My Name is Fibromyalgia

From Chronic Pain Life Facebook group

MY NAME IS FIBROMYALGIA

Hi. My Name is Fibromyalgia, and I’m an Invisible Chronic Illness. I am now velcroed to you for life. Others around you can’t see me or hear me, but YOUR body feels me.

I can attack you anywhere and anyhow I please. I can cause severe pain or, if I’m in a good mood, I can just cause you to ache all over.

Remember when you and Energy ran around together and had fun? I took Energy from you, and gave you Exhaustion. Try to have fun now!

I also took Good Sleep from you and, in its place, gave you Brain Fog. I can make you tremble internally or make you feel cold or hot when everyone else feels normal.

Oh, yeah, I can make you feel anxious or depressed, too.

If you have something planned, or are looking forward to a great day, I can take that away, too. You didn’t ask for me. I chose you for various reasons: That virus you had that you never recovered from, or that car accident, or maybe it was the years of abuse and trauma. Well, anyway, I’m here to stay! I hear you’re going to see a doctor who can get rid of me.

I’m rolling on the floor, laughing. Just try.

You will have to go to many, many doctors until you find one who can help you effectively. You will be put on pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away, told to think positively, poked, prodded, and MOST OF ALL, not taken as seriously as you feel when you cry to the doctor how debilitating life is every day.

Your family, friends will all listen to you until they just get tired of hearing about how I make you feel, and that I’m a debilitating disease. Some of they will say things like “Oh, you are just having a bad day” or “Well, remember, you can’t do the things you use to do 20 YEARS ago”, not hearing that you said 20 DAYS ago. Some will just start talking behind your back, while you slowly feel that you are losing your dignity trying to make them understand, especially when you are in the middle of a conversation with a “Normal” person, and can’t remember what you were going to say next!

In closing, (I was hoping that I kept this part a secret), but I guess you already found out… the ONLY place you will get any support and understanding in dealing with me is with Other People With Fibromyalgia. ♥️

The Process of Doing Laundry

There is something that healthy people don’t realize about those dealing with chronic pain. That is the unrelenting exhaustion that occurs when dealing with and fighting chronic pain. This exhaustion severely exacerbates energy levels so sometimes we can’t do everything in one shot. Laundry is an excellent example of this.

When doing laundry, most people will throw stuff in the wash. When the cycle is done they will throw the clothes from the wash to the dryer and throw in another wash another load to wash. When the dryer is done it will take out the clothes into a laundry basket, fold them, then put them away. Then they repeat as needed.

There’s no way I could do all that. Not with the other things I need to get done in a day. So for me, laundry is a multi-step process.

1. Organizing clothing.

While this is frequently merged with the next step, it isn’t always. If I have a full hamper of clothing, I have to take it all out and separate it into different loads including a gentle load, potentially a white load bleach and then splitting up the colors into two balanced loads. Just the weight of picking up putting down and moving around clothes especially if there’s something heavy like towels, that can get pretty tired and pretty fast.

2. Washing.

From here, I have to get the clothing from the laundry hamper in my bedroom to the laundry room. Fortunately for me my laundry is on the same floor as my bed room. But carrying that much weight and then starting the cycle and making sure all the clothes are in and balanced. Well healthy people don’t think twice about this again it gets really tiring really fast.

3. Drying clothes.

I have a stacked washer dryer so picking up heavy wet clothing from the washing machine and pulling it up above head level into the dryer takes quite a bit of effort. Again most people don’t think twice about something like this. After getting everything in the dryer, making sure all the laundry balls (because I don’t use dryer sheets) are evenly distributed through the load because half the time I forget to do that ahead of time. So this means moving around all these heavy wet clothes, again. Now sometimes it’s a gentle load and that requires me to take things out move them across to the other side of the laundry area and it’s a pretty big space considering, and hang each item up carefully on the drying rack. Fortunately, gentle loads are rarely a big load and lighter in the summer than in the winter.

4. Emptying the dryer.

I can put a laundry basket on top of the washing machine and carefully drag clothing out of the dryer into the laundry basket. This is not the difficult part. The difficult part is bringing it out to the living room which is where I tend to fold my clothes. While they are no longer wet, they still tend to be heavy and I have to carry that from one side of the apartment to the other. Most people don’t think that’s a long distance but when you’re carrying that much weight and yes for someone on chronic pain that’s a lot of weight, that far it can be painful and exhausting. Then if I also have to grab the dry gentle clothing it’s on the drying rack on my way by that makes the basket even heavier.

5. Folding clothes.

I tend to procrastinate, I will admit that so this is partly a problem of my own making. As a result by the time I get around to folding my clothes, I usually have a couple of full baskets of clean laundry. Fortunately I have very little that actually wrinkles. I tend to take my time and organize the clothing as I’m folding it, while I’m watching TV. Watching TV while I’m folding is it good distraction so I don’t notice the pain or the fatigue as much. I will agree that lifting one item at a time and folding it and putting it down it’s not that big of a deal but doing that process over and over and over again for an hour or two, takes its toll. Yes it takes me that long to fold my laundry.

