RSS

Support

I decided to do a blog post about support, because I realized support is difficult to come by when you’re facing a chronic illness.  The obvious means of support are from family members, friends, and a shrink.  But I will list some that may help you if you haven’t thought of these yet.  This may especially help you if you’re new to this mystery or chronic illness type thing!

1- Strangers.  Growing up, I’m sure you’ve heard the old saying, “Don’t talk to strangers.”  This is true. But it’s not so cut and dry.  Everyone we meet is a “stranger” at some point.  So, essentially, we’re all strangers.  But we’re told that saying to protect us from harm.  Don’t trust people who you never met who live across the country with your life, for instance.  But chatting with strangers online will perhaps give you some unbiased advice.  The main downfall is that they don’t know you like your friends/family.  You may also opt to go to your local cafe to meet random locals.

2- Support groups online.  This falls into category #1.  I have found online support groups to be my #1 source of advice.  The advice is usually unbiased, and you can talk to others who are going through similar situations.  The major downfalls are that a) hearing others’ problems may just give you added stress; or b) you may come across debby downers; or c) you may be limiting your audience, which may also provide to be bias (IE: If you’re in a Lyme Disease group, they may automatically start saying you have Lyme Disease if they can’t offer advice); or d) you may become annoyed with– or even overwhelmed and immune to– inspirational sayings.
Personally, I never mind hearing others’ stories.  In fact, it helps me.  However, I know people who it actually bothers.   I only mentioned that in case you were the type that can’t handle others’ stories on their health problems.
I find Facebook to be my go-to place for support.  You can search in the search field box for chronic illness, invisible illness, disability, disabilities, or the name of your particular illness (if you know it), etc.; and if you want local results only, you may opt to include your state’s name or abbreviation.  You then go to where it says “groups”.

3- Pastor or Religious Member at Church:  Even if you’re not religious, they can help.  Just talking to someone sometime can help.  Even if you don’t necessarily believe, getting prayed for can NOT hurt you.  So it’s worth a try!

4- Form your own support group:
a) You can post to your local Craigslist page in the “Community” column and start one that way; or:
b) Reach out to your local Church or Hospital and see if you can advertise or use one of their rooms for weekly /monthly /etc. meetings.
c) You may also advertise on online Facebook groups for chronic illness, health forums, local advertisements, by making your own website, by making a Facebook page, Oodle.com, and disability websites.

5- Behavioral Health support group:  Even if you don’t have a psychiatric issue, seeking counseling for your health issue may help you.  Simply just by you having a chronic illness may be enough to qualify you to seek counseling.  You may meet others who may be in the same boat as you.

6- Check your local hospital for support groups.  Most hospitals have a newsletter that they have printed, which state their groups.  Or, check the hospital’s website.

7- Can’t get out of the house?  Arrange a community outreach program and see if you can get help that way.  You can also request a Pastor to come visit you at home, if you’re spiritual/religious.

8- Need a ride?  You may want to see if a company such as Logisticare can take you to a support group meeting.  Check with your insurance to see if you qualify for free transportation.  Medicaid uses Logisticare. Logisticare then outsources to another company, which is the actual ride that will come and get you.
Another way you may get a ride is by carpooling with local support group members.

If you have any questions at all, I’d love to help you!  Please just comment below and I will reply!

 
Leave a comment

Posted by on June 20, 2016 in Uncategorized

 

Why I Can’t Attend Many Events

I am making this blog post because I get asked the same 1000 questions repeatedly, no matter how many times I explain this to people.  I am spending too much unnecessary time explaining this stuff to others.  I have no problem re-iterating myself to those who don’t understand.  But I can tell the difference between those who are sincerely trying to understand and those who don’t care and are just looking to cause a confrontation.

Check out my blog post of my illness and onset of symptoms.  That will give you the first clue as to why I can’t attend your even half the time.  This is because I am too symptomatic.  Different symptoms fluctuate at different times too, just like almost any any chronic, invisible illness.  It’s called a flare-up.

