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Mum has admitted to me that this means she gets away from the pain. She is on morphine, which I know would make her drowsy, but she has been on this a long time, and her being in bed has been going on over a few months now. My dad looks after her, and it devistates me how things have turned out for them. I feel frustrated as I can't do anything to help them get out and about a bit more. Is anyone else experiencing this?
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Members deeply empathized with a woman whose mother sleeps most of the day to escape severe spondylitis pain, sharing that exhaustion,... Read more
Sorry I couldn’t be of more assistance. I can see why she’d want to sleep to get a break from the pain. My other concern, is she experiencing depression? I do & it also makes me sleep more during the day.
I hope things improve for the 3 of you. 💗💗💗
Is she sleeping @ night? Many of us suffer with insomnia. There's also the fatigue that AS causes. Usually I feel wiped out by 3pm.
Hi DonnaMcDowell
This is a disease. I didn't realise realise that until just days ago. I thought all this was result of injuries. I've been "doing this mess" for 30 years. Dr.s don't like to listen. 2 years ago I reached my max utter inability to continue. I fell on the bed and didn'come too" for 3 months. When I did. " wake up" I told my son to make sure I go to Dr. (i thought I was sleeping on my feet, just needing more rest.) When I did see the Dr. I told him I desperately need to get back to work. He pit me on something to relieve me but it made me sleep all day. He asked me if there is a problem with that! Dr.s know, but don't say whats going on. This is an invisible disease. It is also a spiral downward no matter how hard you try to go on. Morning sun in the fist hour awake is good for us. Help her get out there. Sit with her. Talk with her. Learn from her. Remember the best parts of childhood and tell her how you are duplicating that with your kids or using her lessons in your life. Let her know her valliant efforts to go on were not for gnaught. She will keep trying.
Hope this helps...
Yes, I'm down every other day. Sometimes I get two days up, then two days down. My life is spinning out of control but I noticed it's less pain if I am moving around but not too much. Either way my concern is the fast loss of muscle.. I'm growing weaker very fast. My quality of life is nearly gone. I'm fighting this but as you mother..this sadly is inevitable at some point. I pray there is some way she can get help with the pain and live a bit instead of being bedridden. It's not a choice when the pain is so intense. All we want is relief. It's insane pain. My heart and prayers to her.
Yes, she's sleeping at night. But she watches TV until about 1.30. thank you for your reply xx
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