Rant about my Disabilities and Chronic Illnesses

Wed, 09 Dec 2015 10:28:28 GMT

I have a chronic progressive illness called SEID (Systemic Exertional Intolerance Disease), that is truly a disability for me. It is unfortunately an "invisible disability" since at first sight I do not seem to be sick at all. My skin has "healthy color" even if the shadows under my eyes never go away. I have a paunch that also never goes away, and have gotten the (unfortunately expected in this society) comments that relate to "exercise more" and "eat less" that completely disregard my health problem and the symptoms attached to it.

Since I was born hard of hearing, and quickly became deaf, I am used to being deaf/hard of hearing and it is almost not a disability anymore - thanks to all the wonderful accommodations I've been able to take advantage of. My possible diagnosis of "schizotypal" is from the doctors being a bit bewildered at the odd spiritual experiences I've told them, yet I sound very sane and stable and do not fit the criteria for any of their mental illnesses, so - at a loss - they decided that schizotypal might be close enough. It allows them to fit my experiences into their framework without necessitating believing in anything "un-testable" or "un-verifiable" like spirits and metaphysical happenings.

However, the bulk of this rant won't be about my hearing loss, nor about my potential schizotypal diagnosis. It will be about my SEID disability because that has had, and continues to have, the most impact on my life of anything to date, quite frankly.

//warning, rant ahead//

I still need to be CONFIRMED as having SEID in order to apply for disability insurance. :/ It's diagnosed by ruling out anything else it could be. *sighs* Lots of testing. Fun. Even when I clearly fit the symptoms, and its been progressing unchecked since 1st Grade but only got horribly severe in the last couple years. :/

Symptoms:
There is broad range of CFS symptoms. But there is a core set of symptoms that affect nearly everyone with CFS. These core symptoms are:
•Extreme physical fatigue, mental fatigue, or both. It can be constant, or it can come and go. It is not relieved by rest. This fatigue also is so severe that it interferes with your work, your play, and your social activities. [*]
•Feeling unwell after being active. This can mean you feel ill or weak or your CFS symptoms are worse. There can be a delay before it starts. It can take more than 24 hours to feel better. [*]
• Sleep problems. (Even sleep-reversal, or sleeping during the day and awake at night.) [*]
•Pain, which can be widespread or in one place. CFS pain can be in one area, then move to another. You may have:
•Muscle pain.
•Joint pain.
•Headache. [*]

A person with CFS also has two or more of these symptoms:
•Problems with concentration, short-term memory, or thinking of the right word. [**]
•Being very sensitive to light, noise, or emotions [*]
•Confusion, slow thinking, or feeling disoriented [**]
•Muscle weakness or muscle coordination problems. [**]

CFS also causes the following symptoms. Different people with CFS have different combinations of:
•Lightheadedness and dizziness, very fast heartbeat, or shortness of breath when active. [**]
•Urinating often, nausea, or irritable bowel syndrome (IBS). [*]
•Low body temperature, cold hands and feet, sweating, or trouble with heat or cold. [*]
•Feeling worse when under stress. [*]
•Weight change or appetite change. [*]

(Note: this [*] indicates which ones I have. The [**] indicates which only pop up when I have the "crashes" or am very exhausted.)

Up until the last couple years, my primary care doctor, whom I grew up with, was convinced I was hypochondriac and just needed to get on an ordinary sleep schedule, eat healthier, and get the standard 20 minutes of exercise 5 days a week. (Check out the list above as to why that is not happening.)

Hell, even when there was mounting evidence that no matter what the FRACK I did in my lifestyle changes and the illness kept slowly and steadily progressing, she had me be checked out for psychosomatic because she was still convinced it was all in my head. x.- It was only when I was cleared for that, that she looked uncertain and admitted she didn't really know what to do. So, when I found an amazing doctor that I can actually talk with, trust, and have a good relationship with in the last two months, I parted with her VERY happily indeed. x.-

*siiiiighs* Never mind that they have found out that the way you can tell the difference between cancer patients and SEID patients is that cancer patients can exercise to their limits on day one, and come back the next day and replicate that result (just like anybody else.) SEID patients? They came back the next day and failed hard, and their bodies simply COULD NOT replicate those prior results, and started shutting down on them promptly with a myriad of clear symptoms and problems (things like racing heart rate, dizziness, low fever, coughing, sneezing, flu-like symptoms, nausea, and even a crushing exhaustion that would practically paralyze them if gone too far [aka a "crash" or what the doctors call "post-exertional malaise."]) They suffered those effects for weeks to even months afterwards and their overall health baseline deteriorated from working to and past their limits. (Source)

