Got up and slowly sorted myself out and made my way downstairs. Stayed in my pj's and watched TV.
Determined to keep to my 2019 goals I got dressed in my dinosaur pinafore dress and put on some make-up.
Didn't quite manage my goal of taking all my meds and physio but I have all year to work on that and maybe I'll do some yoga before bed if I'm not too tired.
Mandy and I are currently watching the final episode of Desperate Housewives - what are we to do now?!
Netflix also deleted Pretty Little Liars so I sent them an annoyed Facebook message and Tweet. Hopefully they will get back to me.
Determined to keep to my 2019 goals I got dressed in my dinosaur pinafore dress and put on some make-up.
Didn't quite manage my goal of taking all my meds and physio but I have all year to work on that and maybe I'll do some yoga before bed if I'm not too tired.
Mandy and I are currently watching the final episode of Desperate Housewives - what are we to do now?!
Netflix also deleted Pretty Little Liars so I sent them an annoyed Facebook message and Tweet. Hopefully they will get back to me.
Wednesday 2nd January
Spent most of the day in bed, though I did get dressed (just) before 12pm today, though it was a no make-up comfy clothes day, but we're all allowed days like that.
It's been quite a productive day. I made a list of everyone I wanted to put in my birthday book and sent them a message and as each person contacted me I put their birthday in my birthday book and ensured I had their up-to-date address. I also went through the upcoming medical appointments an ensured I had them in my iCalender (when my diary arrives I'll do the same). I also called orthotics to see if my knee brace had arrived and I also booked an appointment for my celiac blood test in 4 weeks but if the gluten makes me too ill I'm just going to call it quits. The dietician said 2-3 of bread per day should be enough so that's what I'm doing and eating gluten free the rest of the time.
I've not been good at taking my empty stomach meds (saccuharomyces boulardii - how to pronounce it I do not know!) today but I'm working on getting better at remembering to take it.
(Writing this in on Thursday). In the evening we watched Tuesday's and yesterday's 'Luther' episodes but I had a prolonged episode of seizures so I need to catch up on what I missed. Dad go me comfortable on the floor when I came round but I was still full body myoclonic spasming and my speech had gone stuttering. After a short while Dad got me some pain relief and then helped me up to bed and put the TV on as a distraction and kept checking in on me. I was still spasming for quite a while which kept me awake. I eventually gave in and asked Dad to draw me up a little bit of diazepam. I generally play it by ear as to what to take and how much but where possible I try and step medication up so I started with a little bit of pain relief and pain can make my spasms worse as my brain is misfiring signals and then take it from there. It took a while to get off to sleep so I gave myself a bit of a lay in.
It's been quite a productive day. I made a list of everyone I wanted to put in my birthday book and sent them a message and as each person contacted me I put their birthday in my birthday book and ensured I had their up-to-date address. I also went through the upcoming medical appointments an ensured I had them in my iCalender (when my diary arrives I'll do the same). I also called orthotics to see if my knee brace had arrived and I also booked an appointment for my celiac blood test in 4 weeks but if the gluten makes me too ill I'm just going to call it quits. The dietician said 2-3 of bread per day should be enough so that's what I'm doing and eating gluten free the rest of the time.
I've not been good at taking my empty stomach meds (saccuharomyces boulardii - how to pronounce it I do not know!) today but I'm working on getting better at remembering to take it.
(Writing this in on Thursday). In the evening we watched Tuesday's and yesterday's 'Luther' episodes but I had a prolonged episode of seizures so I need to catch up on what I missed. Dad go me comfortable on the floor when I came round but I was still full body myoclonic spasming and my speech had gone stuttering. After a short while Dad got me some pain relief and then helped me up to bed and put the TV on as a distraction and kept checking in on me. I was still spasming for quite a while which kept me awake. I eventually gave in and asked Dad to draw me up a little bit of diazepam. I generally play it by ear as to what to take and how much but where possible I try and step medication up so I started with a little bit of pain relief and pain can make my spasms worse as my brain is misfiring signals and then take it from there. It took a while to get off to sleep so I gave myself a bit of a lay in.
Thursday 3rd January
Managed to just about take all my meds properly up until the evening where I took my meds later than I should have (but there's always tomorrow to try and get it right) but I have remembered to take all my empty stomach meds! I also managed to put on a dress and leggings and put on a bit of make-up today. I've spent most of the day on my bed either making cards (and then tied up) or putting letters together (and tidying up after myself again, even if it did require a break in between). In between the card making I got dressed (around 2.45pm), rested, made a few phone calls and received a few - rheumatology at UCLH called and they've brought my appointment forward and made it a face-to-face appointment as I sent an email saying that my health has declined and I've managed to get it on the same day I'm at Cleveland Street for the COPE Pain Management intro session so even though it will be a super-exhausting-early-start-late-finish day it just means one trip to London and I can sleep in the ambulance and I have some in the back with me should my body decide to throw a protest. I also did my make-up and caught up on the second episode of Luther which I missed thanks to my seizures. It's much nicer having a tidy bedroom and I'm pleased with myself for keeping it tidying as it's so much more peaceful, even if tidying up is exhausting. I need to find a tidier way of writing letters! I also asked Mandy if she could help me to organise my wardrobe so all my clothes hang in some sort of order to make it easier to find things (that is when I'm wearing human clothes and not pjs!). It's day 2 of my gluten coeliac challenge and even though I'm just eating 2 slices of bread a day it's starting to get to me. I just hope I can last the month. This evening we watched the 3rd episode of Luther but my concentration was atrocious so i may need to rewatch it tomorrow. Right, now Dad's brought upstairs my night time herbal tea for me it's time to get into my pj's and settle down.
