The Plan to Reengage with the World

With a snap of the fingers (and new CDC guidelines), for those who have been vaccinated, the pandemic seems to be over.

Yesterday, it was publicized that about 62% of the American population have received at least one vaccine. And with President Biden wanting that number to be at 70% by July 4, the world is going to open up pretty fast. That fact, along with the decision of my company waiting until after Labor Day to have us resume on-site work, has me thinking about this oncoming summer of change and what its going to mean for my day to day routine.

Part of me wants to do the same thing I see many others on my feed do; immediately embark on a plan to lose the Covid weight, install healthy habits over the ones that I got into during the pandemic, and be able to walk into my office in September stronger and more sure of myself than ever before. And overall, that is what I’m considering doing.

But I’m going to do it on MY terms, and not based on the pie-in-the-sky goals of what most media fitness junkies want you to strive for. And don’t get me started on the photoshopped-bombshell pictures of what society thinks a healthy, athletic person should look like. I need to think logically, because trying to do it any other way would only exacerbate the chronic illnesses that I’m doing my damndest to live with.

So what is the “right” way to make change?

I think where many of us get into trouble is that they feel like they are starting from a place where they dislike everything about themselves. They hate what their body looks like, and are constantly reminded of what it can’t do. They hate the habits in their life that have made the situations that they are now in, and they want to change everything, and do it NOW. I’m not going to say that doesn’t work, but it definitely is a path that won’t work for me anymore. The last time I tried that plan of action was when I trained for my last half marathon, and ended up losing almost a week of work due to the fact that I had trained myself right into a serious fibromyalgia flare.

We also have to look at our environment. This pandemic has caused trauma to many, many people, and it still continues to do so. We have to be gentle with ourselves so that trauma can start to show itself and begin to heal. Throwing a brand new diet and exercise regimen into the mix isn’t always the best thing when you still may be eating for comfort, or needing to give yourself even more mental rest to be able to get through the work day, deal with familial issues or the political craziness that still plagues the United States. .

With all of that in mind, my suggestion is not going to be to start with the end in mind. Instead, try to simply start with small things that can be done now. In my case, I’ve still been counting calorie on most days, and I have a good idea of how much calorie I eat each day. So my first challenge is going to be to drop that daily range by 100-200 calories. It won’t be much to lose weight, but it’s something to get me in the habit of thinking about what I eat. My second challenge is to add extra activity to my day. It might be walking on the treadmill for 30 minutes, taking my dog out for a walk, or doing more yoga, but whatever I do, am going to do at least one of these each day. And I’m not going to do them to the point where I’m pushing myself; if it means that I’m doing 30 minutes of chair yoga because my legs hurt too much, it’s still yoga, and it still counts. (I also have a plan for 30 minutes of yoga in bed in case I really have a bad flare, just to keep going on my commitment.)

The Next Steps

After about three weeks of cutting a little bit of what I eat and adding some activity, I will then consider to decide what I want to accomplish. Do I want to focus on weight loss, running outside or doing races again? Maybe I just want to work on core strength, or standing endurance for when I get back into the office and start to have those hallway ‘meetings’ when I get asked questions as I’m moving from place to place? Whatever it will be, I want to make those decisions based on how I feel and what I think I can do, not what I feel like I’m expected to do.

Setting small daily goals first is to allow myself to get some confidence that I can attain the larger ones with proper planning and work. And not only will I feel more confident, the two steps I outlined above will start me mentally thinking about the very things that will help me move toward loftier goals with simple tweaking. Sure, I’m not going to be one of those ‘before and after 90-day success stories’, but I’m not willing to beat the shit out of myself to become one of those stories. That’s one of the main reasons why I have the chronic illness in the first place; I pushed my body again and again to be stronger, faster, leaner and endure more, and all I did was create an environment for breaking myself.

Failure is an Option

Things happen, and there will be days when I don’t meat the two goals that I have set out for myself so far. But I’m not going to sweat it. Especially because of the chronic illness, I have to let my body lead here, not my head or what I think I ‘should’ be doing. There may be days where the weather means I have more pain. And while I have that bed yoga routine at the ready, there is a possibility that I may not even have the strength for it.

