The Myth of Not Doing Enough for your Health

At the end of May I started a new yoga program that encompasses workouts for everyone from beginners to advanced practitioners. The program has a community on Facebook that many people use for questions, support and to show off their transformations after using the program for a long period of time.

But the types of posts I see the most are people who talk about how ashamed they are for something. Either they confess the sin of not eating ‘right’, or they haven’t worked out in awhile, or didn’t do as well as they wanted to, and on and on. And every time I see one of those posts I want to just to comment…

“STOP IT!!!”

We are taught at an early age that there are only ‘bad’ things, and ‘good’ things. If we aren’t one, then we are the other. And the health and wellness industry has made millions off this fact. We are made to feel horrible that we don’t live up to the photoshopped pictures that show us perfect images of health and fitness that looks nothing like what exists in real life. Slogans convey the intent that if you only did ‘A’ or ‘B’, you’d look just like them. (Of course, either option means paying through the nose for gym memberships, fitness equipment, personal trainers and anything else they can think of for the up-sell.)

Having any sort of chronic mental or physical illness just amplifies how horrible we are made to feel if we can’t do everything that we are told to do in order to get healthy. We are the ones that need aid the most, and yet, most of the things that we are told to do are things that are just too hard to start all at once, making us feel even more broken even if we try.

I’m not saying there isn’t work involved in getting and staying healthy. There is work involved to create positive change in life, and once you start that work, it’s a struggle to keep going until better habits are created. But just like the image of optimum health looks different for everyone, our starting points are also going to look different. I can’t count the number of times I’ve started something only realize it’s too much on my body and I end up in bed for almost a week.

But that is not my failing. That is life.

If things were perfect, those of us who really want to try and change would each be given use of a personal life coach and trainer to work with us to understand our strengths and weaknesses, and work on a personal step by step plan to get us healthy. And every time we lost a couple days because something else got in the way, we would simply take stock of where we were with the help of that trainer, and start moving forward again. And the trainer would tell us plainly, it wouldn’t be starting over by any stretch of the imagination, like many of the posters in my yoga facebook community say it is. It’s simply working through an issue and continuing what was started.

But, we don’t live in a perfect world. We are left to our own devices, and left to fend for ourselves, with many like me feeling even more horribly about themselves than they already do because we can’t do any of the workouts or dietary habits that we are asked to do. It truly pisses me off.

If I could, I would reply to all of the people that talk about ‘falling off the wagon’ or saying how horrible they feel because they weren’t able to keep moving forward in the program at the pace that was laid out for them. I’d tell them that they are already doing so very much more for themselves by just starting the process. I’d tell them what amazing wonderful people they are for even starting. I’d tell them how strong they are for trying to find a way to make themselves healthier. I’d tell them how proud I am of them for even trying to start what looks like a very long and hard journey.

And, I’d also tell them they need to find their own way. It may mean only doing one workout a week, only cutting out certain foods and leaving their comfort foods, or something else. Whatever it is that gives internal strength and confidence to the person trying to change their life, that is all that matters. Because only that will be the key in making changes for the better.

There is a lot of health and wellness sayings out there that I think are total crap. But there are some that are worth keeping in mind. A saying that I think is worth keeping around is this; “Either you say you can, or you say you can’t. Either way, you’re right.” Diamond Dallas Page says this during his workouts, and it’s a good thing to keep in mind, especially for those with chronic illness. I firmly believe we have more control over our lives than we think. It takes time to figure out where and how, but with work and time we can find the strength and better health we strive for.

The Aftermath: What I Need to Remember

Last night’s post was rough. I’m sure it was uncomfortable to read, and perhaps many people didn’t even get through it. I certainly cringed when I reread it this morning, and not just at my bad grammar. But as uncomfortable as it was, I needed to write it. I needed to try to take others to that place fibromyalgia sufferers sit in when we have these intense flareups. I needed someone else to see what it is I go through, regardless of how dramatic it looked.

