Wednesday 28 November 2018

November 2018 Birchbox

This month's Birchbox's theme was based on Disney's 'The Nutcracker and the Four Relms'.

Inside was...
  • A Spacemasks self-heating eye mask which is infused with jasmine. It was very relaxing and the heat really helped and its something I have already added into my shopping bag to buy and they would also make great gifts.(Full size - RRP £3.50)
  • A Manna Kadar cosmetics Dimond just Roller Eyeshadow in shade Pixie. Its really easy to apply, it can either go on as a solid colour which is like a super glittery pale pink or it can be blended with a brush to add shimmer over your eyeshadow. It can also be used as a highlighter or to add glitter to your lips. A little goes a long way so I can see this lasting quite a while. (Full size - RRP £15) 
  • A Paul & Joe foundation primer. I've not tried this out yet. (sample size)
  • A Polaar night cream, again not something I've used yet. (sample size)
  • A Beauty BLVD Hydra-Gel eye masks - two supplied. I've not used these yet either but I'm looking forward to trying them out. (full size - RRP £8.50)

Tuesday 27 November 2018

One Second Every Day: November 2018 - Week 4

  • Monday 19th November - My carers turned up this morning rather than this afternoon without being notified thankfully I had dragged myself out of bed about half an hour before so I was awake. I just had a quiet day and got on with my crochet (not easy when your having myoclonic seizures!) and made a few phone calls on my to do list.
  • Tuesday 20th November - Had a quiet morning and early afternoon then at 3pm I went to the salon in the village for a massage and facial. I was in a lot of pain in the evening and ended up calling the GP surgery as my pain has been getting worse over the past few weeks so hopefully my GP will call me tomorrow. As the evening wore on my pain got worse and worse to the point I was close to tears which is not like me at all. Litrarally everything hurt - my stomach, my muscles, my joints, my bones and my nerves. Everything. My integrative medicine Dr hd sent me some special herbal digestive tea and Mandy made me a hot water bottle and too some oramorph and I curled up on the sofa watching old episodes of Bake Off on Netflix. Eventually I was comfortable enough to head the bed but it too me a while to get comfortable and off to sleep.
  • Wednesday 21st November - I had my Bluebird visit this morning. My carer turned up earlier than expected. I had a little seizure with my carer, it only lasted a few minutes so I took some pain relief and my inhaler and rested afterwards. I managed to get one box sorted and put away in my bedroom so it's slowly getting tidier. I had a quiet afternoon and Pinterest has also made it easier to organise things so I spent quite a bit of time organising my Pinterest; if only I could do that with my life! Then in the evening I went to church for Week 5 of the Bible study course. I'm really enjoying the course and its helping me to understand the bible better and it nice to ask questions and share ideas with other Christians. 
  • Thursday 22nd November - I really struggled to get of to sleep despite being exhausted and only got off to sleep in the early hours so I did some blog admin. I set up an online form to hopefully try and make it easier for people to submit and share their stories. I also shared all my posts to my Pinterest blog board. I really struggled to get up again and when I got up I was a bit wobbly on my legs and my knee dislocated and my sock slipped and I fell to the floor dislocating my shoulder. Both joints went back in but I was in the kitchen so there was nothing to use to pull myself up and I was too weak to do anything anyway. Thankfully my CareLink alarm went off when I fell and the lady stayed with me as I tried and failed to get up so she arranged for the Rapid Response Team to come out to help me out. They came and I wasn't waiting too long for them and they used a special machine to get me up an got me some of my pain relief and some breakfast and I'm now just resting on the sofa watching TV. My support workers from L&H home was meant to come at 11am but I emailed my support worker to let them know about my fall so she's going to reschedule the appointment. I was meant to meet a friend for coffee but I've rescheduled that too for the weekend as the district nurse was meant to come out to me today but she rang me and she's not going to come today as she was going to do a continence assessment but as I'm already under the continence team it would just complicate matter and she asked me about my pressure sores which are okay at the moment and I said my physio gave me some exercises to prevent them and she also going to make some enquiries about falls prevention like physio as I'm too young *apparently* for the specialist falls clinic so she's going to make some enquiries and get back to me and she said that if I ever have any issues or need blood taking and can't make it to the GP practice to just pick up the phone. My plan is to just rest today and get some replies done on some letters as I have a pile stacking up. I might also do a sticker by number if I feel up to it if I get bored of the TV. Didn't;t manage the sticker-by-numbers but did get a couple of replies written before bed and managed to do some crochet. I now have done 11x14 squares plus 4 sewn on. I'm just hoping I get done on time.
