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 πŸ’ͺ🏻 • • • #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.

I was advised in the London hypermobility clinic that when I’m next denied treatment at home because of my condition, to ask for a letter. Build a case the HSE cannot deny. If you have ever been referred to here (and most EDS patients in Ireland know where "here" is) and denied a place because they can’t treat EDS, I urge you to insist on a letter saying so as I know some people are doing.

Because of this fragile system of “go there, they treat EDS”, “no we don’t treat EDS”, “yes we treat some cases of EDS”, “we have no funding for EDS” -I feel like I’m threading carefully, not wanting to rock the boat in the hope they realise they have a lot to offer our community even if only from a basic rheumatology point of view. While fully appreciating this experience too of course. The physios and OT’s are terrific and understand quite a bit about hypermobility in fairness. Sometimes the multi-systematic issues might seem confusing, but the basic care is there. Perhaps they are selling their staffs' expertise short, or perhaps they do not realise how difficult it is to find a knowledgeable physiotherapist or access occupational therapists (who can offer hand splints and advice) in some parts of the country. Being here for that alone is a huge benefit to anyone in the Irish Ehlers-Danlos community. Not to mention the hydrotherapy pool; I don’t think I could have gotten through my physio without the support the time in pool has given my joints.

Funding of course, is a massive issue. Not the staff and not the facilities. If the HSE is determined to insist time and time again that this hospice is the one place that can help us, then they need to back that statement with money. Prove it by making it real. Why not train (and I mean properly train, send them to London) and hire a consultant rheumatologist to have working out of here, seeing both outpatients and inpatients? Start building a hypermobility clinic in the one place we are supposed to go for refuge. I’ve noticed that the hospice is constantly fundraising. Imagine how much our community could help with that, if we weren’t busy fundraising to go to London and further afield for our individual care? Imagine what we could achieve by supporting services here at home.

I’m very grateful to be here. It’s been tough. The other night my body spasmed and twitched and tremoured. This is something the Baclofen helps to control, and I no longer have the big fits I had a couple of years ago. However when I increase exercise I find I have these exacerbated twitches. It’s hard to explain, and I never really found out why it happened or what it is, but it stems from my spine -like someone is squeezing it and little electric shocks fire out to the limbs. I’ve put it down to “one of those EDS things” although I feel it is a different issue entirely. I know I will never find out at this stage in my life. As you can imagine this occurring for hours, my body moving for hours, was exhausting. I had physio early the next morning and my body was in recovery mode -very stiff and still slightly twitchy. I still did my exercise although not brilliantly, and trying to explain these attacks to people who don’t understand fully understand the complexity of EDS is complicated.

But overall everything has been very helpful. Doing repetitive actions has helped me learn the movements that I couldn’t do before (I have balance and coordination problems that are also probably  a comorbidity too, rather than direct EDS symptoms). I feel the exercises are working the right muscles unlike when I have done similar before. But it’s fucking sore. It always will be.

I’m delighted to be offered a third week here. I know it can only benefit me. But it saddens me that not enough of us, suffering adults because of the lack of survives in our childhood, don’t get these opportunities. As soon as I am out after next week I'll get back on the campaigning for services (posters and leaflets are needed for places like this, for one).

Here’s my adventures of last weekend (getting home to Bicky for these brief visits, my dogs and cat is great).

I spent the first Saturday with the Dundalk for Change crew, first at our annual candle light vigil for Savita and then a group meeting. We have some exciting stuff coming up so make sure to check us out over at Facebook, Instagram, YouTube and Twitter.

And then on Sunday I went for a drive and brief walks with Bicky.

This weekend I've mainly spent it catching up and scheduling posts for the various social media platforms that I help with, and updated the #EDS4IRE website - Make sure to check the campaign over at

I'm now also on Facebook with #EDS4IRE campaign, so make sure to give it a like!

And have created a new logo also.

I finally took the step of starting up social media accounts for the #EDS4IRE campaign (new logo, too), rather than use my blog pages and solely outsource to our supporters. Give us a like on Facebook - I’m feeling very lucky to have been given a third week at the hospice and will be returning tomorrow. I’ve learned so much already and I’m hopeful I can keep up the exercises in the real world. I’ve spent the weekend catching up on scheduling posts for the upcoming week for the social media pages that I help manage (@irishedsandhsd and @dundalk4choice to name a couple) and so apologies that I haven’t had a chance to respond to personal messages yet. Much appreciated though! πŸ’• Blog post coming up later tonight hopefully. • • • #ehlersdanlos #ehlersdanlossyndrome #hypermobility #hypermobilityspectrumdisorder @simonharristd @campaignforleo #hypermobilitydisorder #hypermobilejoints #itsourtime #raredisease #rarelydiagnosed #rarediseaseire #rarediseaseireland #chronicpain #chronicillness #ehlersdanlosawareness
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This evening (Sunday) I got in a quick walk with Louis and Emily. I used the wheelchair earlier in the day to conserve my energy and make sure hip wasn't popping too badly by the evening. The OT is focusing on energy conservation such as this. But one of the hardest elements of this condition to explain is how each day can be totally different -One day I walk like a crab, the next day I could pass as able bodied (at least for the first few minutes of my walking anyway). Some days you may notice my right foot is bent inwards as I walk, other days I drag it. It's so unpredictable.... The ministry of silly walks was actually based on my life story, ha.

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