Friday 1st FebruaryDidn't sleep well - I struggled to get off to sleep but Dr Sally is going to look into any possible remedies to help me, though I'm trying my hardest to get into a bedtime routine. Then I was up in the early hours with really bad stomach pain and cramping and I was in too much pain to sleep so I just put on Amazon Prime.
My OT (Occupational Therapists) came to deliver and fit my pillow raiser which is already a massive help. I did just have a rail next to my bed to pull myself up but it was strain on my shoulders and on my bad days I struggled to have the strength to sit myself up.
Then at 2pm I had my support workers from L&H come and visit me and update paperwork but my brain then decide it didn't want to do paperwork and instead have a seizure. Thankfully Mandy was home so she was able to help me up to bed and I had a nap.
Spent the rest of the evening on my bed resting and watching TV except for tea time.
Got off to sleep well. Woke up in the early hours to use the bathroom and found myself with my glasses still on the TV on and still in my dressing gown on top of my duvet so I must of nodded off pretty quick.
Saturday 2nd FebruaryStruggled to get up this morning as was pretty tired but needed my 10am meds and breakfast to go with it.
I've spent most of the day on my bed. After breakfast I put Bones on to watch but nodded off. My newest pj purchase have become my current favourite pj's - they're long sleeved and brushed cotton which a zebra print.
I've just been taking it easy today and only got dressed at lunch (2pm). I did have lunch downstairs and because I had rested I summoned the energy to clean Flop as he really needed it and he had fun running around whilst I did it.
I'm now back on my bed doing some bits on my laptop.
This evening Dad, Mandy and I watched the second half of Alien 2 that we didn't get to watch because of my seizures.
Sunday 3rd FebruaryI did plan on going to church today but instead, and without warning, my brain decided it would be a good idea to fall off the barstool and have a round of seizures. Thankfully Dad and Mandy heard the thud just as they was leaving for their church and stayed until I cam round and then Dad helped me upstairs to bed where I slept for several hours.
I then sat in bed for a while and watched Bones on my laptop.
After having something to eat I sat and made some cards from bits I've received in letters and wrote a round of PostCrossing postcards. I was exhausted but I pushed myself to tidy up.
I wasn't too hungry but I needed to have some wheat/gluten food so I had a bagel and and Dad made me a coffee and I settled back on my bed.
I'm having an early night as I'm exhausted but it's nice to keep and have a tidy bedroom.
Monday 4th FebruaryHad my carers (one was shadowing) for a couple of hours. The new shadowing carer was lovely and she's a trained hair dresser so can braid hair - bonus!
Mid getting dressed I had a 10 minute absence seizure with continual myoclonic seizures and then about 5 mins later whilst my carer was blowdrying my hair I had a tonic-clonic seizure.
I spent the rest of the day doing some letter writing and just resting as I feeling extra exhausted at the moment because I'm having a lot more seizures, fainting episodes and falls.
Tuesday 5th FebruaryNot feeling well today so had a pj and curl up on the sofa day. Had a ½ hr Bluebird call so had a quick shower and got dressed and something to eat to feel a bit more human.
Spent the day on the sofa.
The evening was difficult. I had on/off absence seizure and continuous myoclonic seizures.
Wednesday 6th FebruaryHectic day. Getting ready in the morning the running errands with my carer this afternoon and accidentally buying makeup!
Then home for a rest for a few hours before heading out to Orchard Barn for a 'Pamper and Relaxation Evening' with Mandy.
Had a lovely evening. It was nice to have some girly time with Mandy.
First, we had an aromatherapy workshop learning about aromatherapy and blending up our own oil.
Then we had a makeup tutorial and I was the model.
After that I had a back massage which was much needed.
The evening ended with a relaxation, mediation and breathing exercises workshop.
I'm in a lot of pain and my symptoms are flaring up so I'm just going to try hard to distract myself and I hope I nod off soon.
Thursday 7th FebruaryHad a quiet day to rest for going to London tomorrow. My OT can at lunchtime with the bath lift but it ran out of battery so she came back after a few hours so it could charge up a bit and so she can show me how it works and so I can give it a go.
In the evening Mandy and I watched the 3rd Alien film and I got myself ready for going to UCLH tomorrow.
Friday 8th FebruaryUp early, but not too early (7am). Got stress like I normally do just in case I forgot something. I had a patient transport crew come from Peterborough and they was a bit late but it was okay as we got to UCLH on time.
Had a seizure on the way there; we stopped off at Peterborough services for the loo and to get my diet coke and gelatine free sweets fix.
Clinic was running late but the Dr I saw was lovely and she has EDS herself and we both had diet coke and agreed that it's a good cure for nausea and dysautonomia.
(I'll do a separate post about the appointment.)
Mid gastro appt my gastro symptoms decided to flare up - talk about irony.
Had bloods and a ECG.
Nausea, pain and a migraine started up just as I was finishing up and ready to go home so took some meds and thankfully this time I packed a heat wrap.
Uneventful journey home. Got home about 9.30pm-ish.
I'm exhausted but I can't sleep.
Saturday 9th FebruaryReally struggling today with a cold/viral infection that comes with PEM for me.
Distracted myself with typing some replies to letters and I managed to get two letters put together. The rest I can have fun doing another day. (I type the letters in text boxes to fit inside the card and then I print it and cut out the text boxes and stick it inside the card and then I add little bits like quote cards, mail tags and puzzle book pages etc and no two letters are ever the same which I love making).
Despite the exhaustion I managed to get a wash this afternoon which made me feel a bit more human.
This evening I had a seizure so Dad helped me upstairs and now I'm just laid up in bed ready to put my pj's and and settled down once I've finished this sentence.
Sunday 10th FebruaryMade it to church this morning after not being able to go for several weeks.
I came home and put together a couple of letters and organised my Instagram, I'm now just doing some blogging and I've just realised the time and now I need to get my meds and something to eat and I just want to curl up on the sofa and have a rest.
Had a rest on the sofa and then Dad wanted the TV so I went upstairs and sat on my bed and started to type up a reply to a letter form one of my pen pals. I also made some word searches to photocopy and put into letters.
I watched some YouTube videos and then started to get ready for bed to try and get myself into a better sleep routine.