  • Friday 23d November - Woke up with my phone ringing and had a half-asleep-must-have-sounded-drunk phone call with my care co-ordinator. Calling PALS yesterday did the trick in getting contact from him. Finally got out of bed and had a pj morning and then in the afternoon I dragged myself upstairs to get some clothes on. Had a quiet afternoon with my crochet and the TV on in the background (can't quite recall what I watched). My GP called me and I explained how my symptoms have been getting worse and also my pain so he said to monitor how my extra oramorph I'm taking over the next week so he can adjust my zomorph dose. I then got my bag ready and at 5.20pm I began my wait for patient transport. Just when I was on the phone to TASL they turned up. Dad and Mandy are away this weekend for a family get together so I let CareLink know that if there was an emergency it would either be the Rapid Response Tam or 999 if there was any emergencies. My friend who on the ward at the moment came and sat with me in radiology for a bit which was nice as I haven't seen her for ages. I'm hoping to meet her tomorrow in the café. They was originally going to do my CT scan in the mobile unit outside but with my seizures they decided it would be safer to do my scan in the main radiology unit just in case. Thankfully nothing happened but I was getting a bit sensory overwhelmed and because I'd had to fast my blood sugars where probably low so my myoclonic seizures started to play up so it was hard to stay still in the scanner. Scan done it once again on the phone the TASL to let them know I was ready to go home the crew turned up. Once I got home I got myself a snack and watched some TV. I always hate it when Dad and Mandy are away. I literally glue myself to the sofa to prevent any incidents like falls and I know I'm safe there should I have a seizure. I was considering sleeping on the sofa but I've manage to get myself into my pjs and into bed so I'm just going to settle down with some Netflix as I never sleep well when I'm alone and I can't put the burglar alarm on as Flop sets it off!
  • Saturday 24th November - Struggled to get out of bed as usual but needed to be up for my carer coming at 11am. Carer came and went and I had some lunch, did my make-up. I'd love to do my make up more but it takes such a lot of energy to do and it's trying to find ways of holding the brushes when your hands are in spasm. Anyway, running late I met a friend for coffee. She's currently in hospital so we met in the hospital cafe and then we went up to her room on the ward and spent ages catching up. I was starting to get quite tired so I headed home. I took my meds and got some tea on and settled down on the sofa. A little later on I started to feel a seizure come on; I'd been twitching (myoclonic seizures) all afternoon, so I pressed my CareLink. I had several tonic-clonic seizure episodes but when I did come round I was in rigid spasm from head to toe and having full body myoclonic seizures and I was in a heck of a lot of pain and I couldn't move to get any pain relief. Thankfully my bag was next to me so I managed to get my inhaler but I couldn't get my pain meds. The seizures and spasms continued and the lovely lady on CareLink stayed with me and then she arranged for an ambulance to come out to me and she stayed with me until the paramedics arrived. I'm full of gratitude for CareLink. The paramedics arrived and I was insistent that I didn't want to go to A&E. They got me on some Entonox for the pain which helped and then they got me some of my co-codamol made up and once the pain settled they helped sit me up and they when the pain and spasms eased some more they got me onto the sofa and we went through the paperwork. They did my obs - blood pressure, temp, pulse and O2 levels, blood sugars, ECG etc. They wasn't happy for me to be home alone, just in case I had more seizures but also because of the side effects from the Entonox so I got them to call my step-sister. Throughout this whole things my seiche had totally gone weird. My stuttering and loosing words was the worst its been. Once the paramedics where happy with things they left me with Beth with instructions that if I did have any more seizures to call 999. I did have one small seizure after they left but we decided not to call 999 as it was only a little one but if they got worse we would follow their guidance. Beth was brilliant; she made me a hot drink and helped me with my meds and taking things upstairs and when I felt settled I let her get off home and I went upstairs to settle in bed and watch some Netflix.
  • Sunday 25th November - I slept for pretty much the whole morning. pain wise I've struggled today. I't not been acute pain but just that horrible background pain that won't go away. Crocheting helped and I get 4 squares made and quite a few sewn onto the blanket. In the evening I had a seizure/spasm episode but Dad and Mandy was home by this point. I'm now settled in bed exhausted so I'm just going to play some Netflix and hopefully get comfortable and nod off.