Humans naturally shy away from things that are uncomfortable. Our immediate reaction is to try and fix it. We don’t want to be made to sit with things that can’t be fixed. But that is the issue. With fibromyalgia, this uncomfortable area of feeling broken and not being able to fix ourselves is where we often are. Another pain flare up just brings another day where we reach for help with no end or cure in immediate sight. And with reaching for that help, we bring on another series of thoughts in our head about how yet again we are this unpredictable burden to everyone around us.

I’ve been wanting to write another post about last night’s pain all day. I wanted it to be hopeful. I wanted it to soothe the minds of those who read last night’s post and just left the page not knowing what to think. I wanted to write a post to reach out to my friends on Facebook who saw the initial one just to say, “HEY! I’m OK now! Sorry for ranting and being such a burden and drama queen!”

But things aren’t better. I need to be ok with what I said last night (bad grammar and all) and accept that even though there is a part of me scheming to get some sort of yoga, a walk or any other physical activity in my life today, it ain’t going to happen. And there is a solid possibility that it ain’t going to happen tomorrow, either.

Life is pain. Anyone who says differently is selling something. Fibro sufferers know this better than most.

My burden took me to my knees last night. It had me mentally screaming in agony, and I seriously thought that this time, I’d be crushed by the pain I was carrying. But I did wake up this morning. I made it through a hard night, just like I made it through the last time I thought I would be crushed.

Yes, humans have this flaw that we don’t want to see the uncomfortable again and again. But we also have the amazing ability of being resilient in both body and spirit. And that is something those of us with fibromyalgia need to keep reminding ourselves of. We are stronger than we look, stronger than we feel. And just when we think we are broken from pain, we will still wake up the next morning.

Don’t get me wrong. I’m not saying one day we will wake up and the pain will be gone. It certainly isn’t gone for me, regardless of how little I’ve done today and how much I stayed down. But my pain burden is easier for having done so. And maybe tomorrow morning it will be a even better. I’m trusting my strength right now. I’m trusting that intuitively I know what is best for my body, and relying on that strength to do the things I really don’t want to do right now, which is to keep my ass in a chair or in my bed, regardless of what my head is saying.

What I’m doing today is just another facet of being your own advocate. Yes, there will be times when you feel like the pain will just never stop, and all you want to do is things that will help you cope right now because the pain is so bad you can’t think about anything else. And in those moments, we have to give ourselves the right to scream, cuss, cry, eat and do anything we can to cope. But the moment will pass. And when it does, and the pain starts to subside, we have the resilience to pick up the pieces and begin again.

Tonight, I’m not certain if I will find myself in the ‘beginning again’ part, or the ‘scream, cuss and cry’ part. But this time I promise not to write another badly edited post about it. Instead, should it get that bad, I’ll ask for help, again. And tomorrow will be another day of seeing how I feel, and doing my best to actively deal with it. So far I’ve got a 100% track record of making it through crap I didn’t think I could. I like my odds.

What We Need You To Know

I wake up every morning in pain. However, today’s pain seemed to be especially bad; probably because of the cold front that came through and the fact that I dared to work in my garden pulling weeds the day before. My fingers were stuck in a curled position that made turning off my alarm an interesting experience. In bracing for getting up, I took in a deep breath, and quickly regretted it as my chest muscles decided to protest the extensive quantity air in my lungs.

I knew from that point on, it was going to be a bad pain day.

After mentally cheering myself on to put my feet on the floor and stand, I finally was able to feel some of that pain subside as I headed for the bathroom to wash up. I remember being grateful that I had no face-to-face meetings scheduled for the day, so that meant comfortable clothing and no makeup would be acceptable. Running a brush through my hair as many times as I could withstand the pain from holding my arm up above my shoulder completed my fashion choices for the day,

Work and movement was at a bare minimum today. And the same rest-as-much-as-possible schedule will probably be the theme for the next day or two while I figure out what crime I have committed against my muscles for them to behave this way. I must have done something horrible, because even though I did the best I could to calm this flare down, pain levels have escalated to the point where Im uncertain if I will get a decent sleep tonight.

