Be Your Own Advocate

A chronic pain scale

Unfortunately there are some certainties in this life that sufferers of chronic illness have to face. From facing employers who do not have equitable work policies to dealing with healthcare providers who just really don’t. know what is going on with our bodies, it’s enough to want to make you cry. I know I have at times.

But it’s because we have these things to contend with that makes what I am about to say even more important. Yes, there will feel like there are times when we are the victim of our illnesses, and we have to allow ourselves to grieve for things that are no longer open to us. But then, regardless of whether or not we have a caregiver in our lives, we must become our own advocate and learn to fight for the things that we know we need.

This doesn’t mean we are going to get everything we advocate for, But with enough thought, data collection and learning to understand what you can and cannot get, you can be surprised at what can go your way.

Understanding Your Energy Use

For the first several years of my illness, I still tried to push myself to do some of the things that I had done before the full onset of my symptoms. And while I did have some accomplishments, most of them put me in bed for days afterward. I realized that some of my issue was that I had no idea what I was capable of; I simply pushed through any pain and uncomfortable, thinking I it wouldn’t cause any repercussions. I was wrong.

Figuring out what I could and couldn’t do took a lot of time. And I’m still doing it, 7 years later. I had to start from the very beginning by giving myself time to do the bare minimum; work, food, hygiene and some cleaning of the house, and basic cooking. After awhile, I realized that I did have some energy for other things on certain days, so I started scheduling a little more on those days. But I still kept at least one day a week to do the bare minimum (and still do). By tuning into my body, I was able to better understand what energy I needed, where I could become more efficient and where I needed to spend more time. And I also figured out the warning signs of when I was about to put myself into a flare, which was crucial to understand.

Get your Medical Information Documented

This sounds like it’s a no-brainer, but I’m still surprised at how much I think I’ll remember about my medications, only to not be able to give that information to a healthcare professional when asked. I now carry a list of my meds in my bullet journal so that it can be pulled out when needed.

But medications aren’t the only medical information we should be tracking. If we can’t effectively communicate things like pain types and pain levels to healthcare professionals, we will never be able to allow them to help us properly. I will never forget the times when I worked in an ER triage and saw a nurse’s frustration at working with a pain patient. She she would ask how bad something hurt on a scale of 1 to 10, many patients would simply say 11. While that response gives adequate information about how upset the patient is at their own pain, it doesn’t do much to help someone understand what they are going through. A pain scale with descriptions can be very helpful in that situation, and can be printed out and kept with your list of medications. That way you can read the description along with the number, which allows more understanding about the state you are in.

Prepare to be Your Own Caregiver

I wish everyone who has chronic illness the best caregivers they can have. Really. Although I’m very lucky to have a good caregiver and can usually effectively communicate my needs to him, there are many times when the level of pain that I’m at doesn’t allow me to tell him what I need, or he’s in the middle of work or possibly not at home when I’m flaring. It’s in the cases where he’s not available or when I can’t tell him that I need something that I have to fight my body to get whatever it is that I need or want to be more comfortable. And I don’t wish that fight on anyone.

But, the fight to take care of yourself in flare ups does happen. And because it does, being prepared is huge. To get prepared, I thought about my last flare up and thought about what I used. I needed extra blankets and pillows, wanted a bag of popcorn for comfort, and wanted to watch some mindless TV shows. I now have extra blankets and pillows downstairs as well as up, have saved some seasons of shows for flares, and I also have a stash of medications near my bed with a bottle of water just in case I can’t make it downstairs. That way it won’t be so hard to fight to get the things I need should the hubby be away.

I know I’ve just scratched the surface here. There are many other things that you can do to make things easier on yourself when medical issues rear their ugly head, and my plan is to talk more about this soon. But I think the biggest thing that I want to get across, especially to those who may not feel like they have the support that they need, is to be that advocate for yourself. Know what your limits are. Have things written down and available in a purse or bag. Keep things ready when flareups strike. I know for many of us thinking of ourselves is hard to do, especially when we have jobs, families and homes to take care of. But we cannot take care of those things if we don’t put in the time to take care of ourselves first. And the sooner we learn this lesson, the sooner we can work to get back to some semblance of a normal life.

Have You Tried Turning It off and on Again?

Spring is finally started to come to Southeast Michigan, and with it, the expected fibromyalgia craziness.

First, mid-February’s snow storms brought pain due to humidity changes, but the solid week of snow after brought some relief. And just when my body thinks, ‘we are in the deep of winter and I’m good with this,’ the temperature rises again and all of the snow melts.

My body has now changed to the ‘what the heck?!?’ spring transitional mode early; this usually doesn’t happen until mid-March at least. These transitional periods mean that fibromyalgia symptoms can change daily. (And sometimes even hourly!)

Seven years after diagnosis, I feel like I should be ready for this. I should know that my body is going to do this until the temperature starts getting into the mid 50s on a regular basis, and I should plan my activity levels accordingly. But for all of my planning and scheming to take it easy on myself during these spring thaws, it seems something always gets thrown in that causes my plans to go out the window. This time, it’s crazy work hours, some mental health work and a low-grade infection (a UTI that I have antibiotics for because all of my tips and tricks to take care of it aren’t working anymore…if you want TMI…)

This past week, it all caught up to me. By Friday, I was part zombie, part comfort-food-carnivore; I was exhausted but would eat every bit of food you put in front of me. That evening, I didn’t just fall asleep; I passed out.