I spend almost 99% of my time at home.  Yes, I get out of the house… sometimes.  It is very rare.  The days that the weather is 45-62 degrees and it is cloudy OR dark are the days that I will be going outside.  I don’t go out if the sun is too bright, as it causes me issues to the max.  And I don’t mean just issues– I mean near-death symptoms.  I explained that in my previous blog of why I go to the ER so much.    I also have heat intolerance, shortness of breath, and many other issues.  If I had a seizure the night before, chances are I am too sick to function that day.  If your event falls on a day that I already know the weather is going to be in the 70’s, 80’s, 90’s, or 100’s, then I am not going to be able to attend.  It would be pointless and silly for me to agree to show up, to only cancel.  I feel it’s better for me to say I’m not going to go, and then if for some reason the weather drops or I can breathe better, then I will go.

I will not go inside a home that is not air conditioned to less than 68 degrees, or if people are cooking inside on a hot day.  I cannot handle it.  I don’t like causing drama.  I will simply not attend.  That way you all can do what you want, so I can breathe.

Breathing is a necessity, not a luxury.  I don’t even chance putting myself in these dangerous situations with people that I don’t trust.  And, sadly, I can’t trust even the people closest to me, to put the a/c on if I ask beforehand.  Often times I am lied to, and then I show up and I am suffering.  I am tired of suffering to appease someone’s enjoyment.

I can’t help that I am so critically sensitive to heat, humidity, and exertion.  Oh, and even the bumps on the road make my airways close up.  I have extremely fragile airways.  I can’t travel more than 30 minutes away from home; it’s not happening.  You have your limits, and I have mine.  My limits are not that of a normal person; that’s why I have what is called a “disability”.  I try to find ways to accommodate myself, and I am able to manage.  But when others won’t accommodate me, then I will not be able to attend their event.  I can’t even be sorry for not attending either.  I can’t apologize to something beyond my control.  I try.  I try my hardest.  No one can tell me otherwise.  They don’t know how hard I try.

 
 

Tags: , , , , , , ,

Looking For Input From Chronically Ill for Medical Reform

Hello, I have created a petition to reform the medical system.  I need YOUR help coming up with ideas as to how to fix this system.  Please comment either on this site, OR on the Facebook post you saw this on as to how you’d personally like the system to change!  I am going to be taking a consensus and collaboration of efforts.  Every single comment will be examined.  The more you write, the better.  Everyone’s comments will go to Congress, and don’t worry, it will be anonymous.  If you don’t want your comments being heard, please mention that in the comment.  I will re-phrase them as well (they won’t go in your own writing, if you’re worried about your privacy).

Tired of getting the runaround from your doctor, to get pawned to different specialists who send you in a loop?  Have you not been taken seriously?  Have you spent way too long trying to get a diagnosis?  Have you been diagnosed with many different issues, only to not have those issues taken seriously?  Is your doctor claiming you’re not disabled from work, yet you know you are?  Are you being told that you have mental health issues, when you know it’s physical?  Are you spending too much time in the ER because you feel near-death, and the primary doctors and specialists won’t really help you?  Can you not make it to your doctor appointments?

If you’ve answered yes to any of those questions, maybe you have considered that the medical system is in need of reform.  Not only is it flawed, but it’s severely flawed.

Doctors should not be allowed to get away with what they’re getting away with nowadays with the chronically ill.

1/3 people are misdiagnosed.  1/3 are undiagnosed.  Many people spend hundreds of thousands of dollars getting a diagnosis that could and would have been avoided if they would have gotten the proper treatment up front, such as the necessary MRI’s or getting adequate help to your doctor’s appointments.

I need YOUR help in coming up with ideas as to how we can reform this system.  Very specific ideas.  I will be taking a consensus of what needs to be changed, and then revising the petition based on that.  We’re in a majority-rules country, guys, so keep that in mind.  Nothing is ever going to be perfect… NOTHING.  But we can still try to improve.  And this system not only needs to be improved, but the red tape and propaganda need to be obliterated or at least reduced!

 
Leave a comment

Posted by on June 5, 2016 in Uncategorized

 

Why I Go to the Emergency Room So Often

Before I even get into why I personally go to the ER so often, let me just say that most people who have chronic, debilitating conditions frequent the ER.  Sometimes it’s because they are in dire need of medication. Other times they have a flare up.  ER doctors may presume they are treating the ER as a primary dr office, but sometimes the ER doctors aren’t looking at the big picture: it’s not as simple as to “just go to your doctor!”.  When we go to the ER, we *know* we are supposed to see a primary doctor.  For whatever reason, we often feel near-death, and we have to get evaluated.

