Advice

Invictus
Invictus Member Posts: 24
edited 2. May 2015, 14:14 in Living with Arthritis archive
I could do with a little advice please. You see I have psoriatic arthritis and have never really come to terms with it.

My medication is administered every 8 weeks (Infliximab) this to be honest has given me some of my life back including much needed pain relief. However, I feel so low all of the time.

I am struggling at work and at home…

I know I need to come to terms with my situation but don’t know how…

Any help or advice much appreciated. If not, thanks for reading.

Comments

  • LignumVitae
    LignumVitae Member Posts: 1,972
    edited 30. Nov -1, 00:00
    Hi Invictus,

    I was going to welcome you but I see you have been here a while so hello from me instead, I don't think we've 'spoken' before. What exactly are you struggling with? Is it how to pace yourself and manage arthritis? How to get others on board? Or is it more about gaining some acceptance of the whole thing?

    Arthritis is an unwelcome beast who makes a place for itself in our lives entirely uninvited. I think many people have to go through a grieving process of the learning to live with a different life to the one they expected. I've had arthritis for 15 years or so and have had plenty of time to get used to it being here to stay. Still gets blooming frustrating at times. I don't ask 'why me?' anymore, particularly after reading the answer on here 'why not me?' I've also got much better at communicating to my loved ones, adjusting to doing things differently and generally being a member of the very special arthritis club.

    I hope that helps, maybe if you can explain which bits of arthritis in particular you are struggling with then people can help you with their tips and experiences. You aren't alone, we all struggle and need to reach out. This forum is a wonderful place to do that.

    LV
    Hey little fighter, things will get brighter
  • dibdab
    dibdab Member Posts: 1,498
    edited 30. Nov -1, 00:00
    Hi Invictus,

    I'm not sure I have any answers, but would echo LV about how important it is to be open with the important people in your life, they really can offer support and encouragement, and will slowly learn your limits and how bets to help you. As for work, have you spoken to Occupational Health, they are supportive in my experience, and can sometimes suggest ways of making the tough stuff a bit easier to cope with.

    Sorry I can't help, but I just wanted to send some understanding and support. Keep talking to the folks on here who will understand how you are feeling, most of us have struggles at one point or another with what we've had to let go, and what we've learned (with varying degrees of success) to live with.

    Deb xx
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, I remember your name and your situation. I too have PsA (and once had infliximab) but now take humira, injected methotrexate and sulphasalazine. I know it's working but not in the way that others would recognise.

    I suspect that your 'feeling low' maybe depression and that is of little wonder. It is so hard to live with this disease, its challenges, demands and discomfort. I plunged into a deep and very dark hole in April 2011 when I was diagnosed with OA in addition to the PsA. When I saw my GP and asked for a short course of anti-depressants her exact words were 'At long last.' I resented the implication, and was determined to stop them after three months, but my rheumatologist disagreed. I take a low daily dose and they help me cope better with the challenges, demands and discomfort.

    I wish things were other with me than they are but they are not. Coming to terms with any form of dross is far from easy, it takes time. When we gain arthritis of any kind we lose much and get little in return. That is a hard lesson and it's so unfair we have to be the ones to learn. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
    Hi Invictus,

    I don't know if I've met you before but hello. Coming to terms with arthritis is an on going process and after 6 years, I still have my wobbles. With regards to work, there are support systems in place. Do you know about Access to Work? https://www.gov.uk/access-to-work/overview It's a grant that pays for practical support to aid you at work. I don't know if you work for a large or small organisation but large ones often have a telephone or email counselling service. They offer support for all sorts of issues, not just work related.

    It would be useful to know exactly what you struggle with, is it more practical or emotional? I find this forum and other forums a really fantastic source of support on a practical and emotional level, so please use us whenever you need it.

    Hope to hear more from you. :)
  • Invictus
    Invictus Member Posts: 24
    edited 30. Nov -1, 00:00
    Thank you all for the encouraging words! I think one of my biggest issues is that the disease and the medication really takes it out of me. The infliximab makes me lethargic and the strain and stress of my job is hard going too!

    I find that my temperament can be 'short fused' which has been noticed and reported to managers at work. Since 2012 I have had two nervous breakdowns and spent almost 14 months on the sick. Not good really!

    I also have uveitis which only adds to the situation as my eye site is beginning to deteriorate. But hey, I still plod on regardless...
  • barbara12
    barbara12 Member Posts: 21,280
    edited 30. Nov -1, 00:00
    Hello I don't have PA but understand what you mean about not coming to terms and having a short fuse, I think we go through all sorts of feeling..talking to us will help...and being kind to yourself..maybe you need to chat to your GP about this...I did have ADs a few years ago and they really help me...I do wish you well
    Love
    Barbara