invisible illnesses – Page 2

Some of you who have popped on to here over recent days will have noticed small changes popping up around the site. It’s an exciting time for the blog. In the eight years its been running for it has had the same look, so it was about time it had a make over along with a brand spanking new feature. Hopefully this means you’ll find it easier to navigate, but as always I’m only a message away and you can always drop me a line over on the Dystonia and me Facebook page if you’re having any difficulties.

Spoonie Talks is the blogs latest new feature, this will be a weekly podcast posted up every Friday evening. I am overly excited about this. It’s an idea I have had bubbling away in the pipeline for awhile but it was never quite the right time. However sometimes you’ve just got to grab the pandemic by the horns and give things a go, so I’m launching Dystonia & Me: Spoonie Talks podcast and hope to have the first episode up and running by the end of the month.

How can you be involved?

While some of the the episodes will just myself talking, I’m aiming to make this an interactive series bringing light to issues that my readers, and the Dystonia and me community feel strongly on. This really could be anything! It could be on a specific condition that you would like to spread awareness about, you could be a carer and wish to discuss what that’s like, maybe you want to share your journey to diagnosis, tips on balancing illness and home life, pacing, perhaps you are a charity and want a platform to speak on. The possibilities are really endless.

If you think this is something you may be interested in, drop me a message through the facebook page and we can have a chat. The more the merrier!

The Return of Facebook Lives

During National lockdown I was on the Dystonia and Me facebook page twice a day doing facebook lives to check on how everybody was doing both physically and mentally. This meant I could provide links to resources for those who were struggling, and hopefully for those who were feeling isolated it meant that they had something to look forward to.

Now with my health not being at its most stable at the moment twice a day is not something I can commit to, however I feel (and some of you have messaged) that the lives returning would be helpful with so many local lockdowns in place again. With this in mind I’m going to be coming Live on the Facebook page 7.30pm every Monday and Wednesday night. It wont always be awareness spreading, it might just be a friendly chat to see how you are all doing, so join in in the comments. I will schedule these on the page, you’ll be able to set reminders for those who want to join.

I’ll see you all tomorrow night.

This morning I was on the phone to my mum when she brought up the fact I hadn’t blogged in a long time. I am rather good at finding excuses for why; too tired, too busy with the kids, don’t know what to say. But none of those are completely true. So bless her, I rambled for quite a while as to the reasons why.

Firstly Ableism. Honestly I’m mad for allowing myself to be beat down enough to feel I didn’t deserve a voice as an activist for people with Dystonia and other invisible illnesses anymore. Up until the last several months I had been having a relatively stable patch which I had been making the most of, and for that simple reason I felt I wasn’t ‘sick’ enough to do this anymore. Which is frankly ridiculous. I have several conditions all of which are chronic, a couple that will continue to deteriorate as I age. My good spells generally never last longer than a Botox cycle, yet because I don’t fit into a nice stereotypical tick box of what disability should look like I felt like I couldn’t blog. I expect myself to be able to do everything that a healthy person can do, because that it is what people, I feel, expect of me from many not so subtle comments for example lose weight your joints won’t hurt as much.

Secondly, was my depression and anxiety. The anxiety and paranoia I experience partially stem from post natal depression but are largely side effects of my medication. I feared hugely that holding my hands up and saying ‘Hey, I’m trying my best but I’m struggling like crazy, I’m terrified by the deterioration I am currently experiencing in my body and I don’t know to do’ that my doctor’s would somehow read this and decide to withdraw the medication that is so vital to me and pack me off for yet more counciling. That may seem ridiculously paranoid to read but when you’ve lived years of doctors gaslighting you, undermining your very real physical symptoms, skirting around the subject of mental health is now habit (though I am on antidepressants now).

I hope that clears things up. I want to blog here more. It helps to write it down and connect with others in the same situation.

So here’s a very late Happy New Year.

dystonia and me

dystoniaandme

I'm 32 years old, a mother, author, partner, and spoonie. I live alongside Dystonia, POTS, EDS, Osteoarthritis, and a dictionary worth of other diagnoses. This little blog has been set up to help spread awareness and bring light to these conditions and connect warriors with others who can understand each other's experiences.

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