The other issue is that we aren’t all out of this pandemic, either, and there will still be stressors when dealing with Covid deniers, or those still polarized about the election. Believe it or not, both still exist. In fact, I just had one show up at my house to do some maintenance! I had no idea he was a Covid denier until halfway into the task, he asked my husband what he did for a living, and when my husband mentioned he worked at the hospital, he went on a rant about Covid and false case numbers! Needless to say, I had a drink that night, which put me over my suggested calorie limit for the day, but I didn’t sweat that too much.

Accepting that there will be times that we fail in our goals is not allowing failure to automatically occur. Instead, it’s the first start in not beating yourself up when it does happen (and it will). We are human, and we will fail, as we are not infallible. If we were, we wouldn’t be on this planet in the first place.

In those cases, you have to tell yourself that you will do better the next day, and then work to do so. By doing this, you may find that in the end you will actually have less failure overall, because instead of spending the energy to beat yourself up, you are using that energy to do better.

So those are my thoughts and plans on moving forward through the summer. I don’t have any grandiose plans of trying to run a half marathon or compete in sparring at summer’s end, but I do think that I’m on my way to being just a little bit healthier, mentally and physically, which will serve me well once I get back to the office. And not only has my documenting the plans here forced me to make a public accounting of what it is I want to do (I said it, now I have to do it!) I hope that it allows someone else with chronic illness recognize that they also can do more than they think they are capable of. It just needs to be done in small steps, and sometimes without the main goal in mind.

Living with Fibro: Exercise

Since I am currently altering my own exercise routine, I thought it might be a good time to talk a bit about exercising with fibromyalgia. I’m dedicating a post to exercise because it is very important that people with fibromyalgia move every day in some shape or fashion. If we don’t move, even for a day or two, our muscles will start to feel thick and gummy. Go three or more days without movement and our muscles will feel rigid to the point where we lose range of motion and strength, which leads to an increase in pain. Yes, it is a true ‘use it or lose it’ scenario.

Endurance and Current Fitness Levels

Before I talk about my own routine, I want to say that the level of exercise that I strive for is my choice. Before the fibromyalgia, I was an athlete. I did martial arts, I was a runner and a dedicated yogi. Therefore I believe that because I had a high level of fitness back then, I can maintain a higher level of exercise than others with fibromyalgia. It isn’t that someone who has fibro cannot get to the same level of fitness I have, I’m simply saying the ‘route’ to get here and their overall exercise regimen would be significantly different than mine.

Regardless of the level of fitness I have, I still have to be choosy about what types of exercise I’m doing, thanks to fibromyalgia’s limit on my endurance levels. Running is currently my choice for what I burn the most energy on. I love being able to run a 5K, and I’m not ready to give that up. So I’ve accepted the fact that I have chosen running as my main exercise, for now. I can’t do that and do other extended work in another sport. That means advanced yoga asanas like handstands, extended strength training sessions, or any type of martial arts practice are all out unless I stop running. I am trying to build additional endurance so I can do more, but so far, I’m not having much luck.

I am bringing the endurance issue up to remind non-sufferers that people who have fibromyalgia have a very specific level of energy and endurance they can use each day. It doesn’t matter what fitness level you are at; you still have to choose what you spend that energy on. I choose to use my energy by doing more exercise (as I have no kids and a desk job), another fibro sufferer may have to use their energy in a work position where they must be more active, drive a longer commute distance, or tend to young children. I am absolutely certain that every fibro sufferer wants to do more than they currently are, we just can’t because we are limited by the disease.

My Current Exercise Routine

My current schedule is a 5K run on the weekends, usually on Sundays as I don’t have much else going on during those days and can sit for most of the day afterward. I also try to walk at least 30 minutes 4 times a week. This isn’t a fast walk, just something that can keep my heart rate up for a general period of time. I do 30 minutes on an elliptical machine once a week, and a 15 minute routine with a strength training system called TRX once a week on a day I’m walking. All of that together means I’m exercising 6 days a week. If I don’t make 6 days of exercise, I don’t beat myself up. It is all dependent on how my body is feeling, and I’d rather err on the side of caution than cause a flareup of pain. It took me 3 months of work to get this current level of exercise into my regimen and not cause a flare. And it still isn’t without a tradeoff. About 6 or 7 in the evening on most days, I’m done. Other than crocheting, watching TV or reading, I can’t do any other activity. So the husband gets to cook, drive us someplace if we have something scheduled, or do any necessary cleaning. He’s OK with that (so far).

