Monday 13th May
Really struggling with my symptoms lately which is getting to me emotionally; especially knowing that I will always be ill with no end in sight.I had my Bluebird visit. It's so nice that I get on well with my carers and Bluebird try to match carers not just on care skills but also personality and they try to give me carers around my own age and we can chat about normal every day stuff as well as my carers being professionals and helping an supporting me.
I've had a few seizures today so I've felt quite tired and it's not helped with my increased pain and fatigue.
Tuesday 14th May
Still struggling with symptoms. Spent most of the day so far laid on the sofa watching Victoria.
Today's been my usual sofa day (typical day with chronic illness). I managed to do one module of college work. I'm getting a bit stressed that I'm falling behind but if needed I can get an extension.
I called the GP surgery, I couldn't get a telephone appt today and the receptionist spoke with my new GP and he wanted to see me but it will depend on whether I can get someone to take me tomorrow.
Now funding has been approved for Leeds (finally and YAY!) I tried to call Professor Edwards sectary but I couldn't get through so I sent and email. I also called Leeds and spoke to one of the nurses on the rehab unit and she was so lovely and told me a bit about the centre. Unfortunately she could tell me how soon I will get a letter for a pre-assessment or how soon it will take for me to get a bed as they balance out the needs of the patients on the unit but it was lovely to talk to her all the same, and speak to someone who 'gets' M.E. and FND and how frustrating it's been for me with my GP taking so long to send of the funding request (my old GP) and then the lack of support and services and how I only have Professor Edwards and how locally when I go to physio they don't understand the PEM crash I experience after etc.
I had a ½ hour Bluebird call. Even though it was 2.45pm I still hadn't had any lunch as I was too tired so my carer made me a sandwich and we had a walk for a few minutes before the pain and breathlessness flared up but it was nice to be in the sunshine. I just thought a mini walk might help stretch my body after being laid flat mat of the day.
When she left I had a nap on the sofa (tired tired to go upstairs to bed) until Dad and Mandy got home after 5pm.
Apart from tea I've spent most of the evening laid on the sofa. I did manage 10 minutes of colouring a postcard.
Wednesday 15th May
Had an appointment at Orchard Barn for Reiki. Thought I'd just try it out to see if it helps relax me and I did really relax which helped take my mind of the pain.
Mandy got called into work and Bluebird was short of carers so Beth my step-sister was going to take me to the Drs as I wasn't feeling great but Beth had to cancel last minute and I couldn't get the GP to call me at my appt time which was stupid as I had the appt slot to see him so I went and my myoclonic seizures where constant and my speech became really stuttered and slurred but the GP was great. I've started seeing a new GP. He was okay but he didn't address the issues to which I made the urgent appt for which was frustrating as it's another week of worsened symptoms, pain and brain fog. I'm seeing him again next week with my advocate so hopefully she will help me get things sorted. He did however say that he won't mess with my meds and I got my issue with my Promethazine sorted so I can finally say bye to the dizziness and nausea that's flared up since the GP practise messed up and stopped issuing it because of an old message from UCLH (it's a long story). I then had a tonic-clonic seizure which is why I needed someone to take me. I felt upset and frustrated that I couldn't even go down the road to the GP practise on my own without something happening.
We got to the first shop and got my wheelchair out the car then realise that we had forgotten my footplates so we had to go back home and take two. We went to Home Bargains and The Range looking for pretty plant pots but the selection was very limited but I did mange to find one pink one in The Range which goes nice with my grey-lilac coloured plant. I've also ordered a zebra plant pot off Etsy. I just need to find a smaller pretty plant pot but in my plant pot search I saw some crochet ones so I might try and find a pattern and make one myself.
Mandy got called into work and Bluebird was short of carers so Beth my step-sister was going to take me to the Drs as I wasn't feeling great but Beth had to cancel last minute and I couldn't get the GP to call me at my appt time which was stupid as I had the appt slot to see him so I went and my myoclonic seizures where constant and my speech became really stuttered and slurred but the GP was great. I've started seeing a new GP. He was okay but he didn't address the issues to which I made the urgent appt for which was frustrating as it's another week of worsened symptoms, pain and brain fog. I'm seeing him again next week with my advocate so hopefully she will help me get things sorted. He did however say that he won't mess with my meds and I got my issue with my Promethazine sorted so I can finally say bye to the dizziness and nausea that's flared up since the GP practise messed up and stopped issuing it because of an old message from UCLH (it's a long story). I then had a tonic-clonic seizure which is why I needed someone to take me. I felt upset and frustrated that I couldn't even go down the road to the GP practise on my own without something happening.
Thursday 16th May
Had my favourite carer today back from her holiday (I love all my carers but this carer is my primary carer and does the vast majority of my calls) we laughed when we compared arms at her tan covered to my vampire pale skin.We got to the first shop and got my wheelchair out the car then realise that we had forgotten my footplates so we had to go back home and take two. We went to Home Bargains and The Range looking for pretty plant pots but the selection was very limited but I did mange to find one pink one in The Range which goes nice with my grey-lilac coloured plant. I've also ordered a zebra plant pot off Etsy. I just need to find a smaller pretty plant pot but in my plant pot search I saw some crochet ones so I might try and find a pattern and make one myself.
