What disabled people want on International Women's Day

Today is International Women’s Day. A day when we consider the inequalities in society, including wage gaps, social standing, opportunities, domestic abuse. The often invisible and overlooked females in our communities and workplaces.

Now stick that person in a wheelchair, or a walker, and isolate them with inadequate public transport, tell your children to stop looking at them or that they can't ask questions, take away representation in films and tv and books, create buildings as tall as the skies and pile obstacles all along the sidewalks and pathways. Don't call out when people take our parking spaces, or skip us in queues, or make assumptions based on our young age... refuse to listen to those affected by all of the above.

Don't get me wrong -all my aids are works of beautiful engineering that gift me freedom. They're not the villain in my story. But there is only so much they can do in a society not built for them.

Why Rare Disease Day is important to me

Today is Rare Disease Day. This day is for everyone with rare medical issues to spread awareness of their various conditions, and to take pride in our differences. Ehlers-Danlos syndrome is a connective tissue disorder -we produce faulty collagen to be exact. Simply put the glue that holds our joints together over stretches and so our joints easily sublux and sometimes even fully dislocate. On the other end of the joint hypermobility spectrum is Hypermobility Spectrum Disorder. These complex conditions can effect so many parts of our bodies, but for many of us the main symptom is chronic pain. EDS has 13 subtypes, and while EDS itself is seen as a rare disorder, Hypermobility Ehlers-Danlos Syndrome (hEDS) is the least rare (and the most common) form. Because of this hEDS may be viewed as a rare condition, while others view it as simply "rarely diagnosed". It's also rarely known -by the general public and my medical professionals. Rare Disease Day reminds us to show the world our zebra stripes proudly; to stand up and be counted amongst a group of individuals who usually go unnoticed. 

Friends corner: Ehlers-Danlos Q&A {part 2}

Following on from part one of friends corner: Ehlers-Danlos Q&A, here's part two with some more friends. Enjoy!

Sarah

2005                                                                                             2006

2013

2009

2014

2015

2017

I became friends with Sarah around 2003 as we were part of a wider group of friends (scup the dirty AOH grungers, haha) and we later lived together.

I inherited the semi-famous Tubby cat (AKA Tubbz) from her, spent Christmases together (AKA St. Spickets), became godmother to her beautiful son Cian, and later devastated by his untimely passing. We've also been through many a carton of wine, mountains of white tights, bottles of Bucky, buckets of bobble hats and a million different hair colours between us!

Q. How do your illnesses effect pregnancy and child birth?

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.

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 adventures of Blanky and Bicky

This January marks a special time in my life -it marks mine and my beloved's (known as Bicky on the blog -Bicky and Blanky being nicknames we gave each other in the early days) anniversary. Seven years together. Seven fun, dramatic, wonderfully adventurous years spent getting to know each other, and discovering ourselves, too.

So much has happened in that time...

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".

Introducing Saoirse

Finally I would like to introduce you all to my new wheeled, part-time pal, Saoirse -A name suggested to me on a Facebook post and also in real life (seems the most popular one)... I was aiming for a girls name (as all vehicles are female, obviously) and was leaning towards something Irish. Saoirse seemed perfect as it means freedom (ha, hopefully)...

These photos were taken in Drogheda a while ago, where we first took her for her first spin -just before a storm hit! Hence why I'm holiday my hat down, ha.

I'm still very much mortified about needing to use a chair, even part-time, but I want to get out of the house more. I'm not ready to use it around the ol' hometown as of yet, but she came in handy on my latest holiday to New York -photos of that lovely trip to follow tomorrow. There's no way I could go on a holiday like that (visiting museums, sites, and all the walking these things entail -hell, even all the walking in the airport would be tough) without a wheelchair.

Stop telling children they can be anything they want to be - They can't. And that's ok !

I'm a big believer in making your own life and not depending on "what will be, will be", wishing things/ magic woo or blaming others for your situation. In this life hard work, actually DOING gets you places -no matter what wishy-washy quotes on Facebook tell you.

