coming here for a bit of a moan as so difficult for non RA people to understand…
been having such a stressful time with work, that I ended up leaving.. I had been offered a new job, which was going to be a change, but in between the two am having a massive flare and have had to withdraw from starting the new job. And I’d resigned from my previous job! (Tho it was destroying me, completely toxic)
so now I’m currently a single mum, unemployed, trying to deal with my RA which since going on to biologics had improved hugely, but now is doing a big u turn. Fatigue & brain fog are constant, many stiff and painful joints and have elevated CRP (mines never really been elevated)
stress is by far the worst for RA, but my stress is unavoidable as I’m facing such financial difficulty. And also no idea on what, how or when I can find a job.. I’m currently going through a work capability assessment and applying for PIP (which I know will be refused).
I’m trying so hard to stay positive but I’m just so angry at this stupid disease right now. I’ve always worked and supported my daughter (my ex isn’t great with financial support) and I just feel I’m spiralling. I can’t escape the worry of it all.
I’m seeing Rheumy this week but think they won’t look to change meds yet, I’ve only been on adalimumab for 8 weeks. It worked brilliantly at the start.. and aware current flare is stress & worry.
Really I just came here to vent.. no one else truly understands the way you all do here x
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Sapphire1701
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I’m so sorry. Life is tough for you right now and no mistake. Maybe a subcut jab to tide you over? Make sure rheumy knows about your situation. Make sure you apply for any benefits, council tax reductions etc. Citizens Advice will know more. Xx
Thank you xx spoke to citizens advice (eventually.. though they were useless!).. basically just have to find the info out yourself. But yes I’ve put in for council tax etc..
Given that you had a job and were offered a new one you are obviously eminently employable so I've no doubt you'll get a new job when you are ready. For now live has given you a chance to chill, it sounds like you really need it, I do understand the pressure of money, but just for now you need to enjoy the chance to lie in, watch netflix and afternoon nap.I'd imagine you spend your life working hard, focused on your daughter and doing the day to day on your own. That's hard so you're doing great, stress is such a big part of RA and flares so make the most of this chance to relax.
Thank you.. and yes I’m sure I am employable, jn some capacity! Just easy to spiral and the job Ivd left just completely crushed me so yes I need to try and just trust everything will be ok.. x
I know, many times I've really been low with the whole situation. TBH if I wasn't self employed I'd have probably had to leave my job. There are times I think I need to stop working too but just at the minute I'm managing. It's easy to lose sight of how brilliant we actually are when we are in the middle of a bad spell.
Hi Sapphire. We all totally understand how awful this chronic disease is. I developed RA when i was 21. (30 yrs ago). I was working for the Civil Service. I was medically retired when i was 26. But i was a bit luckier than you. I’ve never had kids. I had to go back home for a while. My mother was a nurse. She was great with me. I was very lucky that i didn’t have financial worries either. Maybe you should get your ex to cough up some extra money. Tell him your child’s welfare should be a joint effort! Like others have said. Apply for as many benefits as you can. Try & get a steroid injection to tide you over. As we all know. This awful disease can get worse with stress. Are there any other family members that could help out with things? You sound like a very strong, independant person, which are great qualities. But sometimes, we all need to show we need help. Lastly. Spoil yourself. Be kind to yourself. You can’t help the fact you’ve got this bloody thing. Get a nice creamy bowl of ice cream. Or a chunk of cake, a hot cuppa. Get some painkillers. Put a comedy on & sit with your daughter & bond even more while you can. Because i’m sure you’ll be working hard again soon. So make the most of having some shared times together. My mum was fantastic. I really admired how hard she worked. I lost her 6yrs ago & miss her every day. Although i was so ill & could hardly walk. I still remember we had some lovely times together. Good luck. X
You sound like a sweet, kind person & this chronic disease can really take you over, both mentally & physically. It can also make you feel vulnerable. So it’s great your mum’s there for you. If you have a garden. The weather’s quite nice at the moment. I know it’s hard to concentrate when you’re in pain. But do you read much? (I live in a flat). If you have access to a garden. Get a nice cover round you, a cuppa & get a good book. It can really take your mind off your problems. Good luck (again!) x
So sorry that you have so many worries on your shoulders. It is true that stress is your enemy but hard to avoid it.Adalimumab was very successful for me. I keep notes since being diagnosed in early 2019 and happened to be looking through them last night. I started Imraldi (Adalimumab) in Feb 2020 & it was December before I could definitely say it was working with no help from steroids. So 8 weeks is no time at all.
Ask your rheumy for help to tide you over. My rheumy believes there's no point in being in unnecessary pain. I tapered off the Prednisolone a couple of times & at certain points the pain etc returned. The advice was to stay on the level I was at before the symptoms returned, wait a while & then try further tapering.
This is, of course, only my experience but hopefully you have a sympathetic consultant who can help steer you through this awful time. Best of luck
Sorry to hear you’ve had to leave work because of your health, it can be a really difficult decision to make. As others have said, claim all the benefits you can. There are a few benefit checkers on the internet that can calculate what you will be entitled to, once you’ve added all your details. Hopefully the doctors will get your RA under control soon and you can get back working in a job that considers your health.
I’ve been in this situation with both my boys and know how stressful and demoralising it can be. Also had an ex who paid me nothing for my eldest son, despite being chased by the CSA 🙄🙄. But, I got through it with a little help from my mum and dad and came out the other side.
