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How do you manage to continue with work?

Posted , 5 users are following.

Lainey8
Lainey8

Hi

I was diagnosed with PA back in January this year. I also found out that I am HLA B27 positive and have spondilitis. I had crippling back pain and wrist and finger pains. I tried to ignore all of this to start with and was determined that it was nothing major and that it wasn't going to get the better of me! I started on methotrexate (15mg weekly) back in late July, but I have recently had it reduced to 10mg, due to side effects. Although I am still in some pain, my main concern now is the fatigue and general rubbish feeling that I wake up with every day. My doctor has signed me off work and said that ignoring all I have been through this year, was not the best idea. I have a physically and mentally demanding job and dont know if I can continue with it.  I was wondering if anyone else struggles with working and if so, how do you get through it?

Thank you in advance x

0 likes, 25 replies

25 Replies

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  • f70804
    f70804 Lainey8

    Posted

    Have you been to see occupational therapists or occupational health through work? It might be worth trying them to see if there are adjustments they might be able to make to your job or equipment you use. I Had a similar diagnosis and have a stressful demanding job so can totally empathize.

    I find that for me the most helpful thing is trying to take each day as it comes. Some days are hellish admittedly but others not so much. Hold on to the thought that it won't always be as bad as this, things should get more manageable as treatment and medication is adjusted to find something that works for you. But I know the time that can all take is incredibly frustrating.

    I've had to totally rethink my approach to work. I don't have the stamina I used to have and if I do work at the same pace and intensity then I literally have nothing left for my family. I have also reduced my hours to 4 days a week. It can be utterly demoralizing and quite depressing especially if work has been a big part of your life, and I really find it tough to stay mentally strong sometimes. However it sounds like you have a sympathetic ear in your doctor. Can you ask if there are any other supports out there the GP can help you with? I know that some health authorities have access to clinical psychologists to help support people who have chronic conditions that have meant they have had to make major life adjustments. It might be worth asking?

    In the meantime, find other small things that you can get enjoyment from. I find getting outside even for a short spell every day can help me keep perspective a little.

    On a totally different note, when I was at my worst physically my GP suggested reducing hours temporarily instead of being off work completely - it was a good compromise as it helped make me feel mentally a little better as it kept a bit of routine and normality in my life.

    Anyhoo, I hope that has been of some help and I wish you all the best. x

    • Lainey8
      Lainey8 f70804

      Posted

      Hi.

      Thank you so much for you lovely reply. I have already tried changing what I do at work and am incredibly lucky to have amazingly sympathetic people around me. Unfortunately, I am still struggling. It's positive to hear that things will get better though as I feel like I have hit a wall at the moment. I think I you are right and that pacing yourself is the way to go. Shame I didn't try that to start with as that has led to me feeling so run down now! I have also been suffering with work related anxiety, which my doctor said is the result of everything that is going on. I have tried phone counselling, which although helpful, hasn't worked. I don't like being off sick and the guilt that comes with it. I also don't like being negative but it's a struggle to see the light at the end of the tunnel right now!

    • f70804
      f70804 Lainey8

      Posted

      I really feel for you... It is such a viscous circle isn't it? I am sure that all the stress and anxiety does our condition no good at all either and as you say the resulting guilt just seems to add to the emotional roller coaster. I had a very emotional meeting with the occupational health person I was sent to as a result of the absences I have had over the past year... Before I left she said some very nice things about being strong and trying so hard. She sees so many people through her door and it all opened my eyes a bit to just what I was trying to deal with. Try not to be so hard on yourself and feel so guilty about being off work. Your body needs you take a break... Be that physical or mental.

      My rheumatologist also said I needed to realize that whilst I might want to "battle on" or "fight it" I simply don't have the stamina or the reserves that I used to have. Be kind to yourself.

      I have also started seeing a nutritionist who has taken a really holistic view to everything that is happening with my health - whilst I am not sure yet if the adjustments I'm making will truly impact on the inflammation and pain, I am feeling healthier in general and the fact I have gone out and done that makes me feel more proactive, which in turn helps makes me feel a little more positive.

      It's a tough thing though and try not to be too hard on yourself when you hit a wall. Even the most positive of people will feel anxious at times. And remember, just because you can't see the light at the end of the tunnel at the moment, it doesn't mean that the light isn't there 👍

    • Lainey8
      Lainey8 f70804

      Posted

      I am so sorry that you have had such a rotten time. Your Occ Health person sounds lovely. Thank you again for your positive comments. It really helps to hear from someone who understands what it feels like.I would be interested to hear how you get on with your nutritionists advice. May I ask when you were diagnosed and how long it took for you to take it all on board? I really didnt take it all very seriously and I think that has gone some way to it hitting me so hard now. Its not until I read other peoples comments on here, that I realised just what an impact it can have on your life. It is very hard to re-train your brain into not kicking up a fight over feeling unwell. Reading your reply has definately made me think! Thank you again x
  • sheila65847
    sheila65847 Lainey8

    Posted

    Hi Lainey,

    sounds like you have meet getting good advice from the forum and your GP. don't trivialise PsA or spondylitis there are chronic, life changing conditions. Have you seen occupational health at work? If not, as your manager for a referral immediately . We are protected by the Disability Act which states employers must make 'reasonable adjustments' to support us remain in work.

