I was going to be a success story…

I’d prepared my mindset for overcoming struggle. After all, the most interesting stories have conflict. I’d read many stories of overcoming obstacles or at least fighting the “good fight”. These are fascinating stories. Didn’t everyone love the story of triumph emphasized on Oprah?

The Error of Relying on TV and Movies for Narrative

I have started many journeys fully intending to struggle a bit. Anytime you learn something new there’s that awkward phase when you’re not completely sure you understand, and feel like you’re just going through the motions. The takeaway I had from all these stories was that a battle would be relatively short. If you want to lose 100 lbs, you struggle for a year and you’re done. If you’re fighting cancer, you put everything else on hold till you win or lose and then you’re done.

It makes sense as an adult that there isn’t time to really convey the struggle. Who would think anyone would like to watch someone else struggle? I remember being forced to listen and watch people who were terrified of public speaking stutter and turn red through a speech. It was painful. As life goes on and we face more struggles there seems to be a common desire to know that others struggle and see how they face their struggles.

My common setbacks/struggles:

  • Chronic Migraines
  • Perception of other people’s judgement
  • Not trusting others
  • Constantly changing allergic responses
  • Goals that have so many variables that effect them
  • Putting off doing what I need to do for low priority “to-do’s”
  • Changing everyday behaviors and routines

So many people face similar issues. I generally let myself off the hook for falling into these traps every once in awhile. However, when I have weeks of disruptions and they all snowball together, that’s when I start to wonder “I’m I struggling more than I should be?”.

The Reality of Struggle

So it’s not pretty. Really. I have tantrums. They just look different than when I was five. I’ve gone to fireworks shows and hid under a blanket; tears streaming down my face as I covered my ears. What was once one of my favorite things had become a traumatizing experience. I haven’t been to a fireworks show since.

After a Christmas party with the extended family, I cried silently in the back of my parents’ car as they drove us back to their house. As much as it used to be mine, that’s no longer a safe place for me to decompress. Nothing of any actual trauma occurred, but my brain can not handle the stimuli anymore. I wasn’t aware of how badly it was affecting me until my first chance to get away.

Here I am, 7 years post trauma, and I still have to escape conferences and family gatherings. On top of the car accident trauma, it took eight years to diagnose another disorder. The diagnostic process is one of the most depressing and traumatizing processes I’ve been through. Let me tell you about the toaster-oven test! Of course that’s not what they call it…but that’s what it is…a human toaster oven. And it cost me $1000+ out of pocket to be painted and heated to 101 degrees.

The reality of recovery and breaking free is that it’s not a steady climb. The harsh reality is that you won’t get it back. Even if you recover some function you won’t be the same and you can’t get the time back.

If I'm to get through this, it will be through a thousand failures.

I’ve recently discovered how helpful screaming can actually be! I do a Breathwork session that specifically has you scream. It was incredibly difficult to make myself scream before. I really don’t know why. The funny thing is that now, in order to scream, I hear my brother’s frustrated and muted scream in my head, so he doesn’t know it but he’s helping me express myself…privately.

Screaming does something to you physically. Your lungs feel different – stronger even. I don’t always need to scream but I can always tell a difference after.

Tantrums aside, there’s a lot of “recovery” and not a lot of “remission”. The mast cell disease has me in a cycle of about 2-weeks of actively damaging my nervous system, then 2-weeks of recovery, maybe a few days of something close to normal; then we start all over again. Recovery looks like exhaustion. I have very low energy, low tolerance, and can’t usually catch up with everything that built up during the episode.

I don’t remember what it’s like to not have tension in my body. There’s usually something I’d describe as so uncomfortable as to be painful. I hate the pain scales. They really have nothing to do with how functional you are.

I took a softball to the face and was in good spirits. Give me a migraine and even if the pain is low, my brain does not function. I had a therapy appointment during a migraine and I can’t remember what we discussed or if I walked away with anything useful. We should have cancelled but sometimes your healthcare providers actually need to see what a bad day looks like.