If it sounds like I’m whining, I’m not. If you read this and think I’m simply trying to get attention, I can assure you that isn’t the case, either. What I am trying to say is that fibromyalgia is a beast that no one but the sufferer truly understands. This beast not only screws with every system in your body, but it also exacerbates any condition that you ever suffered. Pull a muscle? Fibromyalgia will include lots of extra pain along with that muscle’s recovery. Attempt to do something out of your normal routine? There’s a flare for that too. Hell, I’ve had flareups of pain from a hard sneeze before.

The most serious, most important point I’m trying to make here is that someone diagnosed with fibromyalgia will always be in some sort of pain. And I mean ALWAYS. That pain will alway try to break down your spirit, your will, and your self worth very quickly. And those breakdowns happen quickly, especially when that pain impedes day to day tasks, like it did today for me. Listen – this pain is real, and the pain can be very dangerous to those of us with histories of anxiety and depression.

Tonight, I’m very lucky to know I have a support network that I can lean on (and I just did). But there are quite a few people out there that may not have that network. Instead, they may have people around them that don’t think they have the disease, are faking it, or are just thinking that they are blowing their pain out of proportion. Trust me, they aren’t.

There is a reason why there is a high rate of suicide within groups of people with fibromyalgia. I will say it from experience. This pain CAN get to be too much, and when that happens, there is no way out from thinking things are so bad that you would do anything to just end the pain. Trust me on this one; It’s very, very hard to stop yourself from thinking that way when every shallow breath you dare to take makes your ribs feel like they are on fire..

So just do me a favor. If you know someone with fibromyalgia, check on them a little more often. If they start speaking to you about their pain, hold space for them. And by holding space, I don’t mean to try to explain how your pain is just as extreme as theirs. Just listen to them. Help them feel heard and understood. Let them know that you recognize the severity of the pain and of the situation they are in. Maybe even help to get them comfortable by bringing them food or getting them to a place where they can rest. These can be truly lifesavers to someone with fibromyalgia.

Tonight, with the prayers and thoughts of my support network, I will rest with my pillows and blankets I crocheted just for this particular situation. I recognize that my spirit is starting to bend from the weight of this pain, so I’ve called in extra support, and I’m going to do all I can tonight to feel better.

But regardless of how much I hurt, I wanted to speak these truths about the pain. Not just for me, to hold space for myself, but for others who have friends and family who don’t really understand what its like to have fibromyalgia. And if this post reaches one person and makes them think about this disease in a new light, well, it will be worth the pain on my arms, hands and fingers to type it out.

Thanks for reading this far. Now go hold space for a friend with a chronic illness.

Living with Fibro: Sleep

It occurred to me that when people ask what fibromyalgia is like, the answers that they receive can be very general, pending on how the person afflicted with the disease is feeling that day. That person may or may not start to detail the challenges that we face on a daily basis. So because of this, I’d like to start 2021 out with a series of blog posts that describe how a typical day in the life of a fibromyalgia/CFS sufferer would look. In this first post, I’d like to discuss what a typical night of sleep is for me, as well as talk about how it is for me to get up in the morning. When reading, keep in mind that although my story is typical, it is not going to be exactly the same for all fibro sufferers, especially those who have additional fibro symptoms or other illnesses to contend with on top of the fibromyalgia.

Prepping for Bed
I know it sounds funny, but yes, I do ‘prep’ for bed. Depending on whether or not the fibromyalgia is flaring, and what the time of year it is, I have several go-to pajamas I can use. I have joggers (sweat pants with elastic cuffs at the ankles), and 3 nightgowns that I either wear with or without the joggers. All of the items are the softest ones that I can find, with the gowns being various sizes so that if I have tactile issues, I can pick one that is more fitted so that I’m not dealing with a wrinkle that wakes me up in the middle of the night.

