Hi all,

Just wanted to come online to post how I've been lately.

It's almost 7:30am and I have had approx 5 hours sleep, I have been awake since about 5:30. I can not get back to sleep as my back, neck, legs, and even my stomach is giving me pain today.

I've been diagnosed now for about 12 years and for the last 6 months I've been taking humira. I have leant to accept that my back will never be flexible and I am 31 and was told that I have the back of an 80 year old which is a bit depressing.

About a month ago I had a really bad flare up which mainly affected all of my legs, my shoulders and my back. Currently I take the humira on its own an ibuprofen as and when for pain relief, but with this flare up ibuprofen didn't make any difference at all. I was prescribed Tramadol and I had to take 6 tablets to ease the pain each day. I was also smoking cannabis to help with the pain, it did help, but sometimes I felt it made me more aware of the pain. I work in admin for the NHS and I have just returned to work after 4 weeks off, I only work 26 hours per week, 3 and a half days which is enough for me. I was convinced to go back to work by a family member as they thought it was best for my mental health, but I have only been back for a few days and I feel I may have come back too early. I am really struggling to walk, and as I am working at a computer desk when I have been sitting for an hour or so, if I need to get up to goto the printer or the toilet I feel I have to psych myself up as I know it is going to be painful. I feel like my legs are giving up on me and I have to use my upper body to push myself up.

Lately I've been feeling really down (not sure if this is making my AS worse) and hopeless, I've been thinking about the direction my life is heading in and it is nowhere near where I want to be. I see all my friends and family progressing well with their careers and starting families of their own and I'd be a liar if I said I wasn't a little envious. I'd love a successful job and to have lots of money but lately I've been thinking differently. Currently I earn less than what someone who works full time on minimum wage earns, which I find to be a little insulting as there is a lot of responsibility with my job. Lately I've been thinking I'd rather have nothing at all and have good health (or the best it can be with AS).

While I was off work sick for 4 weeks, I was seriously considering leaving my job which I've been in for about a year (I have worked for the NHS for 5 years) and living off benefits. I don't want to do this because I am a scrounger but because I want to dedicate all of my time to trying to be "normal" again. I think it is going to take me 6-12 months to get to a place where I will feel happy again. My routine for the last year or so has been eat, sleep, go to work and repeat, and I have little interest in any hobbies. I have a gambling problem which I have managed to get a hold of over the last 2 months, I think while I was gambling and getting the rush everyday this was keeping me going in life. Now that I have stopped I literally do not have any interests, and my AS seems to get in the way of everything. It has made me anxious and I overthink and evaluate everything before I do it. I am going on a stag do with my cousin in 3 weeks and I genuinely don't want to go, I worry about things like I won't be able to keep up and what if I need a no. 2 as I can not clean myself.

I just feel lost at the moment and don't know what to do with myself, should I plod along with my life as it is and get unhappier each day? Or should I make a drastic change, quit my job and put 100% of my attentions to getting as healthy as I can? I'd love to stay in my job and get myself fitter, the problem is I work Mon-Thursday (half day Thurs) and the days I work I am exhausted and sometimes go to bed as soon as I get home. When I have finished work for the week I'm usually playing catch up with my sleep and don't have much energy. If I did quit my job, financially it would not make a great difference, I think I may be about £50-£100 a week worse off which I could live with as I don't have many hobbies. I just feel like I need to kick start my life again and I don't feel like I can do it while I have work commitments.

I am going to call my rheumatologist today and see if I can get my appointment brought forward and let him know how I have been feeling, but I genuinely am not coping with life and feel like drastic changes must be made. Some people I know have called me lazy in the past but I think I have been suffering with depression and fatigue for years and just ignored it.

In an ideal world I would love to come up with a regime that would get me back to the best possible health, and in the future get back to work, possibly being self employed. I'm a bit afraid of making the decision though, and I get mixed messages from my family and friends, some say leave and get yourself back to your best and others say, don't leave your job it's a good job (although it bores me to death).

Thanks for reading, it's good to get it off my chest how I feel

Joe