Ideas for housework for Spoonies – Not all of these ideas will work for everyone, but it could lead to ideas on how to make things more manageable.
I’m not gonna lie – there are some mile markers in my birthday month – 4th is the date my brother passed away, 15th is my day, and the 21st is the day one of my best friends passed. Usually I am just barely getting through this month. No joy. No celebration of me really – not when I have these reminders of sadness.
This year feels a little different. I got through the 4th with just a few tears. I don’t feel as anxious about my day…but it’s not here yet.
I have to remember it’s about choosing my perspective. I’m working on it.
Fibromyalgia stole my life…at first, a little at a time. Looking back, I can now see the symptoms, sometimes years apart, appear and disappear.
About six years ago, when visiting my brother with pancreatic cancer, I had to get out of the house for a while. My brother needed rest and he felt like he had to entertain me. He didn’t of course, but I told him I’d make plans and would not be back until late, and to not worry about me – just rest.
I called my very good friend and we made plans to go to an old hangout for a few drinks and a little dancing. It was perfect. I got to give my brother a break, got to see my friend, and got to let my hair down. I loved my brother – he was my best friend, and although I was oldest, he was my older brother in how we treated each other. His situation was rough on me too…I was losing what I’d considered my only ‘real’ family.
The night out was perfect. I drank, I danced, I laughed! By the time I got back to the house and in the shower, I began to feel a fatigue in my legs I’d never felt before. I actually giggled to myself thinking it had been too long since having so much fun and thought a good night’s rest would cure it. I drank a bottle of water and laid down for the night.
2 pm the following day, my brother’s wife knocked on the bedroom door. I thought it was much earlier, maybe 7 am – I didn’t think it was so late and it felt like I hadn’t slept all night.
My sister-in-law peeked in and asked if I was ok. I sat up in the bed and asked if my brother was up. She said he was and has been waiting for me to get up. I smiled, thinking how endearing my brother could be. He was excited I was there, despite how awful his life was turning out.
I told her I’d be there in a few minutes.
I had a hard time moving my legs to the side of the bed and the skin on top of my legs were on fire and itching at the same time. I pulled the covers back and OMG! My thighs were swollen 3x their normal size and the skin on the top of my thighs looked paper thin and as if the skin was about to split open.
Now the pain. My brain had registered what was going on…something very very wrong.
I ended up in the nearest ER…and, as what I now see as the usual, they could not explain what was happening. I ended up on pain pills and in bed the rest of my visit. I made sure I spent as much of my bed time snuggled next to my brother, sometimes holding him while he cried. He was in bad shape at times and wouldn’t let anyone hear of it from him, but I knew. We talked for hours, watched his favorite shows, but most of all, we both had to rest but made the best of it.
Looking back now, I know it’s one of the first major episodes of fibromyalgia – or whatever doctors can’t figure out what I have.
Just one example of my symptoms before I was positive something was seriously ‘wrong’ with me.
Changing the subject a bit, away from my precious brother who’s now passed, I turn your attention to me, this week.
With fibromyalgia, bursitis pain in the shoulders is common. Two years ago, it was in my shoulders and hips. It was the worst right before my Fibro diagnosis. I’ve battled it on and off since then, and recently I had a minor flare with my shoulders. I got through it of course and shrugged it off the best I could. Worse things were going on in my body (more on that another time).
Last Sunday night I’d woke up from a sound sleep with the worst burning, searing pain in my right shoulder. I shot up out of bed and tried to move it around and discovered I would not raise my arm very high without excruciating pain. Not good. I put my ever-ready heating pad on my shoulder, laid flat on my back, and hoped the heat would mask my pain long enough to get back to sleep.
No go. The pain was so bad…no position or heat helped. I actually felt better standing up so my arm could hang down. So there I was in the middle of the night, writhing in pain, unable to lay down, pacing around my bedroom in pain.
I was up all night tossing the idea of an ER visit around and talked myself out of it a few times, rationalizing that I could go to minor emergency in the morning. At about 6 am I said HELL NO! I NEED RELIEF! I drove myself to the emergency room.
Bottom line to that visit: x-Ray, no broken bones, a sling, pain RX, and a referral to an ortho doctor.
I researched the ortho doc (of course) and he is well known in his field, and appears was married because his marriage announcement (came up in Google search) was in the New York Times. I admit it…I read it..I was a little jealous. He is good looking! I digress.
When he walked in, he introduced himself and asked questions then did a very quick ‘raise your arms’ examination. Very quick.
He is convinced I have Adhesive capsulitis of shoulder (Also known as frozen shoulder).
Basically, between my diabetes and the possibility of me having something autoimmune (it’s an ongoing investigation because no one knows what I have), I likely have scar tissue just randomly growing in my shoulder, limiting the pathway for the muscles and tendons in my shoulder from free motion. Let me tell you – this pain sucks!
6-8 weeks of anti-inflammatory meds and pain pills and physical therapy 2xs a week. If all of that is unsuccessful, I’d go under general anesthesia and the doc would move my arm in ways that would hopefully break up the adhesions. If that isn’t successful, surgery to remove adhesions is next.
Adhesions. Yeah. I know those. I have abdominal adhesions from multiple endometriosis surgeries (years ago). Adhesions account for ten of the last 15 years of my pain. Hell yeah I know adhesions. Again, I digress.
So, yet one more thing to deal with. God bless pain medication.
I hope people know this when dealing with me…
…and as I read it, I realize I have to learn this behavior for others.
If someone you love has been diagnosed with fibromyalgia, you might feel helpless, but you don’t have to be. Friends play an essential role in helping those who live with a chronic illness. It’s important that people with fibromyalgia feel truly cared about and that they are not forgotten, many people with this invisible illness […]