Wednesday, June 1, 2016

Patience, social limits, adjustments, re-learning patterns

*Disclaimer A*

May 23, 2016

I've been taking in a lot of information lately, in ways that I need to, in order to try and manage this EDS. This is while I’m very compromised, so it takes focus, but a calm enough focus so that I won’t make myself sicker. I’m the one who does most of the caring for me, and it's a big job. My partner has to hold the fort re parenting and many tasks for that matter. He’s already at his limits, being also autistic and with some undiagnosed mild to moderate chronic fatigue issue (which I am concerned about tbh.) 

I am still learning about this illness and my experience with it, and what is best for me to try and manage and get on top of things now because this thing has taken me really far down. More so then what's visually evident to people. I try not to photo in my worst moments. It's a choice of do I want to expose myself like this, so people will see how bad it is and get that, but so that some might think I'm attention seeing or want to ditch out on me for being too much of a downer. Or do I want to try and present the "rising above it" and dressing up, all the good days, and then have people not even be able to believe that I am as sick as this now. It’s like you can’t win either way, but I try to balance both the former. 

Today I can't do so many things I could do even a year ago. I'm always sick to some degree and never a day feeling fully well, just "better" than awful - but I'm still me and I still try to take in life as much as I can. In addition to processing and grasping this, and living and being this way without it depressing me and taking me out, I have to process. I have to be introspective. I share via instagram pics but then have really low forks for others things, and I feel kind of bad, but the former is why. In the face of all this I'm only finally realizing who I am. Even if I am also partially extroverted, wanting to keep up with a connect with people as much as is my capacity, I absolutely require a certain pie graph ration of total quiet introspection. That was always so, but now it's more than ever. 

Chat is extra forks that I often don't have. A lot of aspies find that, especially if they're ill, or taken up somehow. Even commentary, though commentary and picture sharing is more brief and easier. Messaging is alright but it stresses me out, the obligation to chat -  just ongoing active chat - you now what I mean. It's not because I don't care, it's because I care too much. It's hard to explain ...but it's tiring in my situation. I'm also co-parenting as much as I'm able, too. So yeah, I do require lots of time to process. That's why my ability to socialize back and forth is limited. I can barely even do groups that I probably should be doing (EDS support groups) in order to engage in some mutual support and not isolate. It's such a fine balance, with so little to spread around. I'm always walking a tightrope in this regard.  


I just cannot keep up with all that well, though I've spent my lifetime trying (some of which is the reason I'm so sick.) I'm not the best multi tasker yet I kind of have to be. It leaves me with few forks , but the one thing I'm doing right, in spite of my guilt, is having stronger boundaries re: limits, and not overextending - even when I am 100% the person responsible for that tendency to do so. 

Re-learning patterns. Re-learning how to live. Re-learning life as I knew it. I can't afford to worry about who may be unhappy with me for doing what I need to do, and being as I need to be, and going at the pace I need to be going at this time.

-Rosie G. 

girloutside.org

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