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.

"I'm not qualified for this" -A tale of a fragmented and centralised health system

Chapter 1.

The Clicky Hip That The Doctor Missed 

Once upon a time, there was a girl, and this girl lived in a land of infrequent and inconsistent health care. As the girl grew, she slipped through the gaps -Being told treatment was too late, there were other issues at play, she was "wonky" and they weren't qualified to help... Just beyond this place, in various reaches of the further land, many children with similar issues, and many adults too, were receiving regular health care. Surgeries, rehab facilities and specialists galore. They lived quite a different life because of this... It was only at the age of 30 that the girl finally realised the truth. The truth being: National healthcare was a lie; her circumstances had resulted from her address.

I have always had hip dysplasia. Always. Doctors may have thought I was a dumb child, so referred to it as being "wonky", or being "slanted". Many hear of it and comment "Oh yeah, clicky hip I think it used to be called?" and generally follow that up with how it's no big deal, loads of babies get it... etc., etc., and this can be the case. When found at birth or shortly after, a harness is usually fitted. Annoying for the parents and child, but extremely vital for the child's correct growth. The issue is that the hip, usually either in the womb or at some stage during the birth, comes loose of it's socket. Generally treatment begins straight away -with a harness, regular check ups and x-rays and possibly surgery starting around 2 years of age, sometimes before, depending on the patient. Some don't need any surgery or just one surgery, others need several surgeries, throughout their life spam. These surgeries are to help the hip be more stable, to save the hip from replacement for as long as possible. This can include strengthening the joint and deepening the socket so the hip will sit better in place. Now, without this treatment -as in my case (as the doctors refused to even look at me until I was older and walking funny/ limping)- the body creates

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.

Acupuncture for chemo side effects

I've been going to acupuncture for my chemotherapy side effects since I was diagnosed -before I even actually started the chemo, and I think it's helping loads! So just wanted to give a big shout-out to Acupuncture4Health. If you're on Facebook, please give their page a likey by clicking here: Facebook - Acupuncture4Health and if you live in Co. Louth, Co. Monaghan areas (Ireland) and ever in the need of acupuncture for whatever reason, I highly recommend here :)

Thank you please!

...So I'm interested in knowing, any chemo buds who are reading, have you tried any/ many non-traditional medical alternatives for side effects? And if so, what's your views? Post a comment below. Or even if you've tried said alternatives for other reasons, or simply have a general view, feel free to post too.

Positive vibes, man!

I'm really fed up of the word 'positive' at this stage -not what it means, just the actual word. I wish there was another word for it. I've used it so much since being diagnosed with cancer, and have heard it so much too. Truth is, I didn't realise how much of a 'positive' person I was before now. Not only in coping with having Hodgkin lymphoma but also at the rather annoying 'looking on the bright side' crap I've been doing with every situation involved in such a diagnosis.

Example A. -Loosing my hair. I've read in blogs and Facebook groups other people's stories, particularly women, and how it's been one of the hardest side effects to come to terms with. Even though I haven't lost mine yet, I can't help but look at new hats I'm going to buy and hope that my hair grows back curly -having curly hair would be nice (for those who don't know, after chemo your hair can grow back different colours and textures!). Example B. -Fatigue, and how from my point of view, being able to fall asleep easily will be a welcomed change. I've had some fatigue but not the last few days -I'm soo hyper and full of energy for some reason. Although I read this can be normal in the beginning.... and there's a host of other

Lessons of summer

Today (four days away from starting college again) I've been reflecting on what a lovely, relaxed summer I've had... let me give a little background here: I'm the type of person who loves to be busy, uses it as a pain relief even, and only feel things when I stop. As well as full time college, I enabled myself to live like this through a couple of part time volunteer jobs and through my charity crafting (PLUG ALERT... go 'like' my Facebook page: KittyLovesTeddies). I decided at the start of the summer (for several different reasons but mainly due to wanting to focus on my third year of college) that I would cut down dramatically on my charity work and try and focus on myself. To be honest it was simply an after thought that my body has been getting worse and maybe I should slow things down. Sounds crazy, I know -you'd think being extremely fatigued and feeling like crap would be my first concern, but truth is, I love being insanely busy so I'm