- Monday 10th September - Dull and uninteresting day. Was exhausted at the end of the day and went to bed early as my hips where hurting quite a bit.
- Tuesday 11th September - Difficult day emotionally as I had a conversation with someone at group therapy and they didn't like what I said (seriously it was so minor), they're quite a playful person, so I gave a playful answer when they asked me something and they didn't like what I had said so in relation they maliciously damaged my artwork which I had spent hours making which really got to me as it was so un-called for. So that set me off for a bad day. What was nice was when I got home I had some mail including some more beads for my 'Warrior Beads' project and inside the package was a bear with the words 'strength' on with a note saying "for never giving up". That evening as a distraction I sat and brought my Warrior Beads up-to-date.
- Wednesday 12th September - Fairly quiet day. Woke up not feeling great so had a PJ morning and watched TV and did a bit of crocheting. Little victories and managed to get showered and washed my hair. Had a 'pamper' show using nice products, mostly from my Birchbox's as a 'pick-me-up'. The volunteer home library lady came round in the afternoon with some audiobooks for me so that will make a nice change to listen to some books as I crochet. I was struggling a bit emotionally after yesterday so I called my care co-ordinator to have a chat with them. The evening was a bit of a blur of seizures and spasms, after over and hour and a half it was time for some diazepam which I hate taking but I seem to be doing through a bad spell of prolonged seizure episodes and spasms at the moment which I'm hoping will subside so I won't be taking the diazepam so much. The increased dose helped and finally it settled my spasming and I headed up to bed. I was in quite a bit of pain so I put on the first Harry Potter film as a distraction and eventually nodded off.
- Thursday 13th September - Woke up with immense pain down my left ribs. Sorted my day's meds out, had breakfast and then went upstairs to get dressed when my body decided to have a few more spasms and tonic-clonic seizures. Thankfully Mandy was there, just about to go to work, but her work know about my health so they was okay with Mandy being a bit late. I had another PJ morning and just kept topped up with pain relief and hugging my heat pad. The pain got so bad that I ended up calling the GP practice and my GP thinks that given my hypermobility I've probably dislocated a few ribs - ouch! Spent the day resting and napping. In the late afternoon my step-sister came round to visit and she painted my nails so I feel much better as they've been bare for so long. My plan is to attempt some crocheting this evening, even it's just 2 or 3 squares. Tomorrow hopefully I will be feeling better and I can be more productive with my crochet.
- Friday 14th September - Had a bad night's sleep, struggled to get off as I couldn't get comfortable and then every deep inhale woke me up in pain. Had a quite chilled out day. Finished off a letter to one of my pen pals and did some crocheting. The pharmacy delivery actually came today - yay! Managed to get some crocheting done on my blanket and so far I'm on track with it. I also finally got my summary back from my gastro Dr at UCLH and my B12 and iron levels are deficient which may explain y increased fatigued, it also included my request for my Gastric Emptying Study to be done locally; it also mention something about having an EEG to check my long QT something with was a bit worrying so I called the GP practice and the receptionist has made my GP aware of the letter so he can action it.
- Saturday 15th September - Nice chilled out and productive afternoon (this morning I accidentally overslept as my alarm didn't go off so I didn't wake up until about half 11; thankfully my meds alarm went off at 9am so I had my 9am meds). Though I must have needed the sleep as I'm not sleeping well at the moment as I keep waking up in pain and I just can't get comfortable. In the afternoon I had a nice long hot bath for my pain and then I got dressed. I managed to get three squares crocheted and stitched on; I then took a break and did some PostCrossing postcards. My bedroom looked like a slight stationary bomb site but I managed to tidy up rather than just leave it out. I've also discovered a new show on Netflix called Project Runway, its quite Americanised buy its a fashion design program so makes a change from Bake Off. I also had a phone call today from someone from Lloyds Pharmacy in regards to my email, she was very annoyed that for two Monday's I had gone without my breakfast and lunch time medications as the Friday delivery didn't happen and is going to investigate how things are run at the weekends and she was annoyed for me/my carer that she wasn't told when she walked in that my medication tray wasn't ready, or they knew where to look for it (controlled drugs cabinet) and also about the lack of driver situation; she was lovely and very aware of my worries about my complaint being identified as me which was nice, so hopefully things will run smoother in future as I said that in the past I've had issues at the weekends as the staff aren't familiar with where things are kept but I did give out my praises to the usual delivery driver who is amazing and how compared to previous pharmacies I've been with Lloyds is much better.
- Sunday 16th September - Still been in a lot of pain and still not sleeping well. I had a nice hot bath and got dressed. Rik then came round for a few hours and we watched a documentary and a couple of episodes of The X-Files and we drank tea so that was a nice distraction. I tried to do some crocheting but my body just wasn't having it so I've been curled up with a hot water bottle and a blanket today watching Project Runway. At one point I was so feverish I was shaking but the paracetamol brought my temp down. I don't feel too worried about my crochet as I did a light miscalculation on my weeks so I have two overspill weeks and my aim is 16 squares a week over 12 weeks and I've managed to make 19 this week. I'm planning on having an early night as I need to make it to group therapy tomorrow to meet my attendance target (which is super difficult and a bit ridiculous for someone with a chronic illness), but if tomorrow I'm having a day like today where I'm needing regular pain relief including my oramorph as well as my daily slow release pain meds I dint think it should be wise I go in, so I'm in a rock and a hard place.
Gratitude List...
- My bear from the Warrior Beads project
- Little victories like making it out of bed, getting washed and dressed
- Medication
- My family and friends/pen pals
- Being under the care of really good specialists in London
- Lay-in's (even the accidental ones)
- Being productive
- Being able to listen to my body and what it needs
- Helpful staff at customer services
