Today marks week 5 of my 1st ever hospital admission, and since the 1st half of the day was spent doing sod all I thought I’d reflect on a few things. I started this journey thinking I’d be in over night… Just till the diazepam wore off… I was wrong. The last 5 week’s have…Continue reading 15th day in rehab (dealing with the emotional rollercoaster of chronic illness + back pain & vintage bargain shopping)
Author: JBOT
14th day in rehab (race horses, the great escape and beading)
Today marks 2 weeks here at Aldeburgh Community Hospital and tomorrow marks week 5 in my hospital admission. (1st ever admission and hopefully my last for a LONG time) I have filled my room with stuff from home, my orchid, my beads, my clothes and it almost feels like home. I started the day with…Continue reading 14th day in rehab (race horses, the great escape and beading)
13th day in rehab
Fairly relaxed day today, I had a bit of a layin then got myself up and dressed. Physio man came to see me and I was introduced to the 3rd physio on the team. She seemed a little more hesitant about the EDS risks during physio than the other two but I gave her my…Continue reading 13th day in rehab
12th day in rehab (setbacks and steps forward)
After yesterday’s mini-migraine I fell asleep pretty quickly…and seem to have been run over by a tractor in my dreams. My back is sore and I’ve subluxed my left shoulder/scapula/clavicle. Migraine wise last might was a pleasant surprise for me, I had no tremors or spasms at all! However I have lost the reflexes in…Continue reading 12th day in rehab (setbacks and steps forward)
11th day in rehab (temporary escape)
I’m still struggling to wake up in the mornings but did ok after breakfast, got myself dressed and laid on the floor for physio. After doing my exercises I even did my hair and slapped on some make-up. Physio came to see me today and I asked about swapping the ferules on my frame to…Continue reading 11th day in rehab (temporary escape)
10th day in rehab (making progress!)
Just a quick bit from last nnight after I posted.. This is my current manicure Designed to look like brushed steel it fades between navy blue and silver blue. Overslept this morning, (again) I think I’m working my self really hard and just need more sleep! Got myself up and ready before heading back to…Continue reading 10th day in rehab (making progress!)
9th day in rehab (Exciting!!)
Once again failed to wake up this morning but was revived with a cooked breakfast. Got myself up and dressed and did some of my floor based exercise 🙂 I could see the cleaning crew lingering so I rolled up my mat and swapped to beading for a bit. We chatted about holidays while they…Continue reading 9th day in rehab (Exciting!!)
Phase Change Cooling Vest Review
So I was very excited to get my cooling vests in the post this morning. I was lucky enough to snatch the last 2 of the ‘Junior Cooling Vests’ from DisabledGear. I have been really struggling with heat intolerance, progressively since Christmas when I started developing symptoms of Postural Orthostatic Tachycardia Syndrome (POTS) Basically being…Continue reading Phase Change Cooling Vest Review
Ring Splints By Zomile
Ring Splints by Zomile make affordable, high quality silver and gold finger splints for conditions like Ehlers Danlos Syndrome, Marfan Syndrome, Rheumatoid Arthritis, Swan Neck Deformity and more. The splints block hyperextension of the finger joints (dip & pip joints) while still allowing normal hand function. I am utterly in love with them, not only do they look…Continue reading Ring Splints By Zomile
EDS Awareness Month Continued!
I Posted this photo as part of EDS Awareness Month to highlight just some of the effects that Hypermobile-EDS has had on me and many others.. well the response was phenomenal! By the time I went to bed yesterday an amazing 41,312 people had seen that photo! There is no way this would have happened without…Continue reading EDS Awareness Month Continued!

