There are buckets full of things to worry about when you have a chronic illness. There aren’t enough hours in the day for that conversation. I think I can narrow it down to a list of 5, though. Why am I even thinking about this right now? I just wrote about 9 Distractions When You Have a Migraine. I should try those distractions so I don’t think about my worries. They work well when I need to think about something else other than the low/mid-level pain I’m feeling. Not necessarily when it comes to worry and anxiety, it’s tough to get my mind to stop. That’s why I’m blogging this right now. Maybe if I write it “out loud” I can calm them down. Them being the worries (I’m sure you knew that!)
So exactly what are my worries? Some of these are probably yours too. In fact, if none of them are your worries, trade me bodies! I still want my life though 😉 Here are a few of my most nagging worries:
1. Sudden bursts of energy
Why would a sudden burst of energy worry anyone! This should be a good thing, right? WRONG! In my case, a sudden burst of energy is a scary thing. When I get a sudden need to clean the house and I’m all happy and stuff, you should probably call my husband. If I’m suddenly interested in going shopping and I’m walking fast, chatting away, and too happy to be normal…call my husband. If I get up from the couch all the sudden, too happy to be normal, and keep talking about needing to do stuff with a strangely, terrifyingly happy look on my face…call my husband. These are most likely signs of worse things to come. Over time I’ve realized that when things like this happen, “attacks” or “episodes” that keep me bed-ridden are on their way and possibly earn me a trip to the emergency room. NOT good times.
I have a disease called migraine, more specifically Hemiplegic Migraine and Migraine with Brainstem Aura, which are sub-types of Migraine with Aura. Migraine isn’t my only disease, I actually have several and they feed off each other. If you head over to my About Me page, you’ll get the low down on my slow down (I can totally hear my daughter say, “Mom don’t ever say that again!”). At first my doctor’s thought maybe I had Bipolar Disorder, and honestly I did too. But after a while, we realized that these “pick me ups” always led to a severe migraine attack that same day or the next. It was later determined these events were more likely migraine prodrome, the first stage in the migraine timeline. You can read more about the migraine timeline in my last post, 9 Distractions When You Have a Migraine. Another good resource for learning about the stages of migraine is a recent article by the American Migraine Foundation, The Timeline of a Migraine Attack.
We still worry about these bursts of energy, but at least now we know why they happen. That’s half the battle! When it happens, my husband is just as worried as I am, maybe even more so. He has PTSD because of my Hemiplegic Migraine episodes. They are pretty scary sometimes. Poor guy, he loves me though.
2. Worrying About the Next Episode/Attack
It’s easy to worry about the next episode. All illnesses have flare ups, at least from the stories I hear. Your illness/disease is always with you, it’s always part of your body. Sometimes we can go days, weeks, months, or years without major symptoms, if any at all. For others, symptoms are always there, but they are not so bothersome that you can’t go to work or play with your kids and/or grandkids. When an attack or flare up occurs, all life halts. Well, at least in your immediate world. Trust me, the world around you keeps moving.
During a flare up, though, all we can do is watch, like in the movies with the person sitting still while streaks of people move around them. It’s during this time when our bodies need self-care the most. Our family and friends have to “get over it” because we can’t be there for them. We are stuck in bodies that need maintenance and rest. It’s our life guys. For some of you, I know how it feels when these flare ups and attacks don’t ever stop. You’re chronic and you look forward to the good days, which come in spurts. I’m chronic. I get it. My heart goes out to you if you do not have a support system in place. Message me!! I am always here to vent to.
My worry comes from triggers and how vulnerable my body is to them in any given day. Is my pain threshold high enough that going grocery shopping won’t set off a migraine? I already know I have a disease, I’m not so caught up about the disease itself, it’s already in my body. Don’t get me wrong, I’m upset I have all these diseases and illnesses, but at this point in life, I’m doing all I can to manage them. I also know triggers don’t cause a disease. Running doesn’t cause a migraine, but it can be a trigger towards an attack of a disease for some. (Side note: I have Osteopenia and Degenerative Disc Disease, so grocery shopping is a major trigger for me, as this leads to migraine most of the time since my pain threshold is not so high. See Cervicogenic Headache.)