You cannot be anything you want to be -Disney and your parents lied to you. That's ok though! If you could, life would be far too easy. Boring, even. Have faith in yourself, of course, but back it up with actual action. It may still all fail and fall apart, but you tried -You didn't wait for faith to screw things up instead. If it makes you feel better that "it wasn't meant to be", "God must have better plans for me", -Sure, go with that. But sometimes, can we not just admit that hey that's life, and sometimes life is shit? Can we be practical about it for a minute? 

When outcomes are out of your hands, such as with chronic illness and disease, then adapt. Change. You can control how you feel and you can control how you alter your life plans... as a kid I wanted to join the police. I kept this dream with me into my teenage years. I loved art and writing too but wanted to keep these as hobbies, rather than a career. I think it was at 17 I realised joining the police would never be possible -I could not run. I simply fell over my own legs when I tried to. I had known deep down, of course, that my health and abilities had been declining for years. But I had ignored it, pretended I didn't care much for running and sports rather than the truth that I was struggling to do them... That realisation devastated me, more than I actually even

My elephant in the room -The wheelchair conundrum

I've mentioned several times before in past posts how embarrassing it can be, stuck in between the two worlds of the enabled people and the disabled people. Sure, not everyone ya meet out there is dumb-as-fuck/ is aware that disabilities differ -Some extremely visible, some hidden. But I can't stress enough, this world view is not as common knowledge as you may think.

For some it's either able bodied/ 100% fit and healthy Vs. little Sally has no limbs and is blind and deaf, lets stick her on a Facebook post with some inspirational words and say Oprah said it (Oprah didn't say it? That's ok, it's the internet, no one will check) so we can all feel better about the situation. Maybe even type AMEN, then we're all defo going to heaven. For some, it is indeed that black and white.

Example -the recent news stories of people getting shit for either stepping out of their wheelchair for a minute, ('cause ya know, never ever in the history of people has anyone eeeeever had to only use the chair on a part-time basis) or not owning a chair to begin with, and notes left on their cars calling them fakers -even though they have disability badges (because things like Crohn's disease or other internal diseases do not exist either). See some examples here:


EastEnders star Lisa Hammond abused in the street

Coronation street star Cherylee Houstan falsely accused of being a benefits cheat

Mum of disabled toddler returns to car to find threatening note

Woman suffering from fibro finds cruel note branding her "fat and ugly" after she parks in the disabled bay (although this one should really get a badge if she guna be at that!)


For people like this, it's a simple case of if you weren't in a wheelchair at birth, why would you be now? They don't view conditions as progressive. If yo momma didn't pump out the wheelchair from her vajayjay straight after you plopped out, then you're a faker. Because wheelchairs are super fucking kewl and everyone wants them. For others, it's the very common, over-stated "you're too young to be sick" mantra.

These prejudices and extreme/ bizarre/ old fashioned misconceptions exist even without the visible elephant in the room that is the wheelchair. A cane doesn't really

The March into summer

It's the end of March. Not long until summer now, not long until the end of college, not long until little Kitty rests her weary bones (and muscles, and nervous system, har!).

Summer will see me take the time out I need to concentrate on health, maybe push for surgery, and see where I can go from there...

Marching on; one paw in front of the other!

...The solar eclipse of 2015 was an amazing experience for me. I remember the one that occurred when I was younger -I still have the newspaper clippings. Wish I had better photos, but it's the experience

8 things you should know if your friend suffers from a chronic illness

There's loads of these types of lists to be found on the internet today, but thought I'd write my own -What I believe are 8 important notes to remember if you have a friend or family member suffering with a chronic illness -These vastly range from MS to Crohn's and everything in between (literally too many to mention. Both visible and 'invisible' illnesses)...


1. Not being a doctor is ok. Not being able to pronounce the condition your friend has is also ok. Not knowing anything about it, is not ok. 
Your friend or family member won't expect you to write a thesis on the subject, and you probably stumble over the letters trying to pronounce their illness and any medications they take for it. But if you are constantly asking what the issue is, and can't use Google, then just don't speak at all. Even those who are open and honest about their illness will get fed up hearing themselves say the same things -Ask once, ask new questions, and for the love of your friend's sanity, use Google.

Some won't want to discuss it -they may find it upsetting, they may partly be in denial. In this instance -Google, Google, Google! They might change their mind in the future so take an interest. Please use reputable sites though such as the Mayo Clinic.

