Hello my lovely loves,
Thank you so much for the positive response on my last post. So many people viewed and commented, and I can’t tell you how happy it made me when fellow sufferers said they found it helpful, and would pass it on to friends and family to make their own visits easier.
I’ve even received a request to have a couple of posts translated into Dutch for an online ME group, ME-Gids.net, in the Netherlands! So that’s a lovely feather in my cap.
I thought that it might be helpful if I gave you an idea of what to expect in the future on Super Pooped. Obviously I can never really tell exactly when I’m going to want to (or be able to) write about a specific subject, but I certainly have a list of topics I want to cover in the future.
Symptoms and Tips
Over time I really want to do a series of posts on different symptoms that ME patients suffer. Partly so people can recognise these symptoms in themselves, but also so non-sufferers can get a better insight into how these various things actually feel.
Depending on the length of the posts, I’ll then either continue on, or have a follow up post, talking about the best ways I’ve found to alleviate and deal with those symptoms.
I’ve tried a lot of things, and although my ways won’t work for everyone, it feels sensible to have an index of ways to deal with certain things. I’d also encourage people to share the ways they deal with these symptoms on those posts, to try and create a pool of knowledge for us all to draw on.
These symptom-based posts will include:
Fatigue and Post-Exertional Malaise (Payback)
Pain, including headaches, muscle aches, joint pains, and muscle spasms
Periods and the difference ME makes
Low blood pressure
Blood sugar problems
Cognitive problems, including Brain Fog, memory problems, difficulty finding words
Sensitivities: sound, light, smell
Anxiety and Depression
Palpitations or arrhythmia
Compromised immune system
(There are some symptoms I don’t suffer from, or only have mildly, so I’m always open to the idea of guest posts on those subjects, or getting information from fellow spoonies before I write them.)
At some point soon I’d really like to do a post on things to bear in mind when sufferers are filling in PIP or ESA forms. It’s incredibly daunting and I think a lot of people panic because they’re aware of the troubles people have had with the DWP, and they’re frightened it’s going to happen to them.
If I can make that process a bit easier (and hopefully improve the chances of a good outcome), I’d like to.
I’m going to say right now that I won’t be filling out any forms for anyone, or even telling them exactly what to write, but my step-dad is a solicitor, and I think years of living with him has given me a good insight into the language these kind of documents use.
The year before I got sick
I’ve actually already started on this one, but it’s a very difficult topic for me so it’s going to take a while for me to finish it.
I had a very difficult and stressful period before I got sick with ME (like a lot of sufferers), and I think it will be helpful for me to discuss it, and helpful for others to see that they’re not alone.
Along with the tips for symptoms and benefit applications, I’d like to do a series of posts on ways I’ve adapted to achieve more every day things, like cutting or styling my hair, and finding non-chemical products that don’t make my ME sensitivities flare up.
The Cost of Being Sick
Although I often discuss the emotional and social costs of being sick, I've never actually looked at the monetary costs. I'd like to make a list of everything that I've bought as a direct consequence of my ME and work out exactly what's it's cost me and my parents.
That’s the vast majority of the things I’ve considered writing about so far. I imagine other things will crop up over time, and, as I said, there’s no set plan as to when these specific posts will happen (although if there’s one you’d like to see, feel free to let me know). ME-specific posts are bound to be interspersed with posts about things I’ve managed to achieve, things I’ve made, or just whatever is ambling through my mind.
I’m going to try and update once a month, even if it’s just a little hi from Standby Hedgehog. I don’t know about you, but I miss that sassy little mammal.