Every single SEID patient has this reaction to exercise. The doctors don't know why [yet] but they FINALLY are getting off their fucking asses to check. >_< I mean they KNEW about this stuff back when they called it Myalgic Encephalomyelitis or M.E. in the 1950's!! When there was a freakin' outbreak of this!! The symptoms have even been described in medical literature since the 1880's (albeit without a proper name or diagnosis for years later.) And yet the American doctors did what many considered the WORST decision ever in the 1980's... they renamed the fucking disease to "Chronic Fatigue Syndrome" and made it a laughing stock and shelved all funding so all progress on it HALTED for DECADES. It's like calling Alzheimer's a "chronic forgetfulness syndrome." Names MATTER. >_>

Finally, one rich-ass top-rate biochemist white man (Ronald W. Davis) had his (Whitney Dafoe) son get hit by a particularly HORRIBLE case of it. Poor guy! He had a RAPID onset from a healthy and physically active hiker and photographer, into a barely moving and barely talking emaciated man in the span of several months to a few years!! E^E More Information here. THEN the scientist got all active and forcibly pulled in funding and attention for the disease. They finally renamed it in America something that finally gets recognition and respect, SEID, and NOW they're starting to get somewhere. (Like with that two day exercise test that separated out the cancer patients from the actual SEID patients.) It took decades of pro-active work by the SEID patients themselves for the medical industry to even listen, and even then, it still took a wealthy well-known man's son to contract the illness before things really started moving. x.- *HEAVY SIGHS*

Even now most doctors still don't know about it (so they ridicule you and dismiss you if you bring it up) and the family of the patients have to campaign heavily to even get the needed testing to rule out everything else it could be. Hell even the poor patients themselves have to do a lot of work at the risk of exacerbating their own symptoms, just to get a crumb of respect and attention. x.-

People also seem to only know about the rapid-onset patients, like Whitney Dafoe. Ya know those who were struck down in the prime of their life by a flu that never got better and only gets worse. Us slow-onsets aren't known or discussed much. =.=

It's even worse if you're a kid and you get this and grow up with a slow-onset because nobody listens to you and you grow up thinking something's wrong with you, listening to all the accusations of "laziness," and having to console yourself that it's okay if you always finish last (or next to last, right before the girl with asthma so horrible she can't finish a run without nearly passing out) of the gym class in the mile run, because you finished at the very least right?! That it's okay to be horrible at push-ups and collapse on the mat gasping after 5 shoddy ones with your body screaming at you.

That it's okay to collapse into a near-dead state of zombie like functioning after a day of trying to keep up with your comparatively hyperactive peers in a Science Sleepaway Camp. That it's okay to not be able to do afterschool activities because your mind is so foggy you just have to get home and lay on your bed for a couple of hours and watch T.V. before it even remotely clears up enough to attempt homework or communication with others. That it's okay if you keep doing less and less and lagging behind more and more from your peers, basically having to take a full third of the school year off in all of your 8th Grade in sick days (managed to get A's and B+'s though since I like reading and could do that to catch up).

That you have to swallow the bitter emotions when you try to do the yearly Family Camp with your childhood friends the year before last year and find... that you now are bed-bound for a full day of the two days (one half-day, one full day, then a half-day. guess which day I had to miss ALL OF IT) due to extreme dizziness, fear of falling if you try to walk, so exhausted you spend most of the day sleeping or reading with a numb mind, and then hear all the fun things you missed out and have to grin and bear it. That it's okay if you have to give up another DAMN thing because you cannot go to it and know you would practically pass out if you tried. That it's okay to cancel yet another meeting with your friends and feel wracked with guilt and hoping they can understand.

That it's okay if you cannot exercise enough to work off that small belly you've always had (and were teased about and told to do more exercise and eat less of course, because you grew up a woman and that's what they say to you x.-) To be told by the horribly abusive mother of your friend that you're "not a real transman because the one I know exercises all the time and is really fit, so if you don't then there's something wrong with you" on top of the other things she said about "haircut looks horrible; no such thing as gay transmen; you're just a creepy lesbian that's after my daughter!; you looked so much better as a woman, skinny and happy and confident too, and now you are horrible, slothful, fat, and should go back to being a woman!" more or less. x.-

That it's okay to have degraded over the course of 5 years from someone who could go to the Voyagers Homeschooling Co-op two nights a week, take 3 to 4 classes each time, go and do longsword practice on the weekend, have a dance class, go to an art class, and study at home for math, writing, and art (I was homeschooled from 9th Grade on, and did Unschooling which is basically following your own interests as long and deep as you want X3 so fun~ The reason I had to drop out of 9th Grade? Because the Highschool was trying to crack down on people skipping classes, and instigated a policy of missing more than TWO DAYS per semester = automatic fail of all your damn grades for that semester. Me, the person who missed 1/3 of the whole freakin' school year due to sick days, and could not - ABSOLUTELY COULD NOT - go to school when so exhausted because that would kill me faster, was understandably frightened by this, had a brief suicidal moment of trying to cut myself and getting scared enough by that that I ran to my mom for help, and I had to drop out of mainstream school entirely after just 3 months in.)