Currently, my own personal goals are to try to extend the 5K into a 4 mile run and include an extra 20 minute martial art practice into my regimen. That isn’t going too well. On weeks where I’m feeling awesome, I can get the martial art practice in, but not the extra running. But I’m still going to continue to try for another month or two. Regardless of what high impact work I’m doing, for those few moments, I feel like an athlete again, and that means a great deal to me.

My Exercise Recommendations for Fibro Sufferers – Bare Minimum

For the average person with fibromyalgia/CFS who doesn’t have any other underlying conditions, I highly recommend at the bare minimum some sort of stretching routine to keep the range of motion that you currently have. If you haven’t been doing anything, it’s going to be hard to get started, and I’m not going to lie, it will hurt worse for the first week or two, but the extra pain that you will receive from the exercise will be the type of pain can be dulled by icing, over the counter pain relievers or with muscle ointments. And even with the extra pain, to me it’s worth it. I’ve found that even 4 minutes of gentle stretching a day will allow you to start feeling more comfortable overall, and possibly reduce the amount of daily pain.

I do have some suggestions for starting out. I personally like Joe Yoon’s Better Stretching as a starter book as the exercises are very easy, yet effective. He also has a great Instagram presence and demonstrates many of the moves in the book there (or you can buy his application Better Stretching if you want a more structured regimen). Other options include Miranda Esmonde-White’s Essentrics program, which was created out of the “Classical Stretch” TV Program on PBS (which I believe is still available at some libraries). She also has written a book called Forever Painless, which is a good introduction to both Essentrics and the TV program, however, if you choose the online Essentrics program or TV show to try first, realize it moves faster than Joe’s videos do.

Of course, this being the beginning of the new year, many people are seeing advertisements for dynamic stretching programs like Pvolve, Kalisa Fit, GMB Fitness, ALO/Barre Strong and Functional Patterns. Pvolve, GMB, ALO and Functional Patterns require extra equipment, so those are a ‘no’ for me, as I’m not going to make an investment in equipment if I don’t know up front whether a program can be adapted for a fibromyalgia sufferer. Kalisa Fit is nice, but even I had a struggle just getting through her 10 minute warmup. I also didn’t see any way to modify some of the moves, so although the stretching exercises were very good, I could see someone getting discouraged very quickly (especially with some of the leg and hip stretches that could hyper extend the knees or cause significant weight on the joint).

Yoga is also another option, but it is very hard to find any yoga apps that show modifications of poses, which is a huge need in the fibromyalgia community. We just can’t make our poses look like the ones portrayed by teachers and social media personalities and we shouldn’t try. But there are some options out there that I think are good. If you are brand new, I suggest starting with the book Yoga for Pain Relief by Kelly McGonigal. Yes, the poses look very simple, but they are all very effective when done regularly. Or, find a yoga teacher who works with chronic pain sufferers and who will help modify the poses for you. I will say it again as it was a sticking point for me at first – yes, the poses with modifications may look over-simplified compared to what you would see a more experienced practitioner do. (In fact, my own mother refuses to do yoga because she doesn’t think simplified poses like cat/cow do anything.) But they are still very effective at providing the same type of benefit as the ‘professional’ looking pose, and this is a fact I really wish the yogic community would express more often.

My Exercise Recommendations – Moving Forward

A stretching routine will ensure you keep your range of motion and lower your pain regimen. However, I did notice an increase in my endurance and energy by adding a gentle, low impact exercise like walking to my exercise regime. This is why I also recommend starting some sort of small exercise habit if at all possible.

If you want to start a walking regimen, besides getting a good shoe, I would recommend starting slowly; maybe 15-20 minutes three times a day. You don’t have to power walk to get started. Even walking your dog (which is what I do three out of 4 times I’m walking a week) is beneficial. And the dog will love it.

If you are ready to add more time, the general rule of thumb I’ve heard is to add 10% more time or mileage to your walking regime each week. I personally feel for those of us with fibromyalgia, that’s too much. Instead, I recommend adding 5% more time or mileage every 2 to 3 weeks. Anything more than that will cause additional stress and pain which will force you to do too much in one day, and that leaves an opening for a huge flareup of pain. I learned this ratio by my own trial and error; I trained for a half marathon using the 10% method and ended up losing the entire last week of training as well as ended up being sick from a flare of pain for an additional week. So I changed to the 5% addition and have found that it works well for both my running and walking routines.