I want to use my friend who has CP as an example (we’ll call her Jane Doe).  CP (Cerebral Palsy) is a perfect example of a *known* condition.  ER doctors are well aware of this disease, and they are trained and equipped to handle flare-ups. Jane goes to the ER on average of once a week… not because she is a hypochondriac, but she has legitimate concerns and wants to make sure she is not dying.  Sometimes, we just can’t tell.

Yes, that’s right.  We have no way of knowing.  We feel near-death so often that we fight to stay alive.  We use these resources out there because we are brainwashed to think to go to the ER when you feel like you’re dying.  When I call my primary, what does he say, “Go to the ER, now!”.    EDIT:  I’m just editing this one paragraph today in 2017 as an update.  I have been decreasing my hospital visits.  I am fighting for my life but at the same time tired of fighting, like a tug of war game.  I feel like I should be admitted to the hospital until they can figure this out, but another part of me feels like, “Why do I need to even have this figured out?  Why not just let my body die naturally, like it obviously wants to?”

I am aware it seems silly to frequent the ER. I am also aware that the ER is only a place to save lives. Whether we feel our lives are threatened or not, is our judgement call.
Every time I have gone to the ER, I have felt near-death.  And that is an absolute, 100% promise.  Not ONE time did I visit the ER where I did not feel near-death.   When you’re dealing with an extremely complex case, you may feel that getting help is the only way you’ll survive.

Personal reasons why I visit the ER:

Reason #1: People with chronic illness may not even know when they are having a heart attack because our symptoms often mimic a heart attack, stroke, and other life-threatening conditions. Basically, often times my heart will race to 200 BPM, and my left arm will go numb and become painful. I’ll be nauseated and so forth. All heart attack symptoms. I honestly feel at that moment in time I am truly having a heart attack, and if I’m not, I don’t want to take the chance of it actually BEING a heart attack. I don’t care if I have those attacks everyday!!!!  You may be thinking, “Well you should know by now that it’s not a heart attack.”  Of course, that’s the logical response.  When your heart is out of control, you will naturally want to make sure this isn’t the one time you ARE having a heart attack, God forbid.  Or something else. Because guess what– the symptoms are never the same during that type of cardiac episode.  (By the way, I’m using cardiac as one example.  That only accounts for about 5% of all of my ER trips.)  If I have the same symptoms as a heart attack– whether I get these attacks often or not– I’m going to the ER. Think about this… IF I were to have a heart attack, I’d never really know it, now would I? You may stubbornly say, “Yes, you would… you’ll know”. But the reality is, my symptoms are so severe. I feel like I’m legit dying. It really can’t get much worse than that. I would NOT know. I have legit passed out from the “pain” and heart racing.  I have gone blank.  I have fallen over, thrown up, etc. I would rather be safe than sorry. I don’t care how many times I get these same “mimic” symptoms. And no, I’m not having panic attacks either. I have a problem with exertion.  My cardiac issues almost never happen due to thought, panic, fear, etc.  My cardiac issues happen as a result of pushing, pulling, moving, walking, or overexertion.

Secondly, I am at a VERY high risk of having a heart attack or stroke. Sure, I’m only 33, but I live a more sedentary life than most 85 year old grandmas. My heart and lungs are extremely weak. I have very high D-Dimer (if you’re not aware, that’s the blood clotting marker in your blood). I have poor creatine kinase, proving that my muscles have atrophied. I also have seizures. I rarely move my legs. They are in constant pain because of it. I am at a high risk for blood clots from sitting around all day, and blood clots usually lead to a HA or stroke. You’re probably wondering why I don’t “just” do bed exercises. Well, it’s not that easy. I can manage some. I’m maxed out and I have plateaued at a certain level of bed exercise. I already do as much as I can from bed, and I can’t do any more because of my failing lungs. My lung function is 20%. And before you say that my lungs are at 20% because of inactivity, think again. Before getting poor lungs, I was VERY active. I literally had my lungs checked a week after falling ill, and I was told they were at about 20% FEV1. So, this did not happen as a result of inactivity. On the contrary, my FEV1 dropped from a different reason, and now I can’t exert myself.

