Feeling a bit desperate

I'm just going to say sorry before I start as an attempt to alleviate my guilt at the Un censored whine that is to follow.

I was diagnosed three years ago, was initially managed on methotrexate but gradually deteriorated to the point where that didn't hold it so moved on to embral which worked fantastically for the next two years but I have now become tolerant to that and have to start all over again with something else. I'm in the horrible period of stopping all meds whilst waiting to start the next load of meds so I'm in full flare up and feeling totally Crap, particularly my mood as I'm fed up with the whole thing!

The thing that really gets to me is dealing with other people. I took two weeks leave from work as I had had a steroid jab which always makes me feel terrible initially - I get dizzy and nauseous. I made it back this week feeling like death only to go straight into a sickness review meeting as I have had 5 lots of sick over the past year. I know managers are just doing their job but when you've dragged yourself into work even when feeling atrocious, having to sit there and be told you need to reduce your sickness or they will consider whether you are capable of your job is too much. Logically, I know perfectly well they couldn't sack me on the low level of leave I've had (there are some advantages of working for the nhs, one of which is decent protection in the job contacts) but that's not the point. It makes me feel like a flake, like I'm failing when I'm doing my best. I hate my job anyway as they've taken away a lot of the things I used to do because I'm apparently too unreliable so I often feel like I have little point there anyway. Sadly, I can't afford to leave and the job market has shut down totally. I also have a little spark of pride let which feels they won't drive me out but it's definitely getting smaller!

I'm also struggling with feeling very alone with all of this (hence my need to vent). I feel like people around me are bored with hearing me whine all the time so I don't feel I can just offload at them - they have stuff going on in their lives too - and I struggle with it anyway. I always feel like I need to downplay everything as I don't want to be a drama queen and I'm so British I feel I need to constantly apologise for moaning anyway. I don't cope well with pity anyway so I'm not really sure what I want from people but some days I just feel like I'm going to burst with all the emotions and sense of desperation and feel the need to vent.

I can't figure out if I'm so down because of my situation or because of the illness itself -out of interest do other people find their mood crashes when they are having a flare up?

Anyway sorry for only posting when needing to vent but I didn't know where else to go.

17 Replies

  • Hi, sorry to hear you are feeling rubbish. Firstly are you in a union and if so are they on board to support you at work. My union rep was great I worked for DWP and they gave me reduced hours when I returned to work for about 6 weeks (on full pay) to give me time to recover. Unfortunately last year I was medically retired due to my health and I am now on my work pension and claiming ESA but I have to say I feel much better and I am not much worse of financially. I don't know if this is an option for you? Also has your employer offered compressed hours I worked longer days for three days then had two off which also at the time helped giving me a four day weekend to recover. If you are registered as disabled your employer should be considering 'reasonable adjustments' to allow you to continue working and I think that there is still a great guide to this on DWP website.

    Good luck and I really hope things pick up for you soon.


  • I feel for you darling and your not the first nhs member of staff to say much the same thing. Instead of asking how can they help you,they look at ways to get rid of you. They have no tolerence of staff being ill which sounds strange being as they look after the ill. When you have your meeting take your union rep with you darlling.

    Hugs to you and i hope you soon get something that will make your life a bit brighter.xxxxxx

  • Hi sorry to hear you are feeling so low at the moment, sometimes it just helps to have a good moan and vent a bit, and I know exactly what you mean, when friends ask me how I am I usually reply "good" or " not bad" even when I'm not as I think they don't want to hear me whinging about my health issues every time they see me, it gets tedious! Good advice from dmc12 on your job. You don't need to apologise for anything, hang in there x

  • I have found the reasonable adjustments and here is the link, apologies if I amteaching granny to suck eggs! x


  • Wow.......you have expained how I feel. I'm so tired of telling my boss that I am in a flare....No, I wont be in today....I have an autoimmune disease....I'm happy that your Granny found a cure with parsley...I have an autoimmune disease....I'm glad your Granny can walk as long as she eats fish...I have an autoimmune disease...2 tylenols helps your Granny? That's awesome... I have an autoimmune disease....I feel your pain. I'm tired of this broken record....Why oh why do our bosses not realize that people with disabilities have rights? Please don't let your boss "bully" you. I have stopped feeling bad about my sick time. It's time for us to stand up for our rights and stop feeling guilty about being "Drama Queens".

    I have learned the hard way that almost every country has provisions for disabled people. I live in Canada so I am educating myself on my rights in my country...No more will I feel "guilty".

