- Saturday 1st December - Bad M.E. day; I think Thursday is catching up on me (see blog post 'One Second Every Day: November - Week 4'). Thankfully I was able to have a lay-in and I sleep in until 11am. I've had restful day as I've been very tired and in a lot of pain so I've just watched TV (an accidentally fell asleep) thankfully I managed to get my quota of crochet done today. Dad also washed my hair for me so that feel nice as it's been needing to be done but I just haven't had the energy to do it myself as I've been going through a bit of a relapse lately and on Wednesday I decided to go out with Rosie instead of stay in and get her to wash my hair. I also made a post on an FND support group about my experience in A&E on Thursday so the past few days I've been inundated with support and comments. Dad's made a complaint about the conversation he had with he Dr and next week I'm gong to look at making a complaint to the CQC/CCG as in the past Ive gotten no where with PALS but it's nice to have received so much support.
- Sunday 2nd December - I barely slept last night and didn't get off to sleep until about 4am but I woke up in time to see if I could make it to church but decided I'd be pushing it and I didn't want to push my too far and make myself ill or have a seizure etc so I opted to stay at home and watch some TV on laptop and portly fell asleep mid programme so that kinda answered that questions for choosing to stay home. In the afternoon I just got on with my crochet and just had a chilled out day trying to recover and look after myself.
- Monday 3rd December - Third bad M.E. in a row. Rather than set my alarm on my phone I though my medication alarm would suffice. Unfortunately it didn't. Normally I set two alarms one to wake me up and the second to ensure I don't fall back to sleep. My alarm on my medication box did wake me up but I fell back to sleep again waking up with a notification on my phone at 12pm so I must have needed to sleep! I got up and had my meds and got something to eat and then just watched TV whilst I got myself in to day mode. I then had a wash and got dressed (which took up precious energy and took a great deal of effort) as I'd said to my Uncle that he could pop round around 2pm and I didn't;t still want to be in my pj's. At 3pm my carer came for a ½ hr call that my care agency are generously offering me for free for the time beings as I've been quite lonely and low in mood. We changed my bedding and my carer hoovered my floor and then we made a quick trip in the car to the post office to post some letters and get some cash out. I've made good progress with my blanket today getting one row done, unfortunately I stitched it on the wrong side but when we measured the blanket on double bed in the spare room we realised that I'd need to do another 3 rows to make it a double bed blanket size so I've ordered more yarn and I'm feeling pretty panicked that I'll get it made in time. The evening was spent having a prolonged seizure. I felt it coming on and laid myself on the sofa but I somehow managed to mid tonic-clonic seizure fall off the sofa with a crash landing on my front so Dad and Mandy turned me onto my back and cushioned me on the floor until I came round. I dislocated my shoulder in the seizure (nothing new) so that's feeling pretty sore. My speech has been stuttering lately post seizure. Once I'd fully come round I got myself upstairs but had a fall on the landing on my way to the bathroom. I'm now tucked up in bed and hopefully I'll have a good night's sleep.
- Tuesday 4th December - Woke up relatively okay today. I've mostly spent the day cracking on with my crochet and have managed to make 5 squares today so feeling pretty proud of myself. I've also made some phone calls and have contacted the CCG regarding A&E. I also got a phone call from my district nurse to let me know that my referral to the falls clinic fell through as they only take on people over the age of 65 which was very frustrating as it felt like I was being told that I was too young to be having falls even though I've had 2 today. So I called the Care Plus Group to log most (sort of) complaint as I didn't feel it was fair that I was being denied a service based on my age and I'm sure there are plenty of other under 65 year old in the area that have falls for whatever reason and the lady I spoke with was very understanding and is going to speak with he relevant person and someone will get back to me. The evening was spent not feeling 100% and seizure-isa and I was home alone but it felt reassuring to know that CareLink was there should I need them. As soon as Dad and Mandy came home I settled myself in bed.
- Wednesday 5th December - Struggled with getting up today and wasn't feeling great. I was planning on going out to pick up my pottery painting bits but I just felt awful so I called Bluebird and asked if my carer could pick them up for me and then make her way to me instead. I also had a new carer shadowing and she was lovely so I hope to see her again. With my care agency I have a 'care team' so a team of regular carers that know me and I know them. My M.E. has really been getting to me the past few weeks, especially the past week with my symptoms flaring and PEM being worse than usual. The afternoon was spent crocheting. When Dad got home from work he made tea and then we watched something on TV. My GP called me and is increasing my zomorph dose as my pain has been worse but we're starting small as I didn't want to whack it up right away. I also have the COPE Pain Managment program for my hypermobility starting on the 13th and I'm seeing Professor Edwards next month and I'm going to prompt him for that M.E. referral he said he'd make when I last saw him and hopefully he can help me with my pain too. I've also ordered another Christmas present so other than my brother that's all my Christmas shopping done. I now just need to get wrapping and posting as I received my first Christmas presents in the post today from my pen pal Olivia. I have stomach ache so I'm sipping on some herbal tea. Because I'm not feeling 100% I've had to give the bible study group at church a miss but someone is going to send me the link to the video so I can watch it at home. My plan is to get as much crocheting done as possible and try and get and early night as since my M.E. flare I've not been getting off to sleep well. It's so ironic with M.E. that during the day you're so fatigued yet you get sleep reversal and are a total insomniac at bedtime!
- Thursday 6th December - Woke up relatively okay-ish but I did have to drag myself through the morning. I was in day mode by the afternoon. I watched some television which took a bit more concentration today. I did some crocheting, I haven't achieved as much as I have been doing lately but I've accepted that that's okay and each square is a square closer to finishing the blanket so I can get the border done. I had a nap after tea. I also started watching some YouTube videos which was much easier than concentrating on a whole TV program and I set up my YouTube channel which I'm giving a whirl.
- Friday 7th December - Had an accidental lay-in this morning. Not done much today. My hairdresser came round just after 2pm. Most of my energy is going into crocheting at the moment which is taking its toll on my wrists so I've got my splints out again to just give my writs a break. I'm enjoying rediscovering YouTube especially Jessica Kellgren-Fozard and Doctor Mike. I had a few tonic-clonic seizures when I was home alone but I pressed my CareLink and they stayed with me an called Dad who was on his way home and then when Dad got home he was able to help me get sat up, comfortable and give my meds to me. I had a bath before bed (I'm currently in bed now ready to get some sleep) and my dysautonomia went a bit crazy and my fatigue shot up (I'm feeling better for laying in bed and things have calmed down a bit but I was close to tears with how tired I was). Right, now time for bed.
- Saturday 8th December - Didn't type this in on the day so my memory of the day is a bit hazy. Had a lay in and spent most of the day flitting between crocheting squares and resting/napping. Pain wasn't great so looking forward to Monday when I start my increased dose of zomorph. Crocheting is a good distraction from the pain but at the same time it's really affecting my wrists which get a bit floppy and weak after a while so I've been having to put my braces on a bit more.
- Sunday 9th December - Managed to make it to church this morning but I was shattered when I got home so I went for a nap for a couple of hours. I then cleaned Flop's cage out as I didn't get it done last weekend/earlier this week. My dizziness and racing heart has been playing up today resulting in a few fainting episodes when standing up. Mandy helped me wrap some present up as they was awkward shapes. I then got a few squares crocheted and sewn onto the blanket before heading to bed.
- Online support
- Carers, CareLink and my Dad
- My wrist braces
- Being well enough to go to church
Monday, 10 December 2018
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