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. ♥️

Battling Weight Gain

As mentioned on Tuesday, I have put a good chunk of weight back on and I’m now starting the process of fighting it back off. Here is my plan:

Exercise: I have reached out to the personal trainers at my gym to inquire to see who would be the best fit for me to set up an exercise regime for me to follow. I’m more likely to do so if it’s set out for me. Part of what helped me lose weight last time was running but I hate running.. At least running for running sake.

Comfort Food: I am no longer bringing in food that I consider to be comfort food that is deadly to the waistline. This means no more cookies or pudding or chocolate. It also means no more ordering pizza or other fast food.

Portion control: I have to return to watching exactly how much I eat. So if I make a pizza from scratch I can’t eat the whole damn thing in one sitting. That is no longer allowed.

Weight Gain

Over the last few months, my mental health has not necessarily been the greatest.

Motivation has been down, so getting to do things that aren’t scheduled has been a challenge.

Fatigue has been high, so having the energy to do even the things that are scheduled has been a challenge. I should follow up with my doctor to ensure it’s not just the fibro cuz it’s been more as of late & I am getting my B12 shots done regularly now.

Pain has been escalating. It hasn’t been high enough to warrant a visit to the ER, but it is higher than it was before Christmas. It’s usually been muscular pain in my leggs, sciatica pain in my lower back or just plan old headaches or migraines (a bit of both). Pain doc can’t help with the first or last beyond medications, and I’ve been getting epidurals for the sciatica. Unfortunately my back popped a month or so ago, so the epi hasn’t been as effective (yes, I’m following up with my GP on that when they return my call)

Comfort food has been the go to lately, most of which has not been healthy. Junk food, cookies mostly leftover from Christmas, candy, chips, etc . Not the best choices.

The accumulation of all these factors has resulted in significant weight gain..

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.

Cub Camp – The Aftermath

So I did do cub camp I wasn’t feeling great, but I ended up doing it. The kids had a blast I’m still recovering.

So, as you can see, it was a very physical weekend. Both Jenn & Wendy are runners & Cecile is one of my other Cub leaders. And I out paced them all. I I am still recovering.

I am hurting I am reeling. I have been physically sick. I am exhausted. I am mentally unwell. I don’t know if I can do this again. I don’t even know if I can camp at all again.

I dont know if I want to.

Tired? Me Too.

Don’t you also hate it when, despite knowing how badly you struggle with fatigue, someone who doesn’t is always delighted to tell you, “Yeah, I’m tired too?”

Me too, and I’ll explain why. I fully understand that everyone is entitled to feel tired, it’s a way of life. I also understand that everyone has different levels when it comes to how much tiredness their body can take. However, if you’re a person who is tired because they went to bed two hours before their alarm, or a person who is tired because they were binge-watching “Grey’s Anatomy” for two days solid without going to bed (I salute your dedication by the way, just saying!), then your tiredness level and my tiredness level aren’t really the same now, are they? In my opinion, people who sit there claiming that their tiredness from burning the candle at both ends is the same as tiredness from illness are pretty much insulting every single chronically ill person out there. Obviously with strangers, it’s slightly different as we can’t expect them to carry their crystal balls with them everywhere they go. But, when it comes to our loved ones who know our situations and who know how fatigue affects our minds and bodies, that’s when, personally, it makes it seem that my feelings are less worthy.

So, how is chronic illness tiredness different than “regular tiredness?” Well, seeing as everyone responds differently to fatigue, I will answer that question based on my own personal experience. Tiredness due to my multiple chronic illnesses is a level of fatigue which involves me sitting on the toilet crying my eyes out because I am so tired. It’s when I have hardly been able to move around my house due to lack of energy, yet I’m still sitting on the sofa yawning my head off, and an extreme bout of nausea because I am just so tired. It’s being unable to have a conversation because exhaustion has sucked all of the energy out of my body; therefore opening my mouth would use up a lot of the limited supply of energy I currently have to work with because, you guessed it, I am just so tired.

What are we so tired?.There’s several reasons. We can’t get to sleep cuz insomnia is common. We can’t stay asleep. And because our body is constantly fight with itself trying to deal with daily varying levels of pain and other symptoms of our illnesses.

