Disappointed

I’ve been struggling since April and I’m due to start Baricitinib in the next 4 weeks. Work has been difficult as everything hurts and nothing works. Had a steroid injection on Wednesday. Thursday I was like the old me I felt on top of the world. Friday I was tired but thought it was Because I was more active. Saturday I had fatigue yesterday and last night not only am I back to square one it is worse. So no work today . Oh boy are they not happy... I told them minimal care during lockdown has had a knock on effect and I’m playing catch up. So texted my nurse not sure what she can do and my GPs for more pain relief. Praying new lockdown measures doesn’t effect me starting Baricitinib.... How are we supposed to keep our jobs ???? Can see me loosing mine .

[Lina282]

Know the feeling 😅 So happy that you feel better and hope your new meds will work for you x

[springcross]

Sorry to hear this, it never rains as they say, RA does like to lull us into a false sense of security. Hope your rheumy nurse rings you soon as it sounds like you're going through it at the moment. As to work, that's such a nuisance - hope you don't lose your job. Good luck with it.🤞

[Boxerlady]

So sorry to hear that - must be so dispiriting. 😢 🤞that you're able to start the new medication soon and that it's "the one". You can't help being ill (no-one can) but sadly not all employers are as understanding as they should be. Hopefully there's a good system in place re sick leave or are you more concerned personally that the job is too much for you?

I went out to work yesterday for the 2nd time since lock down (most of my work is remaining online) and the 1st time for a full day and was pleasantly surprised at how much easier it was than before. I now realise that my joints and energy had got worse more gradually and earlier than I realised (I thought that things deteriorated during lock down) and that my new med regime is really having a good effect. Hopefully that will help you to stay positive and believe that you will get there too. 💐

[Hidden in reply to Boxerlady]

Thank you. I’m only back at work 2 weeks for 2 hours a day . It’s a major struggle. To think 2-3 years ago there were not enough hours in the day 7 days a week to do everything I wanted I was so busy now 2 hours a day of work destroys me.🥺feeling grumpy today

[allanah]

Ok so have you got advice yet. You are protected under the disability law. Please get support from NRAS.org.uk or citizens advice or even better I suggest joining a union. They will help especially if you are asked into meetings about work.

[Hidden in reply to allanah]

They have been good it’s me ... I hate letting people down. I hate this disease getting the better of me. All said and done they need reliable people and 2 years of being unreliable is a long time .

I’m feel disappointed in myself as well and a tad grumpy... well very grumpy...🥺x

[allanah in reply to Hidden]

Dont feel guilty you got sick ........what if your meds work in 12 weeks and you are out of work ....then you will feel daft.

Maybe think of things to help you at work, they can make " reasonable adjustments" , maybe start and finish later or have a rest area at lunch. Get advice before you throw in the towel but if you feel you need to leave there are career breaks etc you can maybe ask for or benefits you can apply for. Get help and advice asap to know the position for your employment.

[Pippy25 in reply to Hidden]

Please don't feel you are letting anyone down, you did not ask for RD to come into your life....there are people who are fit and well who constantly let the side down in workplaces and seem to get away with it. So why should you feel you are being unreliable, letting the side down when you have an illness that is not of your making. Sending one big warm hug your way, please don't be disappointed in yourself, be proud that you are doing your best to keep going. I hope too that you can start your new meds before any more measures may be put in place. Take care xx

[Mmrr]

I can't imagine having RA, need a medicine change and have to go to work under the circumstances we are living in. You are doing well just to get by with all these issues, so please don't be hard on yourself, you are doing great.

[Green230461]

I was fine with work until I got shingles and then bang! Everything went wrong at once and I had to give up. But take legal advice from union or disability equality first they will help you. Good luck. 😍

[Pognose123]

I feel for you about work. If you are a person who takes pride in their job and work it’s very difficult to work below par. I was a ward clerk in NHS and realised I would never keep up so swapped to a library role (started at beginning of lockdown when libraries were all closed so I had to work from home). When I had my interview in February I felt great as meds were doing good but I did tell them in my interview I had RA and they still took me on. They have been marvellous ever since and I don’t take it for granted.

Is your job possible to work from home and would that help you?

This is my dream job and gave wanted it since I was a little girl so I am throwing any energy I have to do it. That said I’m finding ways to work smarter not harder - some of which is helping my colleagues as well!!

I think if I was still in nhs I’d have had to leave as I’d already been pulled in for time off 🥺

Some friends said I took the opportunity to move jobs to a dream job to turn a real negative to a positive. I’m even now on more money than I was.

It’s a terrible time to think about a career swap but keep it in mind....

Have you felt that covid has affected your rheumy care, because I felt it has but didn’t know if that was my inexperience of how it all works if your meds aren’t doing well etc.

I hope you get your new meds very soon x

[Hidden in reply to Pognose123]

Thanks for the lovely reply. I work in a school and they have been good . I have reduced my hours too just 2 a day and I’m still struggling. If I could just get the right medication.

I’ve been bad for 2 years tried and failed meds but yes covid has been a factor. My nurse and Rheumatologist were redeployed and the staff left to run the department were in it over their heads ( I’m being polite here) I felt a nuisance. I know my records were not kept up to date . When my own nurse came back she didn’t have a clue what problems I was having on my medication or the reports of my symptoms. She has been so proactive more done in 2 months than the whole of lockdown. I’m playing catch up now... I will get there I’m determined. X

[Pognose123 in reply to Hidden]

Golly - working in a school is exhausting even when you are well! I was a school support worker for 6 years so you are amazing doing two days when not great! Particularly with how much upheaval schools have had with covid! 😔

I find the info about your rheumy team very interesting. This coming Thursday I have my first face to face since 2/1/20 and I know for a fact my paperwork is behind 😬 my GP has incorrect dose info as that has not been updated (I know this from ordering repeat prescriptions) so my ‘not usual’ nurses have not done the communication letters etc. I don’t take the stance that they need reporting or owt daft but I do worry about any people who are not with it and on top of their own care etc. I know nhs staff are very hard pressed atm and ive seen it first hand when I was working on a ward. But in the whole picture, there are people who will fall through the net 🥺

Glad you have got your usual efficient nurse back in your team 👍