- Monday 12th November - I had a nice lay in this morning but struggling to get up. My fatigue levels where quite high and I felt more tired than when I went to bed, well, that's M.E. for you! I had extended pj wearing and watched TV and laid on the sofa. I then summed up the energy to get washed and dressed and got some lunch. I then felt a seizure coming on and debating whether or not to press my CareLink I decided that's what they're there for so I pressed it and the call handler stayed on the line with me whilst I had my seizure and recovered from it which felt very reassuring and he kept reminding me that it was okay and that's what he's there for. I then had a little nap. When I felt a bit better I needed to get on with my blanket as I hadn't done anything on it yet today so I stitched in some squares and also weaved in some loose ends which is a laborious job so though I didn't;t get any squares made it all adds up. I then had to put my crochet down as after tea my stomach pain and nausea flared up big time so I took some meds and curled up in a ball with my heat pad on the sofa watching TV waiting for the meds and heat to kick in as I jus wanted to cry from the pain which is unlike me at all.
- Tuesday 13th November - Due to pain I didn't get off to sleep until the early hours so I kept myself distracted with some blogging and blog admin and watching some stuff on my laptop and listening to a bit of Harry Potter. Unfortunately I couldn't sleep in as I had an home visit appointment at 10.30am only for it to be canceled but I was still in my pjs when I got the cancellation so I stayed in my pjs for the morning and watched some TV and got on with some crochet and had cuddles with Flop. My Birchbox for this month also got delivered which I always look forward to and there's some lovely things in there I can't wait to try out and I'm going to get round this week to get back into making a monthly blog post about my month's Birchbox. I then got washed and dressed in the afternoon and though I was going nowhere I decided to put on some make-up, this took me a couple of hours to do in total - there's no such things as getting quickly washed and dressed and ready for the day when you have a chronic illness but it needed to be done as I have a busy next few days so won't have the energy to get washed, oh the joys of chronic fatigue and payback. Having to decide where best to spend the little energy, high levels of pain and low motivation that you have. I then got something to at and had a lay down on the sofa. I then managed to get my third square crocheted and decided that was my limit for the day. I did set myself the quota of 3 square a day and any more would be a bonus. After a rest I regained some energy to do a little bit of tidying in my room and then it was tea time. After tea my stomach pain flared up again, but thankfully not as bad as yesterday. Dad and Mandy then went out to the cinema. When I went into the kitchen to get a drink I fainted which triggered the impact detector on my CareLink and the lady stayed with me as I came round enough to bum shuffle to the sofa and feel settled enough for her to end the call. I was in quite a bit of pain after my fall but I wasn't up to going to the kitchen for a drink and to fetch my meds, I did manage it after a while but incidents like thins only highlight why I need the extra care and I'm not sure if CareLink document every time I make contact with them as that would be great supporting evidence. I'm now tucked up in bed as I was nodding off in front of the TV downstairs. I'm still in a bit of pain but I'm hoping I'll have a better night's sleep as I have a busy day tomorrow and I need all the energy I can get.