Having multiple pillows and blankets are a must. Right now I get by with having 2 full size pillows and three smaller ones. The larger are for my head and in case I need to have pillows between my knees while laying on my side, and the smaller ones are to ‘brace’ my body should I have to deal with extra pressure from the mattress on one of my joints. I usually start the night using only one or two pillows, but may end up using more should a sharp pain in a joint jolts me awake.

Finally, I have a variety of foam earplugs in my bedside drawer. the slightest noise from my husband or the dog will also wake me up, so the earplugs are a must. Unfortunately I can’t use them all the time as my ears get sore from them, but when I can use them, they are a Godsend.

Sleeping Through the Night
The nights go one of three ways: Either I sleep like a log, I toss and turn the entire night, or it’s a combination of the two. If I’m sleeping like a log, it means that I probably took some pain medication in order to allow my body to sleep. And while I prefer to sleep deeply like this, it also has it’s consequences (as you will see later).

At least one night a week I toss and turn the entire night, regardless of whether or not I have taken medication. It’s these nights that are the hardest, because it could be caused by a multitude of reasons. I do toss and turn for some general reasons, like stuff going on in my head, being sick, dealing with allergies, having a flare or the hubby needing to get up or change positions. However, thanks to fibromyalgia, I can also toss and turn for some really crazy reasons. It could be because the fitted sheet isn’t properly on the mattress, and I’m laying on a wrinkle from the sheet or my pajamas. Last night, there were even wrinkles on the sheet that was laying on top of my feet and legs, and the skin in those areas started to hurt. I’ve been jolted awake by my legs and arms going to sleep, even though I was sleeping on my back with my arms at my sides. I’ve also been jolted awake because of the elastic in my underwear has become uncomfortable. Other reasons I could wake up include a new pressure point from my fingers, hips, knees and feet laying a certain way. I could even start to have a flare up due to my body being too cold or hot, or because of a weather change. Regardless of the reason, during these these nights I usually only get 3 or 4 hours of sleep.

A majority of nights are mixed. The first 3-4 hours are where I’ll sleep like the dead. Then something will wake me up, and then I’m tossing and turning for the rest of the night. To deal with this tossing and turning, I have 5 different medications at my bedside along with some water. Sometimes I can take a medication and go back to bed, but if there are times when multiple issues are keeping me awake, I have to choose the worst offender and take the medication for that since some of these meds interact and make one or the other ineffective.

Mornings
Mornings are the times when I see the most difference in myself from when I didn’t have fibromyalgia and now. The biggest difference is that every day is much more of a struggle to get up than it used to be. If I have slept very deeply, I will wake up and not be in pain for the first moment or two upon waking. But the minute I move, the pain becomes excruciating. Every joint, bone and muscle scream at me all at once because I dare trying to wake them from such a deep sleep. The more I toss and turn at night, the less excruciating the pain will be when I wake up. Yes, you read that right, and the issue is very common in fibromyalgia sufferers. The reason it hurts worse when I’m in a deep sleep is that my muscles stay in one position for a prolonged period of time. The longer they stay immobile, the harder it is to move them out of that position. This is one reason why shavasana (the ending corpse pose in yoga) is so hard to get out of after a longer yoga session.

After some of the first pain of the morning subsides and I have gained some movement, I face the trickiest part of the morning, which is taking off the blankets, standing and walking the first few steps. I try to be gentle with myself while I do this piece, but I must confess that it’s a fight each and every morning with myself due to the pain, because it’s multiple types of pain all at once. The difference in temperature from the removal of covers causes tactile pain, the swinging my legs off the side of the bed hurts my muscles and joints, and finally putting weight on my feet makes me feel like they ‘scream’ as they start to bear weight, and it makes it hard not to cuss for those first several steps.

