My recent blogs have all been fairly purposed so I’ve not mentioned things that have happened in my life recently. I know that you’re all dying to hear about my shenanigans, so here we go:
My Aloe Vera has spawned a million babies. I only got it six months ago from Ikea. This thing clearly thrives on neglect:
My Mum sent me a fold-away camp chair for when it’s nice outside. It’s pretty basic but will make a massive difference to me getting fresh air on nice days. I really don’t care that I’ll look like a weirdo. I usually have the budgies outside with me and I think “crazy bird lady” trumps any concern about sitting in the communal courtyard on a chair. Meg says hi:
J broke his toe playing Pokémon. He was running through the house to tell me there was an Eevee and he sort of missed the part where you fully open the door and kicked it full force. He went down like a sack of potatoes and his phone went flying. Needless to say he’s feeling very sorry for himself and is more enamoured with this little pocket monster lately:
It turns out my antihistamines “can make some people photosensitive” despite no mention of it in the booklet. I seem to be one of those people. Of course I am. I only went out for a short time the other day and a few hours later I looked like a lobster. It all peeled off. I’ve never been more than a bit pink in my entire life. I think I’ll just slap on the factor 50 everyday now, regardless:
I’ve been back at physio. I’ve got some gentle Pilates to do to try and strengthen my core and even these basic exercises absolutely wipe me out. I’ve to keep an activity diary and come up with three things that make me happy that I’d like to be able to do again. I’m back in just over a week so I’ll probably start my diary on Monday. Any tips from my fellow bloggers? She also gave me wrist braces to wear to bed at night as unconsciously try to snap my wrists off in my sleep. Ever tried to sleep in wrist braces? It’s not easy. Grr.
(I’ve also stopped biting my nails enough to pain them! I eventually raised £140 for EDS-UK which is far more than the £50 target I originally set myself. Hooray!)
Super Mum got onto the pain clinic about why my referral was (once again) taking forever. It turns out that the consultant I was due to see had been given the referral from my rheumatologist but had gone on a month’s annual leave. That’s an extra month I’d be waiting before I was even put on a list – which is shite. Thankfully, Mum used to work in anaesthetics and politely told them that it’s not good enough and that I’ve already had two lots referrals go missing and waited for the entire “waiting list time period” TWICE for them to decide not to see me – despite me still having no pain relief. I have the pain clinic on the 30th of August and immunology in mid-September. I really hope that they can work TOGETHER to find me pain relief instead of the pain clinic permanently waiting to see what every other speciality has to say and me being left to twiddle my thumbs in pain.
I think that’s most things. It’s not super exciting but It’s my life!