Thursday, September 25, 2014
Entry 20: Falling through the cracks...when will it stop? Because I'm ready to recover!
Oct. 9. 2012
I'm not feeling very good...another flare up, and these happen about half the time. It's my private hell. Interfering with my life, I feel, and letting others and myself down. I know that's extreme but I get frustrated. *Sigh* I'm not digesting my dinner properly; it's just kind of sitting there in my stomach. I can't get a full breath in, feel flushed/flu-is...joints feel twisted; aching all over. Dizzy, exhausted...
I actually wake up like this most mornings, as I believe my brain has a sleep disorder and I cannot get enough quality sleep, due to maybe carrying too much information and built in survival mechanism? Usually it does dissipate after a few hours, but some days, it stays with me for the day. Also, my whole mouth, head and neck constantly ache and hold tension, from grinding my teeth in the night, for so long.
I was supposed to have orthodontic treatment and preventative stuff as a teen. But finances did not allow for this to happen. Now, the damage is a bit far-gone... so I just live with it and try not to think about it.
My husband tells me that I often talk and script in my sleep; and sometimes sound frightened or scared. I know I have PTSD, especially from my adolescence. The details I’m not into elaborating on. A lot of it was to do with going undiagnosed, and as a result being repeatedly badly misunderstood and neglected. I have buried most of it in order to function.
I also sometimes see flashing pictures before me as I am trying to sleep, and my legs, arms and sometimes head twitches and jerks…like myoclonus? I have asked for a referral for sleep study; but was denied. I am too scared to ask for a referral to a Neurologist.... because I don't want to experience the intense frustration of being denied one.
Actually, I feel like I don't even want to go into the doctors' office anymore without a worker and/or advocate. Those guys keep saying that we're going to set something up in the way of a plan for me…but *taps fingers* I am still waiting. I feel that the length of time in which they are keeping me waiting is just not Ok. I am a good person, a mother, and an ambitious person with a lot to offer...and I can't wait till the day where I don't feel like I'm constantly falling through the cracks...
Man. sometimes I feel like this whatever-this-is chronic illness is slowly eating away at me. I don't want to let anybody down, especially my boys. I push myself…and being also autistic, in my position, I need all the help I can get including being able to manage my time and not go on just "adrenalin" all the time.
Oh but wait…I just love running around in circles like an over-caffeinated chicken with it's head cut off, trying to keep my house clean and in order for the sake of my family and for my own sanity too *Sarcasm*
I push myself, while dealing with dyspraxia too. Dyspraxia is a perceptual reasoning disorder that makes fine motor movement co-ordination challenging; taking extra effort and twice as long to clean up and organize the physical environment; compared to a typical person. Dyspraxics are often accused of being slobs and scatterbrains when it is not really our fault. Then this coupled with not feeling well in so many ways; chronic muscle tension, weakness/fatigue and joint injury…it just sucks.
It's not like I don't make an effort, and the result is often satisfactory considering. However, it feels like swimming in a deep ocean with the island of destination barely within reach.
Once I get to the shore I, more often than not, just pass out on the beach; without any time left to admire the beauty of it: to collect the lovely rocks and shells.
My husband does help, but he's AS too, works part time, and not superhuman either. You won't believe the kind of revolving-door messes two little munchkins, one with autism, can make. As much as I love them deeply, their behaviors can be a challenge. It can push on my sensory issues at times, though I do my best to “shove it back.”
I know I can sound smart, and look “together” in the videos, which I just started doing, now that I know how to use the editing program. What people may not realize is that I can edit the videos really well; I edit out pauses, ums, and little ticks, as well as if I repeat myself or begin to ramble.) However, I do genuinely suffer from deficits too, believe me…if you only saw me in real life, especially on some days! I’m just a perfectionist and when I present, I’ll do my best to present well. After many years of having to, I’ve become really good at it.
I don’t like to show vulnerability that much. What’s really funny is they if I complain even an inlking people might say it’s complaining… and it’s ridiculous in lieu of the fact I’m not disclosing 75% of just how hard it really is overall…my life, right now. If I don’t have the energy to present, and present well: I’ll hide away until I do…
Sure, I do have good days, but they aren't often enough. I wish there were more. I long to be out of this pain and fatigue. There’s so much I want to do and I don’t want it to get in the way.
The worse my FM is…the worse my dyspraxia is too, of course. It really overlaps in a hellish way. There are so many things that I want to do, that I feel inhibited from, more so from the FM than from the autism even.
I understand the autism now; I am ready to walk a path of clear desire...but there's this. How long it took for me to get disability approval and community living services, and the professional guidance that I badly need in order to have a better arrangement for managing with autism and a chronic illness, was too much. I think I’m missing some things here, and I need better tools to manage. Where, and how, though?
And, I’m not the only one…but I'm strong enough to hang on. Many in my position lose grip. I know there are people on the autism spectrum that are already receiving extensive services and having a hard time with how they are carried out, and while I do understand where they are coming from to a certain extent, I'm coming from another angle on things at the moment. Maybe there’s more to be learned here. Probably, we’ll see …
One thing I am grateful for is that the program I applied for has a good understanding and seeming respect of my independence, and knows that an authoritative approach would only push me away. I do appreciate their understanding on that as I feel it's genuine. I think the particular service provider agency that I chose, is right for me in my circumstance, as they are also experienced in dealing with clients whom have various brain injuries (FM has a strong cognitive component.) Again, we’ll see.