This wave of morning pain will last about 10 minutes. Sometimes it’s longer should the weather be really cold, or if the ceiling fan in my bedroom is on. It is because of this last round of morning pain that I no longer schedule any exercise in the mornings. I also find that having to do any immediate decision making (like picking out clothes) or putting together any collection of items that I need for the day is incredibly difficult. So I try to get all of that done the night before if at all possible. I also don’t allow my husband to attempt to wake me anymore. Even though he means well, I’m afraid I’ll simply scream and cuss at him, and he doesn’t deserve that treatment, regardless of how much pain I’m in.

So that is as far as I want to discuss for this post. I hope that there will be those that read it and realize that there truly is a difference between fibromyalgia and someone with the occasional pain. One of the things that bothers me a great deal is someone without fibromyalgia trying to compare my pain with their arthritic hands, bum knee or the pain they still have from an old joint injury. They are not one and the same. Everything I’ve written about up here is something I have to prepare and deal with almost every damn day. I’m not saying your pain isn’t something that needs to be considered, but ultimately, this disease is so much more complex than people realize, and your bum knee or your old injury doesn’t compare.

For those reading this who don’t have the disease, I think the best advice I can give to you when dealing with a fibro sufferer is to give them space to talk about their pain. Don’t compare it with your own, simply listen to them and ask them what they need. Ask them if you can help. Just because we may look like we are feeling OK doesn’t mean that we truly are. And even if we don’t need the help at the time, we will feel we are being heard and supported – something most fibro sufferers desperately need.

Thanks for reading.

New Year, New “Resolution”

I hate the concept of a New Year’s Resolution. For years I faithfully made them in an effort to be better than what I was the previous year. But while the idea of a ‘new start’ is a good one, marketing tactics and low self worth can blow the concept out of proportion; making you feel like you are ridiculously fat, lazy and stupid (sometimes all three at once) which makes you give into the product du jour that will help you “live your best life.”

Now, my personal self worth is much higher than it was during my years of countless resolutions. However, I’m still not one who is inclined to try to change my personal habits during this time of year. Winter is hard enough on someone with chronic illness and pain. Instead of trying a new routine, I need to spend my energy trying to get the daily work and chores done, then spend what little is left seeking out warmth and rest.

At least, that is what I used to do in a normal winter. This one, feels like I will need to do more than that to ensure I don’t fall back into what I can only call the despair of the past summer.

But I don’t know if I want to call my new tactics a resolution. I simply have realized this past year that I am still not taking care of myself the way I need to. Now that isn’t to say that I haven’t been doing a decent job trying. I have been, but I wouldn’t be honest with myself if I didn’t say that with my current self care tools, I barely got through this past summer. And since some of the stressors summer are still in place, I need to find better ways to handle things. And I think I might have stumbled on something that would help.

This past week in the mornings, I started to ask myself a question. The question was, ‘What could my body and state of mind accomplish for the day?’ Sometimes the answer was that I could complete everything on my mental to do list. Other days, I couldn’t do as much. But either way, the question was really forcing me to focus on my own personal needs. And focusing more on my own personal needs may be a game changer when dealing with the rest of this winter.

Thinking logically, it makes perfect sense. Someone with a chronic illness has limited physical and mental energy, and I have to ensure that every last bit of it is utilized effectively, and is used in my best interest. The former, I do very well. The latter, not so much. Yet thinking about my own best interest is in some ways more important than what I can get done during the day. Thinking about myself means I will be healthier overall, where as a completed to do list coming at the expense of no mental energy means I’m more susceptible to panic attacks and depression. Sure, I have medications for the anxiety and depression that I could rely on, but one thing I know for certain is that I can’t fully rely on medications. When it comes to mental health, medications are a great aid, but they will never fully cure the issue. This is especially true with the root cause of your anxiety and depression are a physical chronic illness.

So, here’s the plan, or the ‘resolution’ for the new year: After getting up in the morning and becoming fully awake, I’m going to gauge what physical and mental strength I have, and then figure out what can be done on my mental to-do lists for the day. Then I will arrange my day around that. There will be days I may have to push a little (I still have to go to work regularly), but on those days, I can find other things that will bring some comfort.

