Tuesday, 29 January 2019

One Second Every Day - January Week 4

Monday 21st January

Spent the morning doing my usual wake-up routine. 
I received quite a lot of phone calls. One was from my care co-ordinator to check in on me after my blip at the weekend which was really good as I've felt since I left the TC that I've been a bit invisible. The other was from my independent advocate letting me know that my GP finally sent of the funding request for Leeds rehab (after waiting 14 months for him to do it). I really do feel getting an advocate involved has helped as I feel it's making professionals like my care-co and GP do their job and it's getting things done and getting my voice heard. We're still going to make an appt with the Practice Manager to raise the issue of how long it's taken my GP to send off for funding and to see if I can change GP.
Had my carer come at 12pm. 
Then at 4pm I had my initial appointment with the Adult ASD (Autism Spectrum Disorder) Team to see if it would be worth assessing me. They was really good and explained everything to me which helped and only one person spoke to me which helped me focused and they really understood "me", which I usually have to explain to people when I have other appointments. They did feel it was worth doing the ASD assessment so I'll be sent an appointment in the next few weeks.

Tuesday 22nd January

Exhausting but good day in London. Dad came with me today.
The journey there went okay, TASL was late but we got to St. George's on time, but Professor Edwards was running late anyway so I got my diet coke fix.
Professor Edwards was great as always. There's not much he can do for me, most of things now is just waiting for Leeds. He's going to continue seeing me which is good as the TC told me he was going to discharge me which sent me into a bit of a panic.
One the way home there was a lot of road closures and RTC's so we had to take the back roads. I didn't have any major seizure which was a bonus but I didn't feel well with a bad headache/verging on migraine and then I got really bad stomach cramps and sickness and I forgot to pack a heat pack but meds helped and I managed to get some sleep.
Home now and Mandy had my night time herbal tea ready for me so now I'm just settled in bed.

Wednesday 23rd January

Had a tonic-clonic seizure this morning so today has been a sleepy haze. The Red Cross was due to visit me but they had to rearrange due to a family emergency. Haven't done must, mostly napped, watched TV and crochet a little. I was too tired to migrate to my bed upstairs so had to make a nest on the sofa instead. 

Thursday 24th January

Made it out the house for some non-medical for the first time in weeks! Successful hunt for jeans, might actually go and get a second pair as I have to crawl around so much the knees ware out. 
Exhausted when I got back so I just rested. 
Today has been a good day for people like myself with M.E. as it was finally discussed in palimony today. Hopefully words will turn not actions. Had another tonic-clonic seizure this evening so when I came round and was well enough Dad helped me upstairs to bed and then brought me up my herbal night tea. I'm currently in too much pain to sleep so i'm just resting and distracting myself. 

Friday 25th January

Had my carer come this morning and we went to the postbox for some fresh air and to post some letters. Shattered afterwards so since then I've been in bed apart from going downstairs for meals. Been quite fatigued and brain fogged and I've struggled to concentre on much for long so went flitted between things like social media, crocheting, YouTube, and easy watching TV as well as napping. I think this morning, seizures and London are catch up on me. At least I can totally rest tomorrow. 

Saturday 26th January

Spent most of the bad on my bed just doing bits and bobs. I managed to have a wash which I haven't managed to have a 'proper' wash since Monday. That tired me out.
In the evening I fast watched my way through Alien catching up on the bits I missed and skipped though the bits I remembered as I was really struggling to concentrate when we watched it the other night. We watched Alien 2 in the evening but halfway through when I went to make myself a drink I had a few tonic-clonic seizures so I was too brain fogged to do anything except get Dad to help me upstairs to bed.

Sunday 27th January 

Slept in and forgot to reschedule my alarm to an hour earlier to get up in time to get ready for church so I had a lay-in and I feel bad about not going to church I haven't gone in weeks but it's a difficult balance of doing things I enjoy but pacing myself and not pushing myself too hard and making myself ill. 
It took me an hour to get out of bed but I got out of bed and had my breakfast downstairs and I brought down my crochet and sat on the sofa and put on some background TV and I've now finished the baby blanket and I'm just about to look at other blanket patterns to use with the yarn I bought. I was thinking of doing another star blanket but it will be nice to do something different.

Video description
Monday: view of a waiting area with a reception desk, grey double doors, a corridor and shelving unit. 
Tuesday: View out of the ambulance window whilst driving and cars and trees going past.
Wednesday: Small glass bottle with wooden beads in and another bead being dropped in.
Thursday: View of laminate flooring and table and chair legs and Flop the guinea pig who has a black, white and tan colour coat running around.
Friday: Red postbox with several letters being dropped in.
Saturday: Silver plug in disc port and a black DVD being ejected with 'Alien' written on the DVD.
Sunday: TENS machine which is white and green with different buttons on and a wire coming out on my lap and a blue digital display screen with different number on and me turning a button up and the number on the display turning from number 1 to 2.