I used to be a IT Professional getting paid the big bucks, but with AS now I can't sit down for that long without getting pain in my sacral joint and shoulders. Not to mention the brain fog which also kicks in too.
What I do now, is I am a full time carer. I cook and prepare my client & their child's meals to cater for their special diet and extremely low budget. I also clean their house, do their washing and folding clothes. Oh and not to forget the shopping.
I do this around my back and fatigue limitations. I cook or wash up for 15min at a time, because my mid-back muscles start spasming after that time. But I flip to other house work activities for 15min each and rest every 45min with the heat pack. I limit walking activities (like shopping) to an hour at most, because after that time my hips, knees, back, shoulders and kneck start hurting (& that is only from walking..not from lifting).
I spread the washing & folding over the week, and primarily use clothes racks to hang clothes, as my muscles hurt even more when I lift items above shoulder height.
When cleaning the bath or shower I still limit it to 15min and try to keep the scrubbing to a minimum, by doing it each week, because kneeling or bending over for anything over 5min stiffens my muscles & joints, or threatens to put out my lower back. The later also goes for vacuuming.
But I am beginning to enjoy cleaning now. It is becoming a bit of a meditation. Providing I don't over do it.
After 2-3hrs of chores (incl driving chores), my mind and body tells me that's enough, and I have to rest/sleep. So I can then be able to tackle the afternoon/evening chores, incl picking up child and preparing & cooking evening meal.
Now I have to focus on fitting my client's home therapy exercise into their schedules. We already fit in the semi-regular trips to GP and specialists, but the doctors want to see more building of the supporting muscles. I agree.
So this is my new job. I miss my old one, the money, and using my years of experience and my brain. But this is now more important. As I want my child & I to be as healthy, movable with low/no pain as we can with our Arthritis type disease, for the many more years that we have. (I am only 44 and my child who is has the juvinile signs of AS is only 13). I was already my child's carer, now I am my own.
P.s. after writing this, Meghan Trainor & John Legend's song "Like I am going to Lose you" came on. Which made me think of what we ALL need to do with our health/bodies: love them like we are going to lose them; don't take them for granted; "Use what we got, before it's all gone, 'cause no, we're not promised tomorrow".