Mindset on the bad days

So disclaimer, having bad days that cause tantrums and bad moods is not the same thing as depression. It also doesn’t mean you should ignore it.

I’ve been doing teletherapy now and we discussed the episodes of depression that I experience. For me, it’s lines up near or lagging behind my other symptoms and I pop right out days later. I know it’s going to end and that makes all the difference. There’s something going on in my brain during that time that radically changes my ability to engage or feel positive. You won’t be able to cheer me up.

If the first part of this sounds familiar, please seek help. There’s no need to suffer and there’s no telling how long it could last on it’s own. What I can tell you is that, for me, about two weeks into an episode I start to think sawing off a limb is a good idea. Logical reasoning goes out the window. I even recognize I would bleed out but it still seems like it would solve the pain issues.

There’s also an issue of growing anxiety. I’m a conscientious person and I have fallen into a loop thinking that I’m doing the right thing by not bringing others down or assuming they feel a certain way about what’s going on with me. I’ve been wrong almost every time. Even though I don’t assume that people will have the exact opposite reaction, I underestimate their compassion often.

That being said, no one seems to recognize when I’m struggling. At least not enough to say anything. I can’t help but fight showing it but I may really want to talk about something and reach out and no one knows that I called to talk about something in particular. So…I would hope that someone would tell me if they were struggling, yet I can’t bring myself to tell anyone else. Okay, I’m getting better. I have had some of those long weeks of depression and called a family member to say “distract me” and they’ll talk until I pull out of it (enough).

Develop a mindset for overcoming struggles

Socializing

This can be very difficult. It can also be very easy. There are groups and forums all over the internet. Sometimes you need someone who understands to say “so sorry, hugs”. Sometimes you need someone to share a kitten photo with you or to tell you about their mundane day.

The part that takes a bit of foresight is figuring out where these groups are. If you need to hear “so sorry, hugs” then you need a group that will respond quickly and in the middle of the night. Maybe you need the funny one in the middle of the night too! Perhaps a funny movie or tv show will get you through it in the short run, but eventually it won’t be so effective. These people that you’re going to lean on need fair warning of what you need and expect. Communicate as best you can.

If it’s been a long episode, you may just need a good friend to come over and watch a movie with you or drag you out of the house into nature. People are powerful. The unpredictability helps you reengage with the moment and forget about pain.

Exercise

I underestimated this one for a long time. My approach to exercise was only in the context of weight loss so I forgot all about strength training. I can be intolerant to exercise but it comes and goes as well.

After I started taking reformer Pilates with a group, I noticed my mood was more consistently good and I had fewer of these low points. I also had improvement in my TBI mental issues. I began to gain the capacity to budget and have been doing more and more ever since. I’m positive that this strength training was the key turning point to improving my quality of living. However, I finally had my diagnosis of Mast Cell Activation Syndrome and began an aspirin regimen a few months before so I can’t be 100% sure.

Laughing

Do you have a favorite series or movie that always makes you laugh? I do. I’m a huge Psych fan. I’ve leaned on that show for laughs for years. Another favorite, Better Off Ted. Love it!

Laughing can be hard to do when you’ve been feeling poorly for a long time but it really does have a wonderful effect on your mood. I don’t find that fake laughing has any benefit but if you can teach yourself to tap into that on demand then you’ll be set for life.

Often times when I was going through the crazy moments I didn’t find any humor in the situation. Now I’ll be shaking my head and laughing about it just minutes later. I’ve walked into the edge of a door, fell through an open door, and walked into walls. While I didn’t see the door coming that one time, all the others I saw it happen.

I’m not sure if it’s vertigo exactly but when my brain goes haywire it can no longer compensate for the information my eyes are telling it. It’s crazy! All I can do is put out my hands, drop to the floor, and laugh….though sometimes it’s a mix of laughing and crying.

Consider the past & prepare

There’s no way to plan for everything. However, given your past experiences it’s possible to plan for a better outcome.

