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.

Friends corner: Ehlers-Danlos Q&A {part 1}

I thought it would be rather nifty to include some of my pals in a blog post, while also helping to spread awareness of Ehlers-Danlos syndrome.

Through the years I've been diagnosed with several health issues, including cancer, and so I know as things haven't been as linear as they probably should be (my diagnoses journey has actually been really and truly all over the place), that perhaps things can get mixed up. I explain symptoms and issues  of course, but my conditions (especially EDS) can seem so broad, vague and I'm sure confusing to loved ones.

As time has progressed I'm unfortunately unable to spend as much time with friends as I wish. I'm currently on house rest, as having issues with my C spine and unable to travel much (car journeys have always been painful, but recently they are excruciating). I have a couple of important trips over the next two months that I have to make, so the break is needed now in the hope that  I can indeed travel by then. And with general life getting in the way, it can be hard for friends to visit me. So I'm really excited about this segment.

I told some friends that they could ask me any question about EDS -particular to my case or just in general, something maybe they have always wanted to know or were afraid to ask, or just simply never had the opportunity to ask. No silly questions. Although silly questions are also welcomed -haha, funny is also good!

So here is post one of my friends corner: Ehlers-Danlos Q&A. These are some of the people who made me who I am... Please don't judge me too harshly based on them -I can't get out enough to make new ones 😛 And if any of my other mates out there would like to participate in part two, please contact me! E-mail: kittypotpie85@gmail.com or through my Facebook page:
Cripple Baby - Disability Blogger.

Gabriel 

2009

2010

2015

Gabe is one of Bicky's (my partner) oldest friends, although I actually met him shortly before I met Bicky. I think around 2008/ 2009.

Over the years we've bonded over our passion for garlic bread memes, love of Buckfast (you will notice that crops up as a mutual bond for most of my friends) and our shared inner spirit similar to that of a grumpy, old farm cat.

Stick'er i-tin debiscuit-tin

Q. What was the most inconvenient time that a joint has dislocated?

M'anam presents 'Open Your Eyes' art exhibition

So I've been really quite on here, apologies! Hope you've been keeping up to date on my Facebook, Twitter and Instagram. I've been busy with side projects and the all important health stuff -updates on the latter in a separate post in a couple of days.

One project that I'm very excited about, is an art piece that I've submitted for a local exhibition to be held in Dundalk museum this Friday (July 28th). The event is organised by M'anam, a community group who organise various platforms for those with know-how on multiple subjects, to showcase their work and knowledge. They hope to teach and promote different cultural practices, skills and hobbies. So far they have done so through a number of fun and informal talks in Dundalk. This is their very first art exhibition, and I'm honoured to be taking part alongside some wonderfully talented artists.

Mobility aids 101: trough crutches VS. rollator

Whatever my decision - Mobility aids need pimping up. Always.

I've been trying my best to stay mobile, or partly mobile at least. I've been going to the pool and gym when I can -averaging only once a week so far unfortunately. It's painfully slow and annoying, but I have to accept that and pace. I like the treadmill, as I can walk while holding on to the sides. I don't like the increase in heart rate though (my resting heart rate ranges from 1110-130 due to suspected POTS). I increase the gradient so that my knees are being worked on (like with walking the pool). My knees are my biggest problem at the moment, and my doctor has said I should be working on this the most for the time being.

For a while now I have been contemplating picking up some more aids. The cane is only helpful for good, sometimes medium days. It's of no good to me when one of my knees is playing up and I need to elevate that leg, and doesn't help with practical things like carrying a handbag or when I'm really dizzy from low BP (POTS/ dysautonomia issues).

So I have two options...

One I've mentioned before, both in posts and on the Facebook page - Smart Crutches. These are basically trough crutches, meaning the part on the arm is like a trough shape. They give much more support to patients who have issues in their arms (like with that of EDS, as any of our joint can dislocate and partially dislocate). They're quite liked among the EDS community, so it was the first thing I thought of. They would be perfect for bad days, as rather than the wheelchair, I could still stay mobile (assuming I can walk to some degree) and have support on both sides of my body (instead of one, like with the cane). Also, if I injure my knee, I can use the crutches to hop.

