Before I start, I need you to think on one of your most intense workout. You know the one. The one where everything hurts, you feel every nerve, every muscle, everything. Ok, Have that thought in your head? Good. That my friends is what a person with Fibromyalgia feels. Everyday.
Everyday at least one part or more of your body hurts. Pain sometimes so bad you can’t even get out of bed. Let alone do your normal day to day activity.
But Mabel, you say, you DON’T LOOK sick!
You are correct. I might not look what people consider “sick” but I am in pain 24/7. I don’t use a cane ( even though I want to very badly), I don’t take hardcore pain killers (but man would they help) and I try my best never to complain (because if i did…I would never shut up). I might look ok from the outside, but inside I’m dying.
For those that do not know what fibromyalgia is (please google it as well)chronic widespread pain and allodynia, a heightened and painful response to pressure. Basically I feel pain 3x more intense than the normal person. I am always tired, often forgetful in a daze (fibrofog) and always in some sort of pain. Whether its my back, my legs, my head, arms, anything. Something is always in pain to remind me, I have fibromyalgia.
But you can take meds and exercise, you say.
Sure, but pain medication is not good for your body and you liver especially and exercise makes my muscles work more, hence MORE PAIN. There are many ways to help control it (yoga, felderkris floor exercises, better diet, SLEEP, no stress,emotional support etc) but its not curable and it will never fully go away. I live in a constant bubble of “ouch” and to say its easy on those around me, is a lie.
I have distanced myself from many friends, family, coworkers because once i see they don’t fully understand it or even try to or tell me ” you are just being lazy” I slowly walk away. It’s hard enough to force myself to wake up everyday, go to work full time, commute, come home, deal with household issues etc and still smile through it all. People with FM usually have things called flare-ups. A flare-up is basically a moment in when your symptoms are really intense. even the fiber on your clothes bother you. Your own skin hurts. And even on those days, I force myself to go about my day. Don’t get me wrong, sometimes I stay home from work, but lets keep it real…many people since they fully understand this invisible disability, they think I just don’t want to work. Which is the opposite. I am not a fan of being home. Even on flare up days, I knit, sew, something. Something to keep my mind off the pain. Something to make me think about anything but the pain that is running up and down my body like a kid in a candy store.
This is an illness that affects hundreds of thousands of people. Some have it low grade with occasional pain, some like me are high. I am only 31, and the chance of me eventually being on disability are high. But I want to fight this. I know I will never have 100% normal life from now on, but I refuse to let this beat me. And if i can open the eyes of at least one person to this illness, then I’m a happy person.
Emotionally I am spent. Trying to make people understand, trying to understand this myself. It takes alot out of me. Not having the fully support system I would like, hurts even more. Did you know Dr. Kevorkian, has helped several fibromyalgia patients end their suffering. The pain is that bad.
In writing this, I just want to spread the word of this illness. I want to open the eyes of those that have heard about it and thought it was not a big deal. It is a very big deal.
The physical pain is nothing compared to the emotional pain you feel, when you know you don’t have that many people in your corner to support you.
So if you know someone that has this, do me a favor, be there for that person. If they forget something, don’t get mad. If they didn’t clean the house, understand they are too tired. If they can’t lose weight, know that its hard for them. If they spend all Sunday in bed, know they don’t want to be there, but their body is not listening.
Helpful links:
http://www.fmaware.org
http://www.mayoclinic.com/health/fibromyalgia/DS00079
http://www.webmd.com/fibromyalgia/default.htm
http://www.fmnetnews.com/basics-symptoms.php
http://www.enotalone.com/article/3392.html
If you have any questions at all, feel free to ask.
by Mabel Peralta
About Being Latino Contributors
I also don’t look sick, but it is a different disability . Multiple Sclerosis is many different illnesses that affects many different people in many different ways. Of course with no cure. I understand and sympathize with Mabel, stay strong in spirit most importantly.
I do suffer the illness and I don’t look sick, but if all my friends and even my wife can feel what I am feeling they will be so devasted. I don’t wish this on anyone.
I know the only reason I am able to do what I do is because my faith is so strong and I am very passion and have a strong conviction of what I want to achieve. My trust in my Lord and savior Jesus Christ I am able to endure this and I am diabete 2 as well. I just recently had a mini stroke. I take a lot of pills.
Mabel I can relate whole heartly and maybe we can do something here for the Bronx and in NYC. There is no clinic that deal with what we go through and I feel we need to do something to help man and woman and even children are coming up with this illness.
This is not a joke, when you just can’t do what you use to do, and even at times you don’t want to live anymore. Is a really serious illness to those who been on their own and depend on their themselves to do things and now needed a home aid and trying to get people to help can be overwelming.
What touches me the most of what you wrote..I have distanced myself from many friends, family, coworkers because once i see they don’t fully understand it or even try to or tell me ” you are just being lazy” I slowly walk away. It’s hard enough to force myself to wake up everyday, go to work full time, commute, come home, deal with household issues etc and still smile through it all. People with FM usually have things called flare-ups.
My wife tells me this that I am lazy because I can’t help in the house chores at times. And it force me with a lot of pain to do the bed and do the dishes. When I live alone I bought paper plate and love my micro oven is what I use to heat my food and at point I stop cooking cause the pain is so bad that I can’t stand for a period of time. This is very stressful.
Keep us in your prayers.
thank you sally.
just a few minutes ago i had to explain to one FM and they looked at me as if i were an alien oozing slime.
lol
so with that i hobbled away.
*gentle hug*
i love a clean house i do. but i can move like i used to.
cleaning the bedroom wipes me out.
and it sucks because its not that i am lazy its just that it hurst.
and let me not even get into the chemical sensitivities.
household products have to be “green” of chemical free because otherwise i am done.
what i would like is to go to a place where we can bring our loved ones so they can talk to other fibromites and SEE and HERE that this is A REAL ILLNESS!!!
this is real
the sharp burning pain i feel is real
the tears that flow from my eyes because medication is not working and i rather cut off my leg than continue the pain…is real
where in nyc/bronx are you? i am in yonkers but work in nyc.
there are meetup groups in the city.
have you ever heard of meetup.com?
Yes I know about Meetup I am a member and I have a few organization that I join. I run my own organization as well.
Speaking as someone with an ailing loved one who has a visibly undetectable yet painful illness, it can be really tough to operate in this world. Surround yourself with positive things bc its so easy to get down. You are not alone, and there are thousands of ppl out there who can relate to your daily, sometimes hourly, struggle to keep things together. Your fight and story inspire me and others to break down walls of judgement and fear that divide us.