Looking Back and Moving Forward

It’s hard for me to look at my last post and remember that it was only several months ago that I wrote it. It seems instead like it was years ago. And while I am glad some of the things I had concerns about are now resolved (or are on the way to being resolved), I recognize that we aren’t out of the woods yet.

If you are anything like me, during this long summer and into fall, you may have some new symptoms from the chronic illnesses popping up due to the stress. I’m sure that this isn’t unusual, given the circumstances. And I think that fact needs to be shouted from the rooftops right now. Because again, if you are like me, you’ve been berating yourself for not being able to handle things on a day to day basis like you used to. But it’s OK we didn’t know that then, as long as we acknowledge it now.

And again, like me, I’m sure there were times that you were so overwhelmed that all you could do is grab the nearest comfort food (anything crunchy, warm and/or salty for me), head for the couch, grab the remote and find the first food-based reality competition you haven’t already seen to space out and feed your face.

It finally took my taking a breath and looking back on my personal behavior to realize that what I was doing was OK. It might have not been the best coping mechanism, but it was the only one that helped at times. I wasn’t doing significant damage to myself, and while I did portion out things the best I could at that time. And I got through it. I got through the anxiety-laden days of work, seeing the inequality and environmental issues loud and clear, being angry at myself for not doing more, and trying to keep myself safe from the virus all while I’m getting headlines from every media outlet screaming about shit being wrong, and dealing with family who choose to believe much differently than I did.

So now, I think we need to do two things. First, we need to take a moment to celebrate. I survived these past several months, even though there were a couple times I wondered if I would. And you, dear reader, you who may have a chronic illness like I do, or even if you don’t but found yourself in a much, much harder place mentally than you ever have before, you survived it too. And dammit, that is worth celebrating.

Second, we have to start planning for the next months. We have a midwest winter coming, which isn’t fun with chronic illness. We have new symptoms to figure out how to treat, and we have a pandemic that we have to protect ourselves against. And while we don’t know what societal issues will pop up, we have the ability to look back to find clues on both treating our new symptoms as well as thinking about what additional coping mechanisms we can use to get through the next couple months. (And one note, I’m certainly not giving up that salty/warm/crunchy comfort food and I don’t think you should give up that somewhat unhealthy coping mechanism either. I’m simply saying find more of them so that we have a bigger toolbox to draw from).

So the first thing I did to prepare is to look at my medications and changed them based on my new symptoms. And while I hate being on some of these particular ones due to the fact that my body can become dependent on them, I have to do it, at least for now. I can revisit the medication changes in the spring once we can move forward with a vaccine and try to get back to normal.

The next thing I did was to start a new activity regimen. I’m not going to call it an exercise regimen. What I’m doing instead is working on being active every single day. It may be walking my dog, sitting on the floor or on the couch and doing 10 minutes of stretching or modified yoga, doing my Sunday run or just working with a therapy ball on my hands and wrists while watching TV. I want to give my body something. Sure, it’s somewhat broken, but it’s still getting me through things, and my giving something back to it makes me feel better. That regimen is going to look different for everyone, and that is OK. the biggest thing you are doing with it is giving something back to your body. The thing I have learned in these past months is that when it comes to exercise, it doesn’t take much to help your body work a little better.

Thirdly, I’m going to continue to track what and how much I eat. No, I’m not putting myself on a diet. Sure, I am giving myself a calorie guideline, but if I pass that, I’ll simply enjoy the sound of it swooshing by. (Just like deadlines!)

I’m going to be tracking my food simply to be mindful of it, not to beat myself up for not eating enough or too much. Being mindful of the overeating coping mechanism, at least to me, allows it to be more effective. I’m making a choice to eat more because I feel upset by something. And while I’m writing that information down in my food tracking app, I’m also subconsciously examining what emotions are going on that made me want to overeat in the first place. That may not seem like much during the situation where you want to overeat, but it will do wonders for when you have time to look back again at this next trial.

Lastly, and most importantly, I’m going to be easy on myself. So long as I make a conscious effort to track my food for the day and do some sort of activity for the day, I’m good. Some days I won’t be able to do either, and that is going to be OK.

With these new tools, and the allowance of thinking a little more clearly thanks to new medications to help with these new symptoms and flare ups, I think I’m better prepared for this tough winter season. And hopefully this post will help someone else think about things differently so that they will also be a little more prepared. Because even if it is in our own individual homes, we are all in this together.

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.

Where Did I Go?

For a little over a month, I was writing two posts a week regularly. And after that, As those of you who are regular readers realized, I disappeared.

No blog posts, no updates, no comments. Nothing.

What happened? The realization that I could not continue to keep things at the same speed when I went back to school.

I am currently in a Masters degree program with the Boston University. It’s a great program, but it’s also an accelerated program. A normal 14 week class is cut into 7. Add the proctored final exam to the course and you’ve got a situation where you are spending all of your free time studying, doing homework, working on the term project and prepping for that final.

This is all about deciding what I need to spend my limited amounts of energy on. The program means a lot to me for many different reasons. So it is where I’m choosing to put my time right now. To try to do any more than I am would simply bring on another panic attack, and I just don’t want to do that.

My goal is to have two posts done next month (not including this one). So expect to see me back.

My final is August 24. I’ll see you then if I don’t meet my goal.

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.