- Monday 26th November - Had a nice long lay in and really didn't want to/struggled get out of bed. Had a slow morning as I'm having a high fatigue day so I just took my time and rested as that's all I could do. I managed to get dressed early afternoon as I had a care call and needed to nip out and at 2.15pm Rosie one of my carers came. We took a quick trip to Tesco to get a key cut for my Uncle Mark so he can get into the house for emergencies as he's named on my CareLink. We then quickly nipped into Tesco for batteries for my medication alarm box and to post some letters and PostCrossing postcards. We then headed home and Rosie made me a drink as I'd only had the energy to get off the sofa to make breakfast that day. Rosie made her notes and headed off. In the evening I managed to make two squares which caught me up as I made 4 yesterday and then I headed to bed.
- Tuesday 27th November - Had the usual struggle to get up and out of bed. Had a rest morning/early afternoon in my pj's and then I got washed and dressed. I had a little recharge but had jobs to do so got a snack and then cleaned Flop out and did the dishwasher. I was tired out by this point so decided to do something low-key and did some of my crochet. I've made 2 squares today and sewn on 6 so making progress. I've been a bit wobbly on my legs today and had three falls. I'm now curled up in bed with a herbal tea hoping to get off to sleep soon as I have Bluebird at 11am so no lay in for me as I've normally been getting up round 10/11am so my aim is to be up by 9.30am (10am at the latest). All I really need to do is get up, get my meds for the day sorted, get breakfast and get dressed but when you're chronically ill all of this takes 10x longer and takes more energy/effort.
- Wednesday 28th November - Managed to get up in time for my carer to come at 11am. It was Rosie today one of my favourite carers (though I love everyone in my care team). We had a good chat and I got some stuff off my mind which helped (and she braided my hair). I was feeling a bit tired but we managed to pick up my glasses from Specsavers and then we went for coffee for half an hour as it was busy in the pottery painting café and then we went back to the pottery painting place. I've been wanting to go pottery painting to make a few Christmas gifts and with my hairdressers appointment being canceled today it gave us the perfect opportunity. It was nice and relaxing. Painting done we headed home and I had some lunch. I fainted but thankfully Rosie was around. She left me on the sofa with everything around me. I've had a myoclonic seizure episode for about an hour and a half so I just rested on the sofa. I took fall down the stairs; I'm still unsure whether I blackout again of had a seizure but CareLink set off and the lady stayed on the line whilst I came round and crawled to the sofa where I could get some pain relief as my elbow and shoulder had subluxed/dislocated (not sure which). I'm now just waiting for Dad to come home. My shoulder is still painful as is my head from the stair fall but luckily I was bumshuffling down the stairs so it didn't do too much damage. I just rested for the rest of the evening and watched TV and did a bit more of my crochet.
- Thursday 29th November - Went to my friend Abi's in the afternoon. To cut a long story short I had several episodes of seizures each getting longer in length which lead to Abi calling 111 for advice. A fast response car came followed by an ambulance to take me to A&E. Paramedics didn't follow my neurologist's care plan to give me IV diazepam so I went to A&E still having seizures. Several hours later I was still having seizures. I got extremely poor "care" in A&E including my arm being restrained to get a BP and very ignorant knowledge from staff about FND/non-epileptic seizures and the complications of my hypermobility (e.g. seizures equal dislocations). When Dad arrived the Dr took him into a side room away from me and was told I was told that I was faking my seizures; that I was attention seeking and needed psychiatric help and dismissed my Dad when he tried to explain FND to him so Dad's going to make a complaint. I got home after midnight feeling very out of it and exhausted. Abi stayed with me the whole time in A&E despite that fact I was unconscious. I can't take her enough for her being there for me.
- Friday 30th November - I wasn't able to have much of a lay in as I had a hospital appointment. So I got up and got breakfasted, then washed (to get rid of the hospital yuck as I was too tired last night) and dressed and did my make-up then packed my bag and waited for patient transport who arrived just as I was on the phone to see where they was. It was then off to orthotics to get my knee brace fitted. The clinician I was seeing was running behind schedule so I called TASL to let them know and the receptionist made me a coffee and we chatted and I listed to some music (I'm in love with my wireless headphones). Unfortunately the knee brace that was ordered for me wasn't suitable - the clinician I saw was VERY knowledgeable of HSD/EDS and asked me how hypermobile my hands where which they are alongside the spasms so the pull on knee brace that was ordered wasn't suitable so he's ordered me a velcro wrap-around knee brace that will be easier to put on and off. Appointment over I was once again on the phone to TASL to let them know I was ready to go home when the crew turned up. Once home I rested and then got something to eat. Then when Dad got home we headed off out to the cinema to see 'The Crimes of Grindelwald'. It was a really good film, a sequel to 'Fantastic Beasts and Where to Find Them' and at the end it hinted to there being another film to follow. Home, snack, meds and then bed.
- My friend Abi
- My Dad
- Rosie (this weeks carer)
- Spending time with my Dad