    I will follow your post for advise

    Take care


  • I so empathise with the constant advice on managing arthritis - I do wish they would rename ra so that no more people advise me that Copper bangles are the answer

  • No need for sorry, you can have a moan here where people understand. The NHS does have a reputation of poor understanding when staff have health issues, you'd think they'd be the one organisation who'd be super aware & accommodating. Hopefully others who work in the NHS will be along & share their experiences & how you can can approach this.

    I hope things look up once you've settled on you're new biologic but meantime be kind to yourself & we're here when you need to let off steam. Some people find explaining the spoons theory helps their family understand how things affect them, worth a try if you've not used it before? butyoudontlooksick.com/arti... x

  • Thank you so much for the link to the spoons theory. What a brilliant way of explaining what we have to live with! I've never even tried to explain this to anyone....it just felt too impossible to even start....

    People are always telling me how well I look, although lots of friends now know they must be careful and not grab my hands, and a firm handshake is agony, because when I'm in a flare I curl up in a little ball for about 10 minutes to try and cope with the pain and nausea....but then they can't understand why sometimes it's OK and I don't react!

  • You're welcome, it's been around a while but of course there'll always be some who don't know about it. I know the feeling, men often seem to need to prove themselves by squishing your hand. When I'm faced with a handshake nowadays I offer both my hands & hold the hand of the person between mine, it works well might be worth a try. :)

  • Please do not feel like you are whinning or need to apologise. I felt excactly the same in January. Also work for the NHS.

    The people on here sent replies and that really helps to know others do understand exactly how you feel.

    You do not need all these extra complications of work not understanding or wanting to help when you just want to concentrate on getting well again.

    I have worked in Nhs for 37 years. Started as a pre Nursing student at 16 qualified and was forced into retiring from Nursing. Now work as a receptionist in a different hospital.

    The best advice I have been given is look after yourself because no one else will. Unfortunately that is so true for nhs workers today, we are just a name on a sheet of paper. They see the number of sick days and go through the ritual of sickness review.

    What I would say is go to occupational health now, you can do a self referral. Get your voice heard and let them know your circumstances. Make sure you know who your union rep is if needed. Also occupational therapy at your hospital may have an OT that specialises in work based problems. My hospital does so check.

    Do not let them get you down, your health and you are important. Concentrate on you, when you are feeling more comfortable you will feel stronger to fight.

    I have been off work for 5 weeks. The week before I went off sick I was being asked to cover extra shifts up to 8 hours a day. Not allowed to park when I have done for 26 year s there. Yes there are issues with building work, but no compromise. I could hardly walk had to use a stick, plus could not sit for long and then getting really stiff when moving. Last time I was off this long was 2008 when I had hip surgery, and you know what I do not feel guilty now.

    Listen to your body and do what's right for you.

    Like I said they are lovely supportive people on here and you will soon get the much needed boost to help you stop feeling so low.

    Take care Moomie

  • Thanks people, to be honest venting has already made me feel lighter and I've had a much better day today because of it. I have sought union help ( they were awful) and have been to occupational health in the past ( they were great and told work I would be sick more and to stop hassling me) and I'm not necessarily concerned that bad things will happen, it's just the emotional impact of constantly fighting the system at a time I have no spoons and feeling bad about it that's been the struggle ago thank you for listening - that was what I needed more than anything.

  • Hi thenortherngal,

    Sorry to hear you are having a tough time at the moment. It sounds like you have got some good support and advice from other forum users. NRAS has a publication on our website called 'when an Employee has Rheumatoid Arthritis' that aims to help employers understand the condition. If you would like to take a look at it it can be found at nras.org.uk/publications/wh...

    I hope you are feeling better soon.

    Best wishes,

    Nikki Tee- NRAS

  • I can feel your total frustration with everything, your are going through a bad time. I feel similar when in the midst of a major flare up, things should get better for you as, your RA is alleviated other things in life can fall into place. I have in the past been very low but, I do bounce back! There are positives!

  • Yes, I feel like that often. And it's a sort of double whammy, because when I DO feel ok - like today on day 14 after a depo steroid injection - I feel like maybe it is all in my head after all, and I'm a fake, and someone will catch me 'pretending' to be disabled. Basically, I feel guilty for being ill, guilty for not being able to work full-time, guilty for not being a good enough mother, guilty if I feel miserable and even more guilty if I have fun... It's pretty rubbish!

