- Monday 7th May - Today marks the start of M.E. Awareness Week, something close to my heart and a condition I battle with every single day, Had a bad nights sleep as they was a malfunction with the smoke alarm and it kept going off and it took Dad and Mandy a while to fix and I found it hard to get back off to sleep again. When I got up I did my usual routine but stayed in my pjs and watched TV and then when I had the energy I got dressed. By the afternoon my pain, headache and brain flog was flaring and I hadn't done much other than lay on the sofa watching TV and having a nap. In the later afternoon the sun was out so I decided to go and do some studying out in the garden in the sunshine where it was warm. That tired me out but it was enjoyable. Struggle the rest of the evening with low energy levels, brain fog and pain
- Tuesday 8th May - Woke up more tired than I was when I went to bed so it was a high fatigue kind of day and struggled to stay awake most of the day. Made a call to my GP surgery and thankfully the referrals my rheumatologist requested have been made. By now I've learnt that things like that need chasing up as if I just left them at times they can go undone. Joint pain and headache flaring so went to bed for a rest and did some letter writing in bed to take my mind off things. Spent the rest of the evening on the sofa napping/resting on the sofa but struggled to follow what I was watching. Had an early night.
- Wednesday 9th May - Another high fatigued day of doing very little. Had together up early as the OT (Occupational therapist) from Wheelchair Services was coming round; because of my seizures she's worried that in a more 'active' wheelchair that it could tip backwards more easily so she going to try and get me a more lightweight wheelchair than my current one which is quite heavy and causes my shoulders to dislocate sometimes, especially as I want to push myself to be as independent as possible. At 1pm my carer arrived and we nipped in the car round the corner to the postoffice to post some letter, though in my brain fog I forget to get stamps and cash out so as I type my stepmum is at the postoffice now for me. We got that out that out the way before I was zapped getting a shower. I had a lovely shower and washed my hair but I was utterly drained after. I had a fainting spell, probably from being so drained and from the heat too. After that I settled in bed and began to watch some Chicago Fire but I couldn't tkeep my eyes one so I gave into sleep and I began to have a bit of an 'M.E. Crash' so the light and nose was painful so I had a sleep int he dark and the quiet. After my nap I'd recovered a little though was still struggling but I didn't want to oversleep and so I rested with my laptop getting some blogging done and watching some of the last few episodes of Chicago Fire. After tea I came back to my dimmed room where I felt most comfortable and I managed to answer a few questions on my distance learning course as I have a deadline looming (16th). I got into my pj's early and took some extra pain relief to try and nip my flaring pain in the bud and settled in bed for another early night and washed some more Chicago Fire.
- Thursday 10th May - Wasn't going to go to group therapy today but decided I could do with having the therapy and it was a fairly easy day. I was still really struggling and at times I don't feel that the staff truly understand physical health stuff and how much I have to battle through; especially on day like today. I took an artistic shot at lunch of my toast popping up for my one-second-every-day. When I got home I topped up with some more pain reflief (which I'd been doing all day) and just crashed on the sofa and had a nap. In the evening I painted my nails blue for M.E. awareness as someone I followed on Instagram was encouraging people to do something blue for M.E. I had a fall in the kitchen (my legs decided to stop working) so getting upstairs was a a bit of tiring ordeal as was getting into my pjs, to the bathroom and into bed but I'm here now. Dad's brought me the drink that I originally went into the kitchen for. Sadly in the fall I smashed my favourite tumbler cup so feel quite sad at the loss of that and frustrated with my body for falling and smashing it (and I thought using plastic was safe). After that it was bedtime with Stephen Fry reading Harry Potter to me as usual.
- Friday 11th May - I struggled t get up this morning but managed it (little victories) and got myself dressed and breakfasted and Mandy dropped my off at group therapy. I managed better than yesterday though halfway though I needed to take time-out to go into the communal area and lay on the sofa for 20 minutes and take some pain relief and I feel like my hips where being drilled into. I then came home and got changed for a appt at the beauty salon where I had a nice massage which really helped with my pain and muscle spasms and general stress relief. When I got home I laid on my bed needing a recharge as I was feeling totally wiped. I spent the evening sorting out a few things on my blog and then watched a programme on TV with Dad and Mandy before heading off to bed.
- Saturday 12th May - Woke up at 10am feeling more tired than I did when I went to bed but once I was up and had breakfast and got dressed I started to perk up a bit and not feeling too fatigued today. At about 11.45am my hairdresser came to cut and colour my hair and then I blow dried it a little which tired me a out a bit but not too much. I then spent the rest of the day making the most of the weekend. Mid afternoon pain and tiredness was creeping up so I went to bed for a bit and started on Chicago Med as I've now finished watched all 5 seasons of Chicago Fire. My pain and headache was increasing as was my hypersensitivity so I turned the TV down and put the subtitles on. In the end I resorted to taking some extra pain relief and I watched some more Chicago Med to distract myself.
- Sunday 13th May - Didn't make it to church this morning due to my continued crash and I didn't want to risk falling ill at church or have a seizure. I went back to bed and woke up around 11am. I then got up and took my meds and had my breakfast and put on the TV and I got dressed once I'd woken up a bit more and just chilled on the sofa watching easy to watch TV. When Dad go back from church he helped me plant some of my native wildflower seeds in some pots. In the evening I had another faint spell; I spent a few moments recovering on the floor before Dad helped me up and I spent the evening laid on the sofa as I got dizzy every time I sat up. Mandy and I watched a couple of episodes of Desperate Housewives. I was still feeling dizzy so I had to bum shuffle upstairs to bed (thankfully I've managed the art of bum shuffling up and down stairs) and I got into my pj's and got into bed and did a few bits on my blog and then went off to sleep.
My gratitude list list for this week is:
- M.E. awareness
- The sunshine and being able to spend time out in the garden
- Pain relief and access to medication
- Spending time with Mandy
