I Didn’t Ask For Fibromyalgia

I didn’t ask for this diagnosis of Fibromyalgia. I didn’t ask to be in pain 24/7, some days are better than others, but I have pain somewhere in my joints and other parts of my body everyday. It takes all I can to get through some days. 

Fibromyalgia is an invisible syndrome. You can’t see my pain, you can’t feel my pain. So unfortunately most people can’t understand what I am going through. A lot of people don’t even believe in Fibromyalgia. All I know for sure is that I keep getting so many syndromes and the doctors say it’s all from the Fibromyalgia. I can get on a ton of medications to “help” my pain. I have tried some and they make me to zoned out to even function. I do not want to live my life like that. I want to enjoy my time with my daughter and my partner. I don’t want to keep missing out on life. I am still trying to figure out how to do this. 

When I do have Fibro Flares (http://www.livestrong.com/article/275082-signs-of-a-fibromyalgia-flare-up/) I am alone, I retreat to my room. Why? I feel like I have no one to talk to, because who really wants to hear someone complain about their health all the time. I know I hate having to complain. I hate having to say “I’m sorry, it’s a bad day”. I hate that I get on edge when I get a flare. It really does feel like you’ve been run over by a truck. 

So many things I’m trying to work on. I don’t think there is a day that goes by that I don’t cry. I’m so tired of crying. I feel so weak. I was always a very strong person. Fibromyalgia has completely changed me as a person. Not for the better. I want ME back. Just don’t know how to get ME back, yet!

Lastly Fibromyalgia sucks……………… 

 

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Bad days.

Lately it has been really bad. A lot of pain days no matter what I do. Stress levels are up more, so I’m sure that has a lot to do with it.

The one thing I must do is exercise. I just really do not like working out. I need a fun way to exercise. But have not found it yet. Another is to really eat better. I am noticing more and more that whatever I eat seems to make my mouth hurt and makes everything numb. Not such a great feeling.

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My 5 Senses

Senses
Senses:  Any of the faculties, as sight, hearing, smell, taste, or touch, by which humans and animals perceive stimuli originating from outside or inside the body.
 
So my senses are a little mixed up lately. They truly have no idea what they are doing. 
 

Hearing

I seem to hear okay for now. But every once in a while my hearing does get muffled and then the ringing starts. Thankfully, the ringing does not last long (at least).

Taste

Everything I eat seems to irritate my taste buds. They usually get  inflamed and the edges of my tongue get numb as well as my lips. Nothing taste quite as well as before. When it gets really irritated my throat closes up a bit. Which really makes things interesting. 

Smell

Oh how my sense of smell has changed. Smells are just so strong to me and overwhelming at times. Certain foods, perfumes and such just make me so sick. Cleaning products usually make me cough because of the potent odors they have. And I’m not even going to mention the people odors that annoy me. 

Touch

I usually can’t have any clothing that is constricting or too heavy of a fabric. It makes my skin hurt. Hugging is an issue as well. Gentle soft hugs are the best. I can’t have my arms on a table to long, it makes my skin overly sensitive. Then I start to have a numbing/tingling feeling. Mostly feet and hands. So sensitive that even the lightest touch triggers waves of excruciating pain.

V I S U A L 

This is hard for me to deal with. I used to read 2-3 books a week. I would remember what the books were about, what I was hearing at the time of reading, what sounds I heard from every book I read. It has been a while since I’ve read a book, due to the fact I can’t remember what I even read. Much less even remember a paragraph. I guess part of this is my memory problem. Oh well, it was the best place to put it. I have trouble driving at night, my eyes burn daily and I get blurry vision here and there. Oh the fun!

 

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Trying to turn bad into positives

Here I am in my bed for the second day. After work I’ve just been exhausted and cannot get my act together to do my second job as mother & partner. I know this is not what I need to do. I am giving in to this feeling of complete loneliness and negative thoughts.

But I’m also so tired of saying “sorry” to people when I feel this bad. All that does is makes me more stressed and brings on guilty feelings. That I’m not out there doing more.

