Working with AS
How do you find the world of work whilst managing the condition?
I'm a teacher in the UK and the fatigue after a day at school is unreal. I work full time and always have.
I've had AS since the age of 15 so I'm unaware of what a busy life would be like without it. I'm on Cimzia and I'm still unsure as to how I feel. I haven't had any major flares recently although, I don't feel great at all.
During these times, my rheumatologist reminds me that 'I'm not in the same position as last year and that pain is to be expected as we get older.'
Quite often, I feel as though I cannot go on with this pace of life. But ultimately, I refuse to let the condition 'control me'
I guess...I'm the biggest control freak...
I hate going to bed 'nornal' and waking up to a living nightmare...
realising that I can no longer use my legs or see- so whilst I'm functioning I live life to the absolute fullest.
I'm seeking guidance on how you manage your condition alongside work and family.
Over 20 years in and I still haven't managed it..
If you've made it this far, I appreciate you reading my waffle and thank you for any nuggets of gold you can give.
Over time and before my diagnosis, I changed jobs because of the pain and fatigue. I went from a highly physically demanding job to a much more sedentary job. I think we need to do what we can and make accommodations as needed. I was having such a hard time sitting or standing for a long time. I bought a standing desk so I can change my position more frequently. My husband does more home chores than I do now but we seem to be managing that ok. I feel bad but he does not. He says it’s his way of helping. I appreciate that!
I did that for as long as I could... But the only "final solution" was to retire, as soon as I could afford to do so (20 years ago!). I've never looked back. Working, even at a not particularly physically demanding job, just got too hard.
The worst part was trying to keep up with the schedules. I just couldn't move as quickly nor as "on the clock" as was needed. Being late to everything was not acceptable. Taking 2-3 hours to get moving in the morning, especially after a chronically rocky night's sleep, was not compatible with the working world. And drugs didn't help,either: even if they blunted the pain (some), their inevitable side-effects made working just as hard - or harder - than being in constant pain. Also, no injections, ablations, physical therapies, nor any other procedures made for any lasting improvement. This disease is really disabling, in the true sense of the word.
It's simply impossible to function adequately when everything always hurts.
Thanks for sharing what works for you. Making accommodations and adjustments to accommodate the challenges posed by chronic illness, such as ankylosing spondylitis (AS), is vital for maintaining quality of life. It's important to listen to your body and make changes that support your well-being. It seems you have tapped into this notion and have made some changes. Struggling with sitting or standing for extended periods of time can be especially difficult, as it can impact various aspects of daily life, from work to leisure activities. Making modifications to your environment, such as using ergonomic furniture or taking regular breaks to stretch and move around, can help alleviate discomfort and reduce strain on your body, making it easier to get through the day. We hope you are managing well and wish you the best during 2024. Rebecca (community moderator)
I’m a teacher as well and recently diagnosed with bamboo spine AS So I completely appreciate where you’re coming from. My biggest problem is the pain is constant and I find after teaching I am completely exhausted and need to sleep for several hours. Grading is the worst I can’t sit and I can’t stand someone recently suggested I try a standing chair. I do have a sitting/standing desk at least, that helps a lot. At least when I’m teaching my classes because I love what I’m doing I get into it but after that it’s just exhaustion. good luck
Your welcome , I noticed you got diagnosed at age 15 same as me so we may of had A.S for a similar amount of time .
I can totally understand how you feel about doing the guilty feeling because I do remember feeling like that when I decided to return to working part time . But then in some ways having A.S and it being as it is some of my choice was naturally taken away from me . For me it got to the point where I thought my body needed some TLC and I had to roll with that. Like you say you will make the right decision for you when you feel ready too . All I can say is not to be hard on your self , you didn’t ask to have A.S , so it’s now about keeping your self the best you can in a challenging situation living with a auto immune condition .
Blessings and best wishes to you .