The road to Cork

As regular readers will know, I was diagnosed with joint hypermobility a while back (although this was nothing new to myself) and very possibly have dyspraxia (they seem quite commonly linked). However, I find myself in the predicament of being too unwell for physio and occupational therapy, and can't get any doctor to take me on or even advise me in my current state. Low muscle tone, no stable core, lack of balance and frequent subluxations... All becoming worse over time, as I continue to not acquire any medical help. But everyone in my GP office have been truly great, all willing to learn and research and try me on different medications. If it hadn't been for one doctor there stepping out of her comfort zone and putting me on Baclofen a few months back, I honestly have no idea what state my body would be in now. I'm far from being healthy but I'm a long way from where I was before I began taking Baclofen. It's one of the many reasons why I feel so strongly against both medication shaming and anti-science baloney (as well as pseudo-science). The wonders of medical science and the amazing things we have achieved as the human race leaves me in awe and amazement on a regular basis, so I loath any click bait scams that threaten our gullible society back into caves. 

...Well it wouldn't be a blog post if I didn't go even slightly off topic, haha. Right, so where was I...

So a bit about joint hypermobility: 

Having hyper mobile joints literally just means that your joints over stretch the usual range. If this is accompanied by pain it is often referred to as joint hypermobility syndrome. The joints over stretch, and as we looked at, can cause frequent subluxations or even full dislocations. This leaves me and many sufferers in constant pain. I find my subluxations were causing my muscles to react in intense muscle spams, which increase my pain (as well as make me look like a big, flailing fish on dry land), hence the need for Baclofen.

Many people are hypermobile/ double jointed, but they may not have any pain. So, if someone like me encounters a doctor who is not knowledgeable on such conditions as EDS, they may confuse the two.

The terms hypermobility syndrome and Ehlers-Danlos (type 3) are interchangeable, but really are the same thing. Some doctors simply prefer one from the other, and of course, using the term "joint hypermobility" spells the issue out in a more obvious way. To define hypermobility, doctors often use the Beighton scale in evaluating patients. If you Google images associated with EDS, you will find the extreme versions of the condition -please note that in order to be considered hypermobile, you don't have to have all of these signs, and you may not stretch as exactly in these photos. For instance, I can pull my thumb closer to my arm than most other people can, but not all the way to my arm as in the picture below:

In this example, I stretch enough to be considered hypermobile, even if not all the way. Other joints do over stretch to the full extent, and I'll talk a bit more about my personal case below -I just think it's important to note that you may not be as extreme as you will see in photos of the condition. While hypermobility is common in children, we all lose some of our elasticity as we get older -and those with hypermobile joints can be the same. In my own case, my body can stiffen and become very tense, due to the muscle issues. Being so tense and rigid goes against my body's usual hypermobility, and so it can make it hard to spot in older patients. Many specialists now use the Brighton scale, as they see a strict Beighton as outdated.

The cause of EDS lies within a fault in our collagen, the most abundant protein in the body that helps hold everything together (present in skin, joints, blood vessels -which is why symptoms can be so vast and hard to link). 

Because of this, the condition is more than just hypermobile joints and pain. A specialist will diagnose it on several criteria, including examining the patient and asking about medical history/ family medical history. Someone with EDS hypermobility type may have (although may not have all) some of theses symptoms:

When the chronically ill wish they had cancer

Yes, That Heading Really is a Thing

I often hear people with chronic illness comment on how they almost wish they had cancer, so they could receive some real medical care and at least a doctor would take them seriously. It's usually more so the chronic illnesses that there is no actual, specific testing for (like fibro, ME, and so on) and so sufferers are made feel like they are making it up or that no one cares. They don't mean this statement in badness, and maybe I just understand it better from both sides as I, well, have lived it from both sides. Sure there are tests and assessments for dysautonomia/ POTS, joint hyper-mobility/ EDS and hip dysplasia, and the related issues that I have, but it is a fact that society as a whole cares far more about cancers than any other diseases. I'm not taking away from that, that's not a bad thing. Cancer can be deadly, after all. Some forms are even preventable, everyone knows someone who has had cancer or passed from cancer, it has so many forms and truly is an epidemic of great proportions. So naturally enough it is high profiled -and so it should be.

