Handicap Parking and My Invisible Illness

 

I have an invisible illness. To look at me you would see a short, fat, middle-aged grandmother. Sometimes I walk with a cane, but most of the times I don’t need it. I have a handicapped parking tag hanging on the mirror of my car. I park in handicapped spots. However, I get nasty looks when I get out of my car because I look normal.

I am not “normal”, I have Fibromyalgia. This is a connective tissue disorder. The health professionals’ don’t know what causes it, or how to cure it. There is no blood work that says, yes, you have it or, no, you don’t. It is diagnosed by a list of symptoms and a series of pressure points on the body.
They symptoms of Fibromyalgia are many and varied. What affects one sufferer may not affect another. In my case it is chronic fatigue and chronic pain. The fatigue can be overwhelming. Some days, just thinking about getting out of my bed or my chair is more than I can deal with. Doing everyday activities like washing my hair may not be possible because I can’t hold my arms up long enough to lather in the shampoo much less have any remaining strength to rinse it out.

Chronic pain is another major symptom of this disease. It is not like any pain I have ever had. My muscles hurt. My joints hurt. My skin hurts. It hurts to have the lightest touch. Being hugged can be torture. Shaking hands feels like a vise. This is where the pressure point diagnoses comes in. There are eighteen pressure points on your body. A doctor who is familiar with the illness knows how hard and where to press. If he gets a reaction on eleven of the eighteen, it is considered a diagnosis. The day I went in because of the pain, I had a response to all eighteen pressure points.

Other symptoms that go with the illness do not in and of themselves mean you have Fibro. They can be indicators of other illnesses or mean nothing at all. I have a tendency to drop small items such as keys. I have also dropped large items because I thought I had a good grip on them and didn’t. This is not always constant and some days are better than others.

It can also alter your vision. Some days it is hard to focus and other days I have clarity of vision I haven’t had in years. Some days I can walk as I did ten years ago, and some days it is all I can do to make my legs work. Some days I can eat whatever I want. Some days my stomach is in an uproar and getting any distance from a toilet is not an option.

How does this affect my everyday life? In some ways, it has been extremely negative. I have well-meaning friends and family tell me about the latest miracle cure. They also give me unsolicited advice such as if you would only . . . fill in the blank . . . you would feel better. On the other hand, there is this wonderful new doctor, treatment or vitamin that will surely cure me. They are offended when I don’t jump at the latest offering or advice, but what they don’t understand is that I have looked at all the suggestions they are offering me, and I found them lacking, quackery or just plain dangerous.
I can no longer work, even part-time. The fatigue and pain would put me to bed. I know, because I tried working part-time. At the end of the first two weeks, I was in tears. At the end of the second two weeks, I was in the bed for most of the next five months.

My love life is not what I want it to be. It is difficult for my husband to make love to me knowing that his slightest touch can be painful. This might work if you are married to a sadist, but most husbands don’t want to hurt their wives. The fatigue also plays havoc with my love life. I get tired quickly.
I have three beautiful grandchildren. I have not bonded with the youngest two as well as I have with the oldest. Because of the fatigue and tendency to drop objects I didn’t hold them as much as I did the first one.All of this led to a tremendous amount of guilt and anger. These have to be dealt with in order to move on with your life.
Grieve.
Grieve for the abilities you have lost.
Grieve for the uncontrollable changes in your life.
Grieve for the plans you had that will not come to pass.
Grieve for the you, you could have been.
Get angry.

Find someone who will listen without judging. Who will let you blow off steam. If cussing makes you feel better, use every foul word you ever heard and make up new ones. Get it out of your system. Dealing with the guilt and the anger are not going to happen overnight, and once you deal with it doesn’t mean it will be gone forever. You will have periods where they will come back. Don’t be alarmed or get depressed, well maybe for a little while you can be depressed, but deal with them in the way you know works for you. The only exception here is substance abuse. It is very tempting to drink, smoke pot, do pills or eat yourself into a stupor to make it all go away. However, this are only temporary fixes, and adds to your problems. It is not what you would tell your children or your friends to do. So, don’t you. (End of sermon)

All is not lost. I have been able to make positives out of the negatives. I now work from home as a freelance writer. It has been a slow journey, but I am making progress. I have written a few articles and been paid for them. I was a regular book reviewer for Romantic Times Bookclub Magazine, and had to stop as I had a short story published. I am developing an online reputation as a writer doing research columns, writing book reviews and teaching classes online.

My husband and I are learning to adapt to the illness and have a mutually satisfying love life. My children and grandchildren are learning to cope and know that they are loved in spite of what I can no longer do. We are learning how to adapt the activities we love to do as a family so I can take part and everyone can have a good time.

My friends and family are learning to look carefully at treatments and doctors not just for me, but for themselves too.

Now, if I could just get people in parking lots to quit giving me dirty looks when a “normal” looking woman gets out of a car parked in a handicapped spot.

Submitted by guest writer Deborah Brent

©2016butyoudontlooksick.com
  • Lynne Blanks Adcock

    I understand everything you are saying. I feel the same way and I don’t look sick either. I’d give anything to be healthy again and park with you at the aback of the lot! Hugs

  • walker

    Actually that’s probably well past enough feeding of the troll.