Let’s take migraine, for instance. Your trigger isn’t causing your migraine. Migraine disease causes migraine. But a trigger or combination of triggers, if your body is vulnerable enough, will set off a cascade of physical and neurological events in your body that leads to a migraine attack. So I think you can understand why I constantly worry about even just one trigger. Any given morning I’m thinking: “If I shower, blow dry my hair, AND wear make-up today, will I still be able to go to the baseball game tonight?” The physical demands of each of these activities on someone with chronic illness can be devastating. Don’t ask a person who isn’t sick, they probably wouldn’t understand…unless they’re a caretaker.
3. Using Too Many “Spoons”
Along the lines of worrying about triggers, I’m also always worrying if I’m using too many spoons to successfully get through a day. What I consider “successful” might be different to you. Successful for me is a low pain-level day and I can:
- shower and not feel sore after or need to nap,
- blow-dry my hair without a painful left arm (I have issues there),
- get dressed without getting back in bed,
- making a breakfast of more than a cup of coffee (you know, actually cook something),
- clean breakfast dishes (and not in the dishwasher, gasp!),
- write a blog post or two (without the need to constantly spell check),
- help my hubby with a load of laundry (major accomplishment),
- help Noah with his science homework (should my thinking brain work),
- make a full dinner (with no help),
- read a few chapters before bed,
- stalk social media (like I wouldn’t do that anyway),
- go to bed peacefully with a clear mind (who does that!?)
Short list, but hey, it’s an example. How do these examples equate to spoons? If you have a disease or chronic illness, I have no idea how you’ve NEVER heard of the Spoon Theory. So let me introduce you! I wrote all about it in Just not enough spoons… There’s an awesome video in the post where you can learn how to explain to friends and family how there’s just not enough spoons in a day to get everything done that a typical, non-sick person takes for granted. It really helped my mom understand what my daily life is like with chronic illness. Now she always asks me if I have enough spoons and it’s sometimes an inside joke for us. We snicker and giggle. I just smile because I know she gets me! Below is a graphic from my Instagram post about the Spoon Theory:
4. Making Plans
Letting people down is not in my nature. Before my multitude of illnesses, I couldn’t wait to hang out with friends and family. I enjoyed spending time outside of the office with my co-workers. Making plans with my kids to see their happy, little faces light up in excitement for an upcoming trip was the highlight of…well everything. Slowly, keeping plans started to become less likely to happen. Honestly, “maybe next time” seemed to be the only promise I could make. It crushed me. Who am I kidding, it still does, just not as badly. The difference between then and now is acceptance.
What am I accepting, exactly? I’ve accepted that I am sick and disease is part of my life. For some of you, you might feel disease is your life. It’s not, but it takes a while to learn that. I had to figure that out over years and many therapy appointments later, more on that in sec. I learned to accept that if I need to decline an invitation, that means taking care of myself. Giving myself permission to put my health first and not feeling selfish. If the person inviting me gets upset, they may not care about me as much as I’d hoped they would.
It’s a little different when you’re breaking plans you initiated, though. After canceling plans so many times over, it’s natural for the people you’ve invited to become frustrated or even angry with you. I don’t blame them, but I do expect empathy (though, don’t hold your breath!). What they will need to understand is it isn’t your intention to cancel. I really want to go. Why would I get excited enough to actually make a plan in the first place when I know deep down that it might not happen? It’s smart to give them a heads up that you really want to make plans BUT there’s a chance you will not be able to go if you get too sick. People who have learned about you and your illness will hopefully understand that and not hold it against you. You also have to be understanding of them if they feel disappointed.
Seeing the disappointment and the sadness in someone you care about will possibly lead to guilt. That’s inevitable if you’re the type to feel guilty, at least until you’ve learned acceptance. It’s even worse when the disappointment is on the face of someone you love most, like your best friend, husband or children. Stephen and I don’t make plans out loud anymore. We plan secretly between each other when it comes to outings with our kids. They’re 15 and 18 now, but we still don’t tell them plans we’re making. We drop it the day of if I’m feeling up to it and we all have a good time. Even if it’s cut short. Even with these hacks in place, I still worry about making plans. I can’t help but hate when I can’t follow through. But it gets easier the more I’m learning acceptance. I’m learning to love me first, sick and all.