And I slept. And slept some more. 13 hours later, I finally woke up. And while I was no longer this zombie/carnivore hybrid thing, I still decided that everything that had been planned for the day was not gonna happen. Instead, I sat curled in my comfy chair watching my husband play video games the entire day until I passed out again.

And slept another 13 hours.

After the second sleeping session, I started feeling like myself again. I did a (modified) weekly run and continued to rest to shore up energy for the beginning of the work week. And looking back on things, I should have realized I was coming due for another fibromyalgia reset.

A fibro reset is exactly what it sounds like. Your body goes offline by sleeping deeply for 16-26 hours in order to reset your energy levels and mental capacity. I usually need one of these once every two months. But although I can tell when my body is starting to gear up for one, I don’t get to choose when the actual reset is going to happen. I’ll just wake up one day and either realize I’m still so exhausted I can’t get out of the bed (which is a majority of what my sick days are from), or I’ll be doing something and suddenly I can barely keep my eyes open.

I’ve found resets to be a lot like turning your computer off and on again. And it’s only until after the reset takes place that you realize how much things were starting to slip. You start to see the laundry piling up, tasks at work not being done completely, your diet and exercise regime going out the window, and other surprising things like a kitchen starting to look like the hubby created four different new recipes and none of them were ever cleaned up. And after you get over the shock of missing things, you can slowly start to pick up where you left off and get on with daily living.

I’ll admit, I’m not a fan of fibro resets because of their frustration factor. It seems like you just start getting into a new habit or routine when one happens, and it means you lose most of the momentum you’ve gained over the past two months. This is especially true with the diet and exercise. Even two days where you don’t keep moving or eating to your appropriate plan will take away months of work, making you feel like you are going backwards. Still, I can’t stop them from occurring. And I have tried everything I can think of to do so.

So thanks to the reset, I’m going to have to be spending this week figuring out what I’ve lost. So far, I think it’s just my stamina that has taken a big step back as I’m recognizing I’m pushing myself more to get normal chores and my exercise done. I’ve also noticed the daily stretches have become harder to do again, which makes me wonder if I need to bump back my stretching to easier exercises.

Yes, I know – To the average person, I’m sure it sounds like I’m being ridiculous. How could 48 hours of being out of commission cause anyone to lose strength, stamina or flexibility?

Welcome to the exasperation that is fibromyalgia.

The good news is that I had some good habits established before the reset. So that will help make up some ground. In the meantime, I’ll also do a quick revisit to my diet and exercise routines to see if they need an update, or if there is something that would work better for me. So at least the check-in actions will be something good that comes out of this.

Overall, I’m sure it’s a good thing to have a regular reset, much like resetting your computer or phone every now and then. At least on a computer or other electronic device, they function better (or at least more normal) after a reset is complete. If that was the case with a fibro reset, I’d be marking the calendar and counting the days toward the next one.

After this week’s check in, I’ll move forward again with modified plans, and see how far I can get toward my stamina and strength goals. I have to keep moving and stay positive about all of this. After all, gardening season is coming up and I have plans for my beautiful gardening space.

Fibromyalgia and Mental Health (Confession Time)

I’ve been wanting to do a post on mental health and fibromyalgia ever since I started this blog, but wasn’t sure where to start. I can say without a doubt now that there is a significant connection between the diseases, and that the one disease exacerbates the other. I don’t need to have any study to tell me that is true; just the past several years experience is enough to make me realize the connection.

Mental health has been an issue in my family. I can name multiple family members who have depression and anxiety that they have to deal with on a regular basis. I myself was hospitalized for major depression in 2002 (I told you this was confession time). However, prior to the full onset of Fibromyalgia, I was dealing with that depression very well through diet, exercise and positive coping mechanisms.

That all changed when the fibro hit.

I think the connection has a lot to do with the things you start thinking about when you have fibromyalgia; the ‘what ifs’ if you will. ‘What if what I’m doing right now is going to cause a flare up of pain?’ ‘What if this flare stops me from doing <fill in the blank>? ‘What if this flare stops me from going into work tomorrow?’ ‘ What if I get a flare up and can’t attend <insert event here>?’ ‘What if my friends get mad at me for constantly cancelling on them?’ ‘What if I can’t fulfill the tasks I volunteered for?’ These are all legitimate concerns that people with fibromyalgia have to consider.

And there are more, especially in today’s day and age where we have very few remedies open to us to help with flares. ‘What if my doctor stops giving me the low dose opioid that I take as a last resort?’ Or even, ‘What if my use of Cannabis to help my fibro gets me fired from work?’ (Yes, I live in a state that does have legal Medical Marijuana- but they also still allow people to be fired from work if they use it.)

When you suffer from fibromyalgia, ALL of these things are very possible situations you may face. You have to change your entire life to ensure that you remain as flare-free as possible. It can be done, but not without significant struggles and frustrations as the fibromyalgia flares come without warning, which makes trying to put together some semblance of a life even more precarious.

