I almost fell today

I've only fallen once before and it freaked me the the heck out. I had severe muscle soreness that came of from repetitive action, bilateral quads, and both my legs went out from under me. Today was a near miss. Thankfully, no skinned palms, or worse. (It took close to two weeks to recover from that, 5 til I could walk without locking my knees)

I got new sexy riding boots in anticipation of my move to San Francisco. My old ones I've had for 8 years were garbage picked for me by someone I knew who was throwing trash and thought they might fit me. Those were the ones I learned to bootblack on...but it was time.

So I know part of the issue was getting used to new shoes which takes time for anyone...but it does seem like my proprioception is a bit slow in adjusting. The main reason I almost fell was simply instability due to extreme muscle soreness/weakness.

SO glad I managed to get my feet under me. Sure would have been embarrassing to land on my hands and get them all scraped up so I couldn't work and spill my coffee too. I'm grateful for that. I actually got my morning coffee.

I'm nervous about finding the right place to live in SF because not only am I looking for something less expensive, I also have other special needs. I'd much prefer a 1st floor as the thought of carrying groceries up stairs scares me. I need to feel safe in my home and to trust that friends or roommates at least understand a little about my limitations. Would you rent to someone who said they had chronic illness and spend a lot of time in bed?

I need to get through finals this week and next and then I can really focus on packing, roommate hunting, and maybe a little job searching. Yea, I'm pretty limited in what job I take too. I need short shifts and sedentary work. 4-5 hours answering phones maybe, or making appointments or something.

There's so much up in the air about the next steps in my life. Shall I stay a nursing major? I know I'll probably never actually work as a floor nurse in a hospital. Will I even make it through the program? I know I'm smart enough, that's not in question, but my activity levels are.

I know that uncertainty brings unlimited possibilities, and that's where I'd rather my head was instead of worrying about being able to take care of myself...I need to trust the Universe will provide me with what I need. I must have faith that I'll be safe wherever I am. I need to believe that I'm going to make it. And I will.

I will grow in my comfort level with uncertainty. I perceive unlimited possibilities and unlimited joy. I am loved and I am ok. I find the perfect roommate situation and a job that meets my abilities and income requirements.

Yea, baby. Off to bed now.

Bless You.

Witness

I spend a lot of time alone. Well, Switch is around a lot, but still, that's different than being able to go out like I used to.

I'm alone a lot because I'm sick on a regular basis. Daily, really.

But how do I tell people this? How do I explain about every symptom that I have and how I might look normal but I'm not. How do I explain that while I can push myself through something I pay for it, dearly. For days.

I want my loved ones to know what my life is like, but I don't want to feel needy. But sometimes I am in need.

I want to be Seen for who I am and I think that's a pretty normal desire. But it seems that the only people who know me are the ones who have seen me sick. The people who have watched me crash, witnessed a toxic reaction, seen me break down in tears with exhaustion, or have an anxiety attack. My roommate who sees what my daily living does to me, how I forget about or am not up to taking care of a lot of things around the house. My friend with whom I have travelled who knows that I need a nap in the middle of the day , who helped me up when my legs gave out on me, who drove me home when I was too ill be even be upright.

But is this really me?  Who am I. I know I am not my body, and I know I am not this illness. The illness is in the body. The body is sick, *I* am not sick. And that's a big difference. What is so insidious is the interwoven neurological symptoms that limit my social activities and the terrible emotional lability like depression, anxiety and weepiness. Those are the symptoms that are most challenging to me. I can separate my Spirit/Self from my body, but I have a hard time separating my emotions and my thinking.

The hardest parts are the feelings of fear- how am I going to take care of myself if I can't work full time (and school?) The loss- I remember all the things I used to be able to do, I remember the friends I used to have. The loneliness- so much time is spent at home in bed. The anxiety- what about the future, is my health going to get worse? How am I going to pay my bills?

And yet...who am I who doesn't feel Seen or Known unless the illness is witnessed. Am I identifying too much with the sickness?

How can someone know me if they don't know my challenges. How can someone understand me if they don't understand this illness that challenges me every minute of every day.

And how do I let myself be known?

Random thoughts and a brief catch-up

I've done it again, and during the busiest month I've had in a long time. This week is the last week of classes and finals are the week after. I was holding on and doing about average with my health then I had to do 5 1/2 hours of massage on Thursday. I was falling asleep by noon, found 15 minutes to nap in the car on the way to a clients house, and was done around 5...that was approximately an 8 hour day. Yesterday, Friday, my arms were so sore I was worried about the clutch and brake on the bike, but I had to get to school. I pushed myself again because I needed to get errands done and today I'm a frickin' mess. My body is so sore the NSAIDs aren't touching it. My back is sore from throwing my leg over the bike, my arms feel rubbery and heavy, and mentally I feel like I'm in a daze. Home feels ok, but when I went out it was like there was a weirdly familiar illusory environment around me.