Friday 17th May
Had a good day raising awareness and understanding of M.E. again. First off was a phone call with a staff member from Action for M.E. working on an article together and then a journalist was looking people with M.E. to answer some questions for an article she was doing.
The rest of the day was the usual boring laid on the sofa but I'm making the most of having Yorkshire Tea in the house.
I was hoping for a nice quiet weekend but I've been steady on my feet. I nipped upstairs and coming out of my bedroom I fell. My CareLink went off. I'd dislocated my hip in the fall and a few other joints which I managed to sort out myself, but not my hip. As there was no-one else to call CareLink sent for an ambulance. I was in a lot of pain so my myoclonic seizures started playing up (pain is a seizure trigger for me). With the help of some Entonox we managed to realign my hip.
Once I was settled I shuffled down the stairs (I shuffle up and down them normally) and with help I got to the sofa. My POTS was playing up so one of the paramedics laid me on the sofa so my heart rate could come down and my blood pressure could stabilise.
The paramedics made me a coffee and a hot water bottle and then they called up the Clinical Assessment Team as I didn't want to go to A&E (there was little they could do for me and it would just make my ME and FND worse). The nurse was happy for me to stay at home.
I had to use up all my tumbler of juice for my co-cocdamol (dispersible tablets) so I was just left with some diet coke.
My friend Ai called me and we had a chat which was nice.
My hip was still really painful and it got to around 9am and I knew I couldn't make it to bed. I was in pain, I was thirsty, my continence pad was wet through and to top it off I had a migraine. I pressed my CareLink and they arranged for the adult social care to come out to me. 2 hrs later two carers arrived. They helped me get cleaned up, into my pj's, in bed and settled with a cuppa and ensured I had my meds nearby with a full tumbler of juice.
I felt so thankful for their care but I also felt angry and upset. I'd lost my dignity, my independence, my confidence. My health is so unpredictable and I could have predicted that evening/night. I also felt angry that I can't get a care package from any service to help me have my independence, my dignity, my resell and my confidence and also to feel safe and well.
Saturday 18th May
Dad and Mandy went to Leeds today. I'm not keen being on my own so I set myself up on the sofa so I didn't need to leave. I had my carer 3-4pm and I had a shower and changed my bedding.I was hoping for a nice quiet weekend but I've been steady on my feet. I nipped upstairs and coming out of my bedroom I fell. My CareLink went off. I'd dislocated my hip in the fall and a few other joints which I managed to sort out myself, but not my hip. As there was no-one else to call CareLink sent for an ambulance. I was in a lot of pain so my myoclonic seizures started playing up (pain is a seizure trigger for me). With the help of some Entonox we managed to realign my hip.
Once I was settled I shuffled down the stairs (I shuffle up and down them normally) and with help I got to the sofa. My POTS was playing up so one of the paramedics laid me on the sofa so my heart rate could come down and my blood pressure could stabilise.
The paramedics made me a coffee and a hot water bottle and then they called up the Clinical Assessment Team as I didn't want to go to A&E (there was little they could do for me and it would just make my ME and FND worse). The nurse was happy for me to stay at home.
I had to use up all my tumbler of juice for my co-cocdamol (dispersible tablets) so I was just left with some diet coke.
My friend Ai called me and we had a chat which was nice.
My hip was still really painful and it got to around 9am and I knew I couldn't make it to bed. I was in pain, I was thirsty, my continence pad was wet through and to top it off I had a migraine. I pressed my CareLink and they arranged for the adult social care to come out to me. 2 hrs later two carers arrived. They helped me get cleaned up, into my pj's, in bed and settled with a cuppa and ensured I had my meds nearby with a full tumbler of juice.
I felt so thankful for their care but I also felt angry and upset. I'd lost my dignity, my independence, my confidence. My health is so unpredictable and I could have predicted that evening/night. I also felt angry that I can't get a care package from any service to help me have my independence, my dignity, my resell and my confidence and also to feel safe and well.
Sunday 19th May
Woke up feeling better, thankful my migraine had eased though my hip is still painful today. I managed to get dressed and around lunchtime Dad and Mandy came home.
I've spent most of the afternoon redesigning my blog - if there are any aspects that aren't accessible let me know, or if the fancy and Ariel fonts aren't appearing on your web browser.
I've just done two days worth of college work (catching up from yesterday).
I'm now just about to finish and publish this post then settle down to bed.
Video description:
Monday: Subtitle screed for Victory (TV program) and a building briefly in the next shot
Tuesday: Time lapse video of me drinking out a cactus shaped cup and the drink disappearing fast
Wednesday: Watering my plant
Thursday: pinning a photograph onto my notice board
Friday: Squirting cash wash foam onto a small white flannel
Saturday: photo graph of the ambulance outside - my view from the sofa.
Sunday: Sroll down the screen on my laptop, on the screen is my newly designed blog