Reason #2: I can’t get out of a dangerous system that will otherwise kill me. For instance, if my electricity goes out on a 90 degree day, and I’m stuck indoors, I will do everything I can to find a safe place to breathe. I’ll call around for a ride out of the house. But I can’t just go and hop into my car on a hot day. I have sun sensitivities to the extreme, and I can’t even get relief with that. My airways literally close up from the heat and/or high humidity. I simply cannot just walk outside on a hot day. I will have to have someone pack me ice, and I can’t do that myself, due to inability to exert myself. Also, if my electricity and a/c go out, I can’t just go to a neighbor’s house, unless their a/c is on. Furthermore, I would have to call 911 asap because I will feel my airways close up. And you need air to live. So, I am stuck going to the ER in a case like that. I had that happen when the car a/c stalled out on me. I had to call 911 from a parking lot while picking someone up from work. I then had to leave the vehicle I was in in the lot while I called 911 to get rescued, since I could not breathe. It was either that or die. The store I was in front of was closed, as my friend was getting out of work at the time. They would not allow me to come inside.

By the way, it only takes a few minutes for me to become unbearably hot, suffocated, and unable to breathe in the heat. My temperature raises to about 104 at times, and I see stars. I also feel delirious, lightheaded to the max, and near-death. The only thing that helps is getting into the cold air. I am not a princess, by the way. I don’t “like” the cold. I always hated the cold. I hate having to use a/c. Heat intolerance does not mean that you dislike the heat, or that you are uncomfortable in the heat… it means that you’ll get very sick and could even die. You are “intolerant” to it. If it was a matter of me just getting a little sick in the heat, then I wouldn’t care. I’ve never been in a situation that I was not rescued in the heat, which is why I am still alive. I have felt myself slipping away, but when I got to the a/c, I was able to breathe much better, and my temperature gradually lowered. I’m not going to test myself; I already know my body. If I would have stayed in the heat this one time that I was at 104 degrees, you could only guess that I could have died if my temperature kept raising and my airways didn’t open back up.

I can’t just get to the ER with a friend or family member. First off, no one is going to be there at my beck and call to take me to the ER. They’ll say, “Let me get ready first”, and they’ll take their time, as I feel myself dying unless I get out of the situation. No one takes me seriously enough to want to drive me to the ER.

Reason #3: I can’t “just” go to the doctor, like everyone tells me to do. They act like it’s a brilliant idea, that I haven’t thought of yet. No, you’re not the first to tell me this. Everyone tells me to go to the doctor. That is a very obvious solution.  People get frustrated because they think I have an answer for everything.  Yes, I do have an answer, because my illness has an answer for ME before I can even make up my own mind.  I cannot just keep “trying” to expose myself to sun / heat, which harms me 100% of the time.  If you had a pet shark that bit you every time you pet him, would you keep petting him?  NO.  You don’t go around touching hot burners either.  It would hurt too much.  I am not in the market to “torture” myself further than I already am.  I know my limits.  I can tolerate some sunlight, depending on the temperature and where the sun is hitting.  My symptoms may come and go (most are chronic), but the sensitivities are almost always the same.

Every time anyone has ever taken me to a doctor, it was a huge burden for them. They had to take off of work.  If for some reason it is  too hot that day for me to go to the doctor, there I am, a jerk!  I have to cancel, which means that now they called out of work for NO REASON.  Why would I want to put someone in that situation.  Don’t you think, as MUCH as I go to the ER, that I would absolutely LOVE to go to the doctor as well?!

Also, no one is really willing to accommodate me. They will tell me to suck it up. Some days I need a wheelchair, and who is going to push me? I feel like a pain in the neck.  I’m 33 years old in this condition; it’s very embarrassing.  Also, some days the sun is too bright and I can’t function… my airways close up. Sometimes I wake up too sick to even get to a doctor. Most of the time, it’s too sunny for me to go. I have a sun/heat intolerance. I can’t breathe in humidity. I can’t see the sun in the ambulance because it’s closed in.

The doctor is not going to take me in a case of when I deem myself having an emergency.  So yes, I “need” to go to a doctor, but I also “need” to go to the ER.