So yea, I guess I can work an 8 hour day ( used to do 8 hours of massage and 10 hour days, just for the record) but then I need a few days to recover from it.
Yea, I rarely miss class because of illness, but I'd like to see how most other people handle class in the state I'm regularly in. My ass might be in the seat but I'm not really present and certainly not absorbing a thing the instructor is saying. I have to go home and teach everything to myself anyway. I've been in a daze for about half the time I've spent in class this semester. How is this a good thing to be doing to myself? How am I supposed to be able to work a full time job ever again? At least in class I can zone out, and sitting isn't very strenuous, but I can't do that at a job.

My move is coming up quickly. I just got another AWESOME offer for a place to live that is out of my price range. I'm sorry to have to turn it down cuz it would be a great arrangement. I beginning to wonder if I'm ever going to find the right place.

I need to feel safe where I live. I need to know it's safe for me to spend a lot of time at home and sometimes days at a time in bed. I need to know that Switch is safe and will be cared for my a roommate if I'm out of town.

I wonder how I'm going to make it in San Francisco. I really need a miracle. I need a break. I don't have the strength to work full time, let alone school or a second job to pay crazy high rent. I'm scared about my health getting worse and not being able to apply for disability. (and even if I could my income has been so low that I wouldn't receive enough to survive and I don't' have health insurance to get tests that would be required for disability anyway) Sometimes I wonder what the hell I've been thinking. All I can do is trust Universe that I'm doing the right thing and that I will get the answers I need in time. I don't know another way to roll.

So that's where I am now. My birthday is this week, I've got 2 tests and two papers due, then finals next week. Then it's the last week at my job and then I have to frickin' pack up and go. Holy sh*t!

Challenging Times

It's been more than a month again since I last wrote here but today I'm feeling the need to share a little.

I'm having a tough time right now, on a couple of different levels.

I'm having some kind of relapse again and my symptoms are up while activity is down. This leaves me emotionally drained, weepy, anxious, and depressed along with feeling like total crap. I am managing about 4-5 good-ish hours again before needing a rest...but I have to push it through class for 7 or more. After coming home and napping for almost 2 hours I managed to make myself dinner, take out the trash, and do a load of dishes. Now I'm beat again.

But I got through my school day, and I accomplished some things that seemed manageable. Cause there's certainly enough that doesn't feel manageable at all. Like the paper that is due this week, or studying for my microbiology practical. TG4 spring break.

I'm scared and worried. I wonder if I'm going to make it through school going like I am. I cut my work days down to 2 from 3, and I'm barely making enough even with financial aid. Disability is starting to look like an option and that makes me sad. But I'm not there yet. I'm holding on...and pushing myself...and it seems I can't quite recover from this bigger relapse. For the record, pushing myself makes me sicker. The only thing that helps is rest.

On the financial front...I had set aside a fair amount from my aid this semester as moving money, but half of it is now gone. poof. It's my fault, it went to pay a debt...but I am pissed that they wouldn't even work with me, wouldn't even listen that the money they were taking was from federal loans, didn't care that I only make less than $650 a month, didn't care that I took out that loan because I actually need it to live. But now it's paid and done, and off the plate. One less debt to worry about.

Financial abuse is something that is talked about even less than psychological, emotional, or sexual abuse. It's like everyone knows that if you hit someone it's abuse, or if you practice deprivation or ridicule it's abuse, and people understand the non-consentual sex is abuse...but no one talks about financial abuse. I'm in a lot of trouble now because of my ex, and I'll be digging myself out for a very long time.

And so I've had to rethink my move, and how it's going to happen. There's some things I can probably sell on craigslist or ebay, but it is going to take a fair bit of effort and time, something I'm lacking at the moment. We'll see. But it seems the only answer is to sell my car, something I was hoping to avoid. I'd prefer to keep it, having faith that I'd find a place to live with parking. There will be times when riding the bike won't be feasible, and I'm concerned that I won't have much stamina to do a lot of walking via public transportation. It seems I'm going to find out. There's no other place where I can get a few thousand dollars, nothing else I have that I can sell besides my car to help finance this move. So be it. It's not like I'm staying here in the desert. bleh.

I'm also thinking about going down to part time classes for the next year, assuming I don't get into USF and I'm at City College. But I don't know how much aid I'll be eligible for, and with part time classes that means I'll have to work more. At least the loans I do have will be deferred with at least 1/2 time classes. And there's a motorcycle maintenance class at CCSF too, cool, huh?

