Mobility Aids for Fibromyalgia

Today I found myself reading an article about mobility aids for those of us with Fibromyalgia.  I never thought that at 30 years old, such an article would be important to me, but it is and the reality of that is a little scary.  My family and friends think that I shouldn’t worry about things like that yet and maybe they’re right, but I feel like I have to prepare myself for the future as much as possible.  This illness is hard as hell to deal with and I have this constant need to try to stay one step ahead of it.  I think that’s actually an impossible task, but I still try.  The thought of needing assistance to walk on a regular basis isn’t something I like to think about, but I can’t act like it’s not a possibility.  My body is failing me and there’s not a lot I can do about that, but I can keep my mind strong and I don’t feel that I can have a strong mind if I can’t come to terms with what the future holds.  I don’t know about all of you, but I can’t afford to be in denial.  I’ve tried that and I almost ended everything.  I don’t care if everyone thinks I research Fibromyalgia too much because I know I’m doing what I have to do to survive this illness.  They would do the same if they were in my situation, but I hope they never have to be.

PAIN!

The pain is excruciating today.  It hurts to move and it hurts to breathe.  It’s hard to stay positive when every inch of your body hurts and when all your energy goes into just dealing with the pain. I have to prepare myself for the end of the day because most likely the thought of dying will cross my mind at least once.  I’ll have to fight, once again, the urge to take the easy way out.  This is my life; my reality.  I’m not being dramatic.  I’m being real.  I’m being honest.  This is the part of Fibromyalgia that you don’t see in the commercials.  Someday EVERYONE will be able to see this invisible demon that we are fighting…hopefully that day will come soon.

Fibromyalgia and Winter

Winter is fast approaching and we all know that the cold and Fibromyalgia do not go together.  I despise winter.  It always feels like I’m in a flare the entire time.  I know I’m not alone in this so what are some of the things you do to get through the winter months.  What helps?  What makes things worse? How do you prepare to go out if you have to?

My biggest worry when it’s cold is jaw pain.  It is excruciating and lasts for hours. Anytime I’m out in the cold too long and I start shivering it happens.  So I’ve learned to dress extra warm and to always wear a scarf to make sure I can cover my jaw.  If it’s really cold I refuse to go out unless it’s a must because that is one pain I just can’t handle.

Other than staying as warm as possible, I have no other advice.  I just don’t function very well during the winter.  If you have advice or even just a Winter/Fibromyalgia story please share it. What works for one doesn’t always work for the other, but it’s nice to at least have options.  

Fibromyalgia: It's Not Just About the Pain

I had a thought once, but I lost it.  The Fibro fog came in and stole them all away.  Fibromyalgia is cruel like that.  People assume that the pain is all we have to worry about it.  I would rather be in intense pain 24/7 with no relief than to deal with the myriad of other Fibromyalgia symptoms.  I could stand to live without the blurry vision and the ringing in my ears or how about the dry itchy skin and the nose bleeds. It would be nice if my hair wouldn’t fall out or if I didn’t have bright red cheeks.  The constant dry mouth and yes of course the Fibro fog are two more of the symptoms of Fibromyalgia that push me closer to the edge.  The list goes on and on and even the pain can’t be described as just pain.  It’s more like burning, aching, stabbing and throbbing.  So next time you meet someone with Fibromyalgia take the time to look inside of them.  Remember that Fibromyalgia is real and that the pain, most of the time, is the least of our worries.  Our lives are changing so quickly and it’s hard to keep up.  Most of the time we are able to be happy, but sometimes we just want to die.  We spend a lot of time alone, not because we want to, but because most of the time it’s just easier. We don’t try to be difficult.  Our illness is just difficult to deal with.  It’s lonely.  It’s frustrating.  It’s our new life whether we like it or not.

Stop "Complaining"!

How many times have you been told to stop complaining while talking about your Fibromyalgia symptoms?  I’ve personally lost count.  This is something that I will never get use to and it’s something that breaks my heart a little more every day. 

We wake up with pain and exhaustion and we go to sleep with pain and exhaustion.  We are so confused by our illness that we talk about it a lot.  This isn’t complaining people.  We are trying to understand what’s going on inside of us and sometime’s talking about it is the only way to make some sense of it. 

I get angry when people tell me that it’s just crazy and they don’t understand it.  How the hell do they think we feel?  That’s why it’s constantly on our minds.  Every day it seems like something else malfunctions and it’s scary and we feel alone. 

If you want to call what we do complaining then so be it, but I hope you never have to be in the place we’re in right now. It’s easy to say oh just forget about it and get on with your lives.  Every day I wish I could and I know everyone else with Fibromyalgia or any other chronic illness feels the same way.  Don’t judge us.  Don’t condemn us.  We didn’t do anything wrong. We’re sick and we just need everyone in our lives to accept that because it’s not going to go away. We don't want to be sick, but we are and we're dealing with it the best we can.

Fibromyalgia and Neurontin

I started taking Neurontin about 6 months ago.  The first 3 months I took 300 mg a day and for the last 3 months I have been on 900 mg a day.  It seemed to help with the pain, but over the last month during some major life changes I realized something.  It was making me extremely depressed.  I can’t be 100% that it’s the Neurontin, but I strongly believe that it is.  I’ve cut way back and my mood has improved greatly.  I feel like a different person.  Two weeks ago I wanted to die.  It was scary and it definitely wasn’t me.  I haven’t been suicidal since before my diagnosis more than a year ago.

It seems like every day is getting better.  Don’t get me wrong I’m still in some massive pain, but I’m happy and I’m ready to live my life.  It’s no secret anymore that I’m single again at 30 and that is so scary, but I’m ready for the challenge now.  I actually feel like I can do this.  I go back to the doctor soon, I’m going to talk to him about the Neurontin, and I may try to go without meds for a while and see what happens.  I’ve learned that I can deal with all the pain in the world as long as I’m mentally stable. 

We all know that there are a million unexpected turns in the Fibromyalgia journey, but it keeps life interesting.  That’s the way I like to see it anyway. I hope everyone is doing good and if anyone has any feedback on Neurontin please leave a comment and share your experience with it.

I'm Not Crazy...I'm Sick

Learning to live with Fibromyalgia is not an easy task.  There are so many symptoms to deal with and then on top of that we have to deal with the scrutiny from others who don’t believe we are really sick.  That’s the hardest part.  We get called attention seekers and hypochondriacs all the while we feel like we’re dying inside.  There have already been so many of us who have given up this fight and have taken their own lives, and still people don’t believe that Fibromyalgia is real.

One of the biggest questions we have for one another is how do you deal with people who don’t believe we are sick?  What do you say to those people who make negative remarks and laugh at our misery?  Most of the time I just ignore it and then I go home and cry.  I’ve had many thoughts of dying and most of the time it was because of people thinking I’m crazy and not sick.  I’m learning to become more open about my illness and I’m also learning how to explain it better.  YouTube videos have been helpful in helping my family to understand better.

So what do you say?  We have to stick together in this fight.  One person alone cannot defeat this monster.  I wish everyone a pain free day.  *Gentle Hugs*