The doctors don’t even help me. They do NOT take me seriously. So, instead of searching for answers that they cannot provide, I do self-research. Going to the dr is a senseless cause. They will not and do not help me. They pawn me off to specialists who pawn me off to other specialists, because they don’t have the guts to admit to me that they have no idea what’s wrong with me. Or they simply don’t feel like going through the 10,000 sheet of paper stack that I come along with. Or they tell me it’s somatic (in your head) or anxiety (fear/stress). They all have their own theories. Nothing adds up. I’ve been diagnosed with so many things, yet no doctor can treat me, because the issues are too complex. I’m not even strong enough to fight for myself. I can barely raise my voice. Often times I’m so short of breath that I can barely speak. Going to the ER gives me relief. I’ll get into that in the next reason.  EDIT (2017): Some doctors have been able to help me, but for the most part just incidental findings.  I have put some of the puzzle pieces together.

Reason #4: I cannot afford the liquid medicine that the doctors prescribe me for my lungs. That is the only medicine that gives me relief, and I have to go to the ER to get it. Instead of the insurance company paying for it, which I’ve fought about and tried to resolve to no avail, they would rather pay some senseless ER visits. The medicine would cost me about $400/month. I even called the manufacturer of this medicine, and I cannot get any sent to me. If I don’t have it, my airways are much worse.

Breathing is a necessity– not a luxury. It’s not something I can compromise or negotiate over.

Reason #5. Because my airways are so tight, it is extremely difficult for me to drink liquid. Sometimes I can drink just fine, but other times I can barely get a few sips of water down at a time. Now, you may be thinking, “Well why don’t you just take tiny sips throughout the day?” Ding ding ding! Another seemingly obvious solution that I’ve been told millions of times! But it won’t work. I already DO take mini-sips throughout the day. I’m still only getting down less than one bottle of liquid every other day. I also don’t eat enough. I have to eat small portions. Some days are better than others. My stomach is usually fine. It’s my airways. And yes I’ve been tested for GERD. I’ve taken all of those meds. It’s not GERD.
Anyway, from not drinking/eating enough, I am chronically dehydrated. I often have to get an IV with fluid. I remember this one time I passed out in the ER lobby from not having enough liquid. Before I passed out, I told the staff I needed an IV with fluid; I knew that was the reason I fainted. Luckily, I was sitting in a chair.

Reason #6: There are so many complications that come along with an illness. You don’t always die or get sick from an illness; sometimes you get sick from sitting around or another consequence of the illness. For me, blood clots are a huge consequence. I have extreme back pain from sitting in an uncomfortable chair for so long. There were two times I had to go to the ER for back pain, because I have been confined to a chair for 5 years.  It’s a massive domino-effect.  I not only have the illness(es), but then I have the sub-illnesses that come along with it.  I also have “complications” from the sedentary lifestyle.

Also, because I spend 99% of the time inside my house and very inactive with poor nutrition, my immune system is very low. I am always weak and fatigued, and I always feel like I’m fighting something off. I have frequent colds, which only aggravate my already-bad lungs.

My Vitamin D is very low from lack of sunlight, of course.  The supplements don’t always work.  I’ve tried so many of them.

Reason #7: The issues fluctuate. I have such a wide range of symptoms (which I discuss in another blog post, if you’re interested), that when I have a flare-up in my illness, some symptoms are at peak. For instance, there are times that my vertigo is too out of control, and then I go to the ER. Sometimes it is a result of a seizure, in which case I am hooked up to an EEG to see if I’ll have another, or they’ll give me another seizure medicine that I cannot afford outside of the ER.

I have a top to bottom type of condition. Sometimes I need to see a specialist asap to tweak my medicines. Again, I can’t go to the doctor because I have no way to get there.

Reason #8: I have frequent falls, due to several factors. Sometimes I can walk a little bit, but then I may fall due to instability or gait dysfunction. I also have fallen simply from being very lightheaded. There have been a few times that my legs weakened and actually gave out on me, and I collapsed.  Sometimes I have hit my head very hard and felt concussed.

