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I have just been to see my consultant (rheumatologist who I visit every 6 months. She's great).
I explained the problems I have with my pain meds (nausea and sleeping all morning) - see this FlashSays article about managing pain for more details... and I explained how I feel like I'm losing control of my life, that my health is getting worse, that I'm a rubbish wife, and that I can't do much without assistance anymore.
I was basically told that if we can stabilise things, that would be good (forget "getting better" for now) and that as the pain meds do help the pain I need to find a way to live with them.
And that I shouldn't be trying to work, and should maybe cut back on the volunteering I'm doing...
So it was a pretty depressing appointment, all things considered!
I want my life back.
I try to stay positive and keep fighting, but right now it is quite hard, and I feel I'm losing "me".
Apologies to anyone I've failed to meet up with, or moaned at. I'm not doing so well right now.
November 15 2011, 12:22:42 UTC 6 months ago
November 15 2011, 13:01:02 UTC 6 months ago
It's just so depressing when I stop and think!
Good to hear from you - thanks for commenting.
November 15 2011, 13:54:55 UTC 6 months ago
November 15 2011, 13:48:44 UTC 6 months ago
I took a long time to gain control of 'me' even though the pain I was feeling wasn't physical, so I understand your fear of losing the battle.
Hang on in there- in case anyone hasn't told you, you are a remarkable woman! :o)
November 16 2011, 13:08:11 UTC 6 months ago
When my doctor told me several years ago to stop trying to work, it was something of a relief (as I had been finding it very hard) but it was also scary — I already felt pretty useless, and not working made me feel even more useless at first. The time off work did give me the space to start getting other things more under control. But even though I'm working again now, and doing plenty of other things, I still struggle with the feeling that I'm not doing enough, that I'm still not good enough.
You already know this, but there are as many different ways to be a good partner as there are partnerships — there's no checklist of things that you must do to be a "good wife". Mike loves you, and you can trust him to carry on loving you.
November 17 2011, 13:15:54 UTC 6 months ago
That said, if the doctor says rest and stop trying to work, maybe rest-and-not-trying-to-work is the right thing to try. Stabilise at least means not-getting-worse.
November 18 2011, 11:35:12 UTC 6 months ago
Cutting back on work and volunteering is obviously problematical if you have a lot of your self-identity bound up into them, but it may release the energy to manage better outside of those. It's still a sacrifice, but maybe there's something to be gained.