6. Putting Away.

As I fold, I tend to organize everything. T-shirts that go to the dresser together, pants that get hung, go together, hoodies go together, socks in one pile, undergarments in another, and pj’s all together. It makes it easier, but those baskets must also be brought back to the bedroom and the weight can be excessively heavy as I move basket after basket. But again I procrastinate until I’m actually looking in the clothing for specific items.

The issue with putting things away isn’t so much the stuff that goes into drawers, but the stuff that gets hung. I have a walk in closet & most of my clothing hangs from a rod just above my own height. Jean are the worst, not only do I have to get them on a pant hanger correctly, they are also heavier than most of my other clothing & the weight hangs long making it more difficult to maneuver. Especially if I have several pairs of pants, I may not be able to empty all the baskets cuz lifting clothing above my head stresses my arms & back exacerbating the exhaustion of the activity.

Conclusion.

So, not only do I have to do this in steps, resting between, this process can take a few days to work through because the pain and exhaustion severely limits the amount of energy one has.

Trifecta to Being Productive

I find there are three health benefits of being productive. I’m not necessarily talking about cleaning the whole house or an equally large activity. Even something smaller like getting X amount of laundry or dishes done. Something manageable but productive but nothing that is too much.

After getting something done & done well, I feel three things:

1. More awake and alert
2. More energetic
3. Less pain

Additionally, I feel better about myself and accomplished as I’ve set a realistic goal & reached it.

A Letter from Fibromyalgia

^{A Letter from Fibromyalgia}

Hii!! My Name is Fibromyalgia, and I’m an Invisible Chronic Illness.

I am now velcroed to you for life.

Others around you can’t see me or hear me, but YOUR body feels me.

I can attack you anywhere and anyhow I please.

I can cause severe pain or, if I’m in a good mood, I can just cause you to ache all over.

Remember when you and Energy ran around together and had fun?

I took Energy from you, and gave you Exhaustion. Try to have fun now! I also took Good Sleep from you and, in its place, gave you Brain Fog.

I can make you tremble internally or make you feel cold or hot when everyone else feels normal.

Oh, yeah, I can make you feel anxious or depressed, too.

If you have something planned, or are looking forward to a great day, I can take that away, too.

You didn’t ask for me. I chose you for various reasons: That virus you had that you never recovered from, or that car accident, or maybe it was the years of abuse and trauma. Well, anyway, I’m here to stay!

I hear you’re going to see a doctor who can get rid of me. I’m rolling on the floor, laughing. Just try. 

You will have to go to many, many doctors until you find one who can help you effectively.

^{Pain pills, sleeping pills, energy pills, anti-anxiety pills}

You will be put on pain pills, sleeping pills, energy pills, anti-anxiety pills, antidepressants, anti-epileptic or anti-convulsant pills. You will be told you are suffering from anxiety or depression, given a TENs unit, get massaged. You will be told that if you just sleep and exercise properly I will go away, told to think positively. You will be poked and prodded. MOST OF ALL, you will not taken as seriously as you feel when you cry to the doctor how debilitating it is to live your life, every single day.

Your family, friends will all listen to you until they just get tired of hearing about how I make you feel, and that I’m a debilitating disease.

Some of they will say things like “Oh, you are just having a bad day” or”Well, remember, you can’t do the things you use to do 20 YEARS ago”, not hearing that you said 20 DAYS ago. Some will just start talking behind your back, while you slowly feel that you are losing your dignity trying to make them understand, especially when you are in the middle of a conversation with a “Normal” person, and can’t remember what you were going to say next!

In closing, (I was hoping that I kept this part a secret), but I guess you already found out… the ONLY place you will get any support and understanding in dealing with me is with Other People With Fibromyalgia.

The Spoon Theory

The Spoon Theory is a document written by Christine Miserandino. It is based on a conversation with a friend of hers who was trying to understand her chronic invisible illness. In Christine’s case, she has Lupus.

So, Christine tried to explain how her health limits her, but was having problems. She was at a diner eating some french fries, so she came up with equating a spoon to a unit of energy. For example 1 spoon for brushing your teeth, 2 spoons for taking out the trash, 3 spoons for a shower, 4 spoons to make dinner, etc.. We, with chronic health issues have a limited number of “spoons” or energy and when it’s gone it’s gone.

Check out this document because it is a very relatable way of explaining to most about chronic illness.. I’m not just talking Lupus, but other invisible medical conditions including Fibromyalgia, Ehlers-Danlos syndrome, Cystic Fibrosis, ME/CFS,

BYDLS-TheSpoonTheoryDownload

If the attachment is unavailable, please try the original at https://cdn.totalcomputersusa.com/butyoudontlooksick.com/uploads/2010/02/BYDLS-TheSpoonTheory.pdf