualify for anything else.. I wouldn’t qualify yet for PIP as am still pretty mobile, and I’ve had friends had horrendous time with PIP assessment. I’m managing, at the moment. But if things change then yes I’ll definitely go to CAB.
My mum is an hour away, so comes every few weeks.. but we’re not particularly close. I’ve always been fiercely independent which is probably why the adjustment is hard..
I know things will work themselves out and with time it will get easier. Thank you again.
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Pain without obvious inflammation..... confused
Changing my diet may give me some relief, is it all in my head?
feeling very down
Losing job
