Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Feeling a bit lost

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

Hello, Joe:


Regret most of us have spun out of control at times due to AS. Problem has always been that we continue making the same choices expecting a different outcome.

AS should be incentive enough to try something quite radical; if You had, starting when You joined in February, 2011, Your story might be very different by now!

I can only with deliberate sincerity wish You the best of luck, and hope for You renewed
HEALTH,
John

Hi Joe

sorry to hear that things are not working out for you I felt the same way with me leaving my Job 2.5 years ago with my health just spirally down hill, but during that time at home the pain and frustration had me really down and out but I decided to use the time and research research research. I was very negative at first with me hating "normal" people and everyone around had me leaning towards death metal and I'm the Coldplay/Daughtry type of guy....

I was in tremendous amount of pain from Dec-March until I discovered Apple Cider Vinegar and how to take it (See the thread in the No-starch diet section of this website). This has currently brought my pain down extremely low but you have to be disciplined (NO SUGARS) and learn how much ACV to take.

2.5 years of searching have lead me to the above which works well for me currently and don't forget No-Starch will also work but I found it extremely difficult to follow because of the fatigue and feeling starved. Now that I think of the NSD, Sugar must also be excluded when doing the diet since it had such a big impact on my pain levels testing ACV.

I wish you the very best of luck

Lee

hey Joeseph,
we here totally understand your situation, sometimes we are damned if we do and damned if we don't. Your health is your wealth, I am poor now, had a good job, a family, and all the trimmings of a middle class life, the A.S. took that away from me piece by piece, and most of us here have lost wages, and spent a lot of money fighting it. So yes having it is an expensive must. I was disabled before I ever even had a job, but I did manage to work until age 48. keep taking that much medication and you will wind up with gastritis like I did, and then it will go from bad to worse. if you have A.S. and your not depressed, that means your mentally ill. I would find it odd to see someone suffer for a lifetime and not feel depressed along the way. I would suggest you keep working part time if your able, even if the financial reward is questionable. in the end the disease will decide for you. If I had any advice, it would be this, be proud of who you are, regardless. People who know you, know you suffer, even though others cant feel the severity. I had to come to realize how those around me viewed me. when I became disabled permanently some people commented I was disabled before I became disabled. All anyone, and everyone can do in life is fight a good fight. I realize my life will be shortened due to A.S. and my quality of life isn't all that, but the quality of my spirit kicks butt. These days I live a good life still, and even though it may not seem glorious, its my life, and I am thankful to have lived it. the best thing you can achieve in this life is peace. know this, people love you regardless of what you may or may not accomplish, even if you had lots of money, you would still have the A.S. monkey riding your back, then you would just be the old rich guy with a limp. so in the end all that matters is you understand that the period between stabbing shots of pain is pretty good. The people who know you love you more than you realize, and and some ways respect you, in a different way. I for one respect the guy in the wheelchair for fighting his good fight.But seriously, those are too many pain pills mr. If they were working, you would not need 6 a day. I caution you again, don't sacrifice your guts in the name of a job.

I just wanted to add one thing, I started to learn a new hobby. I have always wanted to play a guitar so with absolutely no musical talent, I started focusing on learning it like it is my new job. my fingers got sore and my pains didn't stop but after a few months you start to see the benefits of the work, some people can use this as a therapy. and everyone enjoys a little guitar music. I used to work with a guy who would say " that sounds like a worthy endeavor " if you study the art of bonsai you will see out lives are much like that of the bonzia, we get cut, we get hurt, we heal, we grow into something even more beautiful.

wise words elmerfudd, unfortunately made my day more depressing.

Joe

AS does a lot of collateral damage. Perhaps the hardest part of battling it is balancing pushing through the pain to keep among the living and not pushing too hard so that we keep living without causing more pain

Everyone finds a different balance. For me I found not pushing caused me to isolate and not live a "normal" life

I learned to redefine normal and rest when the pain was too much. Mostly I opted to keep pushing through the pain to keep doing things I thought I couldn't do. Made a lot of mistakes along the way but nearly 40 years into this battle I have a great wife 3 awesome daughters and more than my fair share of pain. My life is great but folks looking at me from the outside see and have seen a vent slow moving body since my late 20's

Right now you seem under a lot of pressure from the pain and other things right now. Maybe it's not the perfect time to make any life altering decisions. Somehow if you go slow and keep fighting, expecting more --- slowly it happens

I am not particularly tough or wise but somehow like all the good folks here I have waded step by step tis good life. The first step is knowing and believing you can too. Don't let go of hope even on says where AS lies to you and says it's hopeless. It isn't

Hey Joseph
Reading your post reminded me of me a few years ago.

You sound really really depressed. I have now learnt that this is a serious no no with this condition. Depression lowers your immune system and you are more easily attacked by AS.
I went to a psychologist and it worked for me. I only went to 4 sessions, it was expensive but it worked along with other things... I was trying to be happy. I gave up smoking, changed medication cause it wasn't working.
Long story short, 3 months later my pain started reducing, got a girlfriend, had a kid, lost my job (cutbacks), started a business, got divorced, business is flying (good cash), joint custody of my son (great fellow), have a great girlfriend now and haven't any pain in 9 years. I'm 42. My life has ups and downs and I love it...
1 trick I learnt is that anything that causes me pain I stop the activity or give it up immediately. My physio taught me that. I thought I would miss them but actually I don't and I don't miss pain either.

When I was your age I really felt the same as you, I really did but now I know there is light at the end of the tunnel for you. My question is can you see it and can you go towards it? If you can't go and talk to someone (possibly a psychologist), a physio a masseur... I had a team of people who all helped to put me back on the road to health and happiness.

What's the future? I don't know, maybe I'll have pains tomorrow, maybe not, I'm not waiting around, I just want to live my life.
At the moment I am organizing a trip for a safari in the southern part of Africa this summer.

If I were you I would hang in there and try to get happy.

I have been rabbiting on, I know but I hope something I have said helps.

So Joe- how are you today?

Hi all,

Just thought I'd update you on how I am. I'm feeling a little better today, not in as much pain but I've taken some tramadol. I am seeing my rheumy tomorrow and I have spoken to my boss in work who was very supportive. I think for now I am.not going to make a decision about my job and focus on doing more exercise etc. I think I need to find more hobbies as was suggested.

I went for bloods yesterday and ESR was around what it normally is but the CRP is usually in the 30s and the highest its ever been is 39. Yesterday it was 80, in a way I was happy as when I see the doctors tomorrow they may appreciate the pain I have been in lately.

I am going away a week today with 3 of my family on a road trip to Switzerland to watch football. At first I was really worried as it is an 18 hour trip, but I am now feeling more optimistic as my unlce who.is driving has told me we can stop regularly to stretch our legs, I'm thinking every 3 hours. When I am feeling down I feel as if I am bothering people and disrupting how they would travel without me. But my uncle really wants me to come along and he doesn't mind, he recvomemded I get a massage on my legs before we travel to loosen up stiff muscles, little things like that matter to me as it shows he is thinking how I will be.

I read through all of the above posts and I am genuienly greatful for the effort people went to, to respond. I have taken on board the wise words.

Thank you

Joe