- Wednesday 14th November - Totally overdid myself today. At 12pm my carer came and we headed off to Specsavers and we as in there well over and hour just getting my new glasses sorted, I'm so glad that I didn't;t get my eye test done as we would have totally run out of time. I was planning on heading to the pet store to buy some things for Flop but I was getting tired and we had run out of time. I got home and Mandy put on some soup which she had made for me to do my lentil Low FODMAP trial. I was about to crash out on the sofa when my phone reminded me that I was due at the gym for an induction with my support worker in half an hour so I quickly got myself changed and Mandy thankfully was able to drop me off. I though the induction would just be some paperwork and explanation of the toning suite equipment (assisted exercise machines), but no, it was to try out each machine. My body hadn't had such a work out in about 5 years; each machine runs for 6 minutes, half way round I was flagging and only managed 2 minutes out of the 6 but me being me I pushed myself as I just wanted to get the induction done. Exercise machine just about completed we sat down to make some notes and do the paperwork and book in when I started to feel a seizure come on. Due panic as I was in a new and public place, plus I didn't want the gym to stop me from going. I ended up going into status seizures and an ambulance was called. It took 20mg of diazepam for my seizures to subside. The paramedics gave me some IV paracetamol but I was still in a lot of pain but they couldn't give me anything more as I'd had the diazepam. We then got to A&E and it was the usual long wait to be seen by the Dr; in the mean time I was left in pain and as I was a "complex case" the nurse's could do anything without me seeing the Dr so I was left, as usual in pain. I saw the Dr and again as usual they have very little understanding of my illnesses and also how seizures and hypermobilty don't mix and how I personally present when I'm in pain - outwardly I seem "fine" but inside I shouting/screaming/sobbing in pain. My right shoulder and hip was very lax as that was the side I was having my myoclonic seizures on in-between my tonic-clonic seizures and they're lax without all the time anyway because of the myoclonic/tonic-clonic seizures so they kept slipping in and out causing me the most pain. The Dr ordered some x-rays to make sure they was in place correctly and there was no fractures and they came back okay. As usual the medication plan that the Dr and I came up with got changed by the time the nurse came to me with the meds. I was discharged but still in a heck of a lot of pain so I took some co-codamol then at 10pm I took my zomorph but I ended up still calling GP out-of-hours as I was in a lot of pain despite maxing out on everything I could. They said I could take an extra half dose of oramorph early just to try and get me comfortable. I didn't;t sleep great due to the pain so just sat and watched stuff on my laptop as a distraction and took my PRN meds the every 4 hours I could and I also had my heated blanket on to try and help the pain as my pain was literally just all over - in all my muscles and joints. It wasn't nice at all and it was hard to concentrate on my laptop as I just couldn't;t get comfortable and I just felt so low and frustrated and upset and I was also feeling so embarrassed and I hate fuss and my head just kept going over how much fuss I caused the gym and how embarrassed I felt. Its times like that when I hate being chronically ill and I feel 'sick and tired of being sick and tired' and just wanting my old life back and just feeling so controlled by my health.
- Thursday 15th November - Got up this morning and struggled to get out of bed. My main mission was to get ready to go to my appointment at Orchard Barn at 12pm so it was out of bed, meds, washed and dressed, breakfast, make-up and then out the door. I was running a bit behind schedule but I made it there on time and Dr Sally was running a bit late anyway. I had my follow-up with Dr Sally, I've been on my homeopathic/herbal medicines/food supplements she presribed about 4 weeks now and i've started to notice some subtle changes. Nothing major but less debilitating fatigue, less spasms in my legs for example. I'm giving Intergrative Medicine a try to see if it helps at all and if it does;t work out at least I can say I've tried and I'm trying so so hard to help myself. What I discussed with Dr Sally about the gym is its hard to het a balance between my M.E. and my hypermobilty as the gym will hep my hypermobility but I don't want to worsen my M.E. so I'm going to give it a go; start of doing 1-2 minutes on each machine and build myself up and if it worsens my M.E. again I can say I tried. I also said I've los y confidence with the gym and going out following seizures in public but my support worker is going to go with me the first 5/6 times to get my confidence up going to the gym so hopefully her being there will help. I nearly cancelled my appointment today as my confidence leaving the house took a blow. After seeing Dr Sally I tried something called Bowen Therapy which Dr Sally recommended. I'm not sold instantly on it but it was my first time so I may try it again, the therapist said it usually needs a course of 3 or 4 session to get the benefits. If you click on Bowen Therapy here I've put a link which explains what it is. When I got home I had something to eat and took some pain relief and I had a rest and then did some tidying away in my room and wrote out some postcards. After tea I was starting to crash so Mandy and I sat and watched some Desperate Housewives. I had a migraine brewing so I took some Sumatriptan to nip it in the bud. I've been getting panicky about getting my crochet blanket done on time. I've managed to get 2 squares made this evening. I'm now in bed and I've caught up with this post as I didn't type in yesterday's write up. I'm now going to top up with some more pain relief, just in my pj's and hopefully get some sleep. My CEA card arrived today so I've made plans with Abi to got to the cinema tomorrow evening but I'm looking forward to a day of nothing tomorrow so I can properly rest as PEM is starting to get the better of me.
- Friday 16th November - Quietly productive day. Got up at at 10am after a super bad night. Didn't get of to sleep until about 3/4am due to really high pain levels. I literally exhausted all options - heat, TENS machine, pain meds. I just felt like crying as I was just so exhausted and wanted to sleep but pain had other ideas. In the morning I just chilled out on the sofa in my pjs then got dressed at midday and chilled out for a bit more before getting a wash; then I got something to eat and then did my makeup and then it was time to leave the house. I met me friend Abi in Starbucks for a drink; I went for a caramel frappuccino and we had a long time needed catch up before heading over the road to the cinema. We saw The Nutcracker and the Four Relms. It was good and different to what I expected. It was nice to get out the house. I've been out a far bit this week! Next week is much quieter so I can catch up on some much needed rest. I was struggling to stay awake during the film and I hadn't had chance to nap during the day. Thankfully the film shown was at 6:05pm and it wasn't a long film so when I got home I sat with Dad and crocheted a square which meant I'd managed to make two today as I made on this morning so not quite my three target but better than nothing and then I'm now just heading to bed for an early night.
- Saturday 17th November - Struggled with sleep despite being utterly exhausted due to pain and it was that horrible generalised all over in every bone, muscle, nerve and joint kind of pain and I was just wanting to cry so I had a self-care day. Had a pj morning and watched TV and did some crochet. I've managed to get 4 squares made today so that's caught me up. I was going to sew some squares onto the blanket but I was getting too tired and brain fogged. In the evening Dad and I watched an episode of 'Call The Sheriffs' on TV which was nice as he's been busy writing reports onto of the usual school work (he's a teacher) so I haven't spent much time with him. I had a couple of tonic-clonic seizures today, probably because I was tired and in pain. Just before bed I watched an old episode of 'The Great British Bake Off' on Netflix and now I'm heading to bed.
- Sunday 18th November - Didn't make it to church due to back pain and brain fog and I just knew that I'd be sat struggling to get comfortable and concentrate so I thought staying at home would be better where I could sit with my heat pad and watch some easy watching Bake Off on Netflix that didn't require too much brain power. I had a pj morning then got dressed. Washing was just too many spoons* (* see post on spoon theory). After taking some oramorph for my pain it helped. I just spent the afternoon resting and watching Bake Off and Extreme Cake Makers (I must have been in a cake mood). I keep meaning to bake some fairy cakes as I like the decorating part but I haven't done any baking since I've gone wheat/gluten free and I haven't had the energy/motivation and Mandy/Dad have been quite busy to help me with the oven so there's been an accumulation of factors that stopped me from baking. I also cleaned Flop out. It's very easy and Dad gave me a hand, it only takes about 10/15 minutes and I also YouTubed how to clip his claws so Dad and I did that as they where quite long when we got him so it felt nice to give hime a nice clan cage and a pedicure and he was fairly well behaved for it. In the evening I stitched 10 squares onto my blanket. Getting my blanket out I realised that I hadn't quite done 12x12 squares so I a bit further behind than I thought but I'm still making good progress. I've been feeling a bit low this evening; feeling frustrated at being chronically ill and not able to do the things I used to be able to do and also yesterday there was a meet up of people from the YoungMinds VIK project and traveling to London was just and impossibility for me and there was talk of me saying hello to everyone digitally but that plan didn't happen about so I felt upset and a bit angry as I felt forgotten about and also upset and angry that I couldn't be there in person because of my health so I'm just trying to take my mind off it and not let it get to me too much as one of my downfalls is over-personalising everything. I might make a start on typing some letters if I can't sleep but if not it will be something to do next week to keep me occupied.
Gratitude List...
- Cinema trips with friends
- My family
- Carers and CareLink
- Flop
- Being able to see Dr Sally on Thursday
- Quiet days in where I can rest and recharge