But to those who suffer from chronic illness and other diseases:
I get the frustration of being told -
"There is nothing I can do",
"I'm not qualified for your case",
"I'm sorry, I can't help you",
"Have you tried paracetamol?",
"You're wonky, you should be in pain"...

I get it, more than most people.

And so when I was diagnosed with cancer, sent to specialists who were able to help me, had a team of people looking after my care and side effects, I was honestly elated beyond belief. I remember during chemotherapy getting a really bad rash on my hands, very raw and dry. Pretty normal with chemotherapy. When the nurse saw it during one of my sessions she said "why didn't you tell me??" and gave me some cream to soothe it. I was stunned. Why hadn't I told her? I realised I wasn't used to being unwell and someone being able to help me... That just hadn't happened before. Over the years I had stopped telling doctors things, partly from the trauma of my youth. Being told, "crying won't make you in any less pain", and so on. It made me stop talking about it, especially to doctors. I was so happy by this minor gesture, that I wanted to cry and felt overcome. It was a simple thing but a huge realistion. My whole treatment was like this. I received the best of care and help with all side effects and issues.

I breezed through chemotherapy and radiotherapy with a happy attitude (my chances of survival were high, so that helped). It was often even a joke with my radiologist -she laughed at me in appointments saying I was her easiest patient to date. Never complained, never had issues I couldn't handle. The chemotherapy nurses thought I was great too, and I used to laugh with my hematologist who also seemed a bit stunned by my upbeat attitude and eagerness for any treatment they suggested. Do chemotherapy and radiotherapy have side effects? Yep. But only the healthy are so privileged to be stupid about treatment that is life saving. I was simply elated to receive medical care for something -the fact that it was cancer should have brought me down, but I was honestly really happy.

That's not right. Someones general medical care shouldn't be so bad that having cancer was almost a relief. In hindsight I realise how horrible that sounds, but I just truly appreciated having regular doctors and ones that could help me.

So to everyone out there who has posted a meme in many of the chronic illness groups that I'm in, about how you almost wish you had cancer instead of the illness you do have -I get it. You are, obviously, in TOTALLY bad taste, lol, and you should reeeeeally know this. But I get it. I also get bad taste though, in fairness.

Oh boo-fucking-hoo.

#LWIBloggies2016: The eve of the awards

Tomorrow is the big awards day! For previous posts about it, see here and here. This is the second time I have ever been nominated for a blog award, and the first time that I have ever been shortlisted and then placed into the finalist list (the previous awards didn't have any shortening on the nominations prior to the awards night).

I've been so unwell lately, that I'm quite nervous about attending. I've had two social occasions recently/ the last couple months that really took it out of me -even though walking was limited on each occasion as much as possible. Where once an event (sitting down, relaxing, not really doing anything) would have had me in bed for the next day or two afterwards, events (of any kind) now have me in bed and in pain for days So while I have to choose wisely and have a massive sense of guilt about attending, I'm still determined to go.

Guilt might like seem like an odd term there... I suppose I should explain.

As you may have read in previous postings, or even rants on my Facebook page, every activity takes so much more energy to accomplish when you are unwell. Hence where the spoon theory comes into play (although it isn't always as straight forward). I have to pick and choose small activities as well as the bigger ones -which is important to do now, which can wait. This ranges from getting dressed to walking the dogs briefly, to doing the dishes or to bigger events like socialising.

