I’ve had a long week again. 2 hospital appointments and getting ready for my mum to go away (my sister and my niece will be staying with me to help me), and so I’ve been struggling again in more ways than one. The problem has been my brain fog again which has been awful. I’ve managed to hold my brain together for my appointments (well sort of, but I’ll explain in a mo if you’ll indulge me) but my brain then seems to fold in on itself and collapse in a mess of goo!! It all came to a bit of a head last night when seemingly, and despite having all my meds in a supposed idiot proof blister pack, I didn’t take any meds last night and I still have no idea if I took the 4 puffs of my inhaler I’m supposed to or if I took 3 or 5!! I also have no idea if i cleamed my teeth for the 2 minutes of timer or twice because I couldnt remember if I’d heard the end “buzz”!! Not great when the person I rely on most is going away for 4 days, but she really does deserve and need the break and I have my sister and niece staying!!!
I had two appointments last week, one was orthotics and one was an extended scope physio. Orthotics was at my local hospital and I’ve thankfully got some different splints on the way to try. My ankle splints have been looking rather worse for wear this time and as my ankles swell to sometimes epic proportions the restrictive ones I have aren’t doing the job!! I’m lucky as my orthotics department are not only helpful but understanding too, we’ve worked together to have different splints that I use for different times and uses. My ankle ones are full time because they support me to be able to walk around my house (well not like most people do but at least I can get to the toilet etc!!) as my ankles are so bad that without them I’m so unstable on my feet. I’ve had physio support and they also agreed that splinting my ankles was helping support not causing the reliability and deconditioning that they can do. So thankfully I’m going to be getting something new to try!!
My second appointment wasn’t quite so successful, but for different reasons. The extended scope physio was looking at my hand and investigating the mystery of the missing knuckles. I again, as usual when dealing with EDS, heard the common phrase.. …”I’ve not ever seen anyone who’s dislocated that joint before” and she was rather concerned about the level of swelling (which quite typically for my body wasn’t as bad as it had been the night before). This is the joint the night before….
But at least the specialist took it seriously!! Unfortunately I need hand therapy, but the hand therapist that I had been seeing at my local hospital has moved to India for a couple of years and they’ve not replaced her. Even more unfortunately the next hospital’s one (where I saw this lady) has just left and they haven’t got anyone to replace them yet AND the next hospital away is also short of therapists!! In total there are 3 positions for hand therapists in my whole clinical area being advertised and not one of them has currently been filled!!! So the supports/splints I need replacing can’t be, and they aren’t quite sure what to do about it!! But she is going to see if she can refer me out of area to the only one hand therapist she knows of, but she’s not sure if she’s allowed or not!! She also was going to investigate to see if she could see anything mechanically wrong with my hand to know if there’s anything that they can do, so she asked me to go for an x-ray!! I had booked my lovely carer for over 2 hours after my appointment to allow for run over and on asking approximately how long the wait was and being told it was about 45 mins we thought we were fine. I first had the unspeakable problem make itself known again, brain fog had left my emergency kit at home so we cobbled together( from a very helpful care assistant at the hospital) a makeshift kit. I was very wet, reacting to something in the department so extremely blotchy and flushed, in sensory overload, worried that 45 mins had turned into nearly 2 hours and my carer was running late for her next call so feeling rather stressed!! All this was for a hand x-ray that when it finally happened, took less than 10 minutes!! I won’t hear until next week if she actually saw anything though!!
So its been one of those some good, some bad weeks. The bad has been making my mood fall and so has my brain fog. I have been feeling so frustrated and almost helpless with it. From tomorrow, with mum being away, I have finally got a week without an appointment. It starts again the following week but I have one week without any appointments at all, I hope to find where my brain has gone and maybe recover some of my brain power but at this point I’m actually not that sure how much I have left!!!