Why I'm an advocate for the flu vaccine

In 2014 I contracted the flu. My immune was still down from chemotherapy, and I stupidly, completely forgot to get the flu vaccine. This was probably one of the biggest regrets of my life. You see what most people consider "the flu" is a mere cold. We are prone in Ireland to believe that the flu is quite common, we use the word nearly in every day life to mean we are feeling unwell. We think common colds, when bad, is the flu. Not everyone will even contract the flu in their entire life. Because of this, we have downgraded the virus in our society, the lines are blurred.

I was on a high finishing treatment for Hodgkins lymphoma, ready to get my life back on track with college and work. I wasn’t thinking about the flu, or the flu vaccine, or anything medical at all.

In 2014 I contracted the flu. I thought cancer was bad enough, I thought Ehlers-Danlos syndrome and my comorbid disabilities were bad enough ...but I was about to find out how unwell I could actually get. Weeks of delirious shaking and sweating and sleeping eventually subsided. Eventually I could stand up without falling over, eventually I could speak properly.

[Video] Happy New Year from my ME flareup

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• Silent Valley • I’ve been wanting to do this walk for a very long time. Slept for several hours after and will take days to recover, but worth it. • • • • #silentvalley #silentvalleyreservoir #kilkeel #northernireland #norniron #ireland #discoverireland #ehlersdanlossyndrome #winterwalks #winterinireland #newyears #christmas #yule

A post shared by ☾Kitty Colbert☽ (@kittypotpie85) on Dec 30, 2018 at 1:52pm PST

If you follow me on Instagram then you'll know I was quite proud to visit a site recently that has been on a list of things I wanted to complete -The Silent Valley Reservoir/ Mountain Park. We walked for nearly an hour and I used only my cane. I had stories up throughout the trip on social media and took some pretty nice snaps with my DSLR.

It was tough, very tough, I could barely bend afterwards to get back into the car. But extremely glad I achieved what I wanted to; feeling quite proud.

Here's some photos of the day and a video of the aftermath, because it's really only fair to show both sides -I could make everything look pretty and shiny in my life through social media but we all know that's a load of bollox. I do myself and my conditions no justice by not representing the truth. On top of that it's harmful to any young, impressionable zebra out there (or anyone with chronic conditions) who feel like a failure for not living up to what many portray online. 

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: