This isn’t a pretty post. It’s an honest one. I haven’t been writing much lately, which is to say issues are kind of piling up in my head and I’ve avoided dealing with them by staying busy DOING stuff. Now I’m running out of stuff to do and my body is tired, so my brain is yelling at me to find some other form of “get it off your chest” relief. So….I’ll write.
I’ve had a few revelations in the last couple of weeks. I’m still banging my head against the door that reads “What do I do with my life?” I never thought feeling better could be so challenging! Let me rephrase that. I never thought feeling better but still having chronic illnessES could be so challenging and bring up so much junk inside….! I guess that’s the rub. The chronic stuff isn’t going away, and I need to learn to live with it not really in the background but not in the foreground either (when it doesn’t need to be there) – somewhere in the middle. I’ve got to force myself to live in the gray rather than the black or white.
Goals, Ideas, Dreams, Pursuits….
While I detest laziness, I’ve met some people who seemingly feel no particularly compelling drive to accomplish or do anything with their talents. Yet they profess to be quite content in that state of ‘do-nothing’. I’ve never understood that, as I tend to see that more as an excuse to avoid personal responsibility. Yet if they really are as pacified as they claim, that’s got to be nice in some ways. Some of those same people I know like to complain that they never had the opportunity to do X, Y or Z, like get an education or whatever, frequently blaming others for their inability to achieve some goal. While in some cases that may be true and other people or circumstances outside of their control may have held them back, I often sense in such persons a present lack of drive to pursue ANY goal even when opportunities do truly abound.
Myself? I probably err in the other direction – pushing myself to achieve particular goals while sacrificing too much in other areas of my life, to my own detriment. I could be wrong, but I don’t THINK there’s a lazy bone in my body. Even if it takes much longer and a lot more work, I like everything I do to be done “right”. Quality matters to me, even in my casual writing.
How do I pick up where I left off?
I’m starting to think I left off “living” and dreaming, generally speaking, when I could no longer work in my field of Occupational Therapy. Does that seems as ironic to you as it does to me? (If not, think on it a few seconds and it will….) I just want to pick up and move on. I’d like to pretend I’m not “sick,” but I know that won’t work for long. Not taking my limitations into account when deciding what to pursue now and for my future will only lead to the pursuit of endeavors which are bound to fail when the next piano falls on my health.
Harder than I thought…
This is MUCH HARDER than I had anticipated. I thought after getting my SCS (spinal cord stimulator) and when/if my pain levels became more manageable (and I’m so thankful they have been!) I’d just kind of pick up something and run with it. Now I see it’s not that simple because I’m still limited by my conditions and as I’ve dealt with healthcare and survival (including college, family drama etc in that mix) the rest of me got left behind in the scuffle. Some parts of who I am have grown greatly while other parts have remained stagnant, in a holding pattern until I could look past my physical health to pick up the pieces again, laying right where I left them nine years ago.
I’m in a time warp.
During the last nine years (I counted), when I’ve had brief intermissions (usually a few weeks to months) between one crisis and the next, I went back to activities and interests I liked as a young adult or teenager (such as rollerskating or swinging in the park) as opposed to exploring new interests that better fit my new reality and age (uhm…now I know why my parents weren’t rollerskating with me – falling and tight muscles hurts more when you’re older!). That isn’t so bad in itself. I’ve needed to reconnect to something I missed, find something familiar to bring me back into a world that isn’t tied up from end-to-end in HEALTHCARE. When I’ve done this before, however, suddenly I got hit with a BOOM – the other shoe would fall and within a few days or weeks I was back to using all my resources just trying to keep my body in working order. The short respite didn’t give me enough time to sort things out mentally/emotionally and realize how stagnant I’d become. So I never got the opportunity (that I’m aware of) to move forward in the last nine years.
In nine years I’ve obviously changed in many ways. My interests, however, haven’t yet matured or caught up with my present reality.
Or maybe my interests have matured, but I’m more familiar with a ’21-year-old in-less-pain’ version of myself and don’t know how to connect the two. After 21 I feel like I only know a version of myself ‘in-more-pain’ and there is no ’30-year-old in-less-pain’ version yet. For that, I must default to 21.
At 23 I was ready to get my career going and I enjoyed the passion I felt for my work – I loved it! I was interested in dating and getting to know people, but health failed and it all crashed to a halt.
Two general pursuits…
Now I see two very general directions I’m open to pursuing: marriage or career. The odd thing is that I feel like I’m back at square one on both accounts. At 21 I didn’t yet have a “useful” college education (2.5 years but no degree) and I didn’t know what field I wanted to study after changing my major. That’s how I feel right now, all over again, because I can’t do OT. At 23 I wanted to date but couldn’t while working AND going to school full-time. It’s hard to date now because of my limitations and not having a conducive social network.