I went from that.... to someone who nowadays basically can do two to three appointments a week and that's IT. One is some sort of healing work like Reiki or Massage (they alternate now), one is therapy with my therapist, and the third is whatever extra thing I need to cram in, like a haircut, or a doctor visit, or MAYBE an art class (that depends...) and if I want to schedule a get-together with friends, I have to plan it ahead of time to free up practically a whole week and have several days before to rest, and several days after to recover. I have to know the shape of my schedule weeks ahead of time, plan and fret and worry over fitting in what I can and when, and often times now (as the days got colder) spending most of my days in bed, on the computer, and distracting myself with the wonderful world of internet to ignore what my body is like and how its faring. I have to schedule writing time when I'm not exhausted from just ONE FRICKIN' OUTING that day (one of the appointments mentioned) and have enough energy to think let alone write or draw.

I've had... *counting them up* at least 6 energy crashes in the last six months. Many of them extended to a week of forced inactivity because my body simply could not handle it. One famous one extended to almost fucking 2 weeks, had 3 good days, over-extended on those days, and then BACK into another energy crash that (thankfully) lasted 4 days that time. x.- The bitter tears of letting go something you really wanted to do but cannot do, is almost my companion by now. x.- The frustration of having to plan even the little small movements when I'm in a crash and can barely move, is quite familiar to me by now. x.-

My crashes started when I first tried to do college several years back, and had done only ONE CLASS that took place two times a week, and could only get through THREE WEEKS of that, and was begging myself to PLEASE get through to the vacation that was in another couple of weeks, and knowing my body was screaming at me that I couldn't last much longer, but trying to push myself anyways... the first ever crash of my life was terrifying. It was followed by a second crash about 5 days later, and then a third about 3 days after that. In this case the crash means the worst of the crash, basically: cannot move from bed, cannot think, can only dully look at the clock and wish for the sweet bliss of oblivion and bitterly despise every loooooooooooooong second where I'm exhausted but yet not asleep, can barely move and if I try to say turn over from one side to another, I gasp and pant like I ran a marathon, cannot have the escape of a daydream and am forced to be in that prison of a body and being so aware that I'm awake and alive but not able to DO anything about it, hoping against hope that sleep will help but not knowing how to get myself asleep before long, and aware that from the outside I would look asleep or even unconscious but I am aware and conscious inside and cannot communicate or indicate to ANYONE that I am so, and thus so very alone in myself... In the days between the worst of those crashes I was panicking over WHAT THE FRACK IS THIS SHIT?! WHY IS THIS HAPPENING!? WHY NOW?! WHAT IS GOING OOOOOOOON!?!?!?!?! My doctor had no clue. My blood test result [taken two days after the third crash] came back normal.

I had to quit the college class. I guess you can say I'm too scared to go back and try again, especially since my overall baseline has deteriorated from even THOSE days.... So no ability to hold down a job, and no college for me. Maybe online college but hell I have a limited amount of energy, if there's a question between doing a college assignment and loosing energy needed for an upcoming appointment or being able to socialize with people and have a bit extra energy needed for the upcoming appointment... sorry but I'm choosing the latter. I put off the laundry as much as I can but lately I've been needing my parents to do it for me.

Fortunately I live with my parents and they can support me on my Dad's insurance - GO OBAMACARE! <3 - instead of having to deal with this while on the STREETS and homeless. :( I'm VERY aware how close I am to falling onto the streets and thus extremely paranoid about how to set things up so I can avoid that and still have a reasonably good life should something happen to my parents... I still dream of living on my own one day, SOMEHOW...