It might be a big part of your friends life and who they are as a person. If you

Sleeping baldy -Why I miss chemo

Oh blerg.

It's one of those days/ last few days: hip at me, extreme fatigue, general zombie mode. And I can't even blame the cancer or the side effects from treatment. It's times like this that I miss the chemotherapy -best pain killer ever, as I said before. I'd say I could be the only person in history to make such a statement (missing the chemo), but it's bloody true!

I set my alarm today so I'd wake up early (to ya know, do normal shit and actually have a life), which I did, although then immediately fell back into a coma. Blerg, blerg, blerg!

The last few days I seem to be working in rotations: One day ok/ can get up and do stuff, the next day coma, next do stuff, coma, and so on... any other dysautonomia/ illness heads get this? Think I prefer the general on/off good/bad phases. This type is hella annoying. Hip and knee pain is decreasing though -hurray.

At least it's raining today... don't feel like such a lazy hermit when it's raining outside!

I miss the real world.

Mid-way PET scan, exercise and other shenanigans

Sorry to my followers that I haven't been on here in a while -all is still good in case yous thought I was too ill to type :) Have just been trying to enjoy my time off college and work (have decided to defer); although still feel a bit like a useless bum!

So, the latest cancer news: Had my mid way PET scan last week and received results today from the haematologist.... everything is on track, the cancer is reducing and he said he's happy with the results/ it's what he'd expect at this stage. So, brilliant stuffs! I wasn't very worried anyway -I know from the online groups I joined, that even if the cancer had spread, Hodgkin's lymphoma is still very treatable and can just sometimes take longer than expected. But this is great news altogether! Continuing with the plan of 4 cycles of chemo, then radiation. Still to have a meeting about the latter and find out how much. I'm now on my third cycle of chemotherapy.

Chemotherapy side effects: Still doing relatively well with the whole side effects -have been very much so blessed in that way. Previous hip/ leg/ back pain, spasms and stiffness are still actually benefiting from the chemo drugs and have yet to go through a 'bad phase' since starting my treatment.... I'm going to be such a bitch when I finish and the pain comes back, har!
The dry rash on my hands has now progressed to swelling, mainly around the nails, and is causing some pain and numbness. This is apparently due to the drug that burns the hell outa me.

PICC insertion: The haematologist has said that I really should get a PICC line inserted because of this, and my general shit veins, so he's booking an appointment. For those that don't know, the PICC line is a semi-permanent tube inserted into the vein in my arm and up my chest, which will allow for a much handier drugs treatment as they won't have to poke the feck

Survival guilt, feeling like a fraud, and viewing disability as a personality trait

Again I'm posting on two issues here, comparing my older illnesses with my new (and hopefully temporary and short-term) condition of Hodgkin's lymphoma.

1. Survival guilt
Usually reserved for those who have well, actually survived cancer or illness and came through the other side, I think I actually began to have this feeling from my first chemotherapy session -if not even from diagnoses.

I wouldn't say I was in denial about having cancer, or that I am now, but the reaction of the doctors made me feel that not only would I probably be ok, but that I was lucky. This is all well and good, and I do definitely believe it! However, that little fact only helps to produce feelings of guilt in me towards sicker people... particularly when I go to the chemotherapy sessions. You see people who are clearly sicker than you, you overhear conversations of the types of cancer they have, of their stories, of the horrific amount of times they have went through treatments. That's when I feel like a fraud.

2. Feeling like a fraud
Now, don't get me wrong blogger friends, I aint totally crazy. I do realise that I also have cancer (again, not in denial, folks) and that these feelings are quiet ridiculous -although at the same time, probably quiet normal. AND I realise as my chemotherapy sessions progress, I will indeed feel, and look, sicker -unless I'm one of those freaks who gets hardly any symptoms. Please, let me be a freak!

...but that's the thing I guess, the old issue of  "Oh, you don't look unwell?", going back to the hip dysplasia and associated issues (and perhaps some un-associated issues). From work colleagues, friends, and general people. And don't get me wrong, most the time people didn't mean any harm -I am aware of that. And I know that looking healthy should be a positive thing! But in all honesty, it can be hella annoying at times. Trying to explain to someone why you can't physically do something and they're looking at you