I still have the tools I talked about in the last post that I continue to use, and to some, it may sound like I’m simply adding to my mental to do list for each day, which may become overwhelming. But I think asking myself what I can accomplish will simply help sharpen my perspective on the day. Perhaps the answer to the question will mean that I have to do some easy form of yoga for 30 minutes instead of trying to walk in the cold weather with the hubby and the dog like I had planned. Perhaps it means I need to consider taking a stronger medication for pain, or be extra gentle with myself and my work load. Sure, I may not always be able to rearrange the things I need to do that day (there is still a full time job that I must do), but by becoming in tune with what it is I really need, I can end the day more comfortably than simply collapsing on a couch for a couple hours and then painfully walking up the stairs to bed.

And now that I’ve written and re-read this, I might as well call this question what it is. I have a new years resolution. But for once, this one has me looking toward the new year with a bit of hope.

Reintegration Into A Changed World

Since my last post, things have been dicey. Some days I’ve done really well while others have gone to total shit. It seems like there has been no in-between, either. I’m either really good, or starting to wonder to my husband if I need to get my primary care physician involved.

Still, in the past two months, I have accomplishments to be proud of. I haven’t gained a huge amount of weight, even though I’m a stress eater. My husband and I have done a spring cleaning of the entire house. I have my gardens planted, and have setup a new workout space that I’m looking forward to using in the coming days. I’m proud of these things because they mean overall I’m doing just a little bit more than just existing in these quarantined times.

But just as I’m starting to get used to this new quarantined normal, the world changed again. This time the changes smell of chaos and revolution, pain, unrest and downright white-hot anger.

I’m not going to discuss the specifics here as these emotions and the reasons behind them are overflowing out of every possible electronic and paper outlet in the world. Everyone feels them, regardless of whether or not they choose to believe it. Not only is everyone in the world feeling these emotions, they are changing their lives because of them.

With the fibromyalgia and hypersensitivity issues I have, the world has become a very, very painful place. Any sliver of emotion from any source easily becomes my own, unless I happen to have enough mental energy that day to stop it. But, because I am already in a reduced energy state thanks to the quarantine and virus, stopping those emotions from invading my body is becoming much harder each day. Some days I become totally powerless, and everything comes flooding in so much that I can’t even think straight anymore. Meanwhile, the fibromyalgia has accepted this new energy and uses it to create more pain and problems. This means I now have to expend more energy to deal with the fibromyalgia symptoms, which then means I don’t have enough to protect myself from the emotions of the world, which means the fibro gets worse. And around I go in this horrible cycle until I either muster enough strength to put a stop to it, or I start considering other ways to get out of the damn thing.

But there are even more things that stick in my mind about the current environment. Right now, the entire world is getting involved in the outrage and are trying to bring change through revolution. And while that is going on, I sit here in my little home office, typing this and being upset with myself that I cannot get involved. I can’t go out to a rally. And although in my head I’ve come up with a thousand and one different things I could say on multiple social media platforms to show support for the communities that have been hit so hard from this brutality, I’ve rarely got the energy to even attempt to open my computer. And even considering doing so sends me wheeling toward a panic attack.

I cannot even begin to start explaining how hard this is for me. Thinking about what I could do to participate causes painful twists in my gut, tears to form in my eyes and I start to lose all energy in my limbs because of the overall pain growing in my body. The more thoughts on participation I have, the more the pain continues to grow to the point where I’m not sure I’m even going to make it to the closest chair or my bedroom to lie down. In the lucid moments I do understand my body is truly sick, that these are real symptoms and I DO need to take care of myself. But when I’m not lucid, all my mind tells me is that I’m faking to get out of participating; that just sending donations, prayers and having hard conversations with family who decide to bring the situation up to me is not enough anymore. My mind says I’m sitting on the sideline and my inaction is simply causing things to be worse. And trying to look away for a fresh perspective simply means my privilege is showing, because there are others whose whole world is in turmoil and they don’t have any way of escape.