Have enough of those plausible ‘What ifs’ come in your head come true and the stressors of those situations become palpable. You will have flare ups of pain that make you take sick days, cancel plans with friends or even cancel chores you had scheduled around the house. Friends will get mad or frustrated, things you thought you could handle become overwhelming. And all of this does mess with your mental health. Even the mentally healthiest of individuals are going to start to buckle and start worrying.

And as those worries happen more and more, they turn into anxiety. Soon, you start having full blown panic attacks.

My first fibro-induced panic attack happened about 4 years ago. I did everything I could to push through it, and just keep moving. Since then, I’ve changed my supplement regime, added additional mindfulness practices, prayers, mantras, and used my German Shepherd Natasha as an emotional support animal. Those have all helped, but they are never enough.

Today, as I write this, I’m painfully reminded of how everything I do to prevent anxiety attacks is never enough. Here I am, typing out this post with another full blown panic attack brought on by a fibromyalgia flare. This flare was caused by a significant change in the weather here in the Midwest (a 20 degree increase in heat almost overnight,) and the possibility of a deep friendship with someone I cared about being torn apart because of unsolvable issues (another relationship that had some of it’s issues within the root cause of fibromyalgia).

I’m breathing deeply, made myself a drink (another last resort for me with panic attacks) and am sitting in front of the TV after working in the garden this afternoon, which also helped some. I’ll probably have to use some visualization and breathing techniques to get to sleep tonight, but I’m still pretty certain I can. If needed, I’ll ask the hubby to allow my dog on the bed for the night.

I will want to touch on this subject further, but probably won’t do it until I’m settled some. Until then, if you are reading this and going through any semblance of anxiety or depression over your Fibromyalgia, chronic disease or any other issue, just recognize you aren’t alone. I’m right in the same spot with you. And if I can breathe and push through just this one night of anxiety, you can too.

To be continued.

Things People With Fibro Don’t Want to Hear (And Some They Do).

Through the years I’ve heard a lot of people attempt to sympathize or relate to fibro sufferers when they are flaring. And while many of these sayings were spoken with good intentions, they end up hurting instead.

Remember, Fibromyalgia is an indeterminate diagnosis, so many people who have the disease have to fight to simply prove that they are disabled in the first place; many times even fighting their own thoughts because we have been so shamed about claiming a ‘fake’ illness.

So for this post, I want to list things I’ve heard over the years and why I don’t want to hear them. And I’ll add some encouraging things too, just to give some ideas of things that make me feel supported or loved.

“But you don’t look sick!”
Ahh, the classic saying that is not only said about Fibro, but also MCAS, POTS, EDS and many other illnesses. Just because I don’t look sick doesn’t mean that I’m not. And if this is meant as a compliment, it’s doing a pretty bad job of being one. Because what you are really saying is I’m doing a really good job hiding being sick.

The truth is that those of us who have these illnesses don’t want to have them.  We want to be able to do things we like and not need additional aids or help getting day to day tasks done.  But we can’t always be independent.  And saying we look like we should be just furthers the pain and frustration that we can hide very well that which makes us sick.

“Well, I have <fill in the blank>”
If you are trying to sympathize by sharing an illness you have, you aren’t doing a good job of sympathizing. The last two times I heard this statement, it was someone telling me they have arthritic hands, and the second was a headache (NOT a Migraine…a headache). I can, without a doubt, tell you that having a fibromyalgia flare up is worse than either of these two. When you can’t walk up the stairs, drive a car or barely turn a page in a book because your entire arm hurts, then we might be able to compare pain. Not to mention the fact that a fibromyalgia flare lasts much, much longer than a simple headache can.

“You know, many others feel the same way as you.”
This one really hurt, especially because it was someone that I looked up to at one time saying it. This person didn’t know anything about fibromyalgia, and my attempts to even explain it to them were useless.

But even though many people suffer from fibromyalgia, you cannot compare chronic pain with this disease. Let someone with fibromyalgia compare pain with another sufferer. Don’t throw everyone in the same boat. We all have different thresholds of pain levels, we all have different flare triggers, and different sites of pain.  Chronic pain is bad, but it is different in intensity as well as significantly different areas being targeted by pain.  A Chronic pain patient could have Chronic back pain, ankle pain, or arm pain.  In Fibromyalgia, the pain is constant, and it’s everywhere in your body.

Ultimately, everyone is unique, and everyone must be allowed to express their pain.  Trying to simply group fibro patients in with Chronic pain patients (or other maladies) doesn’t do any of us justice. Everyone isn’t me, and everyone isn’t having pain right now. Realize too, that this isn’t about feeling special. It’s about feeling heard and understood; something fibro sufferers rarely are.

“You are going through a flare? So this really hurts?” <Smacks my arm>
Yep! This happened. And by a family member. He wasn’t expecting me to break into tears after hitting me either. The lesson here – If a fibro sufferer says something hurts, DO NOT test that. I think it’s one of the absolute worst things you can do.

And just for the record, I did get him back a couple of months later – in the martial art I studied, I learned where some very  painful pressure points are. He got a nice (touch controlled) punch to a rib pressure point that took his breath away.

So instead of saying something above, how about saying one of these things, instead?

