It’s been a spoonie sort of week, with several chronic illness issues on my mind, both of others and my own.
And helping bring awareness to spoonie issues is my heart.
Sunday night, I stayed up and watched Jennifer Brea’s documentary, Unrest, as I mentioned planning to in my previous post. If you haven’t seen it, it is available on Netflix streaming and I strongly encourage everyone to watch it, though it is difficult to sit through.
She suffers terribly with ME, more commonly known as Chronic Fatigue Syndrome, and some of her fellow sufferers have even more severe symptoms than she does. While I knew ME was devastating, I did not realize just how debilitating it can be, with some sufferers even unable to speak for years at a time.
As always, we can’t begin to help what we don’t understand, so please do watch this one, even though it hurts.
Another spoonie who is very much on my mind is my precious friend, Angela, who has been battling epilepsy fiercely for many years. I knew she had a beast of a seizure last week and over the weekend I read her latest blog post:
It just breaks my heart for her as well and I would ask for lots of prayers and good vibes and warm fuzzies for her as she is recovering.
I only wish there were more I could do to help her.
And I’ve been trying to do some sorting of my recent spoonie issues as well.
I’ve tracked down the assistive device I need:
Coming to terms with this part of things has been tougher than it sounds.
If you look at the link, this is an electric wheelchair that is collapsible to fit in a car trunk. I honestly had no expectation that I would need a wheelchair at this point in my life – but, between the constant breaks in my feet, my rapidly worsening right hip, and spinal issues, making the decision to use one will allow me to “have my life back” in some ways. I have realized that, particularly with this type of chair, I will be able to again do activities I find myself avoiding now because I don’t have the ability to stand or walk for them.
I am finding that, not only do I experience new breaks in my feet randomly just from standing, but my hip and spine situation seem to be decompensating so rapidly that I can tell a difference from week to week at times.
In addition to enjoyable activities that I would like to resume, so many regular activities people take for granted – like shopping at stores that aren’t yet accessible – will be possible for me again with a collapsible chair. It’s just time.
I’m working with the company to deal with insurance stuff if possible and have an appointment with ortho specifically for that purpose in the hopes he can help me. Let us all cross fingers and toes.
In addition to going to a chair for activities that require significant walking, I have also had to look at some other things that might help my situation and made a separate wish list for them to get them as I can.
Honestly, this all feels a little surreal, like I need to pinch myself.
I am certainly grateful that this exists and that hope is on the horizon that I can begin going to do the things I haven’t been able to do since I became so ill.
One recent event that REALLY upset me was when I was in Nashville visiting my bestie, Ginny. We parked about four blocks from the restaurant we were having lunch at and it just KILLED me to walk there and back. I felt like I couldn’t get my breath I was in so much pain – and, of course, I didn’t want to distress my bestie if I could help it.
Once we got back to her car, we realized that we were right by the art installation that we had come to see and take pictures with – but I just could not bear to park and walk anymore. So we skipped it. And I am so so tired of having to always just give up.
And that was a fun activity. What’s worse is that the same is true of “required” activities, like doctors appointments and grocery shopping and all of the things that healthy people are just able to go and do
So it will be a great blessing to get this aid.
But it’s still very strange to be working really really hard to get your wheelchair at 39. It’s a lot to take in.
By the way, if I can get it all worked out, he is already named:
Yes, he shall be called Maximus. =D
And all of the prayers and good vibes and warm fuzzies are appreciated as I’m sorting all of this out – as it’s stressful and confusing and enough to make anyone want to stand on their head.
Be well, everybody. Happy late Tuesday/early Wednesday!
Grace and Blessings.