Gratitude List...
  • CareLink, the NHS, Bluebird, the Rapid Response Team and TASL
  • Coffee and catch-ups with friends
  • My stepsister Beth

Monday 19 November 2018

One Second Every Day: November 2018 - Week 3

  • 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

Monday 12 November 2018

One Second Every Day: November 2018 - Week 1 & 2

  • Thursday 1st November - Quiet day in the house. I didn't really get up to much. I summed up the energy to have a bath and used a Lush bubble bar that I hadn't bought before and it smelt amazing. I was pretty wiped out after my bath so I just rested. I did a few admin things like booking patient transport for my Dietician appointment and for my appointment in December for the Pain Management programme. I'm making good progress with my crochet blanket which feels good.
  • Friday 2nd November - I had my appointment with orthotics today at the hospital to get fitted  out for a knee brace which will stabilise and support my lax knee which likes to slips of places which should hopefully reduce my falls.My right knee is the worst so if that helps the lady said they could get me one for my left knee too. She asked me what sort of dislocations I have so she could find the best brace for me and she showed me a few possibilities in a catalogue. It will be a hinged on so I will be able to bend my knee as I thought It would keep my leg straight which would be a total inconvenience when trying to walk and when i'm sat in my wheelchair! I'm not sure yet what brace Im getting as she was going to contact the company to ensure I had the right brace and that it was latex free, which I'm guessing it will be as I can't see a need for latex in a knee brace, but then I had to obtain my own wrist braces as the hospital couldn't get me a guaranteed latex free ones. I then made a follow up appointment to collect an fit my brace but I'm going to ave to wait until next year as they're so busy which was a bit frustrating, but understandable. I then got home and was exhausted so I had a lay down on the sofa and accidentally nodded off. I spent the rest of the evening crocheting and watching TV.
  • Saturday 3rd November - My postcard that Dad and Mandy  sent me from Vatican City arrived today. I had my usual Saturday lay-in and just spent the day watching TV and crocheting and resting.
  • Sunday 4th November - Made it to church this morning. There's something that's been weighing heavily on my mind and heart so after church had finished I spoke with a couple of friends at church about it which helped. I got home and was pretty tired so I had a nap after getting something to eat. My nails where also in separate need of sorting out as my Shellac needed taking off but I just hadn't;t gotten round to having the energy to doing it. I did want to reapply my Shellac but two of my nails had spilt really badly and i felt gutted as whilst I had my Shellac on they grew really nicely so I put some nail strengthener polish on and will Shellac them when they've grown a bit.
  • Monday 5th November - Had a nice quite day in to myself so had the opportunity to have extended pj wearing without getting moaned at to get dressed. My energy levels where okay-ish today so I took the opportunity to catch up on my crochet and crack on with it as feeling the pressure to get it made despite making good progress with it so far.
  • Tuesday 6th November - I had my second appointment with my support workers from L&H Homes and we made good progress. They contacted the CCG to find out about my special funding request for my rehab in Leeds as the referral was made November last year and I still haven't heard anything about it. hey also go on the phone to adult social care. Initially the lady on the phone was extremely rude which shocked my support worker who was new to the role and she said hat in all her 25 years of working she's never been spoken to another professional like that, but then my other support worker called up and got the same lady which she'd had run-ins before with and the lady on the phone changed her tune and hopefully I'll be getting a CareLink finally after so many years of requesting it and also an occupational therapy assessment. Social Care don't deal with Continuing Health Care assessments so they've taken down the details of some of the people in my care team like my district nursing team, but I feel ultimately that (when they get round to organising themselves!) it will be the Complex Care Team who will deal with that. We also made plans to go to the gym next week for an induction to use the toning suite. When they left I called the sectary of the Complex Care Team only to find she had left and the manger was suppose to call me but didn't. I then got myself a quick something to eat and then TASL (patient transport) turned up to take me to my appointment wit the Dietician. It was a dietician I hadn't met before but she was lovely and we spoke for ages and it was a really helpful and positive and productive appointment. The Low FODMAP diet is going well and I said I've had to take the reintroduction slower and she recommend adding some seeds into my diet and gave me some liquid nutrition recipes for when I'm struggling with solid foods and in the new year I'm going to start back having some wheat and gluten in my diet to be tested for celiac so I'm not looking forward to that as when I tried to reintroduce it it didn't agree with me, but I'll give it a go. I also spoke with her about how nutrition plays a part in my dysautonomia and how i'm trying to have smaller meals and have more salt and she's going to ask my GP if he could possibly prescribe me electrolyte solutions and also let him know about the celiac food trial.  