If I choose something on the top scale today, going to socialise with a friend for a couple of hours, then I can't do anything else that day or the next day. If I do the laundry and wash the dishes then I will have to nap and can't play with the dogs. If I wash my hair then I can't make dinner and Bicky has to make it (which he does loads, I'm not at all being sexist and saying women should make it, LOL! Just of course I also enjoy doing it and want to help out more often). It's give and take and many times I feel like I'm letting others down, in never ending and forever loosing battle to accomplish as much as possible.

I desperately want to work full time and miss my job, even part-time, but I get up and use my energy to get dressed (yes, that's how ridiculous it is) so then I need to nap or at least rest for a while. I need to get up extra early to prep myself -take my pills, sit up and try get my BP higher/ normal before standing, pop my joints into place, move my hands and feet to try get some feeling back into them (peripheral neuropathy issues). Of course sleep is something not really in my control, and either is waking up. From "painsomnia" to phases of sleeping 20 plus hours, completely knocked out and non responsive to anyone trying to wake me. It's an endless rotation.

Chronic pain is a piece of Cake (a movie review)

It's not often I purposely watch movies that contain scenes of chronic illness, pain or disability. I might write about my own experiences, come across as open and honest and able to deal with what life throws at me, but sometimes it's too hard to watch a mirror image of yourself through art (on a side note I watched 50/50 when diagnosed with cancer, it's also a goody). It evokes emotions and feelings that can be hard to deal with, but it can have it's good points too. It's depressing, yet releasing. Nice that someone, somewhere understood, that writers and actors really did their research. You feel in some ways respected by their work, and of course gratitude that they went about it the right way and not the easy way. These are not the type of movies that everyone will love, or that will break any records. When Hollywood gets it right, it gets it right. And Cake is one of those movies. Hard to watch, hard to admit its truth, but in a weird way it comforts me to know this can be used as an entertaining resource to those who want to understand what life with chronic pain is like. I hope that such moves affect others in ways of education and information, even if I personally find it difficult to watch.

Movie reviews aint my thing, so bare with me while I attempt to dissect this one while not giving away too much of the story line.

Jennifer Aniston plays a role that I would have assumed out of her depth, a woman named Claire living in chronic pain due to an accident. No make up, realistic scarring, greasy hair and pajama looking clothes nearly all the way through the movie show Aniston in a light that we're not used to seeing her in. The Hollywood beaut is normalised down to mimic the reality of what a chronic-painer may look like -heck, I'll be honest, I haven't had a proper wash in about a week! I've the water heating up now as I type in an attempt at this again. That's disgusting, yep, but I haven't had the physical strength to do so as of yet and I despise asking Bicky for such help. I rarely get dressed in "outside clothes". That's the reality of my life and many others, and that was the reality of this movie. No glorifying illness, in any way whatsoever. No scenes of over-enthusiasm, easy rehabilitation or Jennifer Aniston at any stage saying "the only disability is a bad attitude".

The bad, the really bad, and the never ending

Physical pain is hard to talk about, almost as much as it is to live with.

I have had a horrible week. In general, I've had a very bad few months, but this week has been the worst -Although maybe I say that every week. I don't even know anymore.

The Baclofen I taken to control severe muscle spasms and tightness (which are usually quite good) are barely doing anything now.... It's a really strange sensation to explain. My body is like stone. Like something is grasping by whole body and squeezing.

A sharp, knife shoots through my shoulder blade. It cracks, pops, crunches. My neck twists. The only relief is by bending and pulling the shoulder, into place it seems. It's excruciating, but eventually after all the pulling and popping, it becomes numb. For a while.

It often travels from the shoulder, pouring down the arm. Becoming prominent around the joints -elbow, wrist and sometimes even fingers. My fingers have become deformed in the right hand the last few years, and I have no idea why. All I know is pain.

