- Monday 28th May - Woke up around 10am to give myself a bit of a lay in but so I'm not too tired getting up tomorrow. Sorted out my meds and to my annoyance my clonazapam (seizure meds) was missing, queue phone call to the pharmacy and another job for tomorrow - grr! I have put Shellac™ on my nails for a while due to fatigue and brain fog and I've missed it so I summed all the spoons I had an did my nails. It wasn't;t perfect but it was an achievement and Dad was very good at helping me choose a colour and style! I then rested after I cleared up my nail equipment and spent the rest of the afternoon and evening laid watching TV, though my neuropathic pain and in my foot and restless legs was driving me a bit stir crazy. After tea Dad washed my hair and then we washed Springwatch together (the three of us). Part way through I had a half hour long seizure episode which I had around 5/6 tonic-clonic seizures and in-between unconscious full-body myoclonic seizures. I came round but was still having myoclonic seizures (and and still spasming now) I made it upstairs to bed and got into my pj's. I wanted to sleep but the spasming was stopping me from nodding of so I thought I rest and do a bit of distraction. Hopefully it will wear of soon so I can get some sleep.
- Tuesday 29th May - Today has been hugely challenging and difficult. Found it hard to put my thoughts down and unwind and instead I just find myself getting more tangled up. Anxious about Dad and Mandy going away tomorrow, thankfully the pharmacy have delivered my clonazepam so I've got that back in my system, I'm just hoping that I will be okay over the next few days. I have carers popping in to check in on me and to give me a hand with anything. Fingers crossed I can enjoy the peace and quiet and there will be nothing going wrong like last time they went away.
- Wednesday 30th May - Busy morning out with my carer. Tesco's took longer than expected but the pharmacist was really helpful when I went to get advice for my sore throat (I'm currently loosing my voice) and sinus pain. We then went to Specsavers to pick up my glasses. On the way back to the car I had an upper body myoclonic seizure attack which lasted around 15/20 minutes and my carers had to guide me back to the car as I was a bit out of it and incase I was to have a tonic-clonic seizure. A few letters and a parcel then went off to the post office. I spent the afternoon on the sofa where I was safest. In the evening another carer came round as my parents are away. I went into a prolonged status seizure episode and my carer eventually called 999. The paramedics came and gave me some IV diazepam to bring me out the seizures but I was still spasming so I suggested entonox which usually does the trick and it worked. They did their obs and really wanted me to go to A&E but I explained my previous poor care and bad experiences so they left me at home and I glued myself to the sofa and put on Harry Potter as a distraction. Later my evening carer called me just to check I was okay and I got to bed and went straight off to sleep.
- Thursday 31st May - Nothing special today. Difficult start to the day; in a lot of pain and very tired. I just hope that the situation with A&E gets sorted out soon. I didn't do much during the day, just rested, did a bit of college work and watched TV. I went to check on my wildflower seeds which I was please to see have started to row. I had my carer come in the evening and I had a nice shower and my hair washed and then got my tea. I washed TV for the rest of the evening and went to bed.
My gratitude list list for this week is:
- Having the skills to Shellac™ my nails
- Dad washing my hair
- Dad being there through my seizure and helping me when I came round
- Access to medication for free
- My carers
- Brilliant paramedics who I'm going to contact EMAS PALS and say how great they was with me
- Nature and my lovely wildflower seeds
- My pen pals
- Shower and hair washes
