AS and work: how do you manage?

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Patients Ankylosing spondylitis

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Posted on

Hi,  I was wondering if any of you still work? I was diagnosed not that long ago. Lately I've been going through a bad flare up and I'm having a hard time keeping up with everything even though I'm still working from home.

I'm afraid that I'm not going to be able to keep up and I'm going to have to stop working. I really don't want to have to quit, my job is really important to me. Right now it's one of my only forms of social life since I life in a different city than my family and I don't have much energy anymore to go out (and I also don't want to risk getting the virus right now). And needless to mention I need the salary.

I guess I'm wondering if anyone else has been through this and if you have any advice on how to get through it?

Thanks!

Beginning of the discussion - 8/19/20

AS and work: how do you manage?

• Community manager
Posted on

@EmilyJP Hi EmilyJP, thank you for opening this discussion, let me tag some other members who may be able to discuss with you.

Hello members, how are you? Do you or did you work with AS? How did or does it affect you and your job? Do you have any advice for EmilyJP?
@zmgwedli@brownie17@Kmartin143@pnj0113@Mary1954@Shadora@Dyllan@Justmichelle91466@Jillybug@Jodyolson69@toniboroni123@Wiederich@DiannePunky@bhoney4829@Kaykayloveee@jford76@Claracaïl‍ 

Feel free to share and discuss here!

Take care,
Courtney

AS and work: how do you manage?


Posted on

The fatigue is really hitting me hard these days. I have been working from home since March, but also have two small children at home since that same time.  I have no idea how this process goes to its next phase. But I have very little strength left. My doctors doubled my dose of biologics a few months back, but I feel these days like my body only has enough energy/ spoons to do one thing. The choices among those things are:

1. do my job well

2. feed myself and my kids, and clean my house and make sure they have clean clothes 

3. take care of and teach my two children Bc schools are closed due to Covid

4.  exercise and see all doctors/ therapists, wellness, self-care

I literally can’t do these four things all at once. I can do maybe one of them.  It doesn't matter which one. No one is coming to do the other three no matter what I pick.  I have great doctors and have health insurance etc. but, I’m not improving. I’m faced with how fast I see it all going downhill and I wonder where is the template for what happens next is....  I live in the US where there are very little supports/safety net.  All the google-searching in the world and I can’t seem to turn up anything about where disabled people who have children can live in supportive housing, and all the searches say it takes three years to get approved for disability and many people die waiting to be approve.  I don’t even know who handles stuff like this, but I suspect in the US it’s just up to your family to step in and do for you if you happen to be lucky.  No one around me takes this seriously enough tp understand that every day all day is a huge struggle for me. Also, I’m the primary breadwinner. If I cant work how do I afford to feed my kids?  Why isn’t there a better blueprint of “What to do when your illness becomes greater than your responsibilities.”  

i’m sorry I cant be more helpful. I want you to know that I read your post and you are heard and understood. Sending hugs. 

AS and work: how do you manage?


Posted on

@DuchyCT Thank you for replying, it's good to know that I'm not alone! YES the spoon thing is definitely it! A friend just recently told me about it and it really explains it well.

I feel like I can only either a) keep working so I don't get fired or b) take care of myself, but not both. And I'm single and don't have kids! I can't imagine what you must be going through! I wish there was more support, it seems crazy to me that there's nothing. Our health system is so messed up... 

AS and work: how do you manage?


Posted on

I have had symptoms for 20+ years. But last 7-8 years has been extreme downhill for me. I just got diagnosed. Is there any treatment? I have lower-back pain. Groin pain. Occasional shoulder, chest, upper-back pain. I have no energy. Pain makes me not excited about anything. I was told I am depressed. Work is a struggle, funny that I actually love what I do. No one would understand why I am not excited about every little thing at work or social life.

Initially I was self medicating myself with advils for a couple of months and  I was doing well for a few months. Now I am getting worse. In last six years I have taken steroids a few times (I did pretty good at that time). I had uveitis 22 years back, then they came back in recent years. That's how I get diagnosed. 

Do people get better with treatment? I guess disability is not an option? 

AS and work: how do you manage?


Posted on

I continue to take jobs and work until I can’t anymore.  I’ve been terminated from 2 jobs because of this and that is a real source of depression for me. I try to be optimistic but who wants to keep getting fired?!! I’m tired of hearing “ your work performance is great but we need you here” I’ve applied for disability but was told by them that the process could take 9 months and I already know the pay isn’t good. I’m hoping the new treatment that I’m on and the steroid injections work wonders so I can apply to and complete the nursing program. I figure if I can work part-time as a nurse it could work since the pay is pretty good. There’s so many aspects of nursing and many of them won’t require me to be on my feet all day. We’ll see how it goes!!

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