Resolutions

Hello my lovely loves!

It's been a little while since I've written a post, rather than just basked in the reflected glory of Tiny Hannah, so I thought it was time to get back into it.
(Tiny Hannah is still off on her grand tour of America and Canada by the way, so if you were hoping for more photos, don't worry, there'll be plenty soon.)

As I've said before, New Year's celebrations have never really been my thing, but as the terrible monster of 2016 finally died it's death, I've felt a new kind of... determination settle over myself, and it's caused me to actually want to set goals this year.

Christmas went well, I managed it so much better than last year, and I just feel a bit more stable in my condition.
Although, I'm not sure stable is the right word: it’s more that I've learned what things are liable to cost me, accepted that cost, and started to trust that those costs will hurt, but that I will get through it.

It's odd really, as I had to spend the end of December and a fair chunk of this month filling in my ESA work capability assessment form, which generally involves telling strangers (and fronting up to) just how bad things are in comparison to healthy people.
Frankly, it's ripping yourself open, pulling out your insides, and rooting through; working out exactly how bad everything is for you and focussing on everything that you normally try not to think about, in an effort to keep positive.
It's a deeply depressing process, but somehow, afterwards, when I'd seen just how hard things are, written in black and white and capital letters, it made me realise that I'm a lot stronger than I think.

One thing that it's also made me aware of, though, is where I need more help.

Approximately two years ago I went through the process of being assessed by an Occupational Therapist and being awarded an upright wheelchair with a headrest.
I expressed concerns at the time that I wasn't able to sit in an upright chair, but the wheelchair service would only (and probably could only) offer me an upright.
It was only through my stepdad calling them afterwards, and reiterating my weakened muscles, that we were able to get the headrest added to the chair.

I didn't have the strength to fight further, was worried and guilty about taking up funding for someone worse off than me, and barely knew what other options were available anyway, so I accepted the chair, even though I knew it would take me months to be able to sit in it. Or so I thought.

I've had that chair (who I nicknamed Gavin) for at least two years, and I've used it a grand total of once. That was during the Doctor's Trip Debacle of 2015, and we all know how long it took me to get over that.
I can sit in the chair for about 30-40 seconds before I start to feel my back muscles lock and strain.
In short, instead of being an aid, it's just another mountain to climb.

There's a small grassy plot in my cul-de-sac, and it's about twice as far as I can comfortably walk (not counting in the emotional and psychological factors of Being Outside).
Without any aids, there's a very small chance I might be able to make it over to the grass this year, but I'm willing to bet the Payback involved would not be fun, and that would make it a very rare occurrence indeed. And that's if I didn't have a crash mid-excursion.
If I had a reclining wheelchair, however, I could make that journey in a matter of weeks, with considerably less Payback, and likely do it reasonably regularly, rather than once or twice a year.
Guys, I could leave the house.

It's been nearly two and a half years; I want to leave this house, and I want to do it this year.
So, my new sense of determination is going to be channeled into getting a reclining wheelchair.My Specialist Physiotherapist from the ME service has backed me up, and has put through a request for referral to the OT team again.Hopefully the wheelchair service can fund it, if not, there's social services. If not social services, there's charities. And if not charities, there's crowdfunding.

I will find a way.

I’m ready. Let’s blow this popsicle stand.

Coming soon on Super Pooped!

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

Stomach problems/IBS

Nausea

Low blood pressure

Blood sugar problems

Temperature difficulties

Cognitive problems, including Brain Fog, memory problems, difficulty finding words

Sensitivities: sound, light, smell

Tinnitus

Mood Swings

Anxiety and Depression

Insomnia

Breathlessness

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.)

Benefits

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.

Life Hacks

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.


H