I'm also about done with this massage therapy thing. It's too much physical work for not enough money, and the taxes suck big sweaty ass. I don't want to do it for work when I'm in CA. Also because of the level of training and experience I have, an average employer isn't going to be able to pay me anything worth working for. The standards of training there are pitifully low, so employers are accustomed to paying less. If I were to put time and effort into building a practice I'd kick ass, cause I'm good at what I do, but that's not what I want. I'm thinking Whole Foods would be real nice...maybe a medical office front desk or something. We'll see.

I should be hearing from USF soon enough. Probably within the week-ish. Finding out either way would be really cool about now, as I've put certain moving options on hold because I don't know which part of town I'll need to be near, nor what a budget might be. Rent will have to be cheap, no matter where I am. I know I'll end up where I'm supposed to be.

I'm feeling discouraged enough about classes and nursing school right now that I'm considering other majors. Not ready to make changes quite yet, but I want to consider options. Right now, although a couple options are on the table, a psych major seems to be in the lead. Maybe there's some programs that are more science based, I have no idea. Just thinking.

I'll also have to do some research into health care. I doubt I'll be able to get medicare unless I make a try for disability. And if I go with the disability option there's not a nursing school that will take me. Even though I'll only need help for a couple of years. Such a small thing, a little help while I get through school and then can support myself again.  That's all I ask. And according to social security, if by some chance I'd ever get approved for disability (which is hard without there being a definitive test for ME/CFS, and without health insurance to pay for testing or care) the amount I'd get would put me at poverty level. Not good. I just need a little help while I'm in school, that's not too much to ask, is it?

So frustrating. I'm doing everything I can right now to get ahead, and school is so important to me. But what to do in the meantime? How do I live and make the bills, and get through my day? I don't know the answers.

Good thing I'm not in charge, eh?

Alright, off to bed with me.

a catch-up since Tofurkey Day

I knew I hadn't posted in a long time, but it wasn't until I signed in tonight that i realized just how long it's been...since around American Thanksgiving!  I'll attempt to summarize briefly what's happend since then, but I'm not going to go back and fill in a lot of detail, at least not at the moment.  There's a few things going on right now that I'll want to write about later, but first...the catch-up.

I finished my semester with a 4.0 for the fall...a cumulative GPA of 3.973 for my 3 semesters at community college so far. Finals were about average in expected difficulty and I ended the semester with grace.

I did a lovely celebration of the eclipse and the winter solstice.  My roommate was outof town and I had the house to myself for a few days.  I did get to see the eclipse through the clouds by going outside every 15-20 mins or so.  I've always wanted to observe Longest Night by staying up all night by candlelight, working on projects, etc, and then to welcome in the light of the sunrise.  I was able to spend some time in the quiet of candlelight without electricity of any kind, but I didn't make it all night.  Turns out that it took me several days to recover from the disruption in my sleep schedule and it really affected my health.  I'll do a symbolic but shorter observation in the future.

I spent Christmas here in Phoenix with my roommate, a couple other friends, and my roommate's parents.  I had a lovely time and was grateful to be invited.   t and I went to see HP on xmas day too. :-) I made a kick-ass curried lentil soup for a get together on Boxing Day, spent 2 days in Sedona shopping, eating yummy vegan food, and found a new stone or few for me to wear.  I buried my older clear quartz that had beenwith me for 2 1/2 years at Bell Rock giving it back to the Mother, and shortly afterwards I found my new stone...a truly amazing amethyst chunk.  Maybe I'll write about that experience as it was quite a process of letting go, moving onward, and of having the stones as specific tangible representations of those experiences.

I left for San Francisco on the 29th, had dinner with P, had a nice time connecting with M after I saw Further on the 30th at Bill Graham Arena...wow! what a show...wish I'd been able to attend the NYE show; maybe next year. I met Kris at Wicked Grounds on NYE then found myself at my first queer bathhouse party at Eros.  Had a playdate the next night, and more connection time with M, then a quick 2 days with Kris in Davis, and I was on a plane back to Phoenix.  I didn't have a chance to connect with much of my Tribe sadly, but it was a holiday afterall.  My count for the 4 days I was in SF was 5 times, 4 days, 3 people.  Pretty darn good for this slut. ;-)

Once I returned from SF it seemed I barely had time to finish the prep for the Dance of Souls at SWLC and to get ready for the start of the new semester and it was here! And SWLC is a whole post by itself, and so hopefully that will come later, with a couple pics too.

Yea, I've been pretty busy since tofurkey day, but it's all been good, good, and better. :-D

okay, time for this girl to get some sleep.  On tap this semester: Philosophy 101, Eng Comp 102, Developmental Psychology, and Microbiology+lab.  All great classes, but it's a full schedule when added to work and chronic illness.  But I'm holding my own even if sometimes I have no clue how I'm doing it other than One Day At A Time.

love love