🔋 Thursday 1st August
Had a free diary today so just took the opportunity to recharge my batteries.🗒 Friday 2nd August
I only had one appointment today which was with my new advocate. It was mostly to let her know what my old advocate had been doing and the things I feel I need support with. Things went really well as initially I was a bit unsure as I'd been struggling to get hold of her for quite a while but I feel that now she's going to get on with stuff, see me when needed, be contactable and be there at any assessments, meetings or appointments. She's going to try an get me another care assessment so fingers crossed,👩🏻💻 Saturday 3rd August
The day went fairly quietly. This evening I had a few seizures. I was in too much pain to get comfortable to sleep so I sat up in bed and watched a couple of episodes of Bones on Amazon Prime.The past few days especially I've been really struggling with body image which I did an blog post about: "My Secret Struggle".
💊 Sunday 4th August
Woke up around 5am in pain which I'd kinda gotten out the cycle of so I'm hoping it's not starting up again. I watched some more Bones and managed to get a little bit of sleep before my alarm went off.I'm now I'm drinking my coffee and I'm now utterly exhausted and will probably have a nap at some point.
I'm now just settling down in bed feeling like utterly fed-up as for the second night in a row my pain is really bad an I'm exhausted and I just want to sleep and my mood is low because I know there is no end in sight to my pain and other symptoms.
💤 Monday 5th August
M.E. and pain flare kinda day. I was up at 6am in pain; I hoped to get back to sleep but that didn't happen. Managed to nap during the day, well I couldn't help but end up falling asleep.🚿 Tuesday 6th August
Still not feeling great but with the help of my carer having a proper all-out shower and hair wash made me feel much brighter and the warmth helped my pain. Still in a flare today. Had a lay in and had a laptop today bringing my blog's IG up to date. Need to get better at doing that.💖 Wednesday 7th August
Today was a self-care kinda day. I just chilled out on the sofa and watched TV, I also finished off a letter to a pen pal and messaged my other pen pals letting them know that I've been struggling with my health and I will reply as soon as I can. Thankfully all where understanding.🌳 Thursday 8th August
Dad and I went on a day out to Elsham Hall which is not too far from home and it's somewhere I've always wanted to go as every time we go out we pass the sign for it.We had nice weather and the route round the lake and gardens was wheelchair friedlyish, though there was one part where I was worried I'd tip into the pond an another where I though I'd go into a bush.
It was a nice leisurely day and we enjoyed sitting in the courtyard with our coffee people watching.
We I got home I went for a nap feeling utterly exhausted, in a lot of pain and with a migraine brewing. I've only been downstairs to eat and that was difficult. As soon as I'd finished eating it was back upstairs to bed.
I now have a raging migraine and feeling the payback for a day out. Thankfully I have nothing in my diary for the rest of the week other than an M.E. crash and PEM (Post Exertion Malaise).
I just want to treasure though a nice day out with my Dad and making the most of having him off work for the summer holidays.
😪 Friday 9th August
Severe M.E. PEM (Post Exertion Malaise) today as a result of going out yesterday.My cousin was up from London as she was going to a wedding so she popped round for a bit.
The evening was really difficult. I had a very long seizure episode and I managed my head when I fell as I don't have a warning about my seizures now. When I finally came round and was post-ictal (the altered state of consciousness you're in after a seizure) apparently I was screaming and normally I have no or difficulty with speech and I couldn't communicate that my hip had dislocated.
Finally I was able to stutter this when I'd come round a bit more and Dad gave me some morphine and then after a while topped me up with some co-codamol and he put cushions and blankets around me. Dad got me my headphones and my iPad so I could watch Bones to distract me and I laid on the floor for a few hours before Dad awkwardly helped me to bed.
I'm just thankful I wasn't home alone, if I had I would have needed to press my CareLink and have the paramedics out. This is just why we are desperately fighting for me to have some sort of care package.
I'm writing this in on Saturday and looking bad I feel upset, angry and frustrated as the situation was awful and I'm just desperate for a care package I'm so scared when I'm home alone and I daren't move incase I fall and I pass out so much and I have multiple seizures a day and I have no help and it feel like the people that are meant to care don't.
🛋 Saturday 10th August
Feeling upset today about last night and I've been in a lot of pain today. I really wanted a day in bed but instead I spent the day on th sofa so it doesn't disrupt my (very poor) sleep routine.🖍 Sunday 11th August
I'm having a nice quiet day as Mandy is at work and Dad's in London visiting my brother and they're going to play golf together.I'm still in a bit of pain and I'm still feeling exhausted from going out on Thursday.
I've managed to put together a couple of letters to two new pen pals. The rest of the day so far has just been resting on the sofa.
I spent a bit of time colouring this evening. I'm now settled in bed but pain levels are high so I'm just distracting myself.
🎬 Video Description
- Thursday: Time lapse video of me drinking juice of of a green cactus shaped cup
- Friday: Dropping a wooden bead into a small narrow glass jar
- Saturday: Stirring mil into a cup of coffee
- Sunday: Ripping apart sealed individual co-codamol tablets
- Monday: Tying together my shoe laces on my rainbow sparkly Doc Martens
- Tuesday: Photograph of the fishtail braids in my hair
- Wednesday: Going through the pages to a letter book for a pen friend
- Thursday: Photograph of Dad and I
- Friday: Stirring my tomatoes soup
- Saturday: Opening the nighttime section of my alarmed tablet box
- Sunday: A red envelope and I'm taking off the tape to the sticky
