Hello -

Suggy
Suggy Member Posts: 2
edited 28. Nov 2023, 14:09 in Living with arthritis

Hi Everyone, I am 33 years old I was diagnosed with AS and Psoriatic Arthritis at 30. I tried to hold off going on a biologic for a year and oh my it was a difficult year. I started adalumimab last year but then I got recurrent chest infections and pneumonia.

I also got married last year and it has been difficult trying to explain the fatigue and pain to my partner. He is great and listens etc but I feel like no one understands the fatigue.

I am also struggling to hold down my full time job. Do you have any advice for this? I have temporarily reduced my hours to try and get some rest.

Since December I have stopped the biologic and I didn't tell my rheumatologist as I was and still am reluctant to go back on it but I couldn't hold on for long. I have been struggling with flare so i got in touch. I am now waiting for a delivery of Etanercept.

The fatigue, pain and the feeling like I should be doing something all the time and being productive has taken a toll on my mental health. I have referred myself for talking therapy to learn to cope.

If you have any pointers please let me know.

Comments

  • Poppyjane
    Poppyjane Moderator Posts: 748

    Hello @Suggy welcome to the online community,

    You have AS and PsA , a full time job and you have got married all in the last year. I am not surprised you said what a difficult year . You have set yourself a lot to deal with and I get the impression you are beginning to reappraise your work/life balance. Reducing your hours at work is a good way to give yourself some time and space to manage the fatigue which is part and parcel of the disease. Referral to a talking therapists is another way to pause and redress the balance of your hectic life . Changing medication may be part of the solution as well. You seem to be making some positive steps to reassessing your life's journey and I hope that reaching out to the community will help you further.

    I attach some links which I hope you will find useful



    Our members will have lots of pointers and advice about dealing with life with arthritis for yourself and for your partner . Do browse round the community and join in with us, we are a friendly group and here to support you.

    Take care

    Poppyjane

    If it would be helpful to talk to someone ring the Helpline 0800 5200 520

    Monday - Friday 9.00a.m. - 6.00p.m.

  • Bee2
    Bee2 Member Posts: 10

    Dear Suggy,

    I hope this message finds you hoping and coping 🙏🏼 Bless you.

    I know all too well the impact of our pain on our mental health, I too have referred for talking therapy, if/when it happens, as I am very isolated in life now.

    In the meantime, for me, online relaxation and meditations help me get by and keeps the ‘reigns in the brains’, fish through YouTube perhaps? ...see if you find one that you like, so many to chose from I found.

    It doesn’t solve our pain of course, but it eases the mind in coping at least. I’m not a ‘hippy’ type person but mindfulness is a big key to daily survival I do think. I struggle myself in not getting bogged down with this agony (severe degen. OA, hips, knees and spine). I’m seriously looking to private surgery (££££££) If I can raise the funding. I really can’t handle this worsening pain much longer, gp’s medications just aren’t touching it and they zombify me. I live alone and struggling badly.

    So ANY little coping tools are good to have.

    All best wishes to you, keep in touch for support.

    Bev