Health update - Upright MRI 2018

Hi everyone, thanks for stopping by! Here goes with all the boring health updates. Starting firstly with the obvious, the important London stuff including upright MRI.

At the start of the month myself and Bicky set off for London for the upright MRI and to meet with an experienced physiotherapist there. We booked three nights in the hotel, knowing that travel is very difficult, tiring and painful. And from what I had heard the upright MRI is no picnic (plenty of rest needed afterwards -not travel). Flexing the neck triggers the symptoms we are there to investigate in the first place.

I spasmed, jerked and gagged during the long and slow scans. But all in all I did pretty well and was quite proud of myself. It wasn’t pleasant, to say the least, but the staff were lovely and understanding. Afterwards I vomited, the gag reflex was just too much, but that was after the fact so I’m not counting that, haha.

Physio

The next morning I met with the physio, and what an experience! I don’t think I’ve ever had such a comprehensive and educational appointment. I learned so many interesting things about how my body works. The lovely physio didn’t have my MRI results, which the consultant had hoped she would by then. But by simply feeling my spine and areas of my body, she was able to tell me a lot about what was happening under my skin.

Spine

Feeling along my spine as I moved my head to the sides, backwards and forwards, she was able to tell me that only part of my cervical spine was assisting in this movement -unlike with the average person, who moves parts of both their C spine and their thoracic spine. My T spine is locked and will not move on its own, causing pain to the overworked C spine. She pointed out that our bodies are quite amazing, in that if they can’t do something in the normal way, they will endeavor to find a way – even if that way is injuring us -“Your body will find a way to make that movement if it can”. So interesting. 

Image by Freepik

This explains one of my longest running symptoms and major causes of pain. As a child I called it “spine freeze” but this is NOT a medical term, merely a childish way of trying to explain to doctors what was happening to my body. On lying down my spine would seize entirely, although more so focused at neck and mid back areas. I could barely move, and any tiny movement felt like my spine was about to snap. It was like one, long unflexing pole. It was both terrifying and agonising in equal amounts when I was a child. I still experience this phenomenon but only a few times a month.  Sometimes I feel what I call twitches when standing/ sitting, but I can unlock these. Unlike when I’m lying down and I just have to wait it out. While still scary, the lesser frequency has helped, as does age -I suppose I got somewhat used to it.

Health updates - Winter 2017

Howdy folks!

So few health updates...
(See previous here).

Head, Shoulders, Knees and Splints

As mentioned in the summer, I've started seeing a physio at last -one who knows a bit about EDS and willing to keep me on. Through her I was also put in touch with an occupational therapist, who was able to fit me with suitable to finger splints as well as a few other hand/ arm supports. The ring splints are truly amazing! I have so much more movement in my fingers, and they dislocate a lot a less. From typing, to even coughing into my hand, my fingers were honestly just crumbling and in a state of dislocation 24/7. So these have helped a lot. These tiny bits of plastic really do so much work. An exoskeleton of sorts. Next I need to inquire about something for my knee.

These little plastic things are a wonder of technology. Look at them there. How can something so small make such a big difference? Received these #oval8 #ringsplints from #occupationaltherapist a while back and they are simply amazing. I can write, type, lift a cup, with hardly any finger dislocations now. I'm in love 💗 #ehlersdanlossyndrome #EDS4IRE #occupationaltherapy #hypermobility #disability #disabilityblogger #dislocation

A post shared by ☾Kitty Colbert☽ (@kittypotpie85) on Nov 30, 2017 at 5:26pm PST

I also had a visit to the house to see what could be fitted. I turned down most things -I have issues getting in and out of bed but don't feel I require anything yet, I don't feel I need bars at the toilet as I have the bath one side and cabinet the other side so use them to sit down... The one thing I accepted was this beauty of a perching stool. The slopped design of the seat means that I can get far enough to the sideboard to chop vegetables, do the dishes, etc, but I'm also leaning on the seat comfortably. Perfect on days when I can't stand for long.