My invisible fight with complex and rare chronic illnesses; taking life one day at a time.
Wednesday, 7 November 2018
One Second Every Day: October - 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.