- Monday 21st May - Struggled with fatigue during the day but perk up a bit later on. I also tried to get hold of my OT at wheelchair services to check that I received the right wheelchair as I was meant to get a lightweight one but its very heavy to pick up even for Dad. It's been lovely and warm in the sun room where I settled myself today and got on with some blog related admin and chatting to some people on the 'Young People with Functional Disorders' Facebook group. Managed to get a section of my distance learning course typed up on the only workbook. Did mean to start reading the next section but was feeling a bit fogged. Also meant to start typing up some pen pal letters but again was feeling a bit too foggy so opted for watched and episode of Watchdog on my laptop with some jelly and ice-cream (you can't have ice-cream without jelly!). There's always tomorrow for college work and letter writing. I then caught up with my two previous week's second-by-second posts and I aim to type each night the day's account to make it more manageable and to keep my journal as accurate as possible. Right, now I'm heading off to bed!
- Tuesday 22nd May - Well, what a day. Its been a bit of an emotional rollercoaster and I'm glad its over. Woke up okay and put n my favourite zebra t-shirt (I've been wearing zebra things for EDS/HSD Awareness Month)/ All morning my hips where in agony, I took some co-codamol and it helped a bit and I gave it until lunchtime then resorted to taking a bit of oramorph which I hardly use but I was in so much pain and thankfully that helped. Because of the pain I was a bit fatigued but as the pain eased I perked up a bit but I was still feeling low. As the day wore on and my spoon count depleted so did my energy levels so I spent the evening wrapped up in blankets on the sofa watching CSI. Because I was feeling low Dad sat with me and we finished off a half watched episode of 'Can't Pay? We'll Take it Away' and then Mandy and I watched and episode of Desperate Housewives. They then went out so I watched a couple more episode of CSI and despite my fatigued still managed to do my physio so feel proud of myself for that as I wasn't in the mood to leave my nest of blankets and cushions. I'm now in tucked up in bed ready for an early night. My bedroom could do with a tidy so that's on tomorrow's 'to do' list.
- Wednesday 23rd May - Didn't sleep well at all, I kept waking up with my hips in agony and having to sort out pain relief whilst half asleep. Carer's came this morning and I was shattered so I didn't feel like going out so we stayed in and did a few things like put on fresh bedding and wash my hair and have a nice hot shower to help with he pain and use my Birchbox things to try and do a bit of self-care. I settled on the sofa and spent the afternoon struggling to concentrate; flittering between my laptop, typing a letter and watching the TV and just simply resting because I was so brain fogged. Thankfully my hip pain calmed down by the afternoon after taking a bit or oramorph. Mandy made a delicious tea and it's unusual for me to really enjoy a meal and after tea we watched an episode of Desperate Housewives and I went upstairs to finish off a the letter I had typed and printed out earlier that afternoon. I've just finished off a guest blog post and tying up a few loose ends and I'm off to bed because I am shattered! I'll see how I am in the morning with regards to going to group therapy as if my pain and fatigue is anything like it is today I'm going to struggle and I've muddled through it before when I've been like this but I don't think the staff truly understand how difficult it is for me and they see me rock up and get through the day and think "oh, she managed the day" but they don't see that underneath I'm paddling like mad to stay afloat and how the PEM is afterwards.
- Thursday 24th May - Had a better nights sleep and pain wasn't too bad but was still feeling a bit rubbish but decided to still give group therapy a go and it was a nice small group today. By lunch time I was ready to go home but listened to some music and felt a bit better. By the end of the day my fatigue and pain was flaring. I stood up an fainted so laid on the sofa for a bit. Had a seizure on the way home and went to bed, watched Chicago Med for a bit but started to get tired. Ended up sleeping for at least 3 hrs (Dad and Mandy forgot to wake me up). I ended up having my tea at 9pm then the three of us watched a programme on TV and now I'm typing this and sat in bed and have the TV and try and get some sleep in a bit so I'm not too tired tomorrow.
- Friday 25th May - I made the executive decision today not to go to go to group therapy this morning due to not feeling great. I had a really strong pre-seizure aura and felt it was safer to stay at home on the sofa where I was safe. I spent the day struggling with brain fog and pain. I flitted between napping, seizures, watching television and doing a bit of college work. Getting the college work was a bit of a relief as I felt I was getting a bit behind but it was a struggle so I may need to revise what I typed to make sure it correct and add in missing bits. We watched a film in the evening but I couldn't; follow the plot and fell asleep. Eventually after Dad and Mandy agreed they wasn't following the plot we decided to watch it another time and head to bed and I more-or-less fell straight to sleep once I got settled in bed.
- Saturday 26th May - Had a lay in this morning, my only real morning I can do that. I woke up around 11.30am but them feel back to sleep and got woken up by my medication alarm at 12.10pm and got up. I then took my meds and got dressed and spent the rest of the afternoon dosing and watching TV. I've been feeling quite dizzy and faint when I sit/stand up so I've spent most of my time laid down. I feel bad just spending the day laid watching TV but I try and remind myself that my body needs to rest and recharge as much as possible and Saturday is my day that I can really do that. I settled myself in bed early but when Mandy came home just after 9pm she suggested we watch Desperate Housewives so I sat with her and watched an episode before heading to bed.
- Sunday 27th May - Made it to church. Wasn't feeling 100% and at one point I was feeling a pre-seizure aura in church and felt panicky that I was going to have a seizure in public (my worst fear) so went and found somewhere quiet, thankfully no seizure happened. I spent the rest of the afternoon watching TV feeling REALLY cold and feeling frustrated with why I felt so cold but I googled it and found out that people with M.E. can be hypersensitive to temperatures, especially feeling cold much more that people who don't have M.E. due to dysautonomia which made sense to a lot of my other symptoms too. In the evening we Dad, Mandy and me watched a Indiana Jones film and then I headed to bed.
My gratitude list list for this week is:
- Online support
- My wheelchair
- Jelly and ice-cream
- Pain relief
- Spending time with Dad and Mandy
- My carers
- Fresh bedding and clean pj's
- Music and my iPod
- Lay-ins