When I think about my life on a whole, I’m truly lucky. I have a home, a car, a job, great family, friends and the best of all I have Ruben and Leah. It’s very hard on them to see me in bed, in pain and they can’t do anything for me. I can’t even do anything for me.

I want to live my life. I want to laugh.

I don’t look “sick” so how can I feel so bad? But I’m turning the page on this story and I’m going to live like nothing is wrong. (Hopfully) 💜

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Understand?

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Viscous Cycle of Fibromyalgia

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Nothing Gold Can Stay

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  by Robert Frost

Nature's first green is gold, 
Her hardest hue to hold. 
Her early leaf's a flower; 
But only so an hour. 
Then leaf subsides to leaf. 
So Eden sank to grief, 
So dawn goes down to day. 
Nothing gold can stay. 

 

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New Year, New Me

2013 has not been a good year for so many reasons. I’m very happy to be saying goodbye to it. I’m ready to start a new chapter in my life. I have said this before, but this time I mean it. I can’t continue down the path I’ve been going down. I will destroy myself and everyone around me. I have not been truly HAPPY in a long time. I hate saying that. I know I am the only one that can change that. 

I must make a lot of changes to be happy. That means changes within myself and my surroundings. Maybe a new career, new house, new car and possibly new people. I need people that make me a better person, not drag me down. 

So HELLO 2014 

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Moment to Moment

I wish I was the same happy, carefree girl of a few years ago. I really do miss her. I had my issues with her, but I would gladly take her back.

My body is going through some rough times. Some days I’m hot, some cold. One moment crying the next as happy as I can be. I can’t even relax when I want. I would love to just sit and read a book, but if I sit to long I hurt. If I don’t sit enough I hurt. It really is a no win situation.

I would love to run, dance and jump with my daughter, but I just cannot do it. I want to be the fun energetic mom, not the mom that has to sit or lie down because of the pain or I just got to tired. It is very hard to explain what Mommy is going through to a 6 year old, heck I don’t even understand it. One moment I am dealing okay with what I’ve been given, then there are days I am so angry, the “Why Me” stage. I hate that stage.

My close friendships have changed as well. I don’t see or even talk to my friends as I use to. It just takes all I have to get through the day. There are days I have no clue how I got through it.

Most people live their life’s day by day. I unfortunately do not, I live moment to moment. I never know what the day will bring. I wake up every morning with the same dull ache in my bones and joints. The same headache, same restless feeling. But, as the day goes on it just depends on how bad it will all get. It’s a very lonely syndrome. Even when people are around me, I still feel alone. No one can “see” my pain, so how can they understand it, like I said, I don’t even understand it.

This damn syndrome called Fibromyalgia has taken everything from me.

 

 

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Did not write this, but I so identify with it.

WHAT YOU SHOULD KNOW ABOUT ME

1. My pain – My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I can not work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real.

2. My fatigue – I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can’t. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can’t help you with yard work today, it isn’t because I don’t want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

3. My forgetfulness – Those of us who suffer from it call it fibro fog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don’t have any short-term memory at all.

4. My clumsiness – If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

5. My sensitivities – I just can’t stand it! “It” could be any number of things: bright sunlight, loud or high-pitched noises, odours. FMS has been called the “aggravating everything disorder.” So don’t make me open the drapes or listen to your child scream. I really can’t stand it.

6. My intolerance – I can’t stand heat, either. Or humidity. If I am a man, I sweat…profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don’t feel compelled to point this shortcoming out to me. I know. And don’t be surprised if I shake uncontrollably when it’s cold. I don’t tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.

7. My depression – Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian’s patients suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

8. My stress – My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I’m not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

9. My weight – I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it.

10. My need for therapy – If I get a massage every week, don’t envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot-filled. If I can stand the pain, regular massage can help, at least temporarily.

11. My good days – If you see me smiling and functioning normally, don’t assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.

12. My uniqueness – Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.

I hope that this helps you understand me, but if you still doubt my pain, your local bookstore, library and the internet have many good books and articles on fibromyalgia.

Copyright © Christina Settje

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