Reason #9:  I have had many near death experiences. If you are close to me, you have probably heard me say I feel near-death.  That is not a statement made for attention or sympathy.  In fact, there is little to no sympathy in having a chronic illness.  It’s quite the opposite.  I had so much attention and sympathy before becoming ill; jeez, I could write a book about that!  You lose all of that once you become chronically ill, especially with illnesses that aren’t mainstream.  So I hope this debunks anyone’s thoughts on if I’m just crying for help. I’m not.  I’m *genuinely* scared, isolated, concerned, and in 100% pure survival mode.  When I say I feel near-death, I truly am.  Do you know how many people have died after visiting the hospital to be sent home with a good bill of health?  It happens every single day. I would be no exception.  I do feel I’m a fighter.  I think most people in my shoes would have given up by now. Do you know how many people with chronic UNDIAGNOSED or chronic illness in general commit suicide?  I’m in many support groups; I see it everyday, sadly.  Take Daniel Strenge, for instance.  He had Chronic Fatigue Syndrome.  Do you know how many doctors blamed anxiety?  Well, he got emaciated to the point he was too weak to leave his bed, and he just took a gun and ended it.  He’s just one out of the millions of people who commit suicide every year due to illnesses they are told at one point or another that is “made worse by anxiety”.  They try all the meds, all the counseling, but they know deep down they do not have anxiety disorder.

Anyway, I trailed off there.  I have near death experiences, and you may argue that they’re “just dreams”.  Well, that’s mere speculation on both of our ends.  To me they are as real as can be.  I have been fighting so hard with God to stay alive.  I don’t even know why.  I’m in so much torture.  I can’t bear to leave this life, though!  I selfishly cling on to life, even though I feel that it has been my time to “go”.  I am walking on a thin tightrope as well.  It is bound to break soon.  The only reason I’m still alive is because I baby myself. I know my limits.  My lungs are at 15-20%.  My airways close upon doing certain things.  I can’t do much.  I try.  I know what I’m doing.  I’m not scared.  I’m not even scared of dying.  I just want to live.  The near death experiences don’t scare me, but I only have them when I am “dying”.  Sure, I’m still here, but I think it’s just because I bargained with God to stay.

Reason #10: I can’t just “throw up” like most people can.  My trachea closes.  If I get a cold with a fever, I pass out due to the heat intolerance.  This is NOT normal.

Just because the ER does not acknowledge they have saved my life, does not mean that is the case.  They have saved my life 100+ times, in ways they don’t even realize.

I’m in my own body. I know my body better than anyone does.

 
1 Comment

Posted by on June 4, 2016 in frequent ER trips, Uncategorized

 

Tags: , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,

“It’s Going to be Okay”… Is it Really, Though?

They all say, “It’s going to be okay.”  My reply is just, “Okay, you let me know when that happens.”

Is it really going to be okay? Isn’t expecting the best just going to be a major letdown if, in the end, things really aren’t okay?

Actually, this is more of an oxy moron. It’s okay that things aren’t okay.   If things were okay, that would be pretty scary.

So, no, things really aren’t okay.

But… define “okay” anyway.  This just further confuses the matter.

 
Leave a comment

Posted by on May 23, 2016 in Uncategorized

 

It Could Be Worse

I can’t take another symptom. I feel like I am maxed out. Everything seems to be going wrong. Some people have been telling me lately that it could be worse, that I could be blind, for instance. Sure, it can ALWAYS be worse. For that blind person, even he could have it “worse”. He could develop another condition. Or for a cancer patient, he may become deaf. Anyone can have it “worse”. That is not reassuring whatsoever. Even the sickest person in the world right now could get “worse”.  Sometimes suffering and torture is long-standing, and sometimes it is quick or lasts for a day or month. Also, severity levels matter. No one knows our severity levels. So it’s difficult to even convey how one feels. For instance, there may be someone out there who has leg pain so bad to the point they are severely disabled and suffering, yet have NO other symptoms. Me? I have leg pain along with 200 other symptoms! But I just can’t compare myself to that person, because I don’t know his/her severity level of pain. Mine fluctuates, as any condition does in severity level– from day to day and minute to minute at times, sometimes by the second. 

 
Leave a comment

Posted by on May 16, 2016 in Uncategorized

 

Boredom & Hobbies

If you’re ill and homebound, you may be bored.  If you fall into this category, I can help.