“I’m sorry you are hurting. Would <this> help?”
Just the acknowledgement from someone that they see me in pain is a comfort. Being willing to help with getting a door, finding a chair to sit in or a place to rest for a moment is huge. It doesn’t have to be much, but it makes us feel supported, which can actually help us relax and maybe even lessen the pain level slightly.

“That sounds brutal! Tell her I’m thinking about her.”
This was said by the same person that made the ‘others feel the same way’ comment above. The context was my husband telling the person that I would not make an engagement because I was in so much pain. The person recognized I was in pain and using the term ‘brutal’ in his response actually meant a lot because they validated that I really WAS in that large amount of pain and had no chance of making the event.

“I am glad to see you/thank you for coming out”
Many times fibro sufferers can’t make events or engagements because of the pain levels. We aren’t trying to simply cancel all the time, we just don’t know what our pain levels are going to be like. Sometimes the fact that we made it at all is astonishing. So if we made the effort, it might because we are pushing through just to see you. Too many people take it for granted that someone with fibro can just go anywhere. That isn’t always the case.

Overall, just recognizing that yes, fibromyalgia IS a disease and causes widespread pain and that we who have it CAN be disabled is huge. Keep that in mind when you are talking to someone with the disease, and you can help us feel supported and not feel like so much a burden.

Cleaning with Fibromyalgia: Tips and Tricks

After talking about how my husband and I continue to adapt to our ever changing schedules and to the fibromyalgia, I thought I’d also share some of the tricks that I’ve figured out over the years to help keep things clean and comfortable in our home.

Don’t look for perfection
This one is hard for me. I admit my obsessive compulsive tendencies make things even more frustrating at times on this issue. If I happen to walk into the house after a hard days work and feel litter under my bare feet, or happen to catch a whiff of a litter box I can go a little crazy. But I have to come to the realization that our house is not dangerous, bacteria isn’t growing in places it shouldn’t be. Our kitchen stays clean and every room is tidy. If people came over unexpectedly (except for Grandma of course), I can be OK with it now.

Write out a Plan where everyone gets a part
Now that he’s back in the office, my husband has a list of chores, and so do I. I do mine immediately after I get home from work so that they are done quickly and I can rest without worrying about more I have to do that night. My husband does his chores in the early morning before I get up, so we aren’t in each other’s way while we are cleaning. I also picked specific chores for him that I wouldn’t mind how he did them. That settled some of my OCD, and allowed him to feel less like he has someone watching exactly how he does something ready to criticize his every move. I also took on chores that I was having a problem with him doing. It meant taking on more strenuous tasks, but I chose that so that I would feel better overall about how the task was done (there will be no litter on the floor if it’s the last thing I do!!)

Allow the Plan to go out the Window
Even though you spent a significant amount of time in this plan and organized everything, expect there to be days when you just can’t get to everything. You come home, and you have NO energy to do anything but rest, and that is OK. Perhaps the vacuuming gets skipped a week, or the dust starts to get a little thick on the shelves. Make sure the basics are taken care of (dishes, clothes for work, you stay as clean as possible) and leave it for the night. There will come a day when you feel good enough to pick up the chore again.

Put a cleaning station on every floor, and in all the bathrooms
A canister of cleanup wipes can go anywhere. I especially have them in every bathroom in our house. If I’m feeling OK in the morning, I’ll pull one out and wipe the sink after I finish getting ready for work. Toilet bowl cleaner and a brush by every toilet helps as well (I don’t do automatics because I’m afraid an animal will drink the water and get sick). You don’t have to scrub with most toilet bowl cleaners. You simply just leave it covering the bowl for 10-15 minutes and most stains will come right out.

Most of the litter boxes in our home are on the second floor, but I used to keep all of the cleaning products just in the kitchen, which forced me to go up and down the stairs, which caused significant pain on flare up days. Now, I have small boxes of trash bags next to each litter box in the house, along with carpet sprays, paper towels and bleach spray. This allows the litter boxes and any sick-ups or other messes to be cleaned up quickly. And having the trash bag means it is very easy to take it out to the bin outside instead of leaving the resulting smelly mess in the main garbage until that became full.

I didn’t stop there with the cleaning stations. I also now have a vacuum on each floor of my home. Now while this sounds like an expensive tip, it doesn’t have to be. The vacuum upstairs is a refurbished model and it works just as well as the one downstairs. But now I don’t have to hike one upstairs every time I vacuum.

Get the extra help from buying the better products
I just purchased a new floor cleaner from Bissell. It has the spinning mop heads. Now instead of getting on my hands and knees to clean up my kitchen and dining room floor, I can easily get out this gadget and let the spinning mop heads clean the hard floors for me. It saves me significant amounts of time as well as energy, since all I have to do is move the cleaner around on the floor.

I also do my best to use the vacuum cleaner on the hard floors instead of manually sweeping with a broom. It may not work as perfectly well as a broom, but it gets my nemesis-cat-litter off the floor so I don’t feel it underfoot, and that is all that matters.

For years I also refused to purchase the swifter dusters. Why spend extra money on a gadget when dusting spray and a cloth would do the same thing? That might be fine, but when you have fibromyalgia, you have to find easier ways of doing things. I purchased my first swiffer duster about two months ago and I am very happy I did. What once took me a half hour is much faster now, especially because it dusts around the few Knickknacks that keep out.