I recognize that this can be looked at as circular reasoning; here I am suggesting something that will cause extra pain for a fibromyalgia sufferer in order to reduce the pain. This is what doctors don’t realize when they recommend fibromyalgia sufferers exercise. There WILL be pain. It WILL hurt. And if I may be blunt, it fucking sucks that it hurts so much. I simply want to be able to move and do the things I love without the pain. But for fibro sufferers it’s a trade off. If you want to do more, you have to find that balance of how much pain you are willing to put up with in order to get to the chosen level of activity. If there is one thing about this disease that hurts the worst (and the one I’ve cried about the most), it’s this fact.

Regardless of my own personal goals and venting, my hope is that readers of this post realize that it only takes a little bit of exercise will go a long way to helping sufferers deal with the disease. And since there is no cost effective drug, medical device or therapy that can take out this disease, finding any little bit of comfort to me is worth trying.

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.

Fibromyalgia: The Indeterminate Diagnosis

It’s interesting to see how simple I thought things were with my own diagnosis of Fibromyalgia, all those years ago. I remember thinking, now that I have my diagnosis, I just had to figure out what the heck I could do to get my life back together again.

My first few months with the diagnosis had brought me very few days of relief from the pain of that very first full flareup. Even with the medications that my doctor had given me and the list of supplements that I had found myself, it seemed nothing helped ease the flare ups once I was in one. And what was worse, I was missing significant training time and backsliding on much of the work that I had achieved over years leading up to the diagnosis as an athlete. I didn’t know what was worse; the side effects of the medications, or the fact that I couldn’t just get back to the all important-to-me athletic training. But I soon found out that it was neither of these two things.

Fibromyalgia is what is called an indeterminate diagnosis. That means there is no real clear medical test to accurately classify who does and who does not have the disease. This means many people with the disease may actually have something else wrong, but because the medical tests don’t show anything else wrong, they are handed the fibro diagnosis. It becomes the catch-all diagnosis for everything unexplainable that has body-wide pain. And while one doctor may be accepting of having a fibromyalgia diagnosis, others look at it as a fake disease created to simply allow someone to get more attention from the medical community, from family or friends, or even just to get more pain pills.

I’m starting to believe that when you are given a diagnosis that is indeterminate it’s sometimes worse. These diagnoses seem cause a lot more pain and frustration. With something like fibromyalgia, it’s very easy for another doctor, coworker or someone on the street to say that you are faking your illness, which isn’t true if you say you have something that is determinate, like cancer. I still get embarrassed at times when I have to tell someone I have fibro. As the words come out of my mouth, my mind starts wandering. ‘What if they don’t believe me?’ ‘What if they come out and say they don’t believe me?’ ‘Do they think I’m faking right now, holding my cane and leaning heavily on it as I speak?’ ‘Maybe they think I’m a pill popper, trying to get more opioids to be high’ ‘Maybe they think I am just someone so full of drama I just want all the attention and that is why I say I have fibromyalgia.’ I’m 99% sure that everyone who first gets this diagnosis has these types of situations happen, and the very same ‘what if’s’ game playing in their head. Unfortunately, that doesn’t get much better. I still hear those thoughts in my head even years later.

In some ways, I think if I had a determinate diagnosis – something that a positive medical test can give a clear clarification as to whether or not you have a disease – it would be easier. There are many times in the middle of a flareup of pain that I would even wish for that determinate diagnosis, no matter how bad it was. Anything but fibromyalgia. I don’t care if it’s cancer, or something just as horrible. I don’t care if it’s something that I will sooner or later die from. Just not fibromyalgia. Just not a disease that I have to explain in detail to almost everyone and get “those” looks as I explain. Perhaps a determinate diagnosis would give me so much more peace of mind. I wouldn’t be questioning myself after hearing yet again from someone that this diagnosis is “All in my head.” Perhaps I wouldn’t be questioning my sanity so much as the pain levels rise in my body.

