I want to live my life

With what’s been going on physically I’ve had to deal with a lot of delays, redirecting, replanning. There’s still so much uncertainty though. I had my life all laid out in front of me, I knew where I would work, how many years I’d work there, which unit, the hours, what continuing education I would take, where and when I’d take my masters’, and then how I’d continue on to get an educator’s certificate and become a professor. Heck, I even knew where I wanted to retire. Things felt pretty concrete.

What I didn’t anticipate where things getting as bad as they’ve been. It’s like WHAM he’s are bunch of physical and neurological hurdles now try to do life. And quite frankly everything changed. Because neurologically I couldn’t keep up. My visual disturbances affected my ability to study, sleep, interpret information, memory was a huge thing, and the exhaustion too.

The physical symptoms simply made working a 12 hr shift of heavy lifting not possible. And in a field like the one I’d chosen there simply was no room to NOT be on your A game and I was functioning on my F-Game.

The thing is I had to come to accept that things weren’t going to go the way I wanted them too. And people close to me also had to realise that things weren’t going to be clear cut. Because even though they did not still do not want to accept that something is happening within me that impedes my ability to function as a healthy 24 year old.

During this time I’ve lost a lot. I’ve missed out on a lot of opportunities as well. I’ve watched others partake in things I am jealous of, sometimes things I don’t even want but I wish I had the choice to even make it possible.

I’m lucky. I have a really good friend who stands by me and talks to me whenever I need her. Who does little things to brighten my day even if it’s just going out for coffee. But there’s still a longing I have to do something more?

Part of it is not knowing how long it will take to be diagnosed or get treatment. My GP finally seems to think that maybe I have something autoimmune the problem with autoimmune diseases; however, is that it can take years to diagnose at times. What this means is that there exists the possibility that I may continue to deteriorate for years before I get a diagnosis (if I am even on the right track) and the thought of that can be a little daunting.

Professionally, I don’t want to be out of the game completely. There are options that exist there that do not include me doing physical work I can’t handle but that requires additional schooling and  work experience based on that additional  schooling. Then I would need to work that (potentially rurally) to get where I would need to be to have more professional options.

Romantically, that sucks. I’m not actively looking to be with someone right now. Part of that is I don’t want to drop the “I may be sick” bomb on someone who you just start dating. That’s a lot. It’s just sometimes I see my classmates and peers, my age, married, with baby #1 on the way. And it’s not to say I want a baby right now. Or that I want marriage right now. But I feel like I can’t even really meet someone the way things are.

Financially, it’s tight. So tight. And something I need to resolve sooner rather than later. I hate not being independent, I hate relying on people. And until I can get to where I need to be professionally I am part-time struggling, answering people’s questions over why I came back, or what I’m doing and having to explain it.

Socially, it’s been hard. After graduating it makes sense you lose touch with people but even before then things were deteriorating with my closer group of friends. I certainly put the nail in the coffin with one of those friends a year and a half ago. I’ve wanted really bad to try and expand myself to open up to other people but when you are constantly exhausted it just tends to fall through.

The one aspect of my life that feels like it hasn’t totally been thrown in the dumpster is that I sing to relieve my stress. Way back I signed up for a singing type camp in the fall of 2017. I think back then I thought to take a leap of courage and I thought it would be a good way to try something new and courageous, and maybe even meet interesting people. I think another aspect was when I signed up I thought I’d be better and have things figured out. That hasn’t happened yet but it’s become something of a shining star to look forward too.

So what does this mean for me? Honestly I can’t say with exact certainty what any of this MEANS for me. Part of this hinges on getting my body right but I feel like I’ve lost my equilibrium. I’ve lost my harmony. I mean it would be great if things got resolved soon but I can’t say for certain. 1) my bloodwork still isn’t back and who knows what it will say 2) my GP didn’t order the test that is the deciding factor on this 3) if diagnosis takes a long time and I continue deteriorate what will my functional capacity be?

I was always pushing things to tomorrow. Tomorrow I will go to this social event. Or after I graduate I will start dating. Let me just get my exam figured out then I will do this. But then something physical came along and took that sense of “later” away and what I was left to focus on was the right now, and the things I missed out on when I was healthy.

I don’t want to do that anymore. I still want to live my life. I don’t want to put things on hold forever either. I think that sometimes in life there just isn’t a clear cut time or answer to something. I don’t think that there’s going to be some great sign that says “hey here you are you can do this at this time” I mean there might be but if there isn’t I need to prepare myself for that reality.

I’m not saying that I should push myself beyond my limits. With whatever this is I’ve tried that trust me. It doesn’t work. Sometimes things are easier than others but sometimes they are much, much harder. It isn’t like when I would overexert myself as a student and rebound a week later.

It’s overdoing it and just not getting better. It’s a deep debilitating force.

What I am also saying is that I don’t want to feel depraved either. Even if it’s little rewards here or there. even if it’s little respite here and there. Maybe it will be having tough conversations about why my life is going in the direction it is. It will be met by scorn, probably frustration. But I want to  LIVE my life. I don’t want to just be existing with whatever this is.  Maybe I won’t be LIVING like a bawler but just LIVING no longer existing drifting in and out in limbo.

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