    Have you formally notified your employer that you are a disabled person as defined by the Equality Act? If not, do. It will give you some protection in any absence management and capability processes. And it means that they MUST make 'reasonable adjustments' to help you do your job; since the NHS is a large employer, what counts as 'reasonable' could be quite significant, including flexible working, changes to shift times, allowing you to take rests, a parking space, etc... You can say what adjustments you think would help you, and if they don't make them, they need to prove why they could not reasonably be expected to - the onus is on them to do that, rather than you to prove what you want IS reasonable. If they try to take action against you without having made reasonable adjustments, then they are on dodgy ground and you might have a grievance and/or tribunal case. But if it looks like things are heading in that direction, get some formal advice...

    Good luck. It's the last thing you need!

  • I feel your pain. I too feel that I am turning away my friends by my complaining and whining about my health. A lot of times I feel sooo frustrated and ill. Fortunately, all of us understand as we've experienced similar situations. Hang in there. You're not alone.

  • An update :

    I returned to work a week ago and have been making it through despite feeling truly dreadful (I'm currently unmediated effectively with only steroids and anti - inflammatory meds to modulate the symptoms). To top it all of I have an ear infection and an abcess in my armpit so I'm feeling just dandy, but that's by the by.

    I had my sickness review meeting today to be told that although the Trust policy hasn't changed (its a national nhs policy so they can't change that) their interpretation of it has and the previous reasonable adjustments we had agreed no longer stand. From now on, they will make reasonable adjustments such as some flexi working, modifying working environment and occasional working from home (although this will be monitored to ensure that I do not cause disruption to other staff or patients, effectively meaning I can only work from home when I would have had nothing in my diary and only then not too often) and, because they have made these adjustments, they believe that I should not need any more sickness leave than any normal member of staff. This means that if I have now than 3 episodes of sickness in 12 months or more than 9 days in a year, I will be on the first stage of the sickness disciplinary process which effectiveness goes through 4 stages, the final stage of which is dismissal / a decision that you are not capable of your role.

    I am now on stage one of the process and the agreement that everyone on that stage has to agree is that I will have no more sickness within 2 months. If I do, I will be reviewed and either moved to stage 2 or a another review period will be agreed within which I will have yo have no sickness. If I do make 2 months without sickness, I will be dropped back to regular monitoring but, as the 3/12 is a rolling amount, if I have any more episodes of sickness within the year I will be back on stage one and the process start again.

    I have explained that this is likely to be impossible for me as I have returned to work in the midst of a bad flare up as I didn't want to take too much time off but my manager has no discretion over this - indeed she has been pulled as being too lenient with me as I had had 5 episodes in sickness in 12 months before this meeting - the previous agreement of reasonable adjustment we made when I was first diagnosed which was recommended by our occupational health department.

    I feel incredibly despondent. Although I'm aware that this is only the beginning of a long slow process if they wish to remove me from my job, the sense that this inevitable and the sense that this is what my trust want to do is strong. I now feel a huge pressure to go into work, no matter what state I'm in, even when I don't have a particular busy diary and will be effectively just sat at my desk, trying to survive. The stress of this is horrific - the irony is that my poor embarrassed manager was forced to ask if was experiencing any stress or low mood as a result of my chronic illness after this discussion and then offer me a stress risk assessment (no I don't know what that means or entails either) to identify how the Trust can help me to manage my stress better.

    The thing that annoys me is that my husband works for a different Trust of the nhs which has an identical sickness policy (again, it's national) but chooses to interpret it completely differently. They have a completely different policy for monitoring your disability, and any sickness related to your disability is not counted in the 3 in 12 markers which are standard for the nhs. They review your job performance separately and state that they understand accepting increased absence (within sensible levels) to be part of the reasonable adjustments, considering your ability to do your job as a whole rather than just focusing on that one factor. I would get a job with then but the job market has closed down completely at the moment, trust me I'm looking though!

    So, I will go to the union and equalities officer and all those other supportive organisations but all I can see at the moment is one fight after another when I'm at my lowest and when all I want to do is my job. I wish I could afford to quit, but I simply can't. I'm so bloody tired with it all and am feeling completely not valued - I really had to not scream this afternoon when a senior manager went out of their way to contact me and tell me how grateful they were for the work I had put into a training project recently, and how much they appreciated it. They should talk to their hr department.

  • Oh don't apologize for venting. I don't don't want pity from people either. I too find myself downplaying how my health is.

    RA sucks

    Take care


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