The fact that so many people get lumped in with fibromyalgia makes things even harder for those studying the disease to try to come up with a root cause and that long-desired cure. There are already many causes to this disease. Mine has multiple root causes – one happens to be congenital, a second is significant stressors on my body, and a third is adrenal issues. Someone else could have simply had a serious allergic reaction to cause the fibro or another person could have had an operation where fibro was the result. And still someone else could have simply been involved in a significant accident that brought on the fibro (Morgan Freeman has fibro because of an auto accident).

The fact that there are so many root causes means what works for one person isn’t going to work for another. Cymbalta, a selective serotonin and norepinephrine reputake inhibitor (SSNRI) is a drug that is approved for fibromyalgia pain. It did nothing for me, except to make me gain 30 pounds that I’m still struggling to get off. Many others say Lyrica, also known as pregabalin, has taken all of their pain away. But again, it did nothing for me but cause significant side effects. The list of pills and remedies people use for Fibromyalgia is staggering. It’s so bad that I know fibro sufferers that greet someone else with the diagnosis with the question, “So what are you on?”

Unfortunately many of us handed this diagnosis don’t have much to go on when it comes to why we got it. There isn’t a path that is set in stone that we can walk. Instead, we have to find our own way through this crazy diagnosis and how we can personally find relief. We have to be our own health advocate. And while that sounds scary, there are great first steps that can be taken to get started. Keep a pain diary that includes what medications have been taken for pain and for the disease in general. Look for connections with other diagnoses that have been received in the past. Take stock of how much stress is going on and see if it can be reduced in some way. All of these things take time to find the meaningful information, but I firmly believe the information becomes more and more valuable the longer it’s tracked.

There may never be a clear test to give an accurate diagnosis. And there may also never be a cure for this horrible atrocity of a disease. But I can’t give up hope, and I’m going to do my damnedest to keep taking care of myself to make this disease as manageable as possible.

Attitude is Important

If you join an online support group for any autoimmune disease, you may be put off by the amount of frustration, anger and pain that get expressed. It is easy to assume that the group is full of drama, because all anyone ever talks about is pain. But unfortunately for those of us with autoimmune diseases, our life IS pain. It is a very rare occurrence for me to not have some sort of pain in my body every day, and it’s the same for anyone who has Fibro or an autoimmune disease.

To people who are reading that may not suffer from something like this, think about having the beginnings of a bad flu; your bones ache and you are exhausted. You might have a headache or your neck and throat hurt. Now think about having that every single day for a month. To those of us with fibro; what I just described could be a GOOD day. Days with a full fibromyalgia flare up are significantly worse!

Now thinking with that analogy in mind, I bet you can see why support groups tend to become places with post after post about pain, frustration and anger.

For some people, an online support group may be the only place they can talk about how the Fibro affects them. Perhaps their loved ones have finally told them not to complain anymore because they are tired of hearing it (yes, it happens). Or perhaps they don’t have any other support network around them that they can rely on, so the online support group may be their only outlet. Or they may be like me – they have expressed their frustrations so much to their loved ones that they are afraid that they are upsetting them, so they come to the online support group to vent.

Whatever the reason, we HAVE to get out how we feel. It’s healthy to do so. It makes us feel better to know someone is listening, even if it’s just a Facebook reaction to our post. Remember, we are not just talking about the occasional pain from working out too much, bumping an elbow against a shelf and getting a bruise or something like that. If I listened to someone without any pain-related disease complain regularly about every bump and bruise, yeah, I’d probably be one of the first to dismiss those complaints. But unfortunately, Fibromyalgia and autoimmune diseases are an entirely different animal to deal with. And they HURT.

With that being said, I believe it is also important to try to stay positive overall about the disease. Studies have shown time and time again that being positive will help someone get through suffering easier. And you don’t have to be the most positive person in the world in order to reap those benefits. Yes, there will be days when it is just impossible to even consider being positive about the pain levels. On those days where all you can do is lay on the couch or bed, supported by pillows and barely able to move, positivity is going to go right out the window. And that is fine.

But even on those days when the pain is the worst, I focus on some specific and positive things that do help me get through. I remember that I have the strength and courage to accept that the day is a wash and do everything I can to make myself feel better; even if that means laying in bed for hours, staring at a TV screen binge watching a TV series, or even eating popcorn, potato chips or ice cream (as much as within reason as possible of course…but even sometimes reason goes out the window when pain levels are high). I pull out heating pads, books, remote controls and anything else that I need within reach, and that is where I will camp out for the rest of the day.