The only problem I have with all of this is how slow the process had been, I’ve long been “hanging in the balance” for the service to be actually implemented. I’m now in total burnout, especially physically. I am not blaming the agency itself as much as I am blaming the people at the top.
Another serious example of this is how long the process is taking to diagnose kids on the autism spectrum, and get them the help they need in order to thrive in school. This is especially when it comes to kids on the higher functioning end, with Asperger’s'. I have a friend whose going through agony with her daughter, whom is actually running out of her kindergarten classroom due to being overloaded as well as injuring herself.
She is a very pretty and smart little girl, who’s very advanced in her speech and seems quite socially motivated. So, clinicians keep insisting she is not autistic although she has many other signs and symptoms of clearly autism related difficulties. You would also think that since her mother has an Asperger’s' diagnosis, that they would make a connection.
We badly need a paradigm shift in the diagnostic criteria for autism spectrum and it is not happening fast enough (due to fear of cost, among other things.) The basic result is that parents are being dragged along in agony, having to fight to prove their cases, for not months; but years. Many people in many different situations, for example having a need for medical health services or disability approval, are in the name position.
I believe going undiagnosed for so long in a hard knock existence, and services taking so long to reach me, have caused my nervous system to become diseased and in turn make me chronically sick/in pain. I genuinely believe that...if you only knew what I went through and what I go through; you would say it's a given.
However, I also believe such a state can be reversed. The less complications that are “thrown at me” the better the chances, mind you.
I'm only 27. I am learning a lot about this condition and there is hope...but, there are some barriers I need to past, in order to really formulate a recuperation plan. There is also a really “rising above” kind of attitude that I need to fully hone. I’m not there yet. It’s easier said than done, and I bet only a fair few are able to do this whilst these kinds of challenges. However, I want to, and need to be, one of these fair few.
I actually believe that being able to regularly do my music would be so beneficial to me, especially with regards to the former. Although I love writing like this and do it because I feel compelled.
Thinking in patterns/pictures first, as Dr. Temple Grandin described, is something that’s very true for me. So, in lieu of this, it's not a stress-free activity, to translate and articulate like this. In retrospect, I do enjoy it, it's not that I don't...but it does take a lot of energy some of which is adrenal. Not so much with poetry though, that is quite different. The poetry, and most especially the music and arts, are on a different kind of (purely blissful!) energy wavelength, which I feel I’ll need to switch to, once I feel complete in the way of this blogging/actualizing “crusade” here. This is a temporary phase that I’m in.
I know I can maybe sound somewhat intellectual (more like an absent minded professor or who knows) but I'm creative, an artist first; music is my number one passion. It really is the one thing that relaxes me and brings me true joy. I miss it. I have an entire pop music artist persona/alter ego that I love getting into. I believe (and have been told by those whom I have revealed it to) that I can genuinely rock it with the music, and am in my true element there. It is just so therapeutic. When I'm into it, I completely forget about the stupid fibro.
Recently, I had an immune crash and very bad bout of bronchitis, which put my singing on pause. I’m almost recovered from it now and ready to get back to my little mini korg so I can practice again, at least sometimes. I was and am working on trying to complete an EP album but...finances always stop me.
I actually have someone who will help me for a very reasonable deal, and we've got some great although incomplete stuff sitting there…but you can't give something when you have nothing. I also have made music at home, and need to put that regularly into my schedule. I have some learning/processing challenges with new things but I have made a couple great tunes by myself so I have proven than once I get it, I get it and take off. How autistic of me.
Oh music...I miss you so much and I will see you soon. In the mean time, I silently and secretly mourn. I want to do what I always dreamed of.
Now I really know how to get it, minus the day to day adaptive functioning challenges that I am now much more conscious of. Understanding what they are, though, is not the same as completely knowing how to help myself when I have processing issues, social communication difficulties and short-term memory troubles.
You don't see it in writing but in person, I need the energy to rapidly think before I talk. The videos, once again, aren’t a good indicator whilst edited. Of course, I also record the videos when prompted by an idea, and not when I’m in a crash, but when I have at least decent energy.
If I lack energy, I may forget important things I need to say, by thought cycling, spacing out and getting distractible, or zeroing in on one topic. Sometimes, when I don’t feel well especially, I really can't broaden my scope well. This is particularly so in verbal language. I hold myself to a high standard in terms of how I present to people, so I mask a lot of my difficulties for this reason.
I wish this FM would go away... because I'm finally getting the opportunities I never had before…and the connections, the real understanding of who I am...and finally, some self-esteem. I don't want this fibromyalgia beast or whatever it is, to take it away from me. I speak out of fear although in my heart; I still have faith that it ultimately won't.
I can't wait for the new specialized clinic to open in 2013 and I can't wait to start seeing a naturopath (who understands autism/Asperger’s) as well to give me some proper guidance on diet and supplements. I'm doing it all by myself right now and as much as I have that aspie brain, it is really is exhausting.
I am ready to just give it up to someone I trust, if I could find this person without it costing beyond my ability to pay. Fat chance on that, though. I’ll find someone, and see them a couple times at least. Just make me a simple plan…I can't do this anymore. Too draining really.
What the meaning is in being sick like this, I’m not sure of… and I just want an answer. But, that’s not going to happen right now. Live in the moment...I'll try. Well good night. I suddenly realize I don’t want to type anymore, let alone think of any words. I feel like crying so I'm just going to lie down, cry, and pray.
- Rose Whitson-Guedes
*Like what you read/wish to support? Diary of A Girl Outside The Box (kindle book) is available to purchase via the "books" link on my site!