a week with ME … Q2

I know I keep my ‘fortnightly catch up …’ journal posts, but this blog post is a more in depth journal bog post about living with ME.

   . . .   a   w e e k   w i t h   M E   . . .   

day 1: Monday … 

Some days these are my views all day …

day 2: Tuesday … 

Today I woke with a major migraine. Full on. Bloody awful.

I woke at 04:00, in agony and feeling very nauseous too. I got my migraine hat, one syndol and one cocodamol, and went back to sleep.

I woke again at 08:00, still extremely unwell. So I got a new migraine hat, and took three aspirin, and went back to sleep.

I woke again at 08:20, still seriously unwell. I got a new migraine hat, and went downstairs. Closed all the blinds and opened the patio doors. I can’t take my next pain medication until 09:15.

At 09:15 I took two cocodamol and closed the patio doors and went back to bed. I slept fitfully until 12:00.

I have my Yorkshire Fatigue Clinic Assessment today at 13:00. So I came downstairs, plugged my iPad in to charge. Got another migraine hat, and took more three aspirin. I made a latte. Reopened the patio doors but left the blinds closed. I sat peacefully trying to feel ok.

The appointment was interesting and hard and I went back to bed for the rest of the day after it was over. Only waking to take pain medications and get new migraine hat. You can read about it by going to ‘my healing journey …’ blog post.

day 3: Wednesday … 

Other days this is my view …

day 4: Thursday … 

I woke at 06:15 but couldn’t take my pain medication until 07:30 so I got ice and tried to chill.

My headache wasn’t too bad but the pain in my back, especially my upper back, was awful. It felt like my ribs were grating on each other and pinching the muscles in between. Even, after taking my pain medication my upper back continued to hurt so much.

I spent the whole day lay flat and took pain medications all day but still spent the day in pain.

day 5: Friday … 

I’ve not had a bath in over a week and I’ve not washed my hair in twice that time. So today it’s become non negotiable.

I got up, ran the bath, and got straight into it. If I don’t do this and I go downstairs first, then it becomes highly likely that I won’t attempt the stairs again until bedtime.

As always happens when I push myself, by the time I got to the end of the bath and drying myself, I was crying floods of heartbreaking tears. It’s just so difficult to explain. But how can having a bath be so difficult and exhausting.

There’s nothing as nice as cleanliness. Clean hair, body and PJs.

I lay on the settee for the rest of the day.

I didn’t eat or drink until 18:00 when the husband made my tea for me.

We watch an hour of TV.

And that was it. My day. And tomorrow I’ll probably feel dreadful because I always do the day after a bath.

day 6: Saturday … 

Other days I get to go out in the car …

day 7: Sunday … 

Today we went for a drive to Keswick and had a costa takeout in the car … this is the first Costa I’ve had in over a year and a half, I used to have one weekly.

what kind of a week was this …

The week is again pretty typical. However, going out for a drive to Keswick and getting a costa was a real treat. When you’ve been stuck in the house, lay in a darkened room for so much of your time that when you see the hills and the greenery you get an overwhelming feeling of ‘gratefulness to be alive’. Yes so thing as simple as a little drive out is wonderful.

follow up …

These regular blog posts, with deadlines are too difficult for me to sustain. I may not carry on with this series …

a week with ME … series schedule (March, June, September, December, to be posted either end of the corresponding month or at the beginning of the following month).

Let me know below what you think …

 fragmented.ME xXx