Tuesday 7 May 2019

Living with an Invisible Illness

Hi everyone, after my last post I received very mixed reactions and comments.  Some people thought I was being quite over the top and dramatic saying how hard I was finding having a new puppy (who is currently driving me mad and still wearing me out, bless her little fluffy paws)!

I feel a new puppy for anyone can be super tiring as a few people have told me, but for someone with my type of health condition it can be a even harder.  So for those who don't know, I thought I would take this opportunity to tell you a bit more about my heath conditions and the type of symptoms I have to deal with on a daily basis.  To start off with I have several conditions; Fibromyalgia, Ehlers Danlos Syndrome (EDS) and chronic IBS, these all come with their own symptoms but as they often go hand-in-hand with each other, the symptoms get very intermingled.

Have you ever run a marathon and the next day feel like you've been hit by a truck, or had the worst flu ever?  That's how bad I feel 90% of the time, that level of feeling like I have no energy left, feeling weak, achy and in pain.

Doing even the most simple mundane tasks like vacuuming, washing up, having a shower or changing the bedding, tasks that most people barely think about, exhaust me to the point where sometimes I almost pass out.  And as for going out, even just for a few hours makes me so tired and worn out I have to sleep and try to recuperated for at least the following couple of days.

Here's a brief list of symptoms that I live with all day, every day -
Achy and very painful joints, muscles and limbs
Bones dislocating easily
Muscle spasms
Brain fog
Random weird feelings anywhere on my body that can feel like hot patches, itchy for no reason, pain like I've just bashed myself, bruised feeling or extremely sore patches that feel like cuts and grazes.
Just bending down gives me stomach pains and makes me dizzy.
As well as all that, I have very over sensitive skin, I can even feel a hair on me and clothes labels feel like razor blades, and if I get knocked or poked, it pains and bruises as much as if I had been hit.

That's just stage one, then when I've been doing tasks, add in to that list even more exhaustion, less energy, feeling extremely dizzy and sick, sometimes palpitations too, that's stage two.  And if I try to push on through it and carry on with daily tasks or extra jobs that I need to do, I go on to stage three where all my symptoms get worse and I end up feeling so exhausted and ill, I can barely move.

Finally, the more I do, the worse I get and if I over-do things too much too often, and/or I get too over stress, I get flare ups.  These are like being in stage two/three constantly for up to a week.  Trying to 'live life' and function feeling this  bad, is incredibly hard I can tell you, but life doesn't stop, the tasks still need to be done, and of course our puppy still has needs too.  Which as you may understand a little more now, is why I was finding it so hard.  In fact I was finding it so hard and getting so stressed with the whole situation (i.e feeling ill and still needing to manage), that I even had a break out of bad eczema which I haven't suffered with for about 9 years!  After eliminating different foods and other possible causes, my doctor told me was all due to the stress, I didn't even know stress could cause eczema but apparently yes it can!

So there you go, just a brief insight into what I deal with each day and how I feel.  It's not easy, it's not fun but sadly I'm used to it so I make the best of it and push through because that's just what you have to do.  Just maybe next time you throw the duster around or take out the trash, spare a thought for those of us with an 'Invisible illnesses' that can't do all these simple things quite so easily!

If you would like to know more details about how I came to have these health issues, when I was diagnosed etc, you can click here to see my post all about it, or click on the 'health' tab at the top of the page.

Going back to basics in my next post, with a little life update and some favourites.  So until next time, Stay Happy

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