The ministry of silly walks

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

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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 💪🏻 www.eds4ire.ie • • • #occupationaltherapy #hydrotherapy #cripplebabyblog #edsandhsd #irisheds #irishedsandhsd #ehlersdanlos #ehlersdanlossyndrome #fightlikeagirl #ehelrsdanlosawareness #physiotherapy #hypermobile #hypermobility #hypermobilitysyndrome #hypermobilityspectrumdisorder #spoonie #chronicpain #chronicillness #disabilityrights #disabilitypride #chiari #chiarimalformation #intercranialhypertension

A post shared by ☾Kitty Colbert☽ (@kittypotpie85) on Oct 24, 2018 at 1:48pm PDT

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.

Health (and life) updates - October 2018

Just some housekeeping and catching up! I've been super busy with various projects the last while. To read my last health update, click here. I've exciting news tomorrow, but all this malarkey first.

Physio, bracing and the never ending saga of the hips 

I continued with my local physio briefly, but we have naturally reached the end of the road. Although I know she is available any time I need to contact her for advice.

I was yet again denied surgery for my hip -this time by a consultant in Beaumont. On arrival neither the locum nor the consultant had heard of Ehlers-Danlos syndrome, but of course, as always, ten minutes later (after I told them what it was), they were experts. Spouted off rubbish about how the surgeries to help preserve my hip may make me worse, due to my EDS, in that more than likely/ in most cases the surgeries are unsuccessful. No stats, no real information. This contradicts what I know from other EDS/ hip dysplasia patients who are living their life to a much higher level of mobility (hip wise, at least) than they were before. While this is all anecdotal, clearly, at least I had anecdotes. These doctors had no information. There are indeed some issues with EDS patients having surgeries -for one, we take longer to heal. Major surgeries need to take certain criteria into consideration (for say, the likes of surgery for Chairi Malformation). These were not the issues they brought up however, in fact they just rambled.

On entering the orthopaedic clinic I first met with the locom who discussed my X-ray and noted how I didn't yet have arthritis. Those of you with similar conditions will know how consultants and doctors alike hate using the word "arthritis". They think it will send patients into uncontrollable hysterics, that we will demand action. Especially women. We will become so hysterical our vaginas will fall off and we will wither and die with the shock *clutches my pearls*. At my age, with untreated hip dysplasia, I would be extremely lucky to not have some arthritis. I'm often told I have "damage", indeed apparently I have more "damage" on the healthy hip rather than the dysplastic one. Either way it's a non issue -I have much more pressing issues that the natural occurrence of arthritis! Plus I am on painkillers and medications that may be used to treat arthritis anyway, so a sub diagnoses of such I pretty irrelevant.

So the consultant enters, babbles on about why I can't have the surgeries to save my hip -We would make you worse, they aren't good surgeries, your EDS, your EDS, your EDS... When they realised both their lack of knowledge of EDS and even recalling the names of the hip surgeries were showing, the consultant decided to play another hand. "You have arthritis so can't have surgery". Wow, what a game changer, after twenty minutes of trying to work one angle lets just go with this instead. My eyes darted to the locom as I spoke, "Oh really, it's just I've been told I don't have arthritis". "Yes, you have arthritis" the consultant repeated, proud as punch with his decision to whip out the A word as it suited him. This isn't my first surgery rodeo, so while I understand that yes, bad arthritis makes a joint unsuitable for surgery, that simply is not the case here. I have quite mild arthritis/ "damage" I gather from previous X-rays, and my healthy hip is greater effected than the hip that actually needs surgery. Certainly not enough to impede any needed surgery.

Health updates - Summer 2018

And now for all the boring stuff. I'll keep it all as brief as possible!

Here's what's been happening since my trip to London...

The experiment 

On the advice of the London physio, my own little miracle worker decided to try and unlock my thoracic spine (which we believe has been locked since childhood). As this being locked is causing immense pressure and strain on my c spine (meaning that my head has less support and the neck is struggling to keep it upright daily as the c spine is doing so alone), unlocking it would help bring about some strength and stability. Maybe even decrease the neck dislocations.

She explained to me how this slow process would go. I would lie down on my front and she would gently touch along my t spine, encouraging the vertebrae to open slightly. There are apparently four stages to this process, although with my issues she was reluctant to even suggest that we get to stage three. She was hesitant, as she has never attempted this on a patient who dislocates/ has EDS, but as I was keen and London agreed it was the best option for me, she was willing to go ahead with the treatment.

