Monday 8th July
I had a 15-ish minute seizure with my carer today and she's daily new to working in care and she's only just done her training but she did really well in dealing with it.
I was pretty tired after so my carer made me some lunch and a coffee so when she left I had that and had a nap before having to get ready to go to the dentist.
I was a bit anxious about having a new dentist as my ld dentist I've known ever since I've had teeth! But he was lovely and very understanding of my medical needs and asked questions and he loved my Stickman Communications file; he said I was very organised. And he treated me like an individual asked me what I want him to do such as in the event of a seizure etc. He checked my teeth and I found out that I still have a baby tooth! He took a mould of my mouth for a new TMJ brace, cleaned my teeth and took some up-to-date x-rays.
The rest of the evening was okay but I was struggling with my PTSD a bit at night time. I usually struggle at night but tonight is a bit worse than usual.
Tuesday 7th July
Still struggling emotionally a bit after yesterday. Had a bit of an extended lay in but managed to get dressed before 11.30am. I had a nice chilled out morning.
My anxiety started to peak in the afternoon, especially being alone with my thoughts. It helped having my carer at 2.15pm. It's my free ½ hour call that my care agency have given me because I was feeling lonely and isolated. I had quite a stack of mail as I haven't been to the Post Office in a while so we posted that and then when we got home my carer braided my hair.
I've had to order a new alarm box for my tablets as for the past few weeks mine has been resetting itself. The company have rebranded so instead of it being a mid blue colour it's now a jade-turquoise kind of colour.
This evening I've just been sat up on my room on my laptop mostly trying to get college work done.
I was going to work on a letter but it's getting late so I may just get into my pj's and start to settle down.
Wednesday 8th July
Had an accidental lay in this morning but I must o needed the sleep and despite being exhausted I struggled the get off.
My birchbox came today and there's some nice things in it. I've decided to stash away my sample sizes for rehab/my holiday.
I have no plans today except the home library lady coming to bring me some more audiobooks and to sort through my emails, college work (as I have a deadline) and I've got some ideas for blog posts I want to do and get some mail done but the latter two aren't urgent and I need to remember to pace myself and rest. (Still need to read more of Dr Myhill's book - about treating/managing M.E.)
For now I need coffee and to summon up the energy to get dressed.
Had a slow kinda day. I didn't manage to get any studying done due brain fog and fatigue as well as having a few mid-length tonic-clonic seizures and being post-octal and spasming afterwards.
Thursday 9th July
I had Bluebird for 2 hrs today. We went to Tesco to pick up a few bits. I got a folder to put my physio sheets in and I got some more mechanical pencils and on offer I found some really cute gold wire rose push pins for my notice board. We then went to The Range and we had a drink and we had a browse and I broke my craft buying ban and bought a few card making bits as I'm making some cards for the Cards for Warriors project.
Ive come home and I've chilled out for a bit. My plan for the rest is to prioritise college work and resting and if I'm able to cards making or letter writing to pen pals; then have a bath tonight. I was going to have a bath this afternoon once I'd recharged but I thought a night time bath would be better to get me ready for be as I hardly slept at all last night and didn't get off to sleep until the early hours despite being utterly exhausted.
Okay, so all I've managed is some college work (I didn't manage to answer all the questions, but I got 3 questions answered) and college have been great to give me a 2 week extension so I have until the 1st August which hopefully should be plenty of time.
Even though I've achieved "little" that's actually a lot. Like my physio said, sometimes the small things are actually the big wins and I need the celebrate them more.
I've treated myself to a travel handbag which should hopefully be a bit more stylish than my rucksack and I got some freebies. The bag is similar to the handbag I bought recently; it's from the same brand (hmm, vlog post idea?).
For now my bed is calling me. Hopefully I will get a better night's sleep.
Friday 10th July
Had an eye test at home this morning buy I didn't find it helpful as I've been struggling with my vision a bit more but they said my prescription hadn't changed, but they did refer me to the hospital. I called the CCG to see if I could get a second eye test (I had to do this as my eye tests are NHS funded).
I've also been struggling to get hold of my advocate and I found out today that she'd left so I left a message with my new advocate so hopefully she'll contact me as I'm having problems with one of my medications which I desperately need and I'm stuck in the middle needing the medication; my neurologist saying I need it and the clinical pharmacist at the GP practise refusing to prescribe even though I've had it prescribed before whilst on the medications I'm no which has confused and frustrated me.
It's just little things like this that makes living with a chronic illness additionally difficult as you're dealing with the illness itself and then on top of that you're having to deal with carers and emails, phone calls, medication problems, appointments etc.
The warmer weather is starting to get to me. It makes my POTS worse so I've had to lay down more and it makes me more fatigued and brain fogged. Thankfully I have my extension on my college work and Dad's going to help me with a question I'm stuck on at some point.
I did have things planned to do today like letter writing but there's always tomorrow. The main thing I want/need to do is put my clean clothes away and do a little tidying up.
On some exciting news the bag that I ordered had been shipped and with it I got a free fold away rucksack and a set of 4 luggage packing cubes and when I bought my Samantha handbag I didn't;t realise I could of got some freebies with that too so I emailed the company and they said I could have them too so I'm getting a fold away shopper bag and a scarf too! I'm hoping the mini Jen bag with be big enough as I was going to get the Jennie bag but it said if you're under 5 ft 5" they recommend getting the mini Jen bag instead. But if I'm say going to London for the day I need a bad big enough for my headphones, a spare pair of trousers, my iPad etc.
Saturday 11th July
Not felt great today; more tired than usual so didn't get much done. I'm just hoping that I've got long enough on this deadline for my college work.
I had a seizure this evening, Dad was around though. We watched an episode of 'Police Interceptors' together.
All-in-all a boring day and not entirely uneventful.
Sunday 12th July
Set my alarm for 8am which I turned off, unfortunately I went back to sleep accidentally and I forgotten to reset my second alarm so that went off at it's usual time and I was utterly later for getting ready to going to church plus I was feeling pretty tired so I probably wouldn't have managed going to church anyway.
Had a nice quiet day.
I made a load more card for Cards for Warriors. I sat in the back bedroom and got a bit carried away and then I tired myself out.
Monday: photograph of a crochet pattern page and the made item which is a circle in pink and turquoise yarn
Tuesday: Sliding open my orange supplements tablet box
Wednesday: time-lapse video of colouring in a cactus sticker using green felt-tip pens
Thursday: Stirring a bath of pink water
Friday: Adding tincture drops into a cup of water
Saturday: Turing on my aromatherapy diffuser the first press of the button a green light comes on and the second a red light comes on.
Sunday: Pages being printed coming out of the printer