    I was diagnosed in 2011, experienced a very difficult time with me d's including methotrexate induced hepatitis, allergies to other DRMD 's. Also had 2 biological treatments fail to continue PsA. I, like you, battled on at work for several years, life was horrendous - work and sleep. Eventually my employer terminated my contract due to ill health in October 2014. On reflection I should have stopped sooner but my mentality was such that I was gonna beat this thing! Sadly, not possible. Wishing you well

    • Lainey8
      Lainey8 sheila65847

      Posted

      Oh my goodness. I am so sorry that you went through that. It sounds awful. I think asking to see Occ Health at work will be my next move. I did wonder if i would be better off leaving and finding a less stressful and exhausting job, but now I am worried that I will have to declare my illness and no one will want me! Have you managed to find yourself new employment? I now know not to think lightly about PsA, thanks to this forum. Strangely enough, it has actually made me feel slightly happier knowing that I am not going mad and feeling like this is something to expect. When I first saw my specialist nurse, she told me that methotrexate would change everything and that I would feel so much better! i really did think that would happen and I think that disapointment has also knocked me. It is going to take me quite a while to adjust to life at a different speed and even longer for my brain to adjust!!!! Thank you very much for your advice. Its very helpful. I hope things have improved for you x
    • sheila65847
      sheila65847 Lainey8

      Posted

      Hi Lainey, good,see occ health, wise move. Also make an appointment to see the Disability Employment Adviser at your local jobcentre. They are a fantastic support and will advise you how to apply for PIP (formerly DLA )wish you are entitled to. It's not means tested. Sadly, I'm too disabled to return to work at present. As I said in my earlier post, rheumatology has not yet found a drug that will get my disease into remission. I'm trying a new one next month, so here's hoping! 👍
    • sheila65847
      sheila65847 Lainey8

      Posted

      Remember your employer has a duty of care to make reasonable adjustments , that could include an alternative job, pat time work or working from home. THAT IS THE LAW. are you in a union?
    • Lainey8
      Lainey8 sheila65847

      Posted

      Hi

      I didnt think I would be eligable for any financial support. I thought you had to be quite severely disabled to get anything? I shall definately look into that. Thank you. I am not in a union but thankfully, I work for a very understanding employer, who's keen to keep me at work. My wages are not very high and I dont think I can afford to drop many hours. If I can get some financial support, this would really help though.  I am sorry that you are too unwell to work right now. Its awful that they havent found a drug to help you yet. I shall cross fingers for you. Thanks again for the great advice x

  • lucynewas
    lucynewas Lainey8

    Posted

    I am an occupational health specialist as well as suffering from this.  

    I have found it helpful to split my MTX (20 mg) dose into two half doses on Tuesday and Saturday nights.  In addition to this they have added in sulphasalazine (increasing dose starting with 500 mg once a day to 1g twice a day).  After 3 months the hairloss slowed down and my symptoms improved, but not enough to come off the steroids altogether. 

    I saw my specialist nurse, who said I had a choice to come off the steroids and struggle to work, or maintain a minimal dose of 3 mg per day and manage better.

    It's a trial and error.  Keep a really accurate symptom diary along with what doses you are taking - it takes a couple of months but really works.

    Work:

    I now do a compressed day, which means I do my on-site and face to face work in the mornings, with flexible afternoons to allow me to take a couple of naps - so a later finish, but I cand then still cope with the evenings.

    Good luck - feel free to PM me.

    • Lainey8
      Lainey8 lucynewas

      Posted

      Hi. Thank you so much. I may well contact you if that is alright. I was on a 15mg weekly dose of methotrexate and I struggled to even move for a couple of days afterwards and was an emotiotional wreck! My specialist nurse told me to try reducing to 10mg until I go back to see the consultant (which is in a couple of weeks). My inflammatory markers are normal, but the pain seems to be worse, especially in my back. Do the steroids have side effects? Keeping a symptom diary is something I hadnt even thought of! I shall start one of those tomorrow. Thank you. I like the sound of a compressed day! What a good idea. The trouble I have, is that I work in a school, so that wouldnt be possible. I never imagined that my life would be affected this much! It really is a lot to take in, isnt it. I thought I was just being a lightweight and didnt want to make a fuss. I am so pleased that I came across this forum and all the helpful people on it! Thank you very much and I hope things improve for you x
    • lucynewas
      lucynewas Lainey8

      Posted

      First things first - ring your specialist nurse and if she's OK with it, try changing to 5 mg MTX twice a week and gradually increasing by 2.5 mg a week until you have reached the 15 mg.

      Your consultant may be able to prescribe you a short course (2 weeks) of steroids to tide you over, and then a reducing dose.

      Compressed day for teachers: If your HT thinks it's practicable, do your teaching in the morning and then manage your lesson planning and marking from home.  Initially this could be a temporary adjustment for 3 months while you're waiting for the MTX to kick in.  

      By all means message me.

    • lucynewas
      lucynewas Lainey8

      Posted

      The Arthritis Care helpline was brilliant too - I can't put the contact number on here because the admin will have to check the content and that will delay the reply.
    • Lainey8
      Lainey8 lucynewas

      Posted

      Thats wonderful. Thank you. I shall speak to my nurse next week as well as make an appointment at the job centre to see the employment officer. I shall also call the care helpline. I am determined to do whatever I can to try to help myself! Having a list of things to do, will give me something to focus on too. I can't wait to get the methotrexate working in my favour! Thank you for the offer of messaging you too. I really do appreciate it xxx
    • lucynewas
      lucynewas Lainey8

      Posted

      Dear Lainey

      It's a pleasure - there's no point having this experience if you can't share things that make it easier.  Please keep me updated with your progress.

      If you like my posts, please do hit the vote button, as this helps me to know how best to help others.  Thanks.

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