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whentaniatalks: A Good Week, Followed By A Bad One!

Friday, 8 August 2014

A Good Week, Followed By A Bad One!

Hi Everyone!

So I had a really good week last week - I've been on a phased return to work & managed the first of my 2 hour shifts without needing to sit down at all During the second I only had to sit down for about a minute near the end of the shift! I was really pleased with this & so was my GP. She was happy to increase my phased return to 3 hours maximum, with a chair to be provided.

I was also contacted by a company to review products for them for my other blog - whentaniatalks & received email confirmation of my invite to Bloggers Fashion Week. I was really excited & felt that things were looking up!

Then I had an MRI scan on my knee. I've been in an unbelievable amount of pain since! My whole body has been affected! Everything is painful - it got so bad that at one point it hurt to breath! I've been fatigued & have had to take just short of a week off work.  

During this time I received an appointment for the Jaw Clinic at the Manchester hospital for TMJ dysfunction & an appointment for the Trauma & Orthopaedics clinic at one of the more local hospitals. This not only puzzled me, but also my GP as I'd been referred to the Rheumatology department!

I have been slowly recovering from this flare up. Of what, is yet to be determined. I think it is worse to be unwell & not know what the cause is. Honestly, I would be shocked if it was not Hypermobility Syndrome/Ehlers-Danlos Hypermobility Type, but until I have a diagnosis it's hard to communicate your difficulties to people. Work have been very understanding, but said themselves today that they are muddling through trying to support me the best they can. I felt frustrated that I couldn't tell them what was wrong with me & how they can best support me! I can tell them my symptoms & what may cause a flare up but it always helps to be able to explain to people why something is happening & to be able to give them information relating to the condition. 

I've babbled on about a lack of diagnosis too much...

I was back to work today for a 2 hour shift. I managed the first hour ok, but had difficulties with fatigue, strength in my legs & extreme pain. I had to sit down a number of times.

Next Thursday I see the Neurologist to find out whether I am able to able to continue with the Botox treatment for my migraines & if we are to reduce any of my migraine medication as a result. Prior to that I have one 2 hour shift at work & two 3 hour shifts. I am hopeful that with a combination of rest, Epsom salt baths & pain relief I will be able to make it through my two 3 hour shifts & get back on the right track progress wise.

How is everyone else doing? 

Tania Xx



At 22 August 2014 at 10:27 , Anonymous Anonymous said...

Hi Tania
I know of someone else with EDS who had an MRI and had strange side effects after it. Her legs moved 'involuntarily' and she had some strange 'twitching' fro 72 hours after. Could it be the magnetism or something? It is so difficult when strange things happen to your body and you are unable to give friends/colleagues an explanation they can understand..................... good luck!

At 31 August 2014 at 16:08 , Anonymous Hayley- Eszti said...

Sounds like a rough week :( I remember how difficult it was for me before diagnosis, but it's good your work are trying to be as supportive as possible. Fingers crossed your neurologist has some helpful answers on your upcoming appointment. <3


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