But the most important thing I remember is that there will be a tomorrow. I WILL feel differently, thanks to giving myself some needed rest, and I will be able to do something different – even if it’s just to take a shower. I know I have the strength and courage to try again, and I will make some sort of progress beyond camping out at the campsite of the previous day, even if it is simply a shower and cleaning up my space.

I sometimes wish that there would be fibromyalgia support groups that are there to talk about the positivity more than the pain, as it’s so hard to have a positive attitude when all you hear is the negative stuff and can sympathize with it. Trying to stay positive is part of my personal treatment plan for this disease. So even if it means I have to stop back from a support group for awhile, I do it. Because ultimately I feel better when I am positive, and taking care of myself has to come first. Then, when I’ve built up some equanimity, I’ll continue to try to support others the best I can.

Having Fibromyalgia Is…

Hanging out with my dog Natasha during a recent fibromyalgia flare

It’s one thing to say, “I have Fibromyalgia.” It’s a total other thing to actually know what fibro sufferers go through day in and day out. With that in mind, I thought I would share some daily struggles and extra things I have to do in order to get through the day.

Having Fibromyalgia is having a cane in every floor of your home and in your car because you don’t know when the pain will make you have to use it.

Having Fibromyalgia is one day being able to help your family clean the house and the next morning not even being able to lift clean clothes to fold them.

Having Fibromyalgia is going into work full of pain but doing your best to mask it at work so not to draw attention to yourself.

Having Fibromyalgia is having long discussions with my husband to determine whether or not the flare up of pain is bad enough to take the heavy pain medication I get from my doctor. These discussions include several points: How many I’ve taken for the month; How many other pain meds I’ve taken that day and what else I’ve done to try to stop the pain before I go to the big last resort; And whether or not I’ll go over the allotment that the doctor allows me to have each month. (And to answer that question, my doctor allows me to have ten hydrocodone tablets per month.)

Having Fibromyalgia is being at work and typing one sentence too many on a keyboard and having your hands cramp up so badly you can’t even hold a phone.

Having Fibromyalgia is not allowing your cat to walk on your legs because it hurts too much.

Having Fibromyalgia is watching your husband walk your dog without you because the pain in your legs is so severe that you can’t stand or walk very far distances.

Having Fibromyalgia is not allowing your husband to turn on the ceiling fan or open a window because the airflow hurts your skin.

Having Fibromyalgia means not being able to travel in a car long distances without needing multiple days to recover.

Having Fibromyalgia is having your legs, feet, arms and hands go numb on a whim.

Having Fibromyalgia is doing your best to avoid the freezer or refrigerated aisles of a grocery store because the change in temperature hurts.

Having Fibromyalgia is learning how it feels to have pain just breathing.

Having Fibromyalgia is having brain fog so bad you can’t remember names of people or specific words long enough to have coherent conversations with anyone.

Every one of these have happened to me this past week as I continue to battle a Fibro flare up, thanks to the up and down weather here in the Midwest. I’ll do what I can to rest tonight. And tomorrow, pain or no pain, I’m going to get up, find comfortable clothes to wear to work, and see how productive I can be.

The Diagnosis

I remember exactly where I was when the first real fibromyalgia flare hit me. I remember everything I was doing, the time of day, the urgent doctor appointments to get testing done, and most of all I remember the frustration and the roller coaster of hope and devastation as the weeks went on before and just after my diagnosis.

It was an early morning on a weekday in January of 2014 when I first felt the pain. Back then I did company-wide documentation training; a task I had volunteered to do on top of my already busy position. The office campus I worked on had three buildings, the furthest being a quarter of a mile apart. And it was significantly blow freezing outside… we are talking negative 20 degrees Fahrenheit. But me, being the ‘tough’ woman I was, decided to walk to the furthest building anyway to deliver my classroom training, and walk back.

