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A myRAteam Member asked a question 💭
Patchogue, NY

I'm wondering as a spouse, what should I prepare myself for. I haven't been to any of the dr. appts, so I feel like I'm in the dark. Is this disease progressive? How should I be planning on changing my life?

April 30, 2019
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A myRAteam Member

You may need to rethink leisure pursuits. For example, my partner adores skiing and has suggested a couple of times that he would like a skiing holiday. For me, that would be a terrible holiday. My knees are far too weak and I would be terrified of falling down and hurting my (already painful) joints. I would not object to him going alone or with a friend though.

As he is not really a fan of beach holidays either we usually compromise and enjoy city breaks. If it all gets too much for me, I can rest for a while in a cafe while he takes in the sights, although I try to keep up as much as possible.

Really it’s all about respecting the other person. Just because I can’t do something, it doesn’t mean he shouldn’t either. At the same time, he wouldn’t push me to do things that I’m not comfortable with.

The other thing which is highly relevant is your working life. Many RA sufferers find that they need to reduce their hours or give up work all together at some point. Obviously this will depend on what sort of job you have.

A person who lays carpets or paint houses for a living will find that this is greatly impacted by RA. I myself work in retail and at best I can say ‘I get through my shift’. I now find work is a big challenge and I no longer enjoy it.

My house is not as tidy as it once was, I feel guilty when I hand over jobs to my partner that I would have normally taken care of. A day off work is now a day of ‘recovering’ instead of a day where I would clean my car, mow the lawn, clean the windows.

At the end of the day, we didn’t ask for this, we can’t cure it and so we have to accept that our lives have changed and all we can do is work with our doctors/ rheumatologist to manage it as best we can.

May 1, 2019
A myRAteam Member

First I would like to applaud you on your question as it shows a genuine concern for your spouse. Support from our loved ones is a huge factor I think. I agree with @A myRAteam Member about the exhaustion. It's on a level I would never have dreamed possible. You can be fine one moment and the next you just don't think you even have the energy to blink your eyes. The switch from feeling good to horrid is a fast change. Unfortunately it is progressive but some people do get a type of remission from the disease but I think they can still exhibit symptoms while in remission. The pain is horrid but as time has gone on I have found a greater tolerance for the depth of pain. We can break bones and think it's a flare of our disease as I have found out with a broken foot 2 times. Every person is as different as a snowflake dealing with this disease and the symptoms. I hope you can keep the communication between you strong and you have a depth of understanding and listening ability. Have them join on here also as it's a fantastic site for those of us suffering from RA. I hope some of this helps. All my best.

April 30, 2019
A myRAteam Member

I agree with Carol, just to add a couple of things. Depression is bad too, R A can affect every organ in your body, eyes, skin, lungs, heart . Research this disease. it doesn't always happen but it can.

April 30, 2019
A myRAteam Member

Go to appointments if you're invited. Read up on you spouse's disease,ask your spouse about what information and instructions that have been given by the doctor. It so sensitive and supportive of you to ask these questions now.

May 16, 2019
A myRAteam Member

So very eloquently written. Thank you.

May 9, 2019

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