You Can’t Do Everything, But You Can Do Something.

With Fibromyalgia and other chronic pain you can’t always do everything you want, and we will always be limited in what we can do, but there is always something you can do instead – always an alternative.

While you may not be able to go to the amusement park with your friends/ family because the rides will hurt too much or because you can’t be on your feet all day or maybe it’s an all day thing that you can’t do or for whatever other reason, there are other things you can you. Maybe you can go mini-golfing with friends instead. Still a social activity, still something physical, still something fun and still hanging out with your friends. If that’s still outside of your wheelhouse, try just going out for a drink even just coffee to get out and be with those you love. If you are bedridden, why not a virtual chat?

You can apply this to all other aspects of your life. Certain things you can not do and may never be able to do again, but there are always things you can do.

The Spoon Theory & Chronic Pain

I shared the spoon theory in my last post here.

I’m sure you noticed that the girl in the story has the medical condition Lupus. While obviously not the same medical condition a lot of what she says – No, most – No, all of what she said still applies to anyone with a chronic medical condition.

With fibromyalgia and my other chronic pain conditions I also deal with the daily grind of the limits put on me by my medical conditions. Like Christine, the author, I have a limited amount of energy that I can use each day. Some days I start with more energy, more spoons. Some days I start with less energy, less spoons.

I hope this gives you a new understanding about what it is like to live with chronic pain and chronic illnesses like ours.

My next post is about The Matchbox Theory which I think is actually a little more apt.

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. ♥️

I’m Fine

“I’m fine” is the biggest crock of shit going on out there.

If I ever say I’m fine, call me on it because I am lying. Lying blatently through my teeth.

I’m fine can mean so many things:

• I don’t want to talk about it.
• I’m trying to ignore it.
• I’m not able to deal with people today, and unfortunately (don’t take it to heart) that includes you.
• I’m in agony & don’t want to inflict my pain on others.
• Brain is mush. Thanks to my meds! & Thanks to fibro fog
• I honestly don’t know the answer
• My mental health is screwed up not the physical.
• My mental health is screwed up in addition to the physical.
• I’m getting pain from multiple directions and can’t focus

It’s most likely the first one or last two, but can be anyone of these. If I make emphasis of “I’m fine” please don’t push it.

November is RSD/CRPS Awareness Month

RSD stands for Reflex Sympathetic Dystrophy which is an order term for CRPS which starts for Complex Regional Pain Syndrome. November is the awareness month for this multi-named chronic pain condition . See the images below for more information..

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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.

Chronic Illness is Exhausting, But Add in a Bug or Two

No matter what illness you have, it takes more out of you than the average person. Despite what the doctors say, there is some impairment to the immune system cuz you are always trying to deal with whatever disease or condition you have. When that illness includes chronic pain, it takes you right out.

This is something most people, even those who deal with someone in this position or who have an understanding of these conditions, don’t get.

I had someone generously share his bug with me late in January. Since it was one I’d not encountered before, it hit me like a ton of bricks. With an impaired immunity due to the FM  and CFS, not to mention the Endometriosis (which is considered to impair the immunity in some medical circles), I struggled with this. Now, with me also having IBS-D issues at the same time, it also didn’t help matters.   So I spent almost 2 weeks in bed.

People just don’t get how much worse this is for us.. For example, the aches and pains of a nasty cold, with existing aches and pain & things just get worse..

Of course, just as I was starting to feel better from bug #1, it get hit from the other direction with another bug. With an already impaired system from my medical conditions and an overly exhausted body from fighting the first bug, its no wonder I landed back in bed. Before you say I was still sick, I had different symptoms the second time around including a fever. And remember, I was still having IBS-D problems.

People still don’t get why I was exhausted at this point, sleeping 16- 20 hours a day. If I could heal and repair like normal people, in the same timeframe as normal people, I would be able to sleep less & maybe do some stuff around the house.

So finally, I started to get better from the second bug when *wham* I spend the night praying to the toilet god.. Do you know how much vomiting takes out of a body?

So most of that month was a write off for me. Honestly I’m not surprised.

So if you know someone with chronic health issues, especially multiple issues, don’t expect them to bounce back from regular colds & illnesses like healthy people.

How Is Fibro Reliable

The are only two reliable things about Fibromyalgia and chronic pain in general

1. Our bodies are pretty much always in pain. All day, every day we are in pain to some extent. I don’t think I’ve had a pain-free day, other than heavily medicated, in at least 2 decades.
2. Our bodies are reliably unreliable in regards to this disease. Consistently inconsistent.

Pain Levels Change

These change, frequently. They ebb & flow.. We can from a 2/10 one day, but the next a 5,/10, then a 3 then a 6,.. Even worse, they can shift hour by hour, especially when it bounces. Goes 5 to 6 to 5 to 6 to 5 to 4 and to screw me up, back up through 5 to 6 again.. Some of our pain is predictable by pattern like weather changes & over exertion, but not even necessarily then..

Now, jumping at lower levels like 1, 2, 3, or even 4 aren’t so bad.. but bouncing at the higher levels is alot harder on the body .

Duration Changes

The shifts in our pain levels can bounce from hour to hour.. They can be sustained for a period of time. Sometimes hours, days, even weeks.. I’ve even stayed steady at a 3 level pain level steady for months at a time. And I have seen no way to predict how long it will last I’ve had the same thing cause a shift and each time the shift (be it up or down) has lasted different lengths of time.

Frequency Changes

Our pain levels, as you can tell from comments above can last a different length of time each time. Sometimes minutes (but that’s usually an outside source!), Hours, days, weeks & as mentioned even months.

Triggers Change

I’ve noticed that sometimes I will get triggered by an activity one time, but not the next. On the reverse, something else that doesn’t normally trigger me will. Inconsistency. Shifts in the weather are a good example. We recently shifted to rain at the end of last week and I got hit hard for a bit, up to a 6, but slowly was able to manage it back down. But the inverse, the week prior we got hit with a similar shift to rain, but there was very little impact to my body.

Timing Changes.

When our pain will change is in no way predictable. Since childhood, I’ve had a tendancy to be better or healthier in the evenings. It’s to do with my circadian rhythms, I think but everyone has that Other than that, time of day has very little impact. There are days where I will suddenly wake in excruciating pain because of the pain. There are days where I will wake naturally & when I make that first move, Whammo! There are days when suddenly, mid-day, pain shoots up. There are days where I woke well and by the time dinner rolls around, I already want to curl up and ignore the world to deal with how bad I feel.

A Side Note – Third Consistency.

In writing this entry I keep noticing that the reference to changes emphasized to the increase. That’s probably because the increase is bad. But I also noticed that I’ve never had the thought, as I’m writing & editing about sharp drops in pain.

3. Pain can rise quickly, but without intervention, it always drops slowly