To pursue a CAREER (and not just a job I can do from home which I find tediously boring) I must either get more education or teach myself a marketable skill, which will take much time and diligence and possibly some money for courses. I have my doubts that I could manage my pain and dysautonomia well enough to go to school even part-time and actually have a brain that functions well enough to make use of the education I’d be trying to absorb. If I flare, studying and understanding lectures will be flying out the window. I must choose something that isn’t going to fail by default. I still need to give up my dreams of going back into the field of rehab/Occupational Therapy. Dr. Z told me I must plan to work from home and she’s told me to find things that are flexible enough to incorporate the reality of future flares.
HOW THE HE// DO YOU PLAN FOR ANYTHING IF YOU HAVE TO “INCORPORATE FLARES”?
Seriously! Flares are so horrible you can be stuck in bed for weeks and so weak you find it hard to talk, you can’t walk, you’re just praying to either die or miraculously survive the next 10 minutes of agony. Then dysautonomia gets triggered by lack of sleep on top of the pain. I have no need to exaggerate – that’s what a CRPS flare is like, in an extremely compact nutshell, without added emotional/mental strain being factored in. How do you work or go to school or serve your family if you’re in a flare-up? It’s like damned if you do, damned if you don’t! Doomed to failure if you try to follow your dreams, doomed to frustration and lack of vision if you don’t try and give up. (I’m not mad at Dr. Z, I’m just frustrated in general I think.) At my appointment with Dr. Z today, in answer to my question, she said, “You’re right; there’s not much you can do when you’re in a flare.”
I’m stuck in limbo. Plan for flares but also plan to move on with life…I don’t see how those two can cohabitate in the same reality.
To pursue marriage I must leave my house and get involved socially with others, which takes a lot of energy and planning. I must improve my ability to ask questions and remember details in conversations, even when I’m tired and in pain. I have to stay involved and not disappear from friendships when flares/pain knocks me down, not give up because I feel overwhelmed with my health and don’t know how to handle anything else “on top of that”.
Truth be told, from the late 20’s and up, going to groups for “singles” kinda stinks. The guys left over who are around 30 are often divorced, have comb-overs and used to work for IBM but still use pocket protectors and wear fanny packs. You know? Ouch. I just CAN’T date a guy with a fanny pack or a comb-over! I’d be so tempted to shave his head! That spells “Slim pickin’s”. My current social life consists of no opportunity to meet someone I’d like to date.
I tried the online dating thing a few years ago. Nobody was interested in me except for these sleazebags who are total skeevers. I prefer to meet someone in person, but that’s hard to accomplish when I’ve got to figure out how to work with the plans social groups often make spur-of-the-moment which I can’t participate in (“Hey, let’s go…” to the movies = migraines, bowling = can’t with CRPS in my arm unless I want to be a fly on the wall (not my style), walking at the park = fainting on a guy could definitely be dramatic but that’s not what I’m aiming for, dining out = wish you had told me sooner so I could have packed my cooler and I sure hope the place is Handicap Accessible!).
A lot of those online profiles single guys make request a “spontaneous” lady, and I’m definitely NOT that. 🙂 Correction: My mind can handle limited spontaneity and I can enjoy it; my body? not so much. People my age DON’T UNDERSTAND ME. It’s seriously annoying. I don’t know why, but I generally tend to fit in with folks in their 50’s and 60’s better than folks in their 20’s and 30’s. It’s like we have the same understanding about life or something. For better or worse, when my disability is visible (wheelchair, etc), men are often scared off and that significantly reduces those interested in me which may work in my favor because I don’t have to do as much of the weeding intentionally.
Therefore, the two general areas I have an interest in pursuing (there used to be many more when I was 21 and 23) – marriage and career – seem impossible to me. No matter how much I want either nor how hard I work towards either, I see a big sign flashing “Danger! Failure ahead!”
Unlike the folks I first mentioned who seem not to care about pursuing much of anything that requires effort or hard work, I’ve put in the effort and hard work whenever I could, but I rarely saw the fruit of my work, if you will. Right now that feels like a sour deal to me. I’m sure that’s based on this idea of entitlement I must believe deep down – that if I work hard enough I’ve earned whatever it is I’ve worked for. Life doesn’t always happen that way.
Oh my…I’m feeling trapped in so. many. ways. There’s got to be something I can do. *Clenching teeth.*