When I finished with the dietician she called patient transport to collect me She made me a coffee and sat with me whilst we waited for transport and I explained if there was a wait for transport I was to be referred tot he discharge lounge. Thankfully the crew that brought me turned up before I had time to finish my coffee (but they let me finish it). The appointment was only meant to be half an hour so the transport crew that brought me had been and gone to collect me and hd gone to the discharge long to see if I was there too. I've worked out a system of how to get patient transport to pick me up wit having t wait too long and since I put in complaint about the wait and them putting in a care plan to say I go to the discharge lounge the I have nurses around I've barely had to wait at all for transport and I've all the crew members I've ever come across have been brilliant. When I got home I also called my care agency's nurse for a catch-up and to let her know about the Complex Care Team as she's been dealing with that side of things for me a lot so she's going to chase that up and also my neurologist as I haven't had a reply to him from the email I sent him a while back. 
  • Wednesday 7th November - Got and abrupt wake up. Set my alarm for 10am to get up and get my breakfast fr my carer to come at 11am. Instead my carer turned up at 10am and the office didn't tell me so it took me a while to get my body functioning so my hope to pop out went out the window. I also got a call from Care Link and they're going to come and install the system tomorrow. I've been waiting years for that to happen and it will give me some peace of mind for those 'just in case' emergencies, hopefully I will rarely need it. My Amazon order also came so I've got 3 more people's Christmas presents sorted, though for one person I'm going to try and handmade a little something. I had a bit of a letter writing session and in my usual fashion I had stationary chaos on my bedroom floor. I didn't get round to doing much crochet as the afternoon just went so quickly. In the evening I had my bible course at church. I got home and was shattered so I had a tidy of my bedroom and did a few things on my blog and now I'm just going to get off to bed.
  • Thursday 8th November - Carelink came this morning to install the system. It's been really cold today so I've been hugging my heat pad. Mid afternoon I had my ½ hour care call so we went to the Post Office. I gave my carer a bit of a scare when I fell to the floor. I was exhausted when I got back and ended up having a sleep on the sofa. After tea I finished off my crochet and now I'm heading to bed.
  • Friday 9th November - Not such a good day seizure wise. Woke up not feeling 100% and struggled to get out of bed and then had ⅔ tonic-clonic seizures at breakfast. I then just spent the day on the sofa trying to get a bit of my crochet done. Around half 2 the home library lady came with some more audiobooks and we had a nice chat. Volunteers and services like that are a bit of a lifeline when you're more-or-less housebound as a0 you're still able to access services like the library in an around-about way and the library I have a link with someone at the library who's good at getting new audiobooks in so I've requested two that I've found are on Netflix and I've found out where originally in book form - 'Pretty Little Liars' and 'The Haunting Of Hill House' and b) it's social company and I always have good chats with the volunteer that visits me. In the evening after packing the shopping away I felt another seizure coming on so I just got myself on the kitchen floor. This was about 4.45/4.50pm and thinking Dad would be home soon I didn't press my CareLink. At 6.35pm approx I started to come round from my seizures. Dad was home. My jerking had triggered my CareLink as I was wearing my alarm on my wrist but Dad was around to tell them he was handling things. I'm' not sure what time Dad got home so I have no clue how long I was on the floor alone for. I'm unsure in future wether to press my CareLink just in case, even if Dad is just 5 minutes away from home or an hour from home as it's so unpredictable when he will be home? I just don't want to feel a nuisance to them, especially as I have so many falls and daily seizures. But then on the other hand if they document all the calls it can be evidence. When I cam round a bit more Dad got me some pain relief and put my tea on and helped me to the sofa. I was still in a lot of spasm after eating and I desirably tried not to throw my tea at the wall(!) so Dad got me some diazepam. We watched a film which was nice and a good distraction. Mandy was looking at my wrist alarm and accidentally set it off, oops! At least now its peace of mind to know help is there when I'm alone and hopefully with time I will get the funding for more care. Anyway, I'm exhausted and in pain so I'm going to settle in bed with some Netflix and hopefully the pain relief I've just had will help so I can get comfortable.
  • Saturday 10th November - I had a nice lay in this morning and found it hard to get up. I woke up feeling more tired than I went to bed. Dad and Mandy had gone out for the day so I was able to have extended pj wearing and then I managed to get washed and dressed before Beth my step-sister popped round briefly to drop off some clothes that she needed Mandy to mend. I then 
  • Sunday 11th November - I accidentally overslept this morning but still managed to make it to church. The aversion was spent not doing much, mostly just TV and crochet.