We would start at stage one and build up, I would see her one a week to try and progress to the next level. It was somewhat experimental, and neither of us could predict the outcome. Firstly because, well, everyone is different, and secondly because she has never performed this treatment on anyone with complex issues. I could sense her fear, so I really appreciated her agreeing to proceed.

I lay down and she gently touched along my mid spine -tiny, little nudges. Not even taps. Muscles that hadn't been activated in years began to spasm as the vertebras were moved. Odd twinges along my sides, radiating from the spine. It was a strange feeling but not unpleasant. The movements were so tiny yet so powerful. I left that day with an appointment for the following week.

Unexpected side effects of the bizarre kind

Within minutes of leaving the clinic my gag reflex went into overdrive. I started making the strangest sounds as my body lunged forward, violently spasming along my diaphragm. It wasn't painful, but was annoying, and uncontrollable. As well as hilarious. I sounded ridiculous. Something almost goat-like. Bicky was in stitches. This was a very unexpected side effect from what seemed like a simple manipulation of my spine.

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 - Summer 2017

So it's been a while since I've updated the blog with any health news, and as always things are progressing slowly while the journey to receive any suitable medical care is dragging behind -and it's a constant battle to keep up against the increasing de-conditioning. 

Disability Aids

I suppose the main thing has been that I finally applied, and successfully managed to get, disability payments. It's still means tested, but not as harshly as job seekers, so I get a tiny bit more than I did on job seekers (Bicky works so I'm accessed on that of course). Most importantly though, it goes straight into my bank account. They also just sent me a free travel card, plus companion! Didn't have to apply for it. Delighted. 

I also applied for, and received, a blue parking badge. The rollator doesn't fit in the boot unfortunately, so it can be hard to get it out from the back seat (space wise, between cars). So feeling like an absolute king with all my extra space and rollator. Outa me way, bitches. GP was shocked I hadn't already applied for one, making me feeling an utter gobshite (seriously, there's needs to a how to guide for disabled adults!).

She also said I should also really apply for something called a primary health certificate -they are hard to get, will require a  medical assessment and probably an appeal, but she thinks I will get it and should have one. I've only actually heard that term for the first time a while ago, but from what I gather it makes applying for things (like disability parking permit) a lot easier... Had one of those moments of "Ah, I am so disabled". Which sounds ridiculous -I fucking write about disability for goodness sake, I just completed an art piece for an exhibition on the subject of chronic pain. My social welfare payment is called DISABILITY. Yet and all, when I'm with a GP or at a physio assessment, I'm almost... shocked, I guess, taken a back when they refer to it. I'm not in denial really... I guess I'm just dumb? LOL. Or used to it. Yeah, it's probably that.

Back on the road

Hi all, long time no write! Unfortunately, as those who follow my Facebook page already know, I've had several health issues impeding my typing and so have had to take an unexpected break (including good ol' peripheral neuropathy, an ongoing issue worsened by the long-term affects of chemotherapy). Hopefully the end of this is now, and I can start writing more regularly again.

So, to keep everyone posted -My latest health news, on the road to a real, full diagnoses... Or at least, the road to finding any form of doctor/ specialist/ consultant who will take me on, who I don't scare the bejaysus out of, who will not look at me with sad eyes and tell me "I'm sorry... I'm not qualified to deal with your case". 

I recently had yet another appointment with a physio -this was my third physio appointment as an adult, although this at least was in a Dublin based hospital, and was a sit down/ office appointment to review me for possible hip surgery. Like a pre-pre appointment before seeing an orthopedic surgeon.

Unfortunately, (as with the two previous physio appointments that I've had in the last 10 years, and the neurology appointments, and a couple within an rheumatoid department a long time ago) I heard those same words... "I'm really not qualified for this".

I'm not upset, or angry, I went in with little expectations. However, the next part hit me a bit hard - "A surgeon won't touch you... you're too unstable, you have no core strength or balance and will not recover well from surgery. I'm sorry". It was a blow, but an honest one, and perhaps it's something I should have considered....

Overall the appointment went well (yes, really, haha). She did all the relative and usual strength and balance examinations on me, before hitting me with these two bits of disastrous news... they're so embarrassing, I can't do them at all and feel like a massive idiot, I don't think