5. Worrying About Worrying
Worrying about worrying is in the land of Anxiety. Yes, I have Anxiety, officially. So it’s no surprise that I worry about worrying. Anxiety is common in patients with a chronic illness, as well as their caretakers, according to the Anxiety and Depression Association of America. In a recent article about migraine and anxiety in Healthy Living Made Simple, Dawn Buse, Ph.D. writes:
Anxiety is common when living with a chronic medical condition, such as migraine. Migraine attacks are unpredictable, debilitating, painful and can have a major impact on people’s lives. Anxiety disorders are the most common mental illness in the U.S., affecting 40 million adults or 18 percent of the population.
Before chronic illness, I did not have Anxiety, not in the clinical sense. Sure, I was anxious before a test or if I was bold enough to ask a boy out. I was anxious before a job interview or a promotion. Otherwise, I did not worry much of anything. It wasn’t until I became chronically ill that I knew true Anxiety. I was anxious about the various aspects of my life and the changes happening that were life changing, but not for the better. Naturally, I became depressed as well. I often had doctor’s tell me I was getting sick because I was anxious and depressed. If I could just bring out all the bad stuff from my past I’d be fine. They would suggest therapy and I’d just look at them like they had four heads.
I did take one doctor’s advice who felt that way…eventually, but not because I thought they were right. Proving them wrong was my mission; I was so sure it was the other way around. I knew anxiety and depression arrived because I was sick and my life was falling apart due to illness. I know myself and I knew the helpless feelings and the negative thoughts were not normal for me. After several sessions with a clinical psychologist, she told me flat out that depression and anxiety were not the cause of my ailments. She told me I needed to find a doctor who agreed with her. It wasn’t until I found doctors that explained depression and anxiety can be triggers for attacks and not a cause for my migraine disease that I started to get real help, but not right away. Unfortunately, they also explained that chronic illness, depression, and anxiety cause a vicious circle of triggering attacks once it is in place. Discouraged, I tried to handle things on my own.
It took me a while, but I am now in therapy with an amazing counselor who is helping me find my way out of the dark hole I buried myself in after a lot of time in bed due to pain. I went through years, YEARS, of falling deeper into depression. Because I’m a naturally happy-go-lucky person, I was able to mask the depression and still seem happy and was able to get away with seeming “normal.” As time passed, I was slowly unraveling and not able to hide so easily. I was also in denial that I had actual depression. I figured I could stop the depression since I knew it developed due to chronic illness. Ha! You can’t just snap your fingers and depression goes away. It sticks like gorilla glue! You need a jack-hammer, also known as counseling.
I still have depression, but I’m slowly learning to talk myself-out of spiraling down into a dark place together with my counselor. He is giving me a different perspective to think from. It’s so refreshing and I’m finding myself adjusting my thoughts as they are happening. It’s pretty amazing, actually. There are so many types of therapy for patients with chronic illness. I urge you to do your research and get reviews from others with chronic illness who seek emotional counseling.
Letting Go of the Worry
Chronic Illness is a tricky beast. Worry becomes part of what we do after a while. It’s a normal emotion for someone who does not have a chronic illness too. So don’t feel special 😉 If you ask PsychologyToday.com:
Worry is the excess emotion that remains after all reasonable measures are taken to safeguard your family and personal interests. … Like anxiety and fear, worry is an emotion that derives from the appraisal of threat. With worry, however, the threat lies in the indefinite future, not the present reality.
Here’s the thing, people with chronic illness worry about the threat that “lies in the indefinite future” BECAUSE of the present reality. If you didn’t have a chronic illness, would you worry about 1-4 above? Probably not. Even so, worry is not healthy and does not fix the future. We have no idea what is going to happen and that’s why worry is dangerous, but we still do it. It’s human to do so after all, as long as it isn’t excessive. If you get a chance, read this article on PsychologyToday.com about useless emotions called worry and guilt. Very insightful stuff written by some really smart people.
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