Unlike healthy people, getting an early night doesn’t fix my problem. Doing less activity doesn’t fix my problem.Getting more sleep at nighttime doesn’t fix my problem (and that’s if I can even get to sleep!).Despite being absolutely mentally and physically exhausted, I can’t sleep, even though I would love to (and nearly do) fall asleep wherever my head lands.It’s debilitating. It’s exhausting. It comes with the territory of multiple chronic illnesses (fibromyalgia, chronic fatigue syndrome, etc.)

So if someone you know with chronic pain, especially moderate to severe chronic pain, and the say that they are tired. They are likely exhausted on, or more more likely off their feet unable to do much We don’t like to complain but when we do, it’s gotta be big.. So please don’t respond with a flippant “Me too!” What you are dealing with is quite possibly very different from what someone with chronic pain is dealing with.

Stuff That Doesn’t Mean We’re Okay

Posted on February 28, 2017 by MyFibroTeam

Life as a “normal” person is turned upside down when suffering from & living with chronic illnesses. Often these conditions are invisible. This can cause many to not understand and not believe that you’re as sick as you claim. They have to realize the despite the image we may project, we are in pain Every Single Day.

Then there’s the Catch-22.. Should I put forth an effort into my appearance when I miraculously do go out to look ‘normal’? Should I show up looking as bad as I feel? Or should I even bother going out? It’s a tricky thing — trying to live normally when your life no longer is. People tend to be surprised when we post a well-articulated paragraph on Facebook, have a good laugh, talk about things other than sickness (apparently lately ive been talking non-stop about Cub Scouts), write a highly researched, factually correct well written blog post, or bigger things like going on vacation even if it is just to go up to the cottage.

It is sad that we need to point out these things. It has hit many of us more than once that appearance, timed-just-right clarity of thought or momentary positive mood seem to adjust the perception of those around us creating more doubt in the truth that we each are really very, very sick.

So to that end, Take into account that while we may do things one day, these activities are not necessarily our norm, or it is something we have planned for well in advance. Review this non-exhaustive round up of things that do not mean we’re lying and actually okay:

1 – Articulation/Ability to Communicate Well

Admittedly this is currently one of my prominent disabilities, impaired cognitive function. However, many others can found themselves in the middle of a conversation in a rare moment of a clarity & articulation. And even myself even more rarely. These are the times where we have clarity of mind, excellent though process and the ability to communicate well. . In these moments, we are not communication like someone who is ill. It impairs the idea that Fibromyalgia and many other chronic disease do have cognative impairments.

i have actually spoken with several others with fibro who are highly cognizant in the change of their levels.. Personally I’m pretty sure my IQ has dropped at least 20 points by now, if not more.. In my mid-20s, I had an IQ of 180, thats hitting genius level. I haven’t had access to retesting, so I dont know 100% sure, but its pretty obvious to me.

2 – Laughing and Smiling

Apparently, those of us who are sick are not allowed to be happy, be joyful and positive. Yes, we are in pain & have memory/cognative issues, are drained & exhausted, have issues with sleep and deal with mental health issues, so some think it would get us down and we would not want laughter. In actuality, we need it the most because it feels good.. Smiling and laughing have little to do with someone’s health or pain levels. Those with chronic conditions have become strong from all the suffering they experience, they can still laugh and smile while in pain, which says not that the pain is low but that the need for relief is high.. Additionally laughing with others releases endorphins in the brain and it activates the release of the serotonin, both of which are homegrown feel-good chemicals which can only make us feel better.

3 – Getting Out

Being social is something we need to do. We can get both depressed and anti-social due to our chronic conditions. Some go “all out” as far as appearance: hair fixed, makeup, jewelry, and a dress. But I’ve never been one for being ‘dressy’ so when I go out I tend to be in jeans & a nice top. I’m not going out to impress, I am going out to have fun & enjoy myself.. But, I do tend to dress a little more sexy & with make-up when going to a club..

Some go out frequently. Personally, for purely social purposes, I go out once a week, maybe twice (without covid) . But, I also go out for Cub Scouts weekly which is different than social but is still getting out. I also get exercise – I walk weekly with my sister & our pups. We end up talking the whole time. I have also recently joined an exercise group that meets weekly which is also both social, but also exercise. Unfortunately, with my bff living out of town, & her also having fibro, we dont get to actually see each other that often even tho I have a key to her place.. I’d probably go out more if she was closer & she wasnt so busy with work..