Gratitude List...
  • My family, support workers and carers
  • The NHS, NHS staff and Patient Transport and CareLink
  • Making good progress with my crochet
  • My church, faith and church friends
  • Having okay and good days and getting through my bad days

Sunday 11 November 2018

GUEST POST & POEM by Janice about her journey with Anorexia and giving hope and awaeness

I cry myself to sleep most nights not knowing what to do, but then I stop and think a while the words "I need you". My mother often tells me she needs me by her side back to the girl I was with my bubbly happy smile. I often stop and watch a while the normal world I see, and think of all the reasons why normal don't suit me. Why am I the way I am, why won't it go away, I hope and pray that someday soon the pain will go away. But all I can do is wait and see just what my future holds and take each day, each hour, each step each single thing life throws. I hope someday that I can say the demons have now gone, but until the time that this day comes i sure will battle on.
I have battled anorexia, depression, suicidal thoughts for years now. But I'm trying my best to recover, to live a "normal" life. I was doing my nursing degree when I became very ill with anorexia and had to be hospitalised. Since then I've had many admissions with my last being told that they didn't know how I survived. My organs were shutting down, I was totally bed bound with a nurse sitting at my bed 24/7 in case my health deteriorated as I was at a high risk of cardiac arrest. But thankfully my body fought back. I began to get stronger and could see a glimmer of hope.

I'm a lot better now but I can't say I'm fully recovered as recovery is a very long journey but I'm out of hospital living my life to the best of my ability and fighting the demons in my head every day. 

To anyone who thinks anorexia is a lifestyle choice, a fad I can say it most definitely is not ! It is a potentially fatal mental illness that tortures you every second of every day it takes over your brain tells you your fat, you don't deserve food and it eats away at you until your are too mentally and physically ill to fight back and it won't stop until its consumed every part of you. It would like all of you and it won't stop until it gets what it wants! 

For anyone who is suffering from an eating disorder I urge you to get help right now no matter what weight/age/gender you are. You don't have to be skeletal to suffer from an eating disorder. One thing I will also say is anorexia is not glamorous you think you will lose weight and be beautiful but your not your only an empty shell consumed by the demons. With anorexia you feel like you are in control, losing weight is something your good at you get happy every time that number goes down but believe me that happiness is short lived and no matter how low the number is it will never be low enough, you will never say ok I can stop now because by this stage anorexia is the one controlling you!! 

