Monday 7th January
So I woke up pretty early this morning due to pain because my left wrist had decided to dislocate and due to the pain despite being tired I couldn't nodded off. Thankfully some pain relief helped and I put my brace on too. I sorted out my meds for the day and took my breakfast meds and then had something to eat. I then dozed on the sofa and then migrated to bed. I then slowly got myself washed and dressed and put on some make up.
Just after 2pm Dad and I left the house as we had a meeting. at 2.30pm I met my new advocate and then at 3pm we had a multidisciplinary meeting.
The meeting went okay; it helped having my advocate there. We came up with a plan, it just hoping that that plan actually happens and it put into place. We decided it wasn't time for me to restart to TC and my physical health needs to be sorted first.
I was pretty wiped out when we got home and my stomach and nausea has been quite bad since I've gone back to eating some gluten for my coeliac test so I curled up on the sofa with a wheat heatie and some herbal tea Dr Sally made up for me and I ended up dozing.
We then had tea and after tea Dad, Mandy and I watched a film called 'Dumplin' which was quite good.
I've been struggling with flashbacks this evening so I've been distracting myself with YouTube as even though I'm physically and mentally exhausted I know if I went to sleep I just be laid their with my mind in overdrive and making me go into crisis. I've now finally taken down my Christmas cards and I've put the TV on and I hope to get to bed too as I have to be up earlier than usual as one of my community nurses is going round at some point between 9am and 1pm.
Tuesday 8th January
Woke up feel awful and not helped by not taking my night meds when I opened up my tablet box. I slept through my alarm but thankfully my community nurse didn't come until around 11am and I apologised to her for still being in my pj's. Lemsip, cyclizine (anti sickness) for breakfast (and then some porridge when the nausea settled). After the nurse left I was too tired and ill to make my way back upstairs to bed so I slept on the sofa. I've been sipping on some herbal tea for colds and flu that I picked up from Orchard Barn and I think that's helping. It's now 2.50pm and I more awake and feeling a bit better but my vision is still a bit burly and i'm still feeling quite dizzy and weak but I'm feeling a bit more human and I've got out my clothes, though it was tempting to stay in my new pj's (brushed cotton zebra print pj's). I did have an appointment this afternoon with my support worker from L&H but I text her to cancel so I could rest and we've rearranged for next week. I spent the afternoon sipping on herbal tea and resting in bed and had an early night.
Wednesday 9th January
Had my carer this morning. Needed to run some errands. Finally dropped off my old inhaler canisters and medicine bottles off at the pharmacy to be recycled/incinerated (it was quite a large bag!); we then had to nip back home as I forgot to pick up my Next parcel to return. We then went to Next and returned the jeans; I tried on some other ones I saw but they weren't comfortable when I was in a seated position which is kind of essential for me. In the accessible changing room the emergency red cord (one of my missions for the year) was tucked up on on of the hooks as well as tied up so I unhooked it and put on a Euan's Guide card and informed the lady on the tills that the red cord needed unknotting and that I'd left and info card.
We then trekked over to Tesco. I took some photographs to upload to my Euan's Guide review. The emergency red cord in the toilet was untied but I still left a card. I sent a tweet to both Tesco and Next and Next replied asking which store it was and hopefully they will rectify the issue (the power of social media!). When we got to Tesco I was due a drink and my carer wanted something to eat so we sat in the café for a bit and then did our shopping.
I got home and waited for my hairdresser to come and trim my fringe. I then updated my Euan's Guide review of Tesco's.
My step-mum and I then watched the New Year's episode of Doctor Who and I was nodding off so when it finished I when an had a nap.
I've got a couple of PostCrossing postcards to write and I received 2 letters today from my pen pals so my plan for the rest of the evening (depending on energy levels) is to write some letters or postcards and watch Silent Witness.
Thursday 10th January
Still feeling full of cold and general yuckyness so stayed in my pj's until my carer came. Was planning on posting some mail but just decided to get a bath and have Jess help me make some lunch. Tired out after so just laid on the sofa with the TV on. When Dad got home he made tea and we watched a documentary. In the evening when my step-mum got home we watched a crime drama and then I headed to bed.
Friday 11th January
Struggled to get up this morning. Spent a while in my pjs getting distracted before finally getting dressed mid-afternoon. Once Was dressed I was tired out so I curled up on the sofa with a wheat heatie. Myoclonic seizures and muscle spasms where playing and they were going on for a while and I couldn't use my phone so I called CareLink to call my step-mum for me. This evening some friends of Dad and my step-mum's from church came round and I joined them to play some games before my body decided to have a few seizures. A friend from church also asked me if I could crochet a baby blanket so that will be enjoyable to do.
Saturday 12th January
Not had the best of days. Woke up usual time in an attempt to get into a wake-up routine. Not long after having breakfast whilst watching TV I had a seizure which I had not warning about. Dad tucked me up in a blanket and closed the blinds in the living room and told me to get some sleep and I had a few hours sleep on the sofa. Waking up I felt a bit groggy and realised I missed my breakfast/morning meds - (major oops!). I watched TV for a bit but felt utterly yuck. Slowly feeling worse I migrated to my bedroom to lay on my bed and watch something on my laptop but a migraine was slowly creeping in. I took some PRN (as and when needed) medication including sumatriptan (migraine prevention meds), paracetamol, dextrose and cyclizine (anti-emetic aka anti-sickness). Migraine worsening I switched off my laptop and put on my noise cancelling headphones with Harry Potter on audiobook on the lowest volume possible and laid in the dark and half dozed and tried to keep sipping on juice. I spent the rest of the afternoon/evening in quiet and darkness, even using on a small light to take my tablets hurt. Medication did help and although I did have some very minor hemiplegic migraine symptoms it wasn't full-on hemiplegic, more and a migraine with aura (with severe eye pain) with minor hemiplegic symptoms.
Sunday 13th January
Feeling much better than I did yesterday. Got up at my now usual routine time but stayed in bed (awake) for the morning, partly to rest and partly because I got side-tracked with an issue with one of my email accounts. This afternoon I was productive and sorted out all of next week supplements into my new pill box thing. I started to feel a bit unwell and a bit headachy so I laid on the sofa in the dark with a heat pack for a while. After tea I took my Shellac™ off and painted my nails until I can get round to doing them with Shellac™ again. Dad was going to wash my hair but I decided to delegate my spoons/energy into my nails and wash my hair tomorrow. I'm now tucked up in bed with a wheat heatie, my aromatherapy diffuser on and ready to listen to some Harry Potter and get to bed at an acceptable-ish time (it's a few minutes after 11pm and my aim is to try and get settled down around 10/10.30pm so I'm slowly bringing the time down. The joys of M.E. and sleep reversal/insomnia.
Video description:
Monday: dropping a bath bomb into the bathtub
Tuesday: putting herbal tea into a blue dinosaur shaped tea tea infuser with a measuring green teaspoon
Wednesday: my hand opening up with my morning medication in my hand
Thursday: my one-cup during water into my cup
Friday: the microwave going round with my wheat heatie inside
Saturday: a black scree to represent the day that I spent the day in darkness due to a severe migraine
Sunday: me painting my nails with grey polish and a bottle of matte top coat
