Be Your Own Advocate

A chronic pain scale

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

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

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

Understanding Your Energy Use

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

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

Get your Medical Information Documented

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

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

Prepare to be Your Own Caregiver

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

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

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

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.

Have You Tried Turning It off and on Again?

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

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

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

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

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

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

And slept another 13 hours.

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

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

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

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

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

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

Welcome to the exasperation that is fibromyalgia.

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

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

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