Unsteady

NB: This is probably going to make no sense as I’m not going to censor myself or edit this much. You know the drill! Hopefully it does make some sense though.

I said that this year I’d limit the amount of ranty posts because last year was a bit of a mess, to say the least. In reality, that wasn’t going to happen because I’m at another relatively difficult period in my life (on the scale of difficult things I’ve endured, this scores pretty low. That probably says something).

This week is M.E Awareness week and I’ve always done a post on the topic (2012, 2013, 2014) but this year I can’t bring myself to do it. For the past couple of months (probably after the last M.E awareness post, to be completely honest) I haven’t felt like I belonged to that diagnosis anymore. With the new symptoms that I’ve been experiencing (I now have a list of 18 new symptoms, what happened there?!) it’s strengthened that in my mind. It’s never wise to google symptoms but mum and I have an inkling of what could be the cause of 3 (current) generations of ill health. It basically depends on what my MRI results turn out to show, but we’re pretty convinced (though not putting our faith in it).

The only way I can possibly describe how this makes me feel is by saying I feel 11 again. Now that will make no sense to anyone apart from my family, as they were the only ones there at that age! The gist of it is that I felt very lost in the months leading up to/after my diagnosis of M.E and very vulnerable. I ended up depressed because of it (and because of certain meds). Now though, going through the uncertainty of a possible new diagnosis it feels like that again. Except this time, I’m seven years older. I’m more experienced with doctors, knowing what to say to make them listen to me and how to be (relatively) prepared for whatever they throw at me. Yet there’s still that niggling feeling of how I did feel. The feeling of giving up on what I want to do, the feeling of anxiety at the thought of possibly having something else I’ve not heard of with no known 100% successful cure, the feeling of wanting to hide away and shut away from people. I’m torn between giving into those feelings and also fighting my corner.

It’s not really an option for me to give up, I won’t allow myself to. I haven’t got myself this far for no reason. Maybe I need a few more days to let myself wallow in whatever emotion I feel like, rather than forcing myself to seem peppy and not having a care (though I’m pretty sure anyone close to me sees I’m not the same me and haven’t been for a while. I thank them for the decency of not bringing it up unless I do!!). It’d probably help quite a bit, speaking from experience. It’s a bit hard to distract myself when nearly everything sets off one symptom or another (vertigo vs pain. I think I’d rather have pain and enjoy playing an instrument than going out or reading which sets of vertigo!) but I’m trying to manage.

I guess this is an awareness post of sorts, but I’m not really sure of what it raises awareness of! I should probably say that if I go silent on here, it’s not because I don’t like you. I need to conserve as much as energy as I can get for Download (not really sure how that’ll go, but we’ll cross that bridge when we get to it) and writing these posts are taking a lot out of me at the moment. I hope I can post every now and then, but if there aren’t any posts in a while then that’s why!

See you soon,
Jess x

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2 thoughts on “Unsteady

  1. Another really brave post Jess. Like your Mum I hope you get answers soon. Not knowing is the worst! Love you SO much. Xxxxxxxxxxxxxxxxxxxx

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