During this revolution, my company has started the process to open its doors and have workers come back into the office. So with this new transition looming I remain in what I can best describe as a state of shock. Logically, I know I’ve done everything I can during this quarantine period, and I’ve even gained some ground on things that needed done around the house. As far as this revolution, I’ve sent donations where I could, and signed up with groups that will help funnel that money where it is the most needed. And because my company is opening back up, I need to start focusing energy back to my job. So when I can stop my mind from yelling at me, I know I’ve done everything I can, because anything I do still needs to be done in the perspective of my own health and wellbeing. Posts like the one below I saw on Facebook today help. I’m grateful I saw it, because that is the inspiration for why I have written all of this out here on this blog. I AM doing everything I can, and that gives me some comfort. I just wish others would understand and acknowledge it.

Image originally posted by author Christopher Penczak

I truly hope that those who are screaming the loudest about people being complacent because they don’t understand why we are idle realize that those screams hit a nerve with those of us who are on the same side as they are. There are those of us here who could very well lose our lives by trying to take excessive action. Our bodies and minds just can’t handle what we wish we could do right now.

I have no doubt that I’m not alone; that there are probably thousands out there right in the same boat as I am. And I’m sure that I’m also not alone hoping that I am indeed making some sort of difference. But when the only things that you can truly do is to give thoughts and prayers, you simply have to hope that they haven’t been diluted so much by those that offer them in false sympathy that they don’t mean anything anymore.

A New Normal

Since the writing of my last post regarding flare recovery, life has changed tremendously. A new normal has settled in; something of which I don’t believe anyone in their richest imaginations could have thought of. Sure, many have thought about a pandemic and what it’s possible outcomes would be. But in many cases, those dreamed-of outcomes are wild and spectacular with accessories akin to the destruction of human civilization (and possibly with the inclusion of zombies). In it’s place – a quarantine that isn’t a quarantine; get takeaway from your favorite restaurant, get provisions (or figure out alternatives that are still available), from your local grocer, work from home or hangout with friends and family online. And do this all while sitting in a waiting game to constructed to slow a virus down from running its course on humanity.

This new normal is in a word, weird, even for those of us who are prone to be introverts. We get up, putter around the house, do work if you are able to work from home, eat, stare at a TV or computer, go to bed, and repeat. All with this impending doom and fear of this virus sitting about our heads and shoulders. To me, it feels like a heavy rope of burden that you cannot quite get adjusted to, and therefore you feel its effects every moment of every day. And along with that heavy burden come questions we are all asking. Will my partner or I get the virus? Do we have it now and not know yet because we are in the asymptomatic phase? Can I keep my job a little longer? Dare I consider going out to get provisions today? How are my friends handling this? Do I have enough to get through this? How much longer do I have to endure?

The fibromyalgia, in this situation, has meant that ropy burden of quarantine has painful thorns brought on by the entire situation. My pain levels are constant, enough to ensure I have to watch what I do, but not enough to keep me in bed all the time (like I could do that anyway). The pain feels like it sits in my bones and joints much like it does when the weather changes or when there is high humidity and cold. But where before I could make it go away with a warmer sweater, extra OTC meds or gentle movement, now I cannot get rid of it. It wakes me up when I move in my sleep. It makes it hurt to sit, to stand, and sometimes it even hurts when sitting on my couch. Even my last-resort hydrocodone doesn’t always touch the pain.

The coping mechanisms for this frustrating feature of my new normal have been one of two things; either exercise, or eat. Building back my endurance from the February flare has been slow-going, which means exercise doesn’t help as much as I want it to. And that means I’m falling back to an even stronger urge to eat. Eating has it’s own problems, as I could very easily (and quickly) put back on all 80 pounds of weight I’d lost several years ago. I’ve always had eating problems as long as I can remember, and keeping that in mind I’ve forced myself to at least look at the calorie counts of what it was I was popping in my mouth to ensure I don’t go overboard.