Sure, I had pain regularly before, but I had never thought that it was something like fibromyalgia.  I had just assumed that pain was normal because I was such an active person.  But I think that very cold walk was what lit the match, so to speak.  My body said ‘no more’, and gave me my first all-out fibro flare. About 20 minutes after I got back to my desk, every bone in my body started to ache at once. Every muscle felt weak; like I was going to fall out of my chair because I didn’t have the strength to stay in it. I couldn’t tell if it hurt worse sitting or standing. It hurt to breathe, something I had never encountered before. And it was all so very scary. After several hours without this pain letting up, I was in tears to my husband on the phone about the pain, and I left work early for the first of many doctor appointments.

I fully admit; I had a bit of luck on my side when it came to my actual diagnosis.  Not only is my primary care physician someone who doesn’t mind me doing my outside research. He also happens to be a osteopath and acupuncturist. So when medical test after test came back in the clear, he wasn’t afraid to talk about the possibility that what I had was fibromyalgia. And after his own research was done and when there were no other tests that he could run, that was the diagnosis I was given.

Calls to extended family for support were made; as well as reaching out on Facebook to find other people with this diagnosis. I didn’t know much at first, but I knew I had to find information on how to live with this and quickly. I wasn’t about to give up everything that I had been doing in my life just because I had this disease. I was not about to let a little thing like fibromyalgia ruin my athletic image and all the work I had done to obtain it..

In between tests and calls and doctor appointments, I continued to plan (and expected myself) to keep up the same activity level I had pre-onset. Before that first flare, I was working out for almost two hours daily. I was training for a marathon, studied two different martial arts as well as yoga, and was just starting to look into triathlons and how to train for them. My thought was that I could drop an extra day or two of rest into my regimen and drop to an hour of training on the workout days. (Yeah, that didn’t work.)

I was struggling to put the pieces back together, I finally did get full confirmation that fibromyalgia and chronic fatigue syndrome were exactly what I had. Two weeks after calling my parents with my possible diagnosis, my father told me he knew he had fibromyalgia for years. And I also found several cousins who have it on the maternal side of my family. So much for knowing all of my extended family’s medical history! But even though it was a surprise, it was also a comfort. I wasn’t (totally) out of my mind. Diseases can be congenital, and on my next appointment to the doctor, he fully agreed once he heard the news about the new tidbits of family medical history I had. Fibromyalgia it was.

So armed with the official diagnosis, new Facebook friends, the social media support group and web pages full of details, I started scheming and plotting to get my life back in some semblance of order and strive to finish that black belt, run that (now half) marathon, and stay on top of everything else I had moving.  Of course, it didn’t go very well.  But I think my mindset had to change before I could move much further.  This diagnosis is a steep one, and I didn’t treat it that way at first.  Now I know how hard it is to deal with.  Now I know once you are diagnosed with fibromyalgia and CFS, you need to take the time to sit with and accept the fact that your life is about to change.  Perhaps in certain ways I’m still trying to accept this even now, five years later.

I think, especially with a diagnosis like this, you have to give yourself that time to reflect, understand, and accept that life is going to change.  It won’t be the way you think it will be, but it can still have great moments of happiness and peace.  And it’s perfectly fine if you don’t feel that right away.  You need to do what you have to in order to move forward, and take all the time you need to do so.

I still struggle, but looking back, I have come very far in my understanding of what I now can and cannot do.  It’s still hard, but I learn more about myself every day, and am looking forward to finding out what physical goals I CAN achieve.

The Journey Begins

Hi there!

Welcome to Living a Fibro Life.

This is my second attempt at a blog to log my fibromyalgia. The first one, “A Girl Fighting Fibro,” went down a couple years ago due to multiple reasons, one being the fact that I didn’t know what the hell I was doing trying to fight Fibro in the first place, so my posts really didn’t have much substance.

Now, things are a little different. I think I’m figuring it out, at least little by little. I have more wins, but I also have more loses. But this time those losses are becoming things I can learn from and not be totally devastated by.

I’m moving forward, and I’m feeling stronger, and I think I have more to say. At the very least, my hope is that I’ll provide a space for other people to understand that although it feels like a horrible fight, and it presents lots problems, it can be managed. And maybe, just maybe, something I say here will help someone else not feel so alone, or have hope that they too can move forward. Perhaps someone may even come forward with an idea that I hadn’t thought about before, and I can learn how to better manage this diagnosis.

Either way, welcome again. I’m looking forward to seeing what comes out in this adventure.