I have spent about 2 years being bored.  People always tell me the obvious things, like “Why don’t you do x or z?” or “Get a hobby.”  They think they have the magic fix.  Problem is, these are the most obvious solutions, and anyone ill has tried this. The dilemma is that we can’t find ways to effectively do these “hobbies”.

Before becoming ill, my hobbies were graphic design, dancing, typing, writing, reading, running, walking, exercising, piano, songwriting, producing, psychology, philosophy, talking,  computers, thinking, learning, and MUCH more.

My symptoms have fluctuated.  There was a good two years that I could not do graphic design work at all.  The brain zaps were too intense, and my eyes were so dizzy that I’d have seizures all night after doing graphics.   I couldn’t even watch tv or movies for a couple years. Now, I can watch some, but I suffer at least one seizure during sleep after every movie I watch.  So I try not to watch tv much.  Same goes with going on the computer.  I only get about an hour of computer time per day because of my whacky vestibular system.

I can’t exert myself almost at all, so definitely no dancing for me!  No bar hopping!  No fun “active” activities!  No hiking! You catch my drift.  This hasn’t changed.

I can write some, but not for long before the vertigo takes control.

I can still think, of course.

I can still play the piano, but only for 5 minutes per day about.

Anyway, my point is, do whatever you can.  If all you can do is sit or lay, then do that.  If all you can do is watch tv, then do that.  Just use your best judgement.  Don’t succumb to boredom.  YOU know what your limits are. Don’t let anyone tell you to do this or that when you know you can’t do it.   We all have limits.  The idiots are the ones who think we have no limits.  Oh yeah, like you can fly with wings.  Or you can run at 100 mph.  Right.  No.. you have limits, fools!  And disabled people’s limits are often much different than able-bodied people’s limits…. not always, though.  An amputee or paralyzed person, for instance, may feel overall “well” without any malaise.  They may not have much pain or suffering, except for inability to do certain tasks.  People who are ill typically have sensitivities or inability to exert cardiovascularly, for instance.  Two totally different, incomparable ballgames.  No illness is really comparable to the next, actually.  You have limits, face it.  Just do what you’re able to do.  Just try to not let yourself get TOO bored.  That’s when the mind takes over.  Sometimes I have risked physical suffering to the max, just so my mind didn’t take over.

As for emotionally coping with an illness, like I said, I can’t support cliche inspirational talks.  All I can say is that we have to do what we do to survive.  There is no magic fix.  If positivity could think us out of everything, no one would ever die or get sick.  No one would remain sick.  Cancer would be cured.  But no, those “think positive!” people have clearly never been in a place where NOTHING HELPS.  They say you’re not thinking positive enough.  THat’s BS.  Who is to say who is thinking positively and who’s not?!  No one is in my mind, except me.  NO ONE knows my thoughts.  Regardless of what I write, say, or act, my thoughts are MINE.  And I will tell you, that I have done countless hours of postiive hypnosis, and even believed and had faith in it, for it to NOT cure me.  It can take the edge off, but it’s not going to cure you in every situation.  Don’t EVER blame me for not thinking positively.  You’ll look like a fool, because on your death bed, when it’s your time to go, you’ll be wondering why positivity didn’t keep you alive.  In fact, if you’re ultra positive, and so dead-set on this pot of gold at the end of the tunnel, you’ll be in for a rude awakening when you find fool’s gold.  Life is NOT going to be perfect at the other side of the rainbow. Life is going to be an obstacle regardless.  Life is going to be easy for some of us and hard for others.  Some are going to be dealt a card game hand of all 2’s and some will be dealt all Kings.  I have been given 2’s.  You know what?  Who cares!  Make the best of those 2’s!!!!  Most of us, in reality, will have mixtures of 2’s, 3’s, and up.  I have been given mixtures my entire life. Lately, though, I’ve been given 2’s, and that’s okay with me.  I have to make the best of it.  I’m not going to lie, this illness is ridiculous.  But I can still cope.  It’s difficult.  Torture is the worst thing we can endure.  Mine is steady and chronic.  Some people suffer for a year; some suffer for many years.  Some suffer is level 10/10 and some is 4/10. No two sufferings are the same, and we have different pain thresholds keep in mind.  Don’t compare.

 

 
Leave a comment

Posted by on December 29, 2015 in Uncategorized