(A Joyful) Weekend Coffee Share

If we were having coffee I would tell you that the cup needs to be a hell of a lot bigger! I had a proper night out for the first time in almost a year and realised that occasionally sacrificing comfort for fun is more than worth it.  Continue reading “(A Joyful) Weekend Coffee Share”

A Hidden Agenda?

I’ve detailed in the posts here and here how difficult it was to get someone to take my symptoms seriously. One of the most important aspects of that journey was how convinced the doctor was that I was suffering from some kind of anxiety – to the point of talking over me when I tried to protest. At the time, I just believed that he was making a huge assumption based upon one blood test. Nearly nine months down the line inconsistencies have surfaced that suggest something else may have been at play. Continue reading “A Hidden Agenda?”

Bread, Barley and Blood

I’m not writing this for your sympathy: I have no need, or desire, to receive a plethora of ‘get well soon’ messages (not to be ungrateful – it’s just a little beside the point…)  I’m writing this for the people who, like myself, cannot use the word ‘allergy’, but know all too well that certain substances are detrimental to their health. I’m also writing this for the people that goad them.  The people that claim that an absence of an EpiPen is a sign that we are merely fussy eaters: that the substances we put into our bodies have zero effect on the illnesses we suffer from.  The ones who believe that if a reaction isn’t immediate and deadly that the ‘sensitivity’ is fake.  This horror show is for you.

WARNING: GRAPHIC DESCRIPTIONS OF THE MENSTRUAL CYCLE ARE CONTAINED IN THIS POST. Continue reading “Bread, Barley and Blood”

3 People The Chronically Sick Always Meet

We’ve all met them. Those allies who, either deliberately or unconsciously, make you feel so much worse about yourself, about the way you choose to live, and how you deal with your own challenges. These are the people who, when you’re at your most vulnerable, make you feel selfish, ill-informed, and downright idiotic: and their attempts to ‘help’ you are about as beneficial as rubbing sand into your eyes.  Continue reading “3 People The Chronically Sick Always Meet”

A Fight Against Illness, Or A Battle For Wellness?

There is often a vast amount of war-related language utilised when we, generally, speak about illness – chronic or otherwise. We fight for cures, battle our symptoms and add the word ‘warrior’ as a form of a suffix to the nouns that describe that which ails us. So far, so understandable – living a life like Sisyphus is not easy. Sisyphus, however, had no choice. To refuse to push that boulder up the hill would have incurred the wrath of the Gods.  You may be thinking that illness isn’t a choice either – that is correct – but how we respond and deal with said illnesses, is. We can look at that giant rock and say “no, not today”.  So why is it that even in support communities that treating ourselves with the kindness we deserve often considered to be a sign of surrendering to disease? Continue reading “A Fight Against Illness, Or A Battle For Wellness?”

Better Living Through (Neuro) Chemistry

Fibromyalgia is a complicated and challenging syndrome, and living with it is something that I’m having to learn through a fair amount of trial and error.  There are things that I thought, for years, were my body’s own ‘quirks’, that turned out to be quite well-known symptoms; but, simultaneously, it appears that every sufferer is a unique case.  This poses a very obvious problem for patients, who will have to learn what their bodies are doing, and why they’re doing it: but it also poses a problem for physicians as a treatment that’s good for the Goose could actually be disastrous for the Gander.  Initially, I believed this was why, after my initial diagnosis, I was immediately discharged from the Rheumatology clinic and left to my own devices.  (I wasn’t exactly thrown to the wolves; I was put on a waiting list for a pain clinic assessment at the end of last year, but there’s no guarantee that they will accept me as a patient.)  On the other hand, being left in treatment limbo may have less to do with the clinician who diagnosed me and more to do with the findings of more and more research.  Rheumatology is a muscular-skeletal and autoimmune speciality, but a vast amount of evidence suggests that Fibromyalgia is a neurological condition: it really is all in our heads, but not in the way some overly dismissive people would have us believe.  And, most importantly, it gives me a finer explanation as to why watching Ice Hockey sends me into temporary remission.  Allow me to expand a little on that last sentence…

Continue reading “Better Living Through (Neuro) Chemistry”