Wednesday 7 November 2018

One Second Every Day: October 2018 - Week 4

  • Monday 22nd October - Had a nice quite day in. Had a lay in in the morning as still not sleeping well. Flop was very talkative today and he's enjoying the greens leafy bits off the carrots from the garden. Leg spasms have been playing up today so when I had my evening care visit I decided to make a quick trip out to Tesco for the short walk as I spend most of my day on the sofa cooped up in the house and I picked up some flowers and some mini plants for my bedroom.
  • Tuesday 23rd October - I'm not having a good day health wise. My headaches have been getting worse and so has my muscle pain and spasms. My carer suggested making an appointment to see the GP and I managed to get one this afternoon. It was a struggle to get there and I crashed out when I got home. There wasn't much she could do except give me another prescription for my anti-sickness meds and she also ordered a head and neck CT and will go from there once the results of that are in. She couldn't;t increase my Baclofen (muscle relaxant med) as I'm already on a high dose. I managed today delisted not feeling great to get a couple of squares made and sew onto my blanket. I now have 99 squares sewn on and 5 squares ready to be sewn on once I have more made.
  • Wednesday 24th October - Still not sleeping well. I'm struggling to get off to bed and then I'm waking up in the early hours and can't get back off to sleep so I gave myself a lay-in. I've been really struggling with my mood, veering into depression and reached out to mental health services this morning. My care co-ordinaotor want available so I spoke with someone else and hopefully my care co-ordinator will call me tomorrow. When my carer came we nipped off to the co-op to post some letters and I also spotted some dairy free ice cream and fancied jelly and ice cream which is a comfort food of mine. Unfortunately things then went a bit pear shaped. I had a seizure in the bath and then a couple more on my bed. When we then got downstairs I went into status seizures so my carer called for an ambulance. The crew was too busy to try and treat me at home so off to A&E we went. As usual A&E where pretty rubbish at dealing with my pain and understanding my illnesses. Due to the pain my myoclonic seizures where playing up and with my shoulder joint being so lax due to my hypermobility is was very painful as it just kept slipping in and out and trapping a nerve. Thankfully this time they allowed me to stay on the Entonx for longer  thank last time I was in A&E which helped but they just ended up giving me oramorph which I have at home anyway so it felt a bit pointless despite me trying to help the Dr out recommending what’s helped in the past when I’ve been in high levels of pain beyond oramorph. Thankfully I had my Uncle and his girlfriend Holly with me as Dad and Mandy are away and i the end we decided it would be best for me to go home and have my carer come at 7.45pm rather than continue waiting around in A&E as they wasn't doing much. They brought me home and got me something to eat and then my carer came and i had a little bath the get rid of the "hospital yuck" and into my pj's and settled down at home. I distracted myself with a bit more crochet and now I'm about to head off to bed.
  • Thursday 25th October - Had a nice chilled out day and had an almost lay-in. Worried my uncle as I'd put my phone on do not disturb to sleep and I ignore the landline phone as we get so many cold calls so he came rushing round to check I was okay. The rest of the day has been spent just chilling out with Flop, crocheting, writing a couple of letters and watching TV.
  • Friday 26th October - Nice chilled out day. Had a seizure in the morning but it wasn't a major one but I remembered to let my Uncle know. I said bye bye to Flop as he went back home at lunch time. In the afternoon I had an appointment at De Lovely in the village and had a hot stone massage and facial which really helped with my pain. I got back to my Lush order as I'd treated myself to some new bubble bars which I love and they last ages as they can be broken up and I also treated myself to a warming massage bar and a night time moisturiser which was recommend to me. I chilled out for the rest of the day and got some crocheting done and I'm making good progress on the blanket. I put some of my new 'Sleepy' moisturiser on when I put my pj's on and it smells heavily and the scent just keeps on going and it has a little shimmer to it too.
