Dear Bug… I Want to Live So Very Much Yet My Body Isn’t Letting Me.

In the past few weeks, I have been dealing with the frustrations of wanting to be able to do more than my body would let me. In fact, that is not strictly true... the M.E. Monster lets me have a taste of what is out there, then whips it away from me like a cruel torturer. There are many examples of this that every M.E. or in fact any chronic health sufferer would understand...the acid infused most irritating symptom ‘payback’, known as PEM (Post Exertional Malaise). It’s a nasty piece of work. Especially so, as it makes you feel for one moment, there has been some sort of progress... then you feel like the proverbial for an unmeasurable amount of time. It all depends on what the M.E. Monster has in store for you. It doesn’t matter if you’ve been out before, this time you are going to pay greatly.

The problem is: I’m stubborn. Very stubborn at that. Sigh. A good thing and a bad thing. Being stubborn has probably kept me alive at times when I was nearing the end. Holding on by a mere thread but that mere thread kept me going through the endless days and nights. Stubborn was good then. It’s not quite so helpful now...

I am a proud auntie of a niece and nephew, who are growing up fast, way too fast in fact! Maybe as I don’t get to see them as much as I would like because this damn disease won’t let me, I notice the differences even more. I just don’t know. What I do know and feel, is that I’m desperate to make memories with them. Times are different now; for you see unlike when A Girl Behind Dark Glasses is set, I can now tolerate the stimuli of babies. I’ve missed far too many of my friend’s little one’s lives, to miss the precious time with my family because I know how painful it is.

My in-laws came around today, and I had a lovely time holding my five week old nephew, whilst playing high five with my niece. We went out and were gone for an hour in total (including travel). There we went and built memories at a country park. I just stayed that one minute too long, which I didn’t notice until it was too late and payback had reared it’s ugly head. My stubbornness in wanting to live and have some fun with my little ones means that I’m now laying here, wrecked, and in agony. My skin is on fire and my arm can only just hold my phone up to type this. I didn’t get to kiss Nellie and Oakley goodbye. I didn’t get to say goodbye to my sister-in-law.

I only just managed to lay there as my in-laws kissed my cheek goodbye. Then I was floating. Not doing the usual Dory quote ‘Just keep swimming’, but just trying to stay afloat as my body created an almighty whirlwind.

My stubbornness means this will continue to happen because I’m not prepared to miss out on life. It’s far too precious. I know I’m in a luxury at having that option. However, I do need to learn to balance life a little more so I don’t spend half my time existing due to the half me determined not to miss out. Maybe, the M.E. Monster and I can strike up a deal one day...

Maybe, tomorrow can be a day when I can contemplate on a blog about juggling balancing.

Until then, I shall float.

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