A couple of months ago, things in our apartment home went all FUBAR (Fucked Up Beyond All Recognition). It wasn’t pretty. There was much crying, and many phone calls – most of which I suspect, didn’t even involve my being on the phone myself, but rather was all manner of other people on the phone talking about me. I had a meltdown. I just. couldn’t. cope. any. more.
And Nicky missed school for three weeks.
In any event, we started to get some help. A bit here. A bit there. This service provider. That service provider. This person. That person. It was all appreciated, don’t get me wrong. However organising it all was just about as stressful as the stress we were trying to navigate! “Defeating the purpose” took on a whole new level.
We are still in that mode. Only now without any support to think of other than 1.5 hours of bathroom/toilet cleaning once a fortnight. And my gorgeous counselor who visits once a week ❤
Last week we had a meeting with what I hope will be our last service provider (at least, for a very long while!). They seemed great – really friendly and wanting to help and non-judgmental. They certainly didn’t come in here and tell me I wasn’t worth helping, which I have had to endure so many times before. They even went the other way and insisted that I deserve more help than I was asking for. Because I was only asking for my needs to be met. Even only some of them!
They wanted to know my WANTS! Not just “what is the bare minimum you need to ensure everyone is still breathing at the end of the day?” but “what do you WANT your life to look like?”
And I had no idea. I had no clue. I’ve spent so many years only daring to hope for just enough help to get us by, that I stopped even dreaming about what I actually wanted out of my new disabled life.
We triage in our house. Everything – food, bills, medical appointments and equipment. It all comes down to we don’t have nearly enough, so what is totes urgent today? Needs only, and not even all of those are met. Not even close. Wants? Those aren’t even on my radar.
So now I guess I get to think about them a little bit… Maybe they won’t happen anyway, but right in this moment, there’s a chance I’ll end up with enough hours to do one or two things I WANT to do!
My List of Wants… (not in any special order)
Scrapbooking time (2+ hours per week): I’d like to go scrap shopping and maybe even to a weekly class/group.
Hydrotherapy (6+ hours per week): I’d like to go to hydrotherapy at least once a week. I may have that covered somewhere else, so I’d also like to go to my local one at least three times a week. I really want to lose some weight and hydro is the only exercise I can do at this stage.
Grocery Shopping (1 hour per week): Most people hate grocery shopping. Not only do I like it, but when you haven’t been for so long, you forget what is there, plus new things come out that you have no idea about. I’d like to be in the know again about what products and foods are available to me.
General Shopping (1 hour per week): Similar theme for general shopping.
Go out with my kids (3 hours per week): I can’t take my kids out by myself. If they run off, I can’t exactly chase them. Plus, I can’t wheel myself up inclines, and they aren’t old enough to help yet. Yes I have a husband, but lets just say – going out isn’t his thing.
Lego (1/2 hour per week): I have just joined a Lego group. My husband and kids have to come to meetings because I can’t go by myself, and it’s an adult meeting that my husband isn’t interested in, so boring as bat shit for all of my boys.
Writing (1/2 hour per week): I wouldn’t mind joining a writing group too.
Advocacy (1 hour per week): I’ve had to let it go for the time being, but give me time and energy and I’ll be back!!!
General help (1 hour per week): I need help with general cognitive stuff. At my best, I’m fine – I can whip up lists and organise shit from here to Sunday, but when I’m not coping, I need help. Just someone to sit with me and have a general chat while I work it out. At a time when there are no kids in the background would be a bonus! I really need to go through our health stuff and organise it all again and make appointments and shit and I just can’t do it in my present state. I’d also like to organise what the kids need – at the moment, neither their wants OR needs are being met… There’s a bunch of shit – I really need to sit down and nut it all out and work on crossing things off the list, but I need help.
(Time is approx – some things will actually be each fortnight, or each month)
So – there’s my list of wants. For now.
I won’t get them. I’m telling you that now so that you won’t be disappointed. But I might get one or two. 🙂 I might get to triage a want for once, instead of only a need. And gosh, I’m thankful for that!