Inside My Chronic Illness: A Spooning Spoonie

Dearest Reader,

How have you been? I have been remiss in asking what you have doing in your life, how are things going for you, and for that I apologize.

When I began writing to you I wasn't seeing my therapist due to my financial strife. The strife remains yet I am able to visit her once again. I was overjoyed to see her today and eager to tell her about you, my #spoonie friends and #support, and the progress I think I have made since our last meeting.

It doesn't matter our side

There is never enough time to catch up on so much time past, but suffice it to say I tried to cram as much as I could into my hour as possible. I led with what I am considering good news-I was contacted today by our local NPR station and asked to join them next week as a guest on their show. Wow! IKR!? About what? Oh. Shit. Well. About the company/job I tried to create when I was desperate for money and determined to find/make a position where I could use what skills I have (that you Fibro for limiting most of my skill set you asshole illness) making an income and relying on myself.

I began learning more about the Internet, what SEO meant, and went from there. I'm still pretty smart-an asset! Check ✔ I reviewed every old school paper and project and got a few ideas, but nothing that seemed plausible. I put my managerial skills to work and made a framework ready for an idea to plug-in. Check! ✔ Another step forward. The hours turned into days, the days into weeks. It was winter, I was hurting and hibernating, and all I really wanted to do was to rest and have someone hold me--💡 wait a minute --huzzah! I had seen this somewhere...I could be a cuddler!

our age

It was perfect. So obvious. I could set it all up, do it from home, I had the skill set and seriously, who can't use a hug or a cuddle? Touch therapy is a huge thing now (see what I did there?) and I convinced myself it would work. I did the research and found other people sprouting up with the same kind of businesses on both coasts and a few larger cities. I made contracts and did a local survey which was overwhelmingly positive. I learned how to make a web page, navigate Tweetdeck and put it all together. Keep in mind this took me way longer than the average person. I was not keeping any routine, my sleep was erratic and there were naps, frustrations, and lots of fibro fog. Lots. Nonetheless I was ready! I made contracts and interactive forms! I did it!! On my timetable! Fuck this illness! I didn't need to rely on anyone! I could rely on me! Yeah! Hell yeah! I did it! Whoo! Publish that shit! Yeah!

And there it sat. Nothing happened. It was very anticlimactic. I had a few queries, a few insults, several 'johns' looking for a good time (it was clearly stated there would be none of that as well as boundaries and the service was for men and women) and finally one paying client. And that was it. With no money for advertising, all my focused efforts wasted, I gave up. I let it go. I let it sit. Until today.

In the end my therapist believes this is reckless behavior and I am not arguing it might be. What about safety? I had precautions in place but the wind was gone from my sail. She had valid questions and wasn't judging, she was just doing her job. Why do think you chose that over this? Etc. It did help, I need to keep going, period.

our family

I was really fucking lonely. I really did/do crave the touch of someone and I know, for a fact, that LOTS OF MY #SPOONIE friends need that too! Hell! Lot's of people need it. Elderly people, single mothers, I mean, can you tell me one single person that you know who would turn down a hug? And if you are honest with yourself, who would not enjoy a little snuggle after dinner or on a rainy day? Or when you feel sad? Wouldn't it be great to be able to call up someone when you've had a bad day and actually cry on their shoulder; then when you are done-"Thanks I'm good now, bye!!"

our race

But grasping at straws while you are on a sinking ship is a measure of desperation. I already felt worthless. I already believed I was insignificant. I was and am in pain every day. Another failure. The asshole was right. The naysayers were right. No one wanted to hug, touch or even fuck this fat old cow (and yes someone said that). I had pumped myself up with confidence and wanted to believe so badly that I could rely on myself the fall from the effort almost killed me. Again, I was so.fucking.stupid.

We will see how this pans out. I feel like I am crazy busy already but I know it's because I have a lack of focus, am cognitively slow right now, and am worried about things that are non-issues at this point. How in the hell does anyone chart this kind of shit for disability?

Fibro>323 pts vs Anne>2pts