One of the greatest and most persistent issues I have since the brain injury is with the perception of time passing. I can not tell the difference between something that happened two weeks ago, 2 days ago, or just 2 minutes ago. Everyone should be able to relate to this a bit with mundane daily activities. For example, if you prepare a pill pack of vitamins and prescription pills, do you know exactly which ones you took yesterday? Can you picture what was in your hand when you took your pills?

I can. Wait, was that yesterday…or was that 3 years ago? This is where having good systems comes into play. You can trust that you put all the pills you will need into the packs because you picked up all your prescriptions and filled your containers immediately. If you don’t have brain damage or are overly stress for some reason, then you’d reason through your systems and with a few specific memories you’d be confident what you really took the day before. With brain damage, the images that come to you most easily are not often the most recent. Just because you asked for the image of yesterday, doesn’t mean you weren’t handed the image from 3 years ago.

Coping techniques become very important. Note taking needs to be in a spiral bound notebook with dates and extra information that wouldn’t normally be required. If you need to do something, it will also need to be transferred to some to-do that you know to check. Your specific needs will be different than mine but being able to put things in chronological order is only one specific time issue.

Have you ever said to someone “I’ll call you next week.” Then two months later you recall saying that and have no memory of calling them back? There are many things that we do autonomously like I mentioned in the previous paragraph but it feels like you’re losing your mind when you did something intentionally and completely forgot about it.

Timing things for prime brain power is an important as well. Decisions are extra taxing. If you can break it down, do so. Make annoyingly detailed checklists. I’ve had to add “prepare to install door stops” an entire day before the task “install door stops” because I would need to watch a YouTube video or read the instructions before. Sometimes all I could manage was to tell myself that all I needed to do was mark where to install something, then I’ll install it later.

Sometimes I’d keep going, and sometimes that would end very badly.

How do I adjust my mindset for overcoming my struggles?

  • Chronic Migraines:
    Do my best to treat them and manage my time away from work. De-prioritize as many tasks as possible. Prioritize sleep as much as possible. If I can’t sleep, at least give my eyes lots of rest.
  • Perception of other people’s judgement
    The vast majority of the population’s judgement doesn’t matter and most really don’t care – even people who seem to care A LOT. The people who care about you are open to new information and likely won’t understand what to do with the information unless you tell them.
  • Not trusting others
    It’s not my responsibility to be the keeper of other people’s worries, things, memories, or struggles. I can provide guidance but must remember to trust they are capable of getting it done or figuring out what is best for them.
  • Constantly changing allergic responses
    Remember that my allergic responses are stackable. Look back several days for differences in my environment and choices. Add anything that might be contributing to a list to watch. I’ve linked the list in another post. I don’t have to know the cause to react.
  • Goals that have so many variables that effect them
    Reflect on the factors that were and were not in my control. Forgive myself for any missteps and work to avoid the conflicts in the future. Prioritize day-to-day health, then fun.
  • Putting off doing what I need to do for low priority “to-do’s”
    aka Stalling. Oh yes, I do that. Sometimes I will call my mom or sister and just fess up. We’ll talk through it for about a minute and then they’ll say “now do it”. Other times I may actually need a milder activity to start with. If my goal was to take a morning bike ride but I’m feeling locked up. I may go for a short walk instead. Often, in the short term, I just let myself stall. Then I reflect and try to come up with what it was that I was dreading and do something that will remove that obstacle.
  • Changing everyday behaviors and routines
    I still suck at this. I try to stack it on an existing routine such as my once stellar night or morning routines. Now my morning routine is dead and my night routine has been abbreviated. There is only so much you can put there before you kill the entire routine. Trust me, I’ve done it.

Moving forward

  • Use calendar tasks/events for important dates
  • Take chronological notes – flag any to-dos
  • Work to build routines that tie to existing triggers and aren’t too much – need a memory device
  • Laugh often – perhaps for no reason – maybe at myself
  • Share ridiculous moments

I hope you’ve found some useful information. It’s easy to forget the coping techniques I had in place long before I really needed them, so if you have a specific problem and would like ideas comment down below. Subscribe to be notified of future posts on adjusting your mindset for overcoming struggles and more!