Just living is a physical ordeal.

 

Lately I have been finding it difficult to be joyful. My fibromyalgia doesn't get better, my knees are paining me, my angina's worse and I have had bouts of asthma.

Sitting for long periods hurts my back, and my eyes and face and general skin is dry, but I need to keep the house warm as the cold winter temperatures aggravate everything.

I have tried returning to a more realistic sleeping schedule, but I find even if I go to bed at a reasonable hour, I still wake up a couple of hours later. Then I can't get back to sleep for another 4 or so hours. 

I am tired, people. Tired of all this pain. Trying to keep it all together. Trying to live a "normal" life. I mean taking a shower without assistance or cooking a meal from scratch or hanging out some washing should all be within the bounds of normality for a homemaker. Not so for me.

I wear tiredness like a heavy saggy wet cloak, and I never wake up refreshed. My circadian rhythm is all out of whack and I can't restore it. Through no choice of my own, I have become a night owl.

With Chris being ill with his heart failure, he doesn't sleep well either and sleeps sitting up. He starts off in bed, but graduates to his recliner armchair.

The fluid in his lungs makes him feel like he is drowning, so that necessitates sitting up to sleep. It. is. what. it. is... But I watch him struggling for breath and I feel that I am losing him by degrees...

I have thought about trying to be upbeat and falsely present myself as someone who is coping with all this, but if I did it would be a lie.

So apart from a nana nap later, I am planning to spend some time in prayer and worship. Hopefully, that will give me the strength to emotionally and spiritually rise above the physical ordeal just living creates.

No mojo with fibro

So leading up to Christmas, I had my 9 year old granddaughter Taylah, stay with us until Christmas Eve, when she would be taken home in plenty of time for Santa to come.

I promised Tay that we would make Christmas cookies make cubbies, play school, go swimming and have a play date with her cousins. 

Day one started out well and we played school, office workers and shop keepers. I showed Tay how to touch type, taught her a bit of Italian and French in a fun way and then I promptly ran out of spoons.

I simply had to give in to the pain and take some Tramadol to keep going. I made some lunch and felt like I might pass out. Dizziness assailed me and I felt vomity. Probably the Tramadol.

I had to explain to Tay that I love having her here, but am not well and I need to take a nana nap. She got a crash course in fibromyalgia and chronic fatigue. 

She had lost her paternal grandmother last week and was very anxious about me so I didn't want to frighten her too much, so I said that if I don't go to rest for an hour that I would not enjoy her stay because I would be cranky. If I went to bed just for an hour, I would enjoy it so much more, and so would she.

As she accepted this fact, she immediately bombarded me with "but I thought we were making cookies, playing out side and making a cubby house?" I told her we could do all that if I took a nap. She said OK then got her ipad out. I went to bed and allowed the Tramadol to do its magic. It didn't.

No, it didn't do anything except make me nauseous, even after a 20 minute nap. That was all I got. So, I got up, made us all a cup of tea and sat down with Chris to watch a video he wanted to show me.

Taylah pouted and demanded to make cookies, as I had had a nana nap. Groaning, I got up and started taking ingredients out to make the cookies. 

After that, I was too exhausted to clean the kitchen. I cooked dinner and then it was time for Tay to have her bath. That wasn't a big deal as she's nearly ten, but she wanted me to play MacDonalds with her, so I got some wooden spoons and plastic cups for her to play with. 

I sat on my shower stool and bought some Big Macs,"no pickles, no onion and a soft serve cone for my daughter." We blew bubbles with the Imperial Leather soap and I did what Fibromites do best: I tried to hide my pain and pretended to have a good time.

By 9 o'clock I insisted that Tay go to bed and I joined her. Before we went to sleep, she told me she missed her mother and wanted to go home.

In the morning, she assured me she loved being here and she loved me but wanted her mum. I told her I understood and that it was fine. We would take her home. She was humming to herself as she played teacher and when I went to the fridge, I found a love note from her to me.

I was glad as I worried she didn't stay with us longer because I was a boring old lady. And I fear I am. Cos everyone knows there's no mojo with fibro.