I'd rather prioritize doing stuff like my art and writing novels because I can do them NOW, and do them on my own time without a deadline without worries (added stress and pressure steals more energy away), and it leads to my affirmed life goal of becoming a professional artist and published author one day. :D <3 I still have dreams for the future!~ <3 Even if I had to go through a grieving period to realize I could never become a geneticist, psychologist, or even therapist, that I can still become THIS at least! <3 (Needless to say the disability insurance is vital part of my plans for even surviving once I'm 26 and off my Dad's insurance period <.< >.>;; )

And I've had to deal with a friend (ex-friend? not sure what to call them anymore...) who tried to understand and be supportive but couldn't and had too much on their plate with their abusive mother (yes the same one I talked about above, believe me she's even nastier to her daughter than she ever was with me) and family, where we got into arguments and then the relationship kinda exploded for a while.... Since they were paranoid I would leave them, did "tests" to see if I would, and I got angry about that, and they admitted to my face several times that they "wasn't sure what was the truth or not about your 'illness' and if you are lying about it because you seem to fold around the time I needed you most" and getting paranoid of "What if you NEVER get better?! I'm going to have to watch you deteriorate to the point that we may never talk at all!" To which I so wanted to say, but bit back my impulse, that it was my worry that I would degrade to a permanent crash and that I wouldn't be able to talk with anyone PERIOD, or interact with the world at ALL, and that scared the CRAP out of me. (Also that by comparison their worries seemed kinda minor and selfish but I'll admit to being selfish in my own worries so XP;; So that... wasn't pretty.

Hell I had to take a full year to really heal start to move on from what they said about me "not having a disability, so you can so do college, what's holding you back?!" despite the fact they were there when I had the crashes, and so in the argument over them wanting me to get off my ass and do college so I can get a job and not be reliant on my parents anymore, said "Do you want to live with your parents forever like a LAZY BUM and when they die, to go to the streets and die on the streets as a LAZY-ASS BUM who couldn't do at least this!!? I know someone who's a cancer patient who has a terminal illness and they could do college! Why can't you?!?!" (See the paragraph above about the difference between cancer patients and SEID patients...)

//end rant//

*sighs* So ...yeah. x.- Fun......

Anyways I’m doing what I can to live the life that I want: to live in Sedona, AZ (since I feel healthier and actually have more energy there due to the energy vortices! <3 ) and be a published author, professional artist, live in a cute small house built and/or modified for my needs, live with my boyfriend [who at that time would be my husband], and have kids (whether adopted or biological it depends on if my energy improves enough for raising kids at any age, PERIOD). Also to be part of the wonderful New Age, spiritual, artistic, and metaphysical community there, and getting friends discounts since I would be friends with the people who do the massages and Reiki treatments and all, and maybe even selling things to the tourists there as supplement to my own income. :D I cannot wait, I love this beautiful future. X3 <3 I will happily work towards it since I’ve visited Sedona, AZ three times (first was a day trip, second was two to three days, and this last one was a week <3 ) and just felt a calling and so “right” there for me in that beautiful, rejuvenating place. X3 <3 Like being “home” almost. X3 <3

Anyways for those of you who want to do some further reading, or need resources to help yourself or others who have something similar, just look to the many links provided below! <3 Enjoy~ Feel free to comment as well. :3 I like reading comments and replying to them as soon as I'm able! <3

Further Reading:
Overview and Analysis of CFS/ME/SEID
Chronic Fatigue Syndrome - Wiki Page

Highest Recommendation for All to Read:
20 Tips for Living Well with Chronic Illness
Buy the book here!:
How to Live Well with Chronic Pain and Illness: A Mindful Guide
I bought it and it helped me SO MUCH to get that validation and understanding of what I'm already doing right, what I need to work on, and to just see someone else having the same problems as I do and managing to still live their life with their husband, children, and grandchildren. <3

How to Help Yourself:
A Not-To-Do List for the Chronically Ill
7 Things I Learned from Having a Chronic Illness
Graded Exercise Vs. Pacing - Which is Better?
Advice from a ME/CFS Physician that Can Help - part 1
Advice from a ME/CFS Physician that Can Help - part 2
Managing the Symptoms
Energy Bank Account

What Healthy Relationships Should Look Like for Someone With Chronic Illness, Physical Illness, Mental Illness, and Just Relationships in General

How to Help Someone Who Has It:
Spoon Theory: But You Don't Look Sick?
Number One Thing to Do to Help People with Chronic Illnesses
10 Commandments for Interacting with the Chronically Ill
What Is It Like to Have CFS?

A Not-To-Do List for Cargivers
How to Keep Relationships Strong When One of You is Chronically Ill

Support Groups:
For Those Who Have It
For Those Who Have Loved Ones Who Have It

The site for the documentary I got to see screened before its official release. Official release date not confirmed, but you can see the screenings in your area.
The Forgotten Plague

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indigodragon

Rant about my Disabilities and Chronic Illnesses