Friday 4th January
Spent the morning watching TV in bed.
After Dad got back home form his little bike ride I got washed and dressed and did my make-up.
Uncle Mark and Holly came round for tea. Holly had a cuddle with Flop and then we let him have a run around on the floor.
At 7.30pm I meant some of the girls from church at Starbucks and we had drinks and chatted. We then headed over to the cinema to watch 'Mary Poppins Returns' which was quite good. I've been good with taking my meds today though my bedtime doses where late because I was at the cinema.
When I got home I took my meds and uploaded reviews of Starbucks and the cinema onto Euan's Guide.
I'm now going to get into my pj's and into bed as it's getting quite late.
After Dad got back home form his little bike ride I got washed and dressed and did my make-up.
Uncle Mark and Holly came round for tea. Holly had a cuddle with Flop and then we let him have a run around on the floor.
At 7.30pm I meant some of the girls from church at Starbucks and we had drinks and chatted. We then headed over to the cinema to watch 'Mary Poppins Returns' which was quite good. I've been good with taking my meds today though my bedtime doses where late because I was at the cinema.
When I got home I took my meds and uploaded reviews of Starbucks and the cinema onto Euan's Guide.
I'm now going to get into my pj's and into bed as it's getting quite late.
Saturday 5th January
(Writing this on the Sunday so can't fully remember what I did so I putting in what I'm remembering and i might be a bit disjointed and out of chronological order). I know I managed to get all my meds taken and on time - yay! I also did some letter writing and tidied away after myself. I did do some more clearing out and reorganising. Mandy also helped me sort out my wardrobe. I did go to bed a bit late. I'm planning to hopefully slowly reduce the time I'm actually going to bed so that eventually I go to bed at the time I need to go to bed to give myself enough sleep. Main issue is pain, getting comfortable and getting distracted even though I'm physically, mentally and cognitively exhausted and can't actually focus on what's distracting me. My stomach was also hurting quite a lot. Oh, my Paperchase order arrived a few hours after contacting them asking where my order was. So I spent some time setting up my diary.
Sunday 6th January
Woke up in time to go to church and got dressed, meds and breakfast in time but wasn't feeling 100% and I was quite tired (more tired than when I actually finally went to bed) and feeling unrefreshed. So instead I heated up my wheat heated and curled up on the sofa and watched TV as I knew if I went back to bed I'd be in too much pain with my tummy to sleep, though I did dose on the sofa. I'm trying really hard to eat enough gluten for my coeliac test as its starting to get to me.
I've spent most of the day curled up on the sofa and then early/mid afternoon I migrated to my bed and did some blog updating which took quite a long time.
I've just had tea and yesterday one of nails broke so my Shellac on that nail looks awful so I might take my Shellac off tonight. Dad also suggested watching a film.
Also, my highlight of the day (and rather sad) was Beth giving me a tub of dairy free Ben & Jerry's ice-cream!!! I've always wanted to try it and now I can; I didn't even know the sold it locally!
Film watched, it was called 'Birdbox' and it was really good. I haven't gotten round to doing my nails but it's something to do another day.
I'm now settling into my nighttime routine of putting on my aromatherapy diffuser with 'sleep better' aromatherapy oil, putting on my pj's putting on 'sleepy' moisturiser and an audiobook and sipping on some nighttime herbal tea. I'm trying to get to bed earlier and into a routine with is one of my missions for this year.
I've managed to take all my medication correctly today except one tablet as I forgot to put the timer on on my watch after I'd had some lunch.
Woke up in time to go to church and got dressed, meds and breakfast in time but wasn't feeling 100% and I was quite tired (more tired than when I actually finally went to bed) and feeling unrefreshed. So instead I heated up my wheat heated and curled up on the sofa and watched TV as I knew if I went back to bed I'd be in too much pain with my tummy to sleep, though I did dose on the sofa. I'm trying really hard to eat enough gluten for my coeliac test as its starting to get to me.
I've spent most of the day curled up on the sofa and then early/mid afternoon I migrated to my bed and did some blog updating which took quite a long time.
I've just had tea and yesterday one of nails broke so my Shellac on that nail looks awful so I might take my Shellac off tonight. Dad also suggested watching a film.
Also, my highlight of the day (and rather sad) was Beth giving me a tub of dairy free Ben & Jerry's ice-cream!!! I've always wanted to try it and now I can; I didn't even know the sold it locally!
Film watched, it was called 'Birdbox' and it was really good. I haven't gotten round to doing my nails but it's something to do another day.
I'm now settling into my nighttime routine of putting on my aromatherapy diffuser with 'sleep better' aromatherapy oil, putting on my pj's putting on 'sleepy' moisturiser and an audiobook and sipping on some nighttime herbal tea. I'm trying to get to bed earlier and into a routine with is one of my missions for this year.
I've managed to take all my medication correctly today except one tablet as I forgot to put the timer on on my watch after I'd had some lunch.
Video description
Tuesday: coffee cafetière plunger going down
Wednesday: address book and birthday book being opened
Thursday: mail card being opened
Friday: Cinema ticket to 'Mary Poppins Returns' being held
Saturday: stationary and writing supplies spread out on the floor
Sunday: laptop open on my bed
