Doctors second appointment 

Schools back but for me it's now a long road back to normality after the holiday!! I haven't really been able to (or ever been any good at) pacing, so my body is definitely rebelling. I'm aching all over with the exhaustion and my brain fog is so bad I'm not actually sure how I'm … Continue reading Doctors second appointment 

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Wings and Wheels

Sunday saw me heading down to Dunsfold aerodrome for Wings and Wheels. As if explained before I'd not so much been looking forward to it, rather worrying but thankfully nothing beforehand went wrong so mobility scooter dismantled and packed and emergency kit supplemented with 2 bottles of icy water and a cold water spray (and … Continue reading Wings and Wheels

My emergency kit bag!!

I never thought that at the age of 38 without a baby that I'd be packing a bag of essentials to carry around with me. Unfortunately with the "unspeakable problem" screaming so loudly at the moment I've had to create my emergency kit so that whenever I go out for more than a few hours … Continue reading My emergency kit bag!!

The unspeakable problem!!

I know it's not something that most people talk about and there is a reason for that but today I want to talk incontinence. It's not talked about because it is embarrassing, it's not interesting and it's not something that you want most people to know about.  It's not something that you can just chat … Continue reading The unspeakable problem!!

Blood test deja vous!!

Yet again two days ago saw me off to the hospital with mum for yet more blood tests!! We have researched and found out the quieter times because of my sensory problems and problems with crowds so late morning saw mum and me at the local hospital for my blood tests. Seems however that most … Continue reading Blood test deja vous!!

Phew, that wasn’t as bad as expected!! But has anyone seen my knuckle??

Today was D-Day, my first appointment with my new doctor.  I can't say that I was looking forward to it.  My brain was in total overdrive and the two nightmares I had last night definitely didn't help.  I had written my list, an essential piece of my doctors appointment equipment for without it I am … Continue reading Phew, that wasn’t as bad as expected!! But has anyone seen my knuckle??

Appointments, pacing and “The Unmentionable problem!!!”

This week I have had two hospital appointments, both at our local hospital which has meant that I have been able to get to them in my mobility scooter.  It's meant though that for the rest of the week I've not really done anything, I've not been able to go out in between because for … Continue reading Appointments, pacing and “The Unmentionable problem!!!”

Carers and phone calls

I've been having a bad few days so haven't been up to posting. Today's post I decided to write about my carers. I'm lucky in a number of ways but one of those is my wonderful carers. I've deteriorated so much I have 2 different ones. I have my wonderful mum, who I love spending … Continue reading Carers and phone calls

Why my embracing my sensory and sensitivities is not making them up.

So when I was diagnosed with EDS it was a huge learning curve for me. Learning that things that I'd lived with for years were not normal and that it was ok to say that these things lead to pain or stress or both. I knew that I had something and was diagnosed as hypermobile … Continue reading Why my embracing my sensory and sensitivities is not making them up.

Let’s guess who my GP is!?!

Let's talk doctors. When you are a "normal" person it is nice to have a good relationship with your GP, however when you have a long term condition it is essential. Your GP is often the only one willing to send you to see specialists and to understand your everyday struggles. I have been very … Continue reading Let’s guess who my GP is!?!