    Look, Heather, you can continue to make thinly veiled insults and the like until the end of time. However, nothing you say will ever change where I park. This is because nothing you say will ever change my limitations, abilities, or lack there of of either. If my limitations/abilities change one day, then maybe where I park will change (depending on how they change of course), but until then I’m going to keep parking as I have been regardless of what you think about it because what you think of me doesn’t matter and again doesn’t change what I need.

    So you have fun continuing to prove that awareness of invisible
    disabilities needs to be raised and that haters are gonna hate. It’s not
    going to stop fibromyalgics like myself from being disabled.

    Oh and FYI: the username walker isn’t because I’m good at walking or anything like that. It’s my legal last name. I got it from my dad, who got it from his dad. Who had it randomly assigned to him since he was an orphan. So if you’ve been assigning any meaning to it, you shouldn’t because it has none.

  • walker

    I’m saying it wouldn’t do any good because things are more complex than that. There are also many people who don’t exaggerate their disability to qualify. Not everyone is a dishonest shit.

  • walker

    Not everyone lives in FL. There’s a whole rest of the world out there, and you’ll find it here on the internet. Also just because someone is in FL doesn’t mean their handicap tag was issued by FL.

  • walker

    And that is a good reason to lash out at someone who for you know never does that because….?

  • walker

    I just did state that my need is as real and valid as yours. Sorry, you’re not better than the rest of us.

  • walker

    Sorry, the system doesn’t work like that. It isn’t wheelchair users only parking, it’s disabled parking. Someone can not need wheelchair and still be disabled.

    Obvious I don’t consider a hangnail a disability, though the fact that you think I do only further supports how disconnected from reality you are.

  • walker

    How is my saying I’m using a rollator imply I’m not using a mobility aid? Just because I’m having a good day and can walk 250ft doesn’t mean I don’t need the space, and if you don’t understand why that is a need as real as your own you don’t understand fibro in the slightest.

    If I constantly push myself by doing things like parking far away, I will be in a non-stop flare. If I’m in a flare all the time I can’t work. If I can’t work, I have to go on disability. So what your saying is you would rather have me on disability than supporting myself via having a career, and I totally disagree.

  • walker

    No I am not. Nothing is 100% prefect, but that doesn’t justify a witch hunt.

  • walker

    Yes you need space to let you wheel chair out of you car, but it doesn’t NEED to be an access aisle, an empty parking spot will do.

  • Heather

    Fakers are going to fake. What good would a 200ft “obstacle course” do? Disabled parking is an honor system and there are many people who exaggerate their disability in order to qualify.

  • Heather

    lol, now you are claiming all disabled parking users are law abiding? Get a clue!

  • Heather

    No, you only need the closest spaces because you are unwilling to be inconvenienced by using a mobility aid. And by your own admission you don’t always need to be close. You obviously do not understand the difference between need and convenience. Your logic fails in that regard.

  • Heather

    Here’s where you show your true colors: “make your life easier”. You’re totally not understanding the word NEED. An access aisle doesn’t make life easier for someone in a wheelchair, it makes it possible. HUGE difference.

  • Heather

    I know your type all too well. That is exactly what I am claiming. Are you claiming someone who can walk 1000ft should qualify? How about a mile? How about 5 miles? How about all day without stopping. You know, they could have some other disability, like say hang nail. So why not allow everyone to park in disabled parking???

  • Heather

    You just did what? Claim you always require the extra space an access aisle provides? Be truthful now.

  • Heather

    May be rude, but it is also very true. Shopping carts get left in the access aisle all the time. Daily if not hourly.

  • Heather

    Blindness is the only exception in Florida. So stop assuming everyone you see walk 200ft is blind. Much more probable their gaming the system for their own personal gain at the expense of those who truly cannot walk 200ft.

  • walker

    Exactly. There are exceptions. Some exception you can’t see with your eyes. So stop assuming anyone you see walk 200ft doesn’t have one of those exceptions.

  • walker

    You were accusing her of doing something rude when you had no reason to do so.

  • walker

    I just did.

  • walker

    “Well yes I’m bitter when all the van-accessible parking spaces are filled by people who can walk more than 200 feet”
    “The reason is simple, convenience.”
    “And you have been told over and over again that many states, like Florida, combine the 200ft qualification”

    And I thought my memory was bad.

  • walker

    No, I simply decided to give you a taste of your own medicine for a moment. You have been suggesting the same type of things of people with different conditions.

  • walker

    Same to you. Sometimes just a space or two can make a world of difference. The world is not required to bend over backwards to make your life easier.

  • walker

    When did I say I want everyone to park in disabled parking? Where did you get the idea that it’s ok to harass law abiding citizens because there are law breakers?

  • walker

    If it was that simple, they would set up a 200ft “obstacle course” at the DMV/BMV.

  • Meara

    I have found cannibis cbd oil helps a lot with my pain. It’s not addicting like painkillers and isn’t as bad.

  • Heather

    In some states that is true. In others the 200ft qualification is required. The point being a certain level of limitation is required.