Figure out what you can live without doing
As much as I loved the feeling of the house after spring cleaning was completed, I no longer plan the extravagant spring cleaning weekends that I used to. Last year all of my closets got the spring cleaning treatment. Two years ago it was a complete and total wipe down of the kitchen. This year, spring cleaning has moved into summer and (maybe even) fall cleaning, with the kitchen, basement and garage again on the cleaning hit list. It’s all going to depend on how I feel.

When it comes to fibromyalgia, you have to let how you feel dictate what you are going to do that day. But that doesn’t mean you can’t figure out ways to get what you really want done. It takes a lot of trial and error, and maybe a little bit of leeway about what doesn’t have to be perfect. And even though it’s a lot of work, and there are still days I have to push myself, I’m still pretty proud of how my home looks.

Cleaning with Fibromyalgia

When my husband and I were dating, we lived in separate states. The first time I decided to come visit him for the weekend, he was so excited he told his father, his brother and his sister. Their first question to him after they heard the news was, “Are you going to clean your house?”

I love my husband, but yes, he has some…bachelor tendencies.

A year later, when I moved states to move in with him, I immediately put us both on a cleaning schedule of the house. Yes, I admit it. I have OCD tendencies. And we had three cats at the time. So I wanted to make sure that we had a clean enough house that should family or friends stop by, they wouldn’t be bombarded with a smell of cat that would chase them out of the house.

Two more cats and a dog later, we live in a house twice the size of the original one, and I had the same OCD tendencies about cleaning it. Carpets were shampooed quarterly. Vacuuming was done weekly. Spring cleaning meant every room gets cleaned top to bottom, moving all furniture and cleaning everything in sight. Yes, that included the basement and garage.

Then the fibro hit, and that all went out the window.

I learned pretty quickly I had one of two choices; let my husband handle the cleaning and accept however he did it as good enough, or beat the crap out of myself to get it done how I wanted it to look, on top of still trying to do the work and my heavy workouts.

The fact that my husband secured a job he could do from his home office helped solidify the decision. But I have to say, letting things go was NOT easy. Many times there were nights I’d be upset about how something was done around the house. Sometimes it was the OCD talking, sometimes it was my fibromyalgia frustration coming out, and sometimes it was because the way he cleaned something really wasn’t the best way to clean it in the first place. But I have to give my husband credit; he supported me through it.

There was a lot of talking. Finally new chore lists were made of what needed to be done daily, weekly and monthly. If I had the energy that night after work I was expected to help (and I did my best to do so). Spring cleaning like I had done before was no more. Instead, a room or two each year that needed it the worst was done in its place. The garage became ‘his’ domain, and was cleaned every couple years. The fridge, cleaned when things were past their date (we dated and labeled EVERYTHING that went in the fridge to help with that).

After the first arrangement I remember having flare ups of pain and laying on the couch watching him clean. I truly tried to ignore every time he did something ‘his way’ instead of what I thought was the ‘right’ way. It got easier over time to do, but I must admit there were times when it was very frustrating.

But I learned, and the house was always presentable enough for friends and family to stop by (well, maybe not as presentable enough for my grandmother to stop in, but that was an entirely too high a level to attain without my help.)

Now things are changing again as my husband went back to the office this year to work. We are still working out chores, and I’m learning once again that if I want something to be done the way I think it should be, I have to be the one to do it. It’s not his fault if it isn’t done the way I do it. And although we still have more talking to do, I think we will make it work.

Find Your Pace

About a year and a half into my diagnosis, a well wisher sent me a picture of a woman doing a yoga posture. It was a forearm balance, a variation of Feathered Peacock Pose. The yogi in the pose had fibromyalgia, and she made this pose look effortless. My well wishing friend was basically saying that if this woman could do this pose, that I could too, even with the Fibro.

At this point I wasn’t giving up on doing the same things I did before the diagnosis yet. I pushed the hell out of my body to try to continue to attend Tae Kwon Do and Hap Ki Do classes and keep up with the rest of the students. And I was still pushing through 40 hours of work, yoga and running when I could. So saying my body hated me at that point was an understatement; I hurt like hell every single day, but I refused to let up.

To make matters worse, I had gone several rounds with different medications to try to get the pain under control. I had gained 40 pounds at that point thanks to the side effects of those medications. And at this point, additional problems were already starting to kick in, problems like IBS, depression and anxiety.

So I see this picture, and recognize I’m nowhere NEAR the level of yoga that this yogi could do. And the icing on the cake… the description said she was a mother, and in her leggings and top, she looked like she had a body to kill for.

The only thing this picture did for me was make me realize I wasn’t there. I wasn’t at a level of perfection that I wanted for my body. I didn’t have that strong of arms, I couldn’t lose any weight (and seemed to be gaining pounds by the second) and there was absolutely no way I could look that good in the body I had. So how the BLOODY HELL could this woman do it and still have fibromyalgia??!? And how the hell could she make it work when I was busting my ass and only injuring myself further?!

The depression finally kicked in pretty damn heavy when I finally came to the conclusion that no matter how much I tried, no matter how many times I counted calories, pushed my body through exercise or did anything to try to change my body, it wasn’t going to budge. The Fibro had dashed any hope of me having a body I loved; dashed hopes of my obtaining a black belt in either martial art, and it dashed any hope of doing yoga poses like that.

