Sunday 9 June 2019

One Second Every Day - June: Week 1

🐢 Saturday 1st June

Had a nice afternoon with my friend. We haven't seen each other for a while as both of us haven't been well. She brought with her some face masks and we put them one and drank tea and had a good catch up. She's the only "real person" friend I have.

🐵 Sunday 2nd June

Not much of an exciting day. Just a usual day, struggling to wake-up and get out of bed; I was able to lounge in my pj's as I had the house to myself and i just laid on the sofa and watched TV.
I put in a Superdrug order for supplies for another pamper session with my friend as she's having an operation next week so she'll be out of action for 6 weeks so when she's feeling better we're going to have another pamper afternoon.

🐸 Monday 3rd June

Not an interesting day. Had my call with Bluebird and then I just rested for the rest of the day and finished of the last part of Section 2 of my college course and submitted that as the deadline is on the 6th.
I have an app to keep my finances in check and it was all going great and then the number went all wrong and I asked my stepmum to help me (as she good with that sort of stuff) and then I just decided to have a clean break and start from scratch (as it was getting all a bit too confusing) but it does mean that my bank account and app out out of sync but I couldn't sync it as both my ESA and PIP (disability allowances) both go into the same account but I like to separate the two so I know what I'm spending on daily living things and what I'm spending on disability things so it's a bit frustrating but at least I know I have some fall back in my bank account. I still like the app and would recommend it; it's called 'Pocket Expense'.

🐳 Tuesday 4th June

Woke up early this morning in pain so I decided to do some letter writing on my laptop to distract myself. I'm almost done with working my way through the stack of replies I had. I've now just got one friend to rely to.
I had a day of extended pj wearing and didn't get dressed until around 1pm. I put on some make up just to brighten myself up.
I had my ½ hour call with Bluebird and my carer braided my hair and then we took a trip to the Post Office.
I've just spent the rest of the day resting as I'm at UCLH tomorrow. Thankfully its not a stupid o'clock pick up time.
This evening I'm just planning on having a bath, getting my bag ready, ensuring things are on charge and having an early night.

🐙 Wednesday 5th June

What a day! (writing this Thursday). Thankfully it wasn't an stupid o'clock early start. Patient transport arrived around 8.30pm. Bit of a panic as they was early and I wasn't quite ready, thankfully I wasn't in the middle of doing my makeup! I did forget my phone so we had to head back but luckily we'd only just got into the village when I realised and we wasn't on the motorway.
We had our usual pitstop at Peterborough services of the loo and a coffee. I watched a Panorama documentary but i was struggling to concentrate and I did some Instagram browsing and starting listening to a new audiobook.
When we got into London I like looking out the window.
Parked up at UCLH and I'm starting to know my way around there now. We found radiology easily. When we got to the desk and I handed them my appointment letter I got told my appointment had be canceled! Seriously?! I was not impressed, especially as a) we'd travelled or 5 ½ hrs and b) I'd received a text reminder. I asked if someone else could do the tests, or even if one of the tests could go ahead so the receptionist went off for a while and came back and it was a no-go. 
Quick nip to the loo and then I wanted to head to the PALS office but when we got there it was closed on Wednesdays. We then went the café/restaurant and had something to eat and just a rest from being in the ambulance.
After a while the fire alarm went off (and it wasn't a drill) the noise, flashing alarms and lots of people exiting starting flaring up my seizures so we scooted back to the ambulance and got ready to set off.
I had flaring migraine and my pain was flaring so I took some pain relief and settled down with my eyes closed listening to my audiobook.
Had another stop at Peterborough services for the loo and I fancied a sandwich but I was doubtful that I'd find one, but I did! We went to M&S and had a look and rather than going on a hunt for a non-existent sandwich we asked a member of staff and hey presto they did gluten free sandwiches and they had a veggie option (egg mayo and watercress) and it was lovely. I didn't feel like a coffee, and I like the fruit coolers in Costa but I didn't fancy a cold drink (plus Watchdog did an article on the 'swab mob' on ice in cafés and it's kinda made me a bit wary).
Home finally and into pj's and I took some more pain relief, anti-sickness and migraine meds. I settled down and watched some TV for a bit then headed to bed.

🐥 Thursday 6th June

Woke up early in pain. This seems to be a reoccurring problem at the moment. I then struggled to get out of bed.
I had Bluebird as usual then I just laid and watched TV and I wiped out from yesterday. My friend popped round for a quick chat and cuppa.
I'm not just sat watching TV. I hope to start on Part C of my distance learning course this evening before I settle down.

🐹 Friday 7th June

Had an appointment at Orchard Barn today. I had my last session of acupuncture and I also treated myself to a 'Nourishing Hand Treatment' and I had my nails shaped and cuticles done, I also had my hands soaked in warm oil and had an exfoliating scrub and hand massage as well as a foot massage. It was much needed! I've felt so on edge lately it was nice to chill out and have a pamper and to have something different too, plus it's helped with the muscle spasms and tension in my hands.
The rest of the day has been zonked out either on the sofa or in my bedroom.

🐴 Saturday 8th June

Had the usual woken up early with pain, this time neuropathic pain which my foot feeling like it was on fire. Normally cold just makes things worse but when I'm having this particular symptom an ice pack is the only thing that helps, esp if it can mean I can avoid taking medication.
As usual I spent he day 'sofa-bound'. I got some college work done, watched some TV, blog/laptop stuff and of course resting and napping.
Feeling snuffly and flu-like.

🐠 Sunday 9th June

Struggled to get out of bed today. It took longer than usual; about an hour and a half.
Still feeling snuffly and flu-like and I've got a headache so I'm just trying to drink extra fluids and just curling up on the sofa. I've done some laptop stuff but my brain feeling like it's going in slow motion and it's full of treacle.
Spent as usual the afternoon 'sofa-bound'.
Had an autonomic seizure after tea; a mixture of POTS and FND.
Still feeling post-ictal and I've been trying to organise my medical diary as I've not been keeping it updated and instead I've just been making notes on my health app. I'm too tired tonight but next week I can start bringing my warrior beads up-to-date.

Video description:

  • Monday: putting a slice of cucumber onto my sandwich
  • Tuesday: water filling the bath and squirting in bubble bath
  • Wednesday: view out the window of houses and the street passing by
  • Thursday: my step-mum spraying the window with the hose pipe
  • Friday: highlighting a line of text in yellow
  • Saturday: time-lapse video of my kettle filling up my cup
  • Sunday: Sliding open Sunday's tablet box