And while I hurt, I know I’m probably one of the lucky ones. My husband is home with me. We have enough food in the house, which means we don’t have to go out often. Our housing situation is stable; and so far, working from home has been OK. And I’ve even engaged my husband in some spring cleaning activity. We have almost half the house done, and I’m still hoping to get his help on the rest of it before the end of this quarantine, as I’m sure when this is over, he’s going to take one look at me trying to hand him a bucket of cleaning solution and washcloths and run screaming.

Overall, things could be better, things could be worse. I’ll keep taking it day by day and hope things get better soon.

The Best Laid Plans of Chronic Illness Sufferers go Awry

I’m looking back on this blog after another exceptionally long time away and realizing that I really (yet again) didn’t have much control over the hiatus, and the date of my last post clearly proves that. Not long after that post, I injured my back while moving large tubs of cat litter around my office to vacuum (we have four cats, and with that quantity, the little litter boxes they sell don’t work very well. Large storage bins of litter are much better for the cats, but not easy on the body!).

The injury was a tear in the muscles around my L2/L3 vertebrae, caused by twisting while holding roughly 30 pounds of weight precariously. And of course, I did what almost any chronic pain sufferer does with pain; I tried to ignore it and keep moving, because I felt like I didn’t have much of a choice to do anything else.

But unfortunately the pain wouldn’t let up. In fact, it got so bad that I ended up taking multiple doses of my precious last-resort hydrocodone a day. So a first trip to the doctor was made about a week later, the diagnosis was made, and I was sent home with the blessing to take more hydrocodne as I needed, but to take it easy.

So I took it easy. Or, at least I thought I did. But as the pain continued to slowly build, my mobility started going out the window. It got to the point where all I could do was come home and sit either in bed or lay on the couch with ice packs, topical creams, heat wraps, OTC meds and the use of my emergency hydrocodone.

Finally, I went back in October to my doctor, who suggested I go see a physical therapist for manual therapy. I had done manual therapy before, but I was not prepared for the intense and painful work that was needed to get me back in shape.

I should have realized I was in for a long haul when my physical therapist used the words “hot mess” to describe my back and pelvis. Not only had the muscles not healed, but my pelvis had tipped, one side had twisted away from the other AND moved forward. And along with the muscles healing, my Thoracic spine wasn’t doing much better. I had twists in T4 on both sides of my spine, causing me pain that I had simply thought was fasciitis for all of these years. All of this also caused muscles around my spine to *think* like they were in a normal position, so when they moved back into their proper position after the spine was straightened and the pelvis put back, they decided to rebel for days with muscle spasms as they had no idea what to do in this new ‘normal.’

Three full months of regular therapy later, I’m finally starting to move again. I’m slowly adding more exercise back into my regimen, I’m back at work after a bit of a break, and I’m starting to feel like my normal self again. I’m not out of the woods by a longshot. My physical therapist thinks that it’s going to be another three full months before the muscles in my back fully heal, and the rest of my back muscles start to get fully acclimated into this new ‘normal’ position. Until then, no real, heavy lifting and I have exercises I must do daily in order to keep things in their proper place.

The entire situation has been very hard. But this is what it means to have fibromyalgia. Clearly there were things going on in my body that I chalked up to fibro pain that clearly were not. But with fibromyalgia, it’s hard to tell what is simply the fibro, and what is an actual injury. And I’m sure I’m not the only fibro sufferer that has this issue.

But now that I’m starting to feel a little better, my resolution is to post here more often. I want to share my story of chronic pain, not to ask for a pity party or for others to feel sorry for me, but because I find strength from sharing. Sharing my journey helps me understand what I can do better, what mistakes I made and what real strength I have when I read what it is I’ve done. It’s healing, and it’s powerful. And hopefully, someone else may read this and it will help them know their struggle is not a solitary one.

So in the coming months I have lots of ideas for posts and am looking forward to sharing my story, my ideas for dealing with this shitty disease and hopefully hearing about others stories as well.

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.