And it was my fault. At least that is how I felt at the time.

Now, I know a little better, or at least I hope I do. Perhaps my body is just very different than hers, and we probably have very similar limits on our energy; but just choose to spend that energy differently. Perhaps she is a full time mother, and does yoga on a regular basis. I split my energy up into working out of an office, chores at home, running, martial arts drills and yoga when I have the time and energy for it.

Part of me wants to do the comparison in my head. ‘Well, I bet she can’t run a 5K nonstop.’ Or ‘maybe she has never thrown a kick in her life, where I still can.’ And perhaps I’ll never get over wanting to do those comparisons. But in some ways, they are true. As a Fibro and CFS sufferer, you only get so much energy in the day. I spend it getting my husband out the door, caring for five cats and a dog, doing Pilates and making sure I get that 5K run in any chance I can get. She has different priorities, and thus spends her time doing yoga and caring for children.

I really try hard to keep that thought in mind when I do see someone who looks like they are handling their diseases a lot better than I am. I still consider myself to be in a bit of a learning phase with this disease. I’m trying to find my own pace, whether it is running, or figuring out what I can do after I get home from work. Sometimes I astonish myself. Other times, I make myself some sort of ‘nest’ where I can hide and rest for the evening because I just did too much.

And while I’m at it, the energy limits don’t just stop at physical ones. You have to find your pace when it comes to emotional energy, too. If you have a seriously stressful day at the office, you may not be able to get that extra cleaning in at home because you are just too mentally tired. Or you just can’t handle a commitment you had made previously and have to cancel. It happens.

What matters is that you do your best to find your pace, and keep it as well as you can. And after time, you will know your limits well enough to better understand when you are about to go over them. It’s all about taking the time to take care of yourself, which is the most important thing you can do.

Looking Disabled

Me, finishing my very first half marathon on Belle Isle in Detroit.

Still trying to be an athlete, the year of my diagnosis I ran two half marathons. The last one I pushed the hell out of myself to get it done in less than three hours.

And boy did it cost me.

I spent the rest of the day (and the day after) barely moving and using my cane heavily. And even though I had expected to be in a lot of pain and barely moving, there were still things that needed to be done. So my husband and I went out to do errands the second day after the marathon.

I decided to wear my half marathon shirt that I was so proud of, but again relied heavily on my cane. The looks I got in the stores were priceless, especially because the shirt had the date of the half marathon printed right on it.

I’m sure many of the people were simply thinking I was a volunteer and not a participant. Perhaps they made up some story in their mind about how I was someone who suffered a catastrophic joint injury and could never run again, but would still support the running community. I even had a well-wisher ask about how the race went. And when that happened, my biggest fear started going through my mind; that they would think I was a drama seeker, and the cane was somehow my choice for a drama seeking at that very moment.

Fibromyalgia is tough in that you really don’t know when those flares will hit. Sure, you can start recognizing patterns to plan for bad days; but trying to predict every single trigger is something that is just too much to attempt. That means there may be days when you are back to activities that were pre-fibro and feel great, and in the next day (or even in the next hour!) you feel like crap because you just pushed a little too much. And out comes the cane, the wheelchair or electric cart through the grocery store to get your groceries for the week. Or you ask someone else to get you home because the pain won’t let you drive or walk anymore.

Often we see stories on social media about someone who is told they ‘don’t look’ sick; so they shouldn’t have a cane, a disability sticker, shouldn’t take a certain parking spot, etc. And ultimately, it turns out that person had cancer, MS, or some other determinate diagnosis that clearly shows that yes, they deserve those tools because YES, THEY ARE SICK.

With an indeterminate diagnosis like Fibromyalgia, we don’t have the luxury of a black and white test to say whether or not we suffer from this disease. And to many, hearing someone say they have fibro is akin to someone trying to get out of something claiming they have a physical ailment; it’s an excuse to be lazy, dramatic or to just get attention.

Now I know I probably shouldn’t worry about what others think and say to me. And I also know I need to make sure I do whatever I can to ensure and safeguard my ability to get around and get things done. But at the same time, I worry about the perception. And some of the reason is because I’ve seen people who truly don’t have a reason to utilize an accessibility device use one anyway. It reminds me a lot of the debate of a service animal vs an emotional support animal; one is something that someone truly needs to get around and be independent as possible. The other is simply something that someone feels like they need to have around, no matter how ludicrous it looks. But just like there are now considerations of new rules to say what can and cannot be a support animal, I cannot help but wonder if there will ever be situations where I will be denied tools to help me move around because I don’t look sick, or can’t claim a determinate diagnosis is the cause of my sickness.

In a world that is becoming more and more fueled by perceptions and not by facts, I feel like things are stacked against me and people like me. We do everything we can to keep moving, keep ‘carrying our own weight’ so to speak, and to try to claim some semblance of the lives we once had prior to the fibromyalgia and other problems taking over. But even if we do our best, we will never be the same as we were before the sickness started. We will have to rely on canes, walkers and wheelchairs. We may have to end up with a disability sticker on our car, or expect others to drive us around because we are too fogged up and in pain to safely get someplace. And ultimately, we may have to feel the sting of someone looking at us to say ‘You don’t LOOK sick!’