  • Saturday 27th October - Not much going on today. I mostly just spent the day pacing myself through rest and watching TV as I crochet. I recently signed up as a member for Action for M.E. as I've found being members of other organisations linked to my illnesses helpful, especially some the features in the magazines, plus it all helps the organisations and their work, so today my membership pack arrived along with some other bit os snail mail. In the evening Dad and Mandy got back home and they brought me back some postcards. I enjoyed having my own little routine whilst they was away and the independence of having that little routine and being able to do my own thing but I was glad to see them.
  • Sunday 28th October - I woke up feeling not well at all. I was more tired than when I went to be and my whole body ached; not something I wanted before a hospital appointment in London the following day. I basically have sent the whole day curled up in a ball on the sofa with my heat pad, struggling to concentrate much on the TV feeling utterly brain fogged.
  • Monday 29th October - Big early start to the day as I was up at 3.30am ready for Patient Transport to arrive at 5am to take me to UCLH n London for a Gastric Emptying Study (I did try to get the test done locally but I would have been a l-o-n-g wait and I was told I'd get better care in London. I'm glad I didn't get up at 4 am I needed that extra half hour, saying that though the crew was almost an hour late. Thankfully we got there in time, just. It was an uneventful journey there, I mostly just slept on the stretcher and Andy who was in the back with me thankfully liked the heat too so we was nice and toasty warm. I then got to UCLH and we got directions to Nuclear Medicine. I didn't have to wait long before I was called into the scanner room by a lovely and very helpful radiographer. I then ate some not-so-yummy radioactive porridge and I was then helped onto the bed and was wheeled under the scanner and I played there for several hours whilst my stomach emptied. I think must have nodded off under the scanner and I was glad I brought a blanket as it was quite cold in there. Once I was done I was told the results would be sent to my consultant (I did ask to see the pictures but not such luck) whom I'm seeing in February back at UCLH. I then went an got myself a coffee in the café and a very lovely lady who was 95 and very spritely and independent came and sat at my table and we chatted and she told me her life story from her job in the war to the plumber repair guy that come to fix her shower. I then called Andy to come and pick me up. The journey home wasn;t as successful. I had about half and hour of seizures, probably because I was tired, a bit too warm, in pain and my stomach was cramping up and my blood sugars where most likely on the low side - all things that singularly can cause seizures in me. Thankfully Andy was brilliant at looking after me. We got home just before 8pm so to was a very long day and I went to bed early.
  • Tuesday 30th October - I had quite a lay in this morning and I got a phone call from L&H asking if I was free that afternoon for them to come round and do the assessment they was going to do last week before I went off to A&E. They came and it was an an initial introduction and then quite a bit of paperwork to get through but hopefully it will lead to me getting a support worker to take me to the gym and also some advocacy with things adult social care and getting a needs assessment with an OT as well as a Continuing Health Care assessment. I then just spent the rest of the day recuperating from yesterday and catching up with my crochet.
  • Wednesday 31st October - Had my Bluebird visit this morning and went to go and get my flu vaccination then my carer dropped me off to see my care co-ordinator to go over some paperwork. When I got home I was pretty exhausted so just crashed on the sofa and rested for the rest of the day.

  • Gratitude List:
    • The NHS
    • Patient Transport service
    • Flop the guinea pig
    • Charities like Action for M.E.
    • My carers and support workers
    • My family

    Thursday 1 November 2018

    Temporomandibular Joint Disorder

    Temporomandibular Joint Disorder (TMJD or TMD) is a condition that affects the muscles and joints of the jaw.

    Symptoms include:

    • A clicking and grinding noise 
    • Pain around the jaw joint and muscles
    • Ear pain that can spread to the temple and cheek
    • Stiffiness and difficulty opening the mouth
    • Headaches/migraines
    • Neck pain 
    • Lax subluxations or dislocations
    There are a number of causes which include:
    • Clenching or grinding the jaw - most people do this in their sleep or when stressed
    • Injury
    • A uneven bit
    • Or other medical conditions, in my case Hypermobilty Spectrum Disorder 

    There are a number of treatments such as exercises and wearing a brace, both of which I do. Lifestyle changes can also help such as avoiding certain foods or cutting certain foods up into smaller pieces, relations techniques such as applying heat, pain relief medication.