One Second Every Day - April: Week 1

Monday 1st April

Not the best start to the week.

Had may carer this morning and I had one short tonic-clonic seizure. A little later one I went into a prolonged seizure and the paramedics where called out. I wanted to avoid A&E as much as possible so they did what they could but my myoclonic seizure where still pretty bad. I didn't;t really feel like the paramedics listens to me when I was trying to explain to them what care works for me and how my illnesses affect me. They kept trying to compare me to "normal" people, for example with the way my body metabolises medication what might take the average person 2 minutes for a medication to work it takes my body 20 minutes. My carer stayed as long as she could but had to go to her next customer so another carer came o take over. One thing I love about Bluebird is even in emergency situations they still try and get a familiar carer to your care team out to you so one of my 'backup' carers came to take over until my step-mum got home so I wasn't alone still having my seizures.

Sometimes it's the smaller things that make the biggest difference, like someone making a coffee and holding the cup so I could drink because I can do that or feeding me a sandwich. It's hard to had someone do that for you in your 20's but I'm treated with such dignity and respect and humanness.

Despite everything that one on this evening I've managed to get the college work that I aimed to do done and I've put together a couple more letter which my step-mum is going to post for me tomorrow.

Tuesday 2nd April

Super bad night's sleep again. I was in a lot of pain though I managed to get some sleep eventually. As something to do I coloured in a card and envelope to send to a friend.
I just had a quite day in the house.
I had my carer for ½ and hour this afternoon and then at 3pm I had a visit at home.

Wednesday 3rd April

I had a meeting in the morning at home.

Not having the best of days. I've tried to do lots of self-care and I settled myself in bed and had a nap and watched a film.

Not had the best time with my seizures this week. i don't think being unwell and having an infection is helping.

Thursday 4th April

Had my carer for a couple of hours today. I've had my favourite carer this week and we get on really well but she's still really professional and I've put it to Bluebird to nominate her as carer of the month.

Action for M.E. have asked me to make a short video about 'M.E. and Me' so I got round to doing that this afternoon and I learnt a lot about how to edit videos so that should help me to try and make more videos for my YouTube channel.

I had an early night and settled down in bed with a film.

Friday 5th April

Woke up okay. Still feeling unwell and having sharp chest pain and difficulty swelling which I've been having since the early hours of Wednesday.
Today I've watched some TV, done some of my distance learning work and done some tidying in my room. I've also cleaned Flop out with my step-mum's help and I had a little cuddle with him and he was very chatty.
This evening it was just Dad and me so we watched some TV together. My myoclonic seizures have been flaring up so I've settled in bed early and I'm just going to watch 'Glow Up' on BBC iPlayer which I'm really into and Dad's just brought me a herbal tea.

Saturday 6th April

Forgot to write today, oops!

Sunday 7th April

Today I didn't;t feel well at all so it was a day in bed watching Chicago Med. I hardly slept at all last night so I don't think that helped. I've been in a lot of pain today. Emotionally I've been struggling too and because of my tiredness and pain I've found it hard to distract myself.

Video description:

• Monday: writing on a piece of paper
• Tuesday: opening a card that I'd coloured in, the picture has butterflies on it.
• Wednesday: opening up a tin of colourful felt tip pens
• Thursday: stirring a drink
• Friday: having a cuddle with Flop my guinea pig
• Saturday: clip of the TV screen
• Sunday: opening the DVD case to Chicago Med