- Monday 17th September - Had a bad day at group therapy today. I was in so much pain with my ribs but I was worried about my attendance so I went in all the staff but one was in today and that member of staff a) was filling in as she's usually only part-time in the programme and b) we don't quite see eye-to-eye. At lunch the pain got so bad I wanted to go home but my journey home was booked for 3.15 so I didn't have long to wait so decided to take some co-codamol to see if that helps. In the afternoon I was so tired from the pain and not sleeping well that my head bobbed a couple of times but I stayed focused and apologised and let everyone know that I was focussed and could relay everything every said in group. After the day's group ended I got quizzed about what meds I took at lunch and got told I was on too many sedating meds (even my mebeverine was as its an antispasmodic which drowsiness isn't even a side effect but according to her in all her wisdom it was) and how on the ward my seizure meds are used to sedate patients and I shouldn't be on so many medications. I kindly pointed out that I was tired because I was in pain and I hadn't t been sleeping well due to the pain and that i have M.E. which causes chronic fatigue and I take my clonzepam for my seizures; not for sedation and kindly pointed out that she was a social worker and not a dr so she couldn't t pass much comment on the medications I take for my physical illnesses. Her response was hat she's been in this job for years, which really didn't heave anything to do with our conversation. When I got home I had a nap and rested for the ret of the evening and had an early night.
- Tuesday 18th September - This morning I woke up feeling seizure-like and true to my premonition I had a cluster of seizures that morning. Thankfully Mandy was still around and she called in sick for me. Later I called up the group therapy and spoke with "that member of staff" as it was still just her and she told me that I sound't be coming to therapy under the influence of so many stating medications (aka medication that have the possibility of making you drowsy) even though I've been on my meds way before I stated the group and not increases to dosages have been made in some time and I've been on the colnzepam since November, plus everyone within the group is on anti-depesseants and/or anti-psychotics which do make you sleepy, tired and brain fogged (!) though i didn't say this. So basically she's put my programme on hold and she is going to speak with the other staff when they're back and then call a meeting wit Dad and myself. The only other treatment option for me is the DBT community programme but according to this member of staff I can;t do that whilst I'm sedating mediations which will leave me with no mental health support which is totally unfair as I didn't;t ask to be chronically ill, especially the M.E., or need to take medication to manage my symptoms and I've racked my brains and there's nothing I can come off without detrimental effects and in my past two medication reviews - one with the my gastro consultant and the other with th pain clinic they're happy for my meds to stay as they are as they're dong their job in keep my symptoms as stable as possible. It was kind of a relief to have the day off from the group as I was still in so much pain as I was able to rest in the morning in my pjs and have a nap then get dressed before having lunch and just listen to my body and pad myself and have another nap in the afternoon.
- Wednesday 19th September - Spent This morning I got up and ready and my hairdresser came round to cut my fringe before I sorted looking like Doogle the dog. I then spent my time getting ready before heading to the salon for a massage as my backs been hurting; I was a it worried about laying on my front with my ribs but I wedge a towl under me and it hurt but I tried to focus on the treatment. By the end I was in so much pain. When I got home the pain was immense and I didn't feel well at all; I eat sick and had a migraine brewing so I took some medication and went for a nap for 2 ½ hrs. It was Bible Study tonight and I really wanted to go so I though "I'm only juts going to be sitting down for it" and the nap helped a bit. Dad and I had tea and then he dropped me off at church and I'm glad I went as it meant I could keep up with the course and it was a nice distraction. When I got home I went to bed.
- Thursday 20th September -
- Friday 21st September - Not much going on today except my appointment with the Wellbeing Team in the morning. In the afternoon I did a bit of crocheting and had a little nap. I was so cold today so had a bath late afternoon just to warm up and then I got ready and Rick came round and we had tea and played a game of 'His and Hers' (the girls won!), Fix and I ten took out cups of tea and watched a couple of episodes of X-Files (recently got him into it!
- Saturday 22nd September - Had a leisurely morning and got ready and did my make up. Rik came round and we went to a local art gallery open event in the village; one of the ladies is an old family friend. The other lady holds classes and 1:1 sessions so I picked up some tips to get back into my art and I think I'm going to take up some tuition to build up my portfolio and get me back into my art and textiles again which we be nice. Rik and I then went back home and we just chilled and watched a few episodes of X-Files and had something to eat. When he left I kept X-Files on as a change as my problem is that I get into a show and it will more-or-less be only thing I watch if there's a box set available of it. I'm behind on my quota of squares this week but with my rib pain I haven't been in the mood to crochet but the pain was okay today and I made and stitched in one square and in the evening I managed to make 3 squares and start work on a 4th.
- Sunday 23rd September - Today was another trek to London; this time for a urology appointment. The journey went well with no traffic jams and we arrived on time. I didn't get much sleep on the way there despite the early start. It was a different company to TASL. I was worried that I couldn't get transport because of Christmas time. It was a new clinic and the Dr I saw was lovely and very understanding of my situation. She's ordered more tests and is going to see me in 6 months. The journey back home was uneventful. I mostly slept. I didn't have any tonic-clonic seizures, but my myoclonic seizures and hand spasms played up a bit. The crew today was lovely and very helpful and I had my stash of diet coke and gelatine free sweets that we picked up from Peterborough services on the way to London. When I go home I just crashed out for the rest of the day.
Sunday, 23 December 2018
One Second Every Day: September - Week 3
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