So while we can & do get out, its not always a reflection on our health level. Sometimes we need to make accommodations. I’ve gone out to a bar, medicated on narcotics, to be with friends. (No, I wont drink) I’ve gone to Cub Scouts Day Camp the day after an unsuccessful ER visit, looped up on muscle relaxers & anti-inflammatories or MMJ. I had to go – I had half the equipment *&* the itinerary. Dont worry, there are other leaders because if I’m medicated, I don’t count for ratio. I’ve also usually had either a hot shower or preferably, a hot tub, when available, after almost any type of workout to minimize and even help prevent any residual issues I might have the next day or two. Unfortunately, there are still many times that I still need to cancel plans with scouting, friends, family & intimate relationships.

4 – Technological Activity

Technological socialization is all a lot of us have, especially with COVID. We tend to find typing on a keyboard or on text to be almost always easier. With the hermit life many of us live, we might also avoid telephone conversations because in & of themselves they can be stressful & exhausting. So when my whole body feels like death warmed over, but I’m usually more able to move fingers either on the laptop of cellphone. While a “activity” in no way suggests any other type of activity whatsoever, many people assume that because you are participating online that you are fully functional. Sometimes we express ourselves via social media just to stay sane.

If I post something non-health related or — shocker — something happy on social media or my blog, I wonder if others see it as me being “well,” which is never the case. Our illnesses are always, always there, even if we’re not talking about them at the moment. No matter how much we wish to ignore them, we would still prefer to make them go away.

5 – Announcements that Imply Activity

Many of us are creative people in some format even if is just colouring.. Due to COVID, many people have added extra creative outlets over the last 2 years.. But every new pursuit that is public in any form makes others wonder if, as mentioned above, people see those pursuits or accomplishments and think, “Oh see, she’s doing well.”

But you need to understand: I am on disability and I have no “real” job. My life revolves around creative outlets, medical appointments, cub scouts, health & wellness, Lilly, family, friendships and my social media & Blog. With my very messed up sleep schedule, I do dishes and laundry when I can, and attempting to keep both my pup Lilly and myself fed. Seriously. All of that is my every day. And as little as that seems to be, to my body, that is a whole freakin’ lot. And it gets overwhelming, and some days I can’t even do half of that.

But some days — or nights in my case — are better than others. And that healthy girl who lives buried in me somewhere is begging to come out and create, and sometimes I just have to listen. So when I post about the awesome stuff my Pack is doing, share images of my latest painting project, talk about my love of soccer, add to my Varage Sale store, or am chilling up at the cottage for a few days, all this is done either on a good day, or only take a portion of my day, but is the only activity.. What you see are ‘snips’, brief moments it time, a small glimpse into the parts of my life I want to share. And even then, some of those can be done while still laying in best, resting my body, but still having an active mind.

We are never fine. Whatever assumptions you make based on how we look, how we move, what we do, or even what people “think” we can do, the only thing safe to assume: we are always worse than you think we are

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The original post was first published here, While I have kept some of the content, I have also made multiple changes with my own feedback, comments & experiences.

The original author Kacie Fleming has learned about health and treatment options into the nearly six years since being labeled with fibromyalgia. She lives in North Carolina with her husband and spends her time working on her handmade jewelry.

What *Is* a Flare Like?

This is very hard to explain as each one is different.

A flare can vary in duration, intensity, symptoms, triggers

A flare can last for a few hours, a few days, a few weeks, or even months.. Possibly years..

A flare can simply be a temporary exacerbation of symptoms that can be treated reasonably easily through medication and rest. A flare however can also be a debilitating excruciating exhausting with a skyrocketing increase in symptoms.

A flare could be pain, fatigue, insomnia, significant cognitive impairment, muscle spasms or charlie horses, IBS/IBD inflammation, exacerbation of sensitivities to food, smells, touch, less severe symptoms include body temperatures fluctuations, nausea, RLS, TMJ, dizziness/lightheadedness, costochondritis, headaches or migraines, numbness & paraesthesia

I am not including depression in this list despite the fact that many will think that yes this is part of a flare. For some it may be but for me my depression is not related to the fibromyalgia so much but the limitations of the flare in physical activity, mental stimulation and socialization.

With all the symptoms listed above a pain flare is different, day by day, hour by hour, trigger dependent and with various possible causes, intensity.

For example, one person might have issues with increased migraines and fatigue.. Another might have a flare in IBS/IBD symptoms, or muscular pain or cognitive issues. No 2 are ever alike.