The hip pain is never really hip pain. It's hip pain, buttocks pain, lower back pain, thigh pain and knee pain. On days when I "over do it" it pops, then burns and swells. All these things are normal with hip pain, particularly the buttocks and the knee referral.

My flat feet cramp. My toes turn up in an effort to stabilise my body and not fall over. My legs are numb and unusable, for the most part.

I sleep all the time, yet I never

#IrishPainies

I vaguely mentioned previously, in my 5 year bucket list, that I wished to start an Irish support group for those of us who suffer from chronic pain.

I've never felt that I needed one-on-one counselling, although I have searched for local support systems -For any of my conditions. To no avail. And then of course, even something for general pain. Again, nothing near by. But sure I guess, everything is online these days, and I'm already a member of a couple of Facebook support networks for a few things. However, there's very few Irish based ones. I find these groups a tremendous crutch of support and

Gym stuff

As regular likers of my new Facebook page will know, I have recently tried my hand at going back to the gym. This is something I used to do on a regular enough basis -Whilst I could not run outside, I could somewhat run on the treadmill. Running being one of the basic activities I miss doing... Along with general sport and activities which of course, require running. But alas these days, I simply miss walking!

I began my (what became a long) break from the gym gradually. I had to stop when I commenced chemotherapy, as gyms are apparently one of the most germ filled places ever and I had little to no immune system. I did go back briefly after I finished my treatment, but as you all know, my body has declined even further the last year, and with that, my ability to exercise...

I was never a "gym bunny". Lets be clear on that! Haha.. I went once a week, sometimes once every two weeks -TOPS. And the odd walk with my dear friend Christina, coupled with leisurely walks with the dogs. Even these things were struggles, but doable. At one point in my life.

But I really do miss the gym. I love exercising and the rush I get from it... I don't enjoy the pain, of course. How and ever, people need exercise to live and to thrive. And so I recently started going again. I went twice and then joined fully, so hopefully I can keep going once a week to begin with and maybe twice in the future... I just have to remind myself that my "over doing it" is different than other peoples over doing it. And if I forget, I always have the crippling pain to remind me.

____________________________________________________

A couple of FAQ's:

1. What about swimming? I hear that's great as a low impact sport?
It is. But unfortunately, I cannot swim. I have tried several times and

From neuro to zero

As long-term readers will know, I was attending a neurology clinic in Beaumont hospital... Well, kinda. Over three years I had about four appointments. Extremely slow, asked the same questions each time and with... well, lets just say the term "neurologist" is used quite loosely here in Ireland... Rather than repeat myself too much, here's some Facebook posts and links on the subject:

⚚ Click here to read about my very first neurology appointment ⚚

⚚ Click here to read about my second neurology appointment ⚚

I don't think I've really any other posts detailing them... the third appointment was not only quick, but a disaster, and not something I really like to discuss:

Firstly, the absolute prick, gawked at me when I entered the room, like a bully in the playground staring at the cripple kid -"What's the cane for??" he asked, sounding grossed out (seriously!). Like he hasn't seen a disabled person in a neurology clinic before. 

He hadn't looked at any of my notes and instead a few minutes later asked, "what's wrong with you?" -again, sounding pissed off... I replied that was the reason I was going to these appointments (duh) and hadn't been fully diagnosed yet (except the birth defects, obviously). He then got really flustered and

Christina Tournant's one year anniversary : That could have been any one of us

♡♡♡♡♡♡♡♡♡♡♡

It's nearly 11pm here in Ireland, meaning it's just one hour away from being March 5th.

For many sufferers of dysautonomia, and probably for the chronically ill in general, March 5th is a sad day of remembrance. Remembering a young women, Christina Tournant, who took her own life on this day last year. Christina had fought her battles with POTS, hiding her anguish and despair from friends and family. She had to take a break from her education and put her life on hold as the physical illness took over. But no one knew the real pain inside this young woman.

On March 5th of last year, because of the chronic pain related to her dysautonomia, Christina Tournant took her own life. She jumped