From 24th June 2022
For anyone who hasn’t been following me (my blog or social media that is – not me personally … thrilling though my life is!) – I’ve recently been for a lovely trip away with my three-year-old son to stay with my Mum for five days. It’s only in recent months I’ve been well enough to manage this journey on my own … so I wanted to document this achievement and how well/not well I coped.
I started off reasonably well with almost-daily updates on how I was coping with my health and activities, but then didn’t have the energy for the final two days. And then another two days … and then some more days. Now, I’m at the point where I feel I’ve definitely left it too long to carry on with updates from our trip – seeing as we’ve been home over a week.
I’m sure no-one minds, or has even noticed – because it likely doesn’t matter to them. But … it matters to me. And why? Because after being housebound, often bedridden for three years, isolated from the world and too unwell to talk about what was happening to me, I am now at a stage of improvement where I want to raise awareness about this god-awful disease. I want to make this invisible illness visible.
Over time, I have learned to accept the physical limitations placed on my body since becoming chronically ill with ME and POTS, however, I still struggle to accept the limitations it places on my brain’s ability to function properly. Specifically, its limited capacity for written communication; this is especially challenging for me, since I love to write.
Good Intentions, Sporadic Results
I always have good intentions for posting on my blog and social media regularly, to communicate the daily challenges I face with ME and POTS, to keep raising awareness. But the reality is – updates will always be a bit sporadic, whether I like it or not. And not just on this platform; I’m sporadic at updating friends and family via text and emails in my personal life too, and it worries me sometimes. I worry that friends will think I don’t value their friendship as much as I did before I became ill. Nonetheless, it’s kind of hard to communicate anything in writing … when my main strength is raising eyebrows over my lack of written communication.
But there is a reason for it: brain fog. Most people can knock out a message in seconds and then get on with their day. I can’t. It takes me AGES to type out a message. I like to put consideration into any of my written communication – which can take up a lot of time and energy when my brain just doesn’t function at the speed and ability it used to. Especially when I end up feeling nauseous, and get blinding headaches, the harder I try to concentrate and ‘think faster’ through the fogginess.
This means I often don’t physically have the time and mental energy I need to type out messages or updates half the time. And the rest of the time, I feel too overwhelmed by the likelihood of becoming ‘foggy’ and the subsequent consequences to my health, if I try. Then, the next thing I know, days have turned into weeks, sometimes months, and I haven’t replied to a text or email, or done any updates online. Then I procrastinate over whether it’s even worth replying or updating anymore, or if I’ve left it too late.
So, instead of continuing to remain silent for all the aforementioned reasons – I figured I’d wait until I had an hour or more (it’s definitely been a lot more) to type all this out as a means of raising awareness about how fucking hard it is to raise awareness when dealing with brain fog! Also, I’d like to hope this helps the important people in my life to further understand why they don’t hear from me as much as they used to. I’m not being rude – honest.
… Well, most of the time, at least.
But just in case any friends or followers (it still sounds stalkerish) had been wondering – we did make it to the Gruffalo zoo last week, and it was fantastic!
Remember, if you want to learn more about my journey with ME and POTS, click on My Story with POTS and M.E. – chronicallycraptastic.com