Tuesday, 14 May 2019

One Second Every Day - May: Week 2

Monday 6th May

This week is M.E. Awareness Week.
Had Bluebird 11am-1pm. No been the best today. Had a few seizures and falls and been feeling quite tired. Spent the day on the sofa watching TV and blogging and trying to rest as much as possible. I'm now ready to settle down to bed.

Tuesday 7th May

Not much of an exciting day. Had an acupuncture appointment this afternoon and spent most of the day on the sofa as usual. I also spent some time in my room on doing a bit of my college work.

Wednesday 8th May

Bad M.E. flare day. I really struggled to drag myself out of bed this morning and I've felt utterly exhausted and brain fogged all day and I just laid on the sofa. I had a ½ Bluebird call which was I was thankful for on a day like today. I'm now just about to snuggle into bed for an early night.

Thursday 9th May

Had Bluebird then and appointment which was an utter waste of my time, energy, the effort to leave the house and taxi money. If only the lady had bothered to have read my notes she could have told me that I didn't need to see her!

Friday 10th May

My video and story (with subtitles and a transcript) for Action for M.E. (link here) got published today (also see my blog's Instagram as it's reposted there too!) 

Due to my health I had to give up my voluntary campaign work. I did try volunteering at the hospice as a play worker for a while but my seizures put a stop to that so when Action for M.E. approached me it was so good to once again use my lived experience to help raise awareness and educate people. (There's another project I'm going to help with but it's still in the early stages).

When Dad and my step-mum got home they found my laid on the floor on my front having a seizure. I must have fallen from the sofa. We have no idea how long I'd been like that for and unfortunately my CareLink didn't set off. Dad kept and eye on me for a while (Dad and my step-mum had turned me on my back) and I slowly came round. I wasn't able to communicate for a while and was very post-ictal, I was feeling very sick but I couldn't say. Eventually I tried BSL sign 'vomit' but Dad and my step-mum didn't understand, my step-mum then asked me to finger spell and she knew the alphabet which I didn't know she knew and I spelled out 'sick' and then started the letter 'c-y-c' for Cyclizine and Dad found some and gave it to me. He tried to sit me up my my POTS went haywire so he laid me down and I spent a few hours on the floor exhausted. 

We had tea late and after we'd eaten I went up to bed.
Dad's just brought me a herbal tea and I'm going to have an early night.

Saturday 11th May

High fatigue day. Managed to clean Flop out as he really needed it. In the evening Dad and I went to a quiz night at his church. It was nice to get out the house and I enjoyed myself despite the pain and how tired I felt.
I also started listening to the special edition of The M.E. Show featuring short stories of people's lives of 'The Real M.E.' and I found that my submission was used which was amazing but also quite upsetting to hear, both listening to myself but being able to relate to other people's stories. I did a blog post on it ⇨ here with a link to the podcast and I also copied the transcript below. 
Just like with my video for Action For M.E. (link ⇨ here) it was hard to sum M.E. up in a few minutes but I briefly talked about a typical day for me.
It's been nice this week to have two opportunities to use my lived experience to help raise awareness.

Sunday 12th May

Had a terrible nights "sleep". I was exhausted but I just couldn't sleep so I listened to a whole audiobook. Something different to the usual Harry Potter and it was quite good and even though I couldn't sleep it helped to just lay with my headphones and an eye mask for darkness and just listen as opposed to watching something on my laptop like I normally do. What didn't help with my sleep was the pain. I didn't drop off until about 5am. I later found out that I'd forgotten my night meds (I was rather exhausted and distracted when I got home).
So I've woken up this morning feeling awful - a mixture of lack of sleep, PEM and not taking my meds.
I've just been downstairs for breakfast and now I'm back in bed.
I've spent most of the day on my bed listening to an audio book dozing. I did spend ½ and hour laid on the sunroom floor making the most of the warmth. Once again I've had another day in a lot of generalised pain in my joints and muscles. I have come downstairs this evening and laid on the sofa watching easy watching TV that doesn't require much concentration.
I'm hoping for a better nights sleep.