Monday, 31 December 2018

[Video] Happy New Year from my ME flareup

If you follow me on Instagram then you'll know I was quite proud to visit a site recently that has been on a list of things I wanted to complete -The Silent Valley Reservoir/ Mountain Park. We walked for nearly an hour and I used only my cane. I had stories up throughout the trip on social media and took some pretty nice snaps with my DSLR.

It was tough, very tough, I could barely bend afterwards to get back into the car. But extremely glad I achieved what I wanted to; feeling quite proud.

Here's some photos of the day and a video of the aftermath, because it's really only fair to show both sides -I could make everything look pretty and shiny in my life through social media but we all know that's a load of bollox. I do myself and my conditions no justice by not representing the truth. On top of that it's harmful to any young, impressionable zebra out there (or anyone with chronic conditions) who feel like a failure for not living up to what many portray online. 

Sunday, 4 November 2018

The ministry of silly walks

Finished week two at the hospice. Here’s a quick update on how I’m feeling and doing...

End of day two at the hospice. Very sore but going great -I’m so lucky to be here as not many EDS patients get a place on this programme. I’ve been doing physio so far but will also have occupational therapy at some stage, and tomorrow I start in the hydrotherapy pool which I’m really excited about. The staff are fantastic. This evening I had a massive pressure headache with vertigo and queasy stomach- symptoms of my Chiari Malformation. It was very bad, after a groggy nap I took painkillers. It’s such a pity there aren’t more places like this in the country for EDS patients, although in saying that if you end up here you are probably quite deconditioned. We need to ensure patients don’t get to that stage, especially when they are young. We need services in Ireland that help people like me from a young age, early intervention and diagnoses is key in not ending up in wheelchair like myself. A real, qualified consultant, a hypermobility clinic that can handle our comorbidities, qualified physiotherapists in each county. Healthcare shouldn’t be a geographical lottery and we should have the services available that prevent hypermobile people ending up here (a place patients go for rehabilitation). I’m going to try and make the most of this experience, while also educating the staff on Ehlers-Danlos syndrome at every opportunity. Luckily they are quite interested on the topic. I’ve ordered some #EDS4IRE badges and hoping to receive them in the post before the end of my stay! I’ll also bring in a printed copy of the petition next week and try get everyone to sign it -never miss a chance to spread awareness and fight for your rights 💪🏻 • • • #occupationaltherapy #hydrotherapy #cripplebabyblog #edsandhsd #irisheds #irishedsandhsd #ehlersdanlos #ehlersdanlossyndrome #fightlikeagirl #ehelrsdanlosawareness #physiotherapy #hypermobile #hypermobility #hypermobilitysyndrome #hypermobilityspectrumdisorder #spoonie #chronicpain #chronicillness #disabilityrights #disabilitypride #chiari #chiarimalformation #intercranialhypertension
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I’m extremely lucky to be here. I don’t want to take anything for granted. I try not to make a big deal of the dislocations, I can’t do much to prevent them any way but also I don’t want on record that it’s an issue -I feel like I’m responsible for any other hypermobile patient who gets referred to here in the future. I'm extra carful not to faint or fall over or show any signs of dysautonomia. I’m getting more information recently from the community, and it’s even harder to get in here with EDS than I first thought. Some are refused by letter, not even being met with because they quote “don’t treat Ehlers-Danlos syndrome”. I feel my acceptance into here may be partly because of my hip dysplasia and damage to the joint because of that. The HSE cites this place to deny us treatment abroad under that scheme, but while they can help with the rheumatology side of things (in some cases anyway), EDS is a multi-systematic condition. Dislocating joints and weak muscles are only a part of it. But if the HSE says we can get treatment here in Ireland, we are not eligible under the treatment abroad scheme.

Tuesday, 23 October 2018

[Video] Off to see the wizard

I was lazy and did a video cause I’m in a rush. This is very poor quality with zero effort, enjoy! Also yes, I am excited about a hospital admission.