Depressed caregiver

PMR (Polymyalgia Rheumatica) is a muscle disorder that is different for different people. Mostly, for me I noticed it when I could not turn over in bed to get out of bed in the morning, and I had so much swelling in my temple by night time that I had to remove my glasses. That's the GCA or Giant Cell Arteritis part. Many of us who have this end up losing our eye sight. For this diagnosis it's prednisone at high dosages to start, and for a while I was on high doses of prednisone. then learning how to taper off of the prednisone. I've had it for 5 years, and some people can go into remission about the 5th years, but my Rheumy didn't want me to get my hopes up, and said clearly that it doesn't happen for everyone. The goal is to get off of the prednisone, and after 5 years I've gone from as high as 60 mg. to now at 7 1/2 mg. When I first started out my primary care doc was unable to figure it out even after lots of blood work. Eventually they wouldn't even see me because I became a P-I-T-A. I was scared to death. I changed to a lovely doc who then reduced her hours, and I had trouble getting appt. on the day she was there. Then I found a wonderful young brilliant DO who helped me so much, and I got a not so good Rheumy, and then finally the best one in the world. I spent years in my recliner, slept in it, and sat in it daily. Finally I began to give up on some meds, and eventually the brain fog lifted. I still have a messed up body, but now my mental capacity is very clear, and I began to take back my life. I've also had two back surgeries, and I have titanium screws in my back that sort of hold me together. But my mobility is compromised. My husband was a saint and took care of me. Now we're back to taking care of each other. In the springtime we gave up our king sized beds, because at our ages we could conceivably need bed care at some point, so we got adjustable twin beds, (thanks Joe Biden for the stimulus check) and I can now sleep in the next bed to him, but it's better than sleeping in that damned chair. sorry about that, but I came to hate my chair. My sleep pattern was the worst part. I could only sleep about 2 hours a night. My bed raises both at the head and the foot, and last night I slept 6 1/2 hours. Some nights I can get 8 hours, but mostly about 5 1/2. I'm working my way back up. When I began to get rid of some of my meds my brain fog lifted. So now I'm determined to squeeze out every nano second doing something that I love. My hand is pretty arthritic, but I can work around it a bit. My mobility is poor, but I manage to do mostly what I want to do with a clearer head. these Illnesses are not for sissies. 🤪

Thanks for explaining your PMR and GCA. My spouse had temporal arterial biopsies trying to diagnose why her inflammatory markers were so high last summer. It was negative and further scans finally showed the renal tumor.

You have quite a story and I am impressed with your attitude and strength. My spouse has nuts and bolts in her back too. I've been wondering about those adjustable beds..... Her sternal pain seems to be improving a lot this week, but the back pain is chronic for sure.

Thanks for sharing.

The adjustable bed didn't work immediately.My husband still doesn't use his, but since I was getting one he agreed to try it, and who knows. He might need it in the future. At first I was able to do about 2 hrs. and then back to my chair. Then maybe 3 hrs. but now I sleep pretty consistently at least 5 1/2 hrs. Last night I slept 7 1/2. I used to be a great sleeper at night, but for about 4 1/2 years I was getting by with 2 hrs. and we really need that REM sleep to get rested. I was groggy all of the time. My mental capacity was dreary. Our beds were a bit more than $1,000 each, and I didn't want to take that money from savings only to find out that they didn't help. At first after we got them I felt like it was a mistake, but little by little they began to give me a bit more sleep, until now I feel like it is sufficient. I don't know if they can be rented to test it out, at one of those rental places, but it has made a huge difference in my sleep patterns. And we just got the basic ones. Good luck to your wife.

Also my husband likes his new bed, he just uses it flat. Recently I've been sleeping 3/4 of the night with it raised, then toward morning I lower mine, and sleep an hour or so flat, but I could never sleep the whole night like that. At least we're in the same room.

Thanks for the feedback on the beds. We are just paying for a walk-in shower, so it may be a while! We also winter in AZ, so have 2 abodes to consider!! ( Hopefully she can travel down there this winter. We need the socializing we get there.)

@deek15redpeppers I am getting a walk in shower in the next few weeks. Previous owners had a third bedroom remodeled into a large master bath, with soaking tub. I cannot get into that tub, and can barely get into the original cast iron tub in the other bathroom. We are taking out the fancy fiberglass tub to put in a low threshold shower. I'll wager your spouse will look forward to that better accessibility!
Ginger

Thank you for letting me know that, even at my age, there are other people who cry watching movies. I just finished watching "Young Patton" and I cried, I cried to the very end.

Really gets it out doesn't it.

The arts effect us all differently! I love it when I cry at movies, or the person I am with cries. I discovered that my current husband is really an emotional person overall, even though he is very left brained. He never did much with the arts and when in our early dating years, we went to a movie, and I heard him sniffling! I saw he was crying. I was not effected in the same way, but it gave me insighjt into his emotions and brain! I started to take him with me and helped him enjoy his time staring at a a painting in a gallery, listening to music, etc. that provoked emotion for him. It reminded me of our differences, but also his empathy. As humans we really share so much, but frequently ignore it, or don't talk about it. The Arts, like moves, help us with those unsaid emotions! During Covid I have missed going to movies in a theater. Watching/listening to the movie and feeling the wonder of shared emotions, laughter, silent, gasps, tears make movies a wonderful experience if we "let it". If you have hearing issues, 99% of theaters now have closed caption devices for you to use. Keep enjoying those movies, at home, on your PC, etc. Thanks for sharing!

Ever since my wife passed away I cry far more often. Plus now I can't watch a Disney movie without crying! Our grandsons thought I was weird for a bit, but now just laugh and say 'I wonder when Gramps will start to cry in this one?'