Wednesday, 24 April 2019

One Second Every Day: April - Week 3


Monday 15th April

Had a nice quiet day. Not done much. Had a cuddle with Flop, watched some TV, wrote a couple of postcards, sorted out some paperwork.
I've been quite tired so I've just kept things low-key.
This evening my muscle spasms have been quite bad and painful and I'm finding them frustrating as I can't control my own body.
I feel last week, World FND Week, went well with my blog and I've been able to connect with a couple of other people with FND which has been really nice as before I knew no one an other than my neurologist I had no one to talk to who understood FND and even then my neurologist only understood it from a medical perspective so it's been nice to connect with other people who live with FND too and even though we're each unique with our FND we each 'get it' and can understand and relate to each other in different ways; in how FND has turned our life's upside down, the unpredictability and difficulty in dealing with relentless symptoms, the difficulty in getting treatment and being understood, the emotional impact and the loss of the life we had before and have to adjust to a new life with FND etc.


Tuesday 16th April 

Not done much today. Spent a while practising with my make-up. I wasn't going anywhere or seeing anyone but it just made me feel nice to put on something nice and do my make-up. I just need to find the energy to Shellac™ my nails at some point.
Other than that I haven't really done much today. My batteries are running low, nothing new there, so I just tried to recharge them as much as possible.
The M.E. Association are looking for volunteers to contribute towards The M.E. show podcast so I made a blog post and tweeted it to try and get the word out and it's been nice to get positive feedback and get so many people like and retweeting my post. I also contributed my part. It was a voice record of 'This is the real M.E.' and talking briefly about your day-to-day life with M.E. It wasn't perfect so I might plan it better an resend it?
This evening my step-mum, Dad and I finished off watching 'The Victim' on BBC.

Wednesday 17th April

Had a care plan update meeting with Dad and my nurse this morning.
I did my make-up again today, nothing as fancy as yesterday but it felt nice.
I rested for a bit and then this afternoon Dad washed my hair for me and then a bit later on my step-mum  Dad and myself went to see my step-mum's Dad and his partner as it was his birthday and I like seeing his partner.
I got back and was a bit tired so I just chilled out in the sunroom listening to a podcast.
This evening we watched a really interesting programme on the BBC about 'The Earth from Space' and it was about satellite pictures of the earth from space.
I'm now about to put on an audiobook and settle into bed which has nice clean sheets.

Thursday 18th April

Woke up with a fever and a sore threat around 6am so I just put on some Chicago Med and went back to sleep for a bit eventually and then woke up at my usual time.
Did my usual morning routine and practised with my makeup.
This afternoon I did a bit of art making postcards with my rush paint crystals. I'm slowing learning how to use them and trying out different techniques and ideas.
Dad and I had some time together. We went out to the local garden centre. It was nice to get out the house. We looked at some plant ideas for my bedroom and had a wonder around. They had some birds of prey and I got to hold a barn owl called Dexter and stroke him; he was so soft!. Then we headed to the cafe and we had coffee and chatted. It was nice to have some Dad time whilst he's off work.
With a migraine brewing and feeling flu like I was exhausted when we get back so I just got something to eat and laid on the sofa. Thankfully the Cyclizine (anti-sickness medication) and Sumatriptan (migraine medication) helped as did some diet coke (yep, that was recommended to me by my Dr).
I'm now just about to settle down for the night, I'm just hoping that I sleep well.

Friday 19th April

Woke up feeling yuck with a fever, sore throat and croaky voice, muscles hurting, eyes hurting, chesty mucus cough etc. I sat in bed with a cold and flu drink and watched an episode of Chicago Med. I've now managed to get myself dressed, downstairs, and I've had some breakfast and my medication and now I'm just resting on the sofa recharging.
I'm just going to take it easy today. I do need to do a bit of college work but hopefully through the brain fog I can manage it if I just break it up page-by-page.
Not sure if I'm feeling ill because of PEM from going out yesterday or whether I've just picked a bug up from somewhere as I don't have the best immune system?


Saturday 20th April

Woke up feeling awful. I was shaking all over and couldn't;t warm up and I had a fever and still had yesterday's symptoms.
Dad and I was going to go to Louth Garden Centre today but Dad decided that I just needed to rest and we'll go next week.
I've spent most of today in bed. Alternating between watching Chicago Med for a little while (I couldn't concentrate on watching a whole episode) and laying with my cooling eye mask - it has a gel insert that you put in the fridge and listing to podcasts and also falling asleep, usually by accident. I've also spent the day living off cold and flu drinks, and meds like anti-sickness and Sumatriptan as as well as dealing with the virus my body decided to throw in a migraine.

Sunday 21st April

Woke up feeling awful again; not helped by forgetting my night time meds. I took them and felt a bit more human by the afternoon. Unfortunately because I was feeling so dreadful I had to miss celebrating Easter at church.
I spent most of the day in bed again like yesterday.

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