Thank you so much.. like you, I’m sure I will come out the other side too.. just the weight of responsibility. It was hard enough when I was physically well.. but last 2 years since diagnosis , just been very tough. & yes similarly my ex can be rubbish at times, he ‘chooses’ to only work 6 months of the year.. but don’t even get me started on that one! x
Totally feeling for you. Sounds like you did the right thing by leaving the job even if it means money problems for now. Make sure you get the help you need from everyone:, rheumatologist/GP, put your foot down and tell them you can't cope! Citizens advice, eg what help you can get from the council with bills etc and just try and make a few hours each day of YOU time to rest. Sending hugs
Fab advice from everyone and agree that you should lean on everybody who may be able to help. GP, rheumatologist, DWP, Citizen’s advice - all exhausting to contemplate but worth it in the long run. You clearly can’t cope with what’s smacked you in the face so you need to shout for help and it is out there.
Has your new job still got an opening for you? Are you able to take it up when you’re feeling better? As wilbertjellyfish says, you’re obviously employable as you’ve been offered that job so worth letting them know what’s going on. RA comes under the Disability Discrimination Act so you shouldn’t be refused it for health reasons though of course, I don’t know what it is you would be doing. Worth a try?
Are you able to get more out of your ex for support for your daughter? He is obliged by law to pay a reasonable, regular contribution and ok, that’s another job for you to start but worth it for both your futures.
I would go and howl all over your GP, let it all out and ask for any signposting help they can give you right now. The stress you’re going through is contributing to the brain fog and the fatigue and is probably the major factor in both (been there and once the stress is relieved both tend to subside) so the sooner you get your disease under control and you’re back in control of your circumstances things will even out.
Do hope this doesn’t drag on too long, come on here and rant and shriek - we’ve all been in stressful situations and understand only too well how it can affect you. Very best to you and let us know how you get on.
Thank you.. yes I’ve had a bit of advice re benefits etc.. and know a bit myself anyway.
There wasn’t really still an opening currently, but they were very reasonable re accommodating disability.. it’s just the nature of the job (was support work in trauma).. I just realise is too much. When they offered to me, I’d applied for a different job.. but they then offered me something different and the original job they then gave to next candidates. Tbh was all a bit of a rollercoaster as I was just desperate to leave my last job.. long story really. Perhaps realising that I need to focus on me rather than giving to others all the time..
and yes have howled at GP many times.. solution apparently anti depressants or HRT…
But just sharing here I feel a little better, so really do appreciate this support. Thank you x
You've already received excellent advice from others but could I suggest you ring the NRAS helpline? Open in office hours the helpline on 01628 823524 has the most lovely, helpful and caring people available to discuss your problems. Sending gentle hugs
So much great advice but can I add that on a practical level you should contact the Council for housing benefit form and complete it you don’t need to wait for anything else if they need more info they’ll get back to you but the commencement is the date of first application so leaving it might cost you more. And tell them that your circumstances have changed so you can perhaps spread any bills over a longer period. Likewise Gas,Electric and Water companies can give some leighway. Contact your mortgage company or landlord and hopefully some of your worries can be alleviated. I hope you find some employment soon but in the meantime do everything you can to relieve the stress of financial burdens.
I've been doing a regular hypnotherapy app for IBS which is stress related. I do it at midday (am retired so can do it then) and its taught me how to systematically relax and regularly fall asleep for five mins. I dont know if it'll help your stress but its worth considering.
Poor you all overwhelming init? As well as getting medical / RA help, can you speak with someone at Citizen's Advice about financial help, applying for incapacity benefit or similar?
oh trust me I understand! I have literally just had to hand my resignation in this morning and am in exactly the same boat as you. Single mum, massive flare and no where to turn.
Im afraid I haven’t quite worked out the answer yet. But you have my complete sympathy and understanding! I know I’m going to get new meds this week as I was taken off methotrexate a few weeks ago when I ended up in hospital after collapsing. Hence the bigger flare than I was already experiencing.
But all I know right now is it has to get better than this. One day at a time from here. One battle at a time. First battle get well enough to have the energy, but then don’t expel it all in one go. Get some medical support (the GP told me to stop catastrophising and take some naproxen and go back to work, when I asked for some pain killers). Then find some work that is desk based. After that I’m not sure. But I do want you to know that somehow this will be ok
hi tealblue, thank you for your reply.. and I’m sorry too that things are so tough for you also. It’s so hard isn’t it.. especially when people don’t fully understand, or can be completely dismissive. Just is a constant battle.
Likewise I don’t know the answer either.. but like you say just try and take it one day at a time. Easier said than done though sometimes isn’t it..
Sounds like you’ve had an especially tough time ending up in hospital, so bless you that sounds awful. My RA had got better controlled since going on to biologic (tho MTX worked for me but I couldn’t tolerate) but stress is definitely impacting. And very hard to avoid with all the worry.
I really hope things improve for you too. All the fellow warriors, we all have so many battles, all different, but all very real.
Like you just need some time to rest and take it one little bit at a time.
Hi Sapphire. I'm sorry life is difficult for you at the moment. You've had some great advice already, especially speaking to nras helpline. I called them last year when I was especially low and they were so kind and understanding. You will get through this and you will feel better than you do today. Whilst you're waiting for that to happen be kind to yourself and allow yourself to be loved by your family. x
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