“How Are You Doing With Your Brain Injury?”
In my head “Well, I’m better than I was 9 years ago but way worse than 10 years ago. I had a headache yesterday because I did too much, but also had a headache the day before and did almost nothing. The seasonal weather is changing and so the pressure in my head is higher now but it also changes by the day if there are drastic temperature changes. I don’t look disabled any day you look at me but those who live with me know I struggle with physical, emotional, social limits and a brain injury.
Some people see me riding my bike but don’t see me sleeping for 2 hours afterwards or having to have a nap after a long phone call. I startle easily and my anxiety and Post-Traumatic Stress Disorder (PTSD) get triggered quickly. I can have conversations with people but if they suddenly bring up shocking stories or a violent news story pops up unexpectedly on my tv, I can’t get them out of my head for days. Some of my relationships have become strained because I have less tact, empathy, and ability to listen. My dizziness is like ‘twilight zone’- inspired vertigo sending me into a vortex of upended reality. My sensitivity to sound makes almost any loud environment intolerable for any length of time.
Un-isolating Was Excruciating
The pandemic has really put a dent in my socializing so learning to isolate and then un- isolate has been excruciating. If I did the exact same thing every day for a week, I would have different symptom responses each day. That is why it is very hard to pace and plan, but I try. Most days I can do three things, and if I attempt 4, there will be consequences. If that 4th thing has anything to do with my children, I will do it every time, then it will take days to recover. If I drop down to two things in a day, that will usually work but not if I have already had several busy days. Recovery then takes an isolation period to adequately rest. My sleep varies but is generally good unless there is something that increases the pressure in my head (see weather above).
Sex? Well, that is an interesting topic. The short answer is ‘yes’. The longer version includes the word ‘different’. When I say that my brain injury makes me tired, it’s not like that feeling when you haven’t slept well the night before. It’s the kind of bone numbing, can’t- walk -to- the- next- room kind of fatigue that sets in when you have over done it. You can’t think straight when you are that tired. That limits choices of things you can accomplish which sets you back mentally.
If you feel like you are unable to do things, day after day, it is demoralizing. So, the only answer is to really understand your symptoms and plan for activities in spite of them, instead of waiting for them to go away. I will plan to go for a walk with a friend but then might have to cancel or cut it short because I can no longer comfortably manage my symptoms. The good friends continue to be friends if you keep cancelling and try to understand.
My Goals Are Different Now
Living in the moment and meditating are really helpful because it allows you to celebrate when you have met one of your goals. That’s the other thing. My goals no longer have to do with achievement. They have to do with happiness, comfort, predictability, creativity and small victories (like riding my bike completely around my neighborhood instead of competing in triathlons like I used to). So, I am the same and I am different.
If I sound insane trying to describe how I am and what living with brain injury is like, it is because brain injury damages the part of your brain that organizes communication and ironically renders us unable to explain the complex, multilayered, paradoxical nature of our symptomology. Very few people understand it, and I’m not sure I do yet, and I’m 9 years in. But thank you so much for asking and then trying to understand the mish mash, throw spaghetti-at-the-wall attempt to describe it that comes out.
Actually said: “Well, not too bad. How are you?”
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