I’ll fully admit, I don’t know the full answer to this question. Perhaps there isn’t a ‘one size fits all’ answer, and I just have to find my way as I go. Perhaps I’ll never be able to fully convince someone else that yes, I DO have a sickness that I need that mobility aid for, even though they’ve seen me run a 5K, do an advanced yoga pose, or just saw me post about my home gardens I tend in the spring, summer and fall Or even worse, what if that person is a coworker, watching me on a weekend walk around with in pain using a cane but they see me I zoom around my place of employment like I have no pain workdays? (They also don’t see the immediate fall onto the couch position I take when I get home because I’m so exhausted from keeping up the facade)?

With all of these things in my head, I do have some personal measures that I take regarding those aids. Perhaps I do have the goal of not attracting attention, perhaps it is partially pride. But my personal measure is that I do not rely on any aid unless it’s absolutely a necessity. I don’t walk with a cane just in case I need it; if you see me with a cane, it’s because I am doing bad enough that day that I cannot walk without it. If I am not driving, it’s because the pain is high enough that I don’t think I can drive safely. If I have a brace on a joint, or have my arthritic gloves on it’s because I’m already experiencing pain and I’m using the braces to soothe and comfort the affected area.

Simply put, the tools to help me cope come out only when I need them. They are never out as a precaution. Further, if I feel like I may need a coping tool because I expect my pain is going to be too high at a function, I’m going to consider not going to the function instead of simply going without the tool in question. Taking care of myself has got to be first and foremost in my mind, as no one else knows what I truly need and what my limits are. And part of taking care of myself is also determining when I can be strong and when I can be weak, and when I will be weak but still comfortable enough to use a mobility aid.

Someone may look at this and say that I’m waiting too long to pull out a mobility aid or brace, but I disagree. Pulling out the tool when I absolutely need it means that if there is push back regarding my use of the tool, I feel more comfortable being assertive when I push right back on that person. And using these tools sparingly to me means I’m not looking for drama or sympathy. I am simply getting done what needs to be done, and using the tools at my disposal in order to do so. To me, it’s the healthiest strategy for using mobility aids and braces that I’ve put together. And it works for me.

The Many Different Symptoms of Fibromyalgia

A current list of Fibromyalgia symptoms from the Fibromyalgia Support Facebook Page

When I was first diagnosed with fibromyalgia, there were some lists of symptoms that were going around on Facebook. I took a look at them, and honestly didn’t believe that these lists of symptom after symptom could be attributed to fibromyalgia.

Boy, was I wrong.

In the many years since, I have learned the hard way that fibromyalgia can exacerbate and cause other conditions. Many of the conditions that I have now do come from the list above. Previously, I would frequently push back on the idea that the fibromyalgia somehow caused me to have yet another symptom or disease. But after so many years of having problem after problem, I can’t deny anymore that fibro can cause other problems.

Now when I’ve started studying about these other symptoms, I found it hard to get additional information or actual, definitive answers regarding whether or not the issue is truly caused by the fibro itself, or just happens to show up because some of the root causes that caused the fibro in the first place also caused these other symptoms. I’ve seen evidence in both myself and in the little bit of research that I’ve done to support both conclusions.

The overall conclusion that I can draw is that somehow the body becomes continuously overloaded due to day to day stressors and other inputs, which causes the hypersensitivity, adrenal fatigue and other issues, which leads to the diagnosis of Fibromyalgia. Then the underlying issues that cause the fibro, or the fibro itself, causes the other problems listed above. There can be other culprits other than internal issue, like chemical sensitivity causing an autoimmune response, but many of the chemicals in the environment haven’t been studied for this issue yet. (Chemical sensitivity is something else I also dismissed previously. Yet now I’m wondering – especially with the current PFAS issue here in the state of Michigan).

Supporting my conclusion above, there are some physician-agreed upon known causes of fibromyalgia that could also cause the above symptoms. Hypo/hyperthyroidism could cause things like feeling hot or cold often; swelling of extremities, fatigue and cold hands and feet. Colitis and celiac disease could cause cravings, fatigue, dryness of eyes or mouth and recurrent flu-like illnesses. Even being intolerant to soy, corn and other foods could exacerbate fibromyalgia symptoms and possibly cause a full onset of the disease.

All of this is very frustrating, and I can’t help but wonder if the term ‘fibromyalgia’ has become more of an umbrella term/syndrome diagnosis to use when patients have test after test and physicians cannot find anything else wrong with them. It is my hope that a fibromyalgia diagnosis is not becoming a ‘one size fits all’ syndrome diagnosis. We sufferers have enough problems finding the root cause of our symptoms. Throwing others in there that ‘might’ have fibromyalgia but don’t know for certain means that multiple diseases could exist under the diagnosis. And if each disease needs different treatment, how is someone who was diagnosed with fibro expect to figure out what treatment is right for them?

