Monday 18th FebruaryUp a little bit earlier than usual.
At 10.30am my nurse from Bluebird and a new nurse to the Bluebird team came to observe and a senior nurse from the community nursing team came to have a meeting to go through the check list for Continuing Health Care.
The meeting took several hours and was very thorough and I now need to spend the next few days emailing and making telephone calls to get supporting evidence together.
I was exhausted afterwards so had a rest and then Dad took me to the GP surgery for my ECG.
I got the wrong time on my text reminder so I was an hour late for my appointment but they managed to squeeze me in but there was a bit of a wait. Whilst I was waiting I went into the pharmacy to pick up a few over the counter things for my sore throat.
Home and had another rest before tea (evening to meal to those that aren't from up north in the UK!).
I'm now resting and I'm just going to have a bath and then chill out for the rest of the evening.
Tuesday 19th FebruaryI went out the garden centre with one of my new carers this afternoon. It was nice to get out and have a different change of scenery. We had tea and cake in the cafe and then had a look around the shop and I bought some letter writing things.
When I got back I had a rest and then typed some letter replies.
This evening I'm really struggling with 'payback' but I'm trying to focus on having a nice day and just resting.
Last week I sent and email to my care agency to say how much I loved the three new carers to my care team and how well they dealt with caring for me (seizures, fainting, falling over, wobbly legs etc) and how I liked that fact that two of the carers could braid hair (yes, my priorities, dealing with my health needs and being able to braid hair) and my carer today said that next time she comes to me she'll braid my hair for me. In the email I also put how much I like my current existing carers. They put the email up on the Facebook page but I'd made a typo and put 'exciting' carers rather than 'existing' - that's voice activated software for you (and not check before you click send). I also copied in the manager of Bluebird and she emailed me back to say how nice it was to read.
Wednesday 20th FebruaryFairly quiet day. I had a ½ hr call with one of my carers so we went and posted some letters.
I was exhausted when we got home so my carer made me a coffee and got me settled on the sofa so I could stay there and have a nap.
I also made some phone calls and sent some emails following my DST meeting on Monday to try and get some supporting evidence. I've also been trying to get hold of my community nurse and she referred me for an airflow mattress but I have a perfectly good pressure relieving mattress of my own at the moment so I'm trying to see if she can change the referral for a mattress topper as the equipment store can't just swap things around themselves; they need the referrer to do it! #NHSpolices!
In the evening I had a few seizures so Dad helped me upstairs to bed and I had an early night.
Thursday 21st FebruaryI went out with my carer today to Louth, more for the drive and to get out of town. I picked up a few toiletries and then as I was passing a charity shop I spotted a lovely cardigan and t-shirt on the window display. There was also a nice corduroy pinafore dress but it wasn't my size. I rarely buy clothes other than jeans when I ware the knees out.
I also nipped into WHSmiths as we don't have one here.
Then I was time to get back home. I think if I'd stayed out any longer I'd have tired myself out.
I rested when I got back; I also called my advocate to see if she could come to my CPA on Monday and to arrange seeing the Practice Manager at my GP practise. I also made contact with the Adult Autism Team as I hadn't heard back from them within the time they said they'd be in touch.
This evening my step-sister and her boyfriend came round for tea and Beth and I talked about makeup and after tea we played a game of Codenames. I wanted to play more games but Dad didn't want me to exhaust myself so I came up to bed and started to settled myself down.
Friday 22nd FebruaryIt's currently 6.04am; I've been up a while unable to sleep even though I'm exhausted so I'm just watching stuff and resting. I'm also feeling like I've got a cold which I always get with PEM. I think I've probably just overdone it lately with appointments and care visits and desperate to get out the house. I've not got anything on today so I can had a sleep later if needed and I have the weekend to rest too. Not week I have a meeting on Monday and I'm at UCLH for 2 appointments on Thursday which the though of I'm not looking forward to but it's got to be done; the rest of the week I just plan to rest and recharge.
Finally felt sleepy around 8am and went back to sleep. Woke up to take my meds at 9.40am and then laid in bed until 10am and too my 10am meds, managed to somehow get myself downstairs for breakfast and then came back up to me bedroom and back into bed.
At 12pm my watch went off to tell me to get a drink which was good I had it as I hadn't had a proper drink all day except dilute juice to take my meds so I went and made myself a coffee. I also decided whilst I was off my bed to get into some comfy day clothes (they feel like pj's but are acceptable day attire).
Had a bit of a meltdown once again - as much as I love my brother because he's my brother I'm glad he doesn't live here. When I went to get my coffee he was making himself some soup which was my free from soup and I was feeling off-kilter anyway so it everything this weeks - Wes eating my allergy friendly food and leaving me with few options left, using my toiletries, both without asking me (I'd be fine with his using my shower gel if he wants to smell like flowers but it's the fact that he never asks me or bothers to check to packet/ingredients to see if it's one of my allergy friendly foods) so yes I had a meltdown because I was tired and I had a bad headache and I was fed-up. We also like his music which he plays loud; its house/rap music so it had a heavy beat so it's painful and overwhelming for me.
Wes did bring up my cup of herbal tea so that is one positive.
I've just spent the day on my bed watching TV and pre-making IG posts to ask people if they're interested in guest writing for various awareness events.
Saturday 23rd FebruaryDidn't post on the day so can't fully remember what I did.
Mandy was at work today and Dad and Wes are in Goathland so I just had a quiet day and wrote some mail and watched some TV.
In the evening it was just Mandy and I so we watched another Alien film.
Sunday 24th FebruaryTired to make it to church in the morning but low mood and anxiety got the better of me.
I opted instead to curl up on the sofa and watch TV. Flop is always good and de-stressing me giving me lots of cuddles and being chatty and his weirdo moments.