Luckily there is information out there regarding the holistic treatment of fibromyalgia as a syndrome. Dr. Jacob Teitelbaum is a physician who has studied chronic fatigue syndrome and fibromyalgia extensively. He has written several books about it and also runs a website called vitality 101. While his books do sound a little bit like a salesman trying to sell you on the next great treatment, there is scientific information to back up his claims. His authenticity as an expert was also verified by my primary care physician, who suggested his work to me in the first place. The vitality 101 website does contain a quiz that someone suffering with fibromyalgia could take and determine what possible supplements could help alleviate the symptoms of that person’s unique fibromyalgia issues. The supplements could be purchased from Dr. Teitelbaum’s site, or can easily be found in grocery stores like Meijer or Kroger here in the Midwest. Much of the information that I have in this post has come from Dr. Teitelbaum’s books or from my primary care physician.

Personally, I don’t trust that many pharmaceutical companies or medical facilities are doing enough to find a true cause and cure for fibromyalgia and chronic fatigue. There is simply too many divided opinions on the disease for there to be many good breakthroughs, at least for now. That is one reason why I have decided to take matters into my own hands and do research on my own into what others have done to control their symptoms. It is also something I encourage anyone who has a chronic condition to do. No one is going to be able to be the strongest advocate for your health except you. And the sooner you can start looking into your personal symptoms and what you can do about them, the sooner you may be able to find some sort of relief.

Leave My Diet Alone!

From time to time I will probably end up coming onto this blog to rant.

This is one of those times.

One of the things that I also hear a lot as a fibromyalgia sufferer is suggestions about my diet, and how if I just removed “X” from my diet, I’d feel so much better. Now most of the people that give this advice are truly well-wishing, and not snake-oil salesmen like I recently blogged about. They truly want to see me feel better, and I appreciate that.

However, many times, the ‘guilt trip’ that comes along with the suggestion is not something that helps, and is not appreciated.

I already do eat healthy enough. But I still allow things in my diet that others would say they are bad. I love chocolate. I drink occasionally, usually wine, and I enjoy having a glass or two with dinner sometimes. And I also do not go to the movie theater to watch a movie without getting at least a small bag of my beloved popcorn.

I am gluten free due to a diagnosis of Celiac disease, and see enough variance in the celiac community to know that everyone has their own version of what is and isn’t the best diet to follow. The problem occurs when those dieting beliefs conflict. And while it seems the gluten free community is more spirited when it comes to debating the best way to go gluten free, I have found the same occasional spirited debate about Fibromyalgia diets. And as different and newer diets come out, I’ve seen more suggestions tossed my way in an effort to spread the best ways to become as pain free as possible. And well meaning as they are, many of these diets that are suggested are still new enough that we don’t know for absolute certain if they will work.

My most recent suggestion came from a well meaning counselor who also deals with fibromyalgia. Her diet is one that excludes all forms of highly processed or added sugar. Now while I am certain this works wonders for her, and even after significant amounts of assurances that ‘it gets easier’ and ‘you will forget what it tastes like’, there is no way in hell I’m going there.

Giving up sugar means giving up brownies. It means giving up doughnuts, M&Ms and Snickers bars. It means checking every label of every premade mix on earth, finding added sugar in some form on the ingredient list, and putting it back on the shelf. It means going to every party or engagement for the rest of your life and treating it like a minefield of delicious temptation that you may or may not get out of unscathed. And yes, even though this works wonderfully for this counselor, and I’m very happy for her to have less pain, there is no immediate evidence that giving up sugar will help the pain of every fibromyalgia sufferer, so I will hold onto my sugar consumption with my sugary, sweet, sticky hands until the day I die.

Another diet I’ve been told will do wonders is the FODMAP diet. And I’ll admit, I’ve gone on this one sometimes when IBS issues start really affecting my activity levels. But the thought of going on FODMAP for the rest of my life to ensure my fibromyalgia pain stays low permanently fills me with dread. No more rice? No more cheeses, Brussels sprouts or baked goods, watermelon in the summer time or mushrooms? That is just plain nuts (some of which I couldn’t have either).

Now some of you might be reading this wondering why I won’t do EVERYTHING I can to keep my fibromyalgia pain low. And the answer is I do. I exercise, limit my caloric intake, eat low carb on a regular basis, stay gluten free and don’t eat too many things that don’t have at least some sort of nutritional value. The fact is, going sugar free, doing FODMAP, Whole 30, paleo or any other omission diet will not drop the pain levels for everyone. And there will still be flareups, especially when you accidentally go off the diet.

Doing an omission diet is not a cure. Instead, it’s really a trade-off. It’s a chance at having less pain in exchange for not eating those wonderful things that make life a little easier from time to time. That chance is something some Fibro sufferers want to take. And if it works for them, awesome! It isn’t worth it to me as I’m already doing a significant amount to lower my pain now without adding more restrictions in my diet.

So as long as I do my best to listen to my body and what it does and doesn’t want, I’ll still have an M&M snack (especially on high pain days). I’ll stop and pick up a fast-food custard as a treat after a long day of errand running, or do a Saturday morning adventure with my husband to find freshly made gluten-free doughnuts. I’ll do those things because they are worth it to me for the treat itself, the company and as a reward for keeping moving.

And if my body ever changes to the point where those things do hurt me on a regular basis, then I’ll have to revisit the idea of omitting more from my diet. But for now, I enjoy them while I can, and you can keep your FODMAP, Sugar Free, Paleo, Keto, cardboard-tasting stuff.