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The One Chronic Illness Symptom I Wish I Could Get Rid Of

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If you were given the opportunity to get rid of just one of your chronic illness symptoms, which would you choose? 

Those who know my situation would probably think I would choose to get rid of the searing pain. Or dizziness. Or the inability to walk more than a few feet. Or the overwhelming sensory sensitivity that makes me feel assaulted by noise, light and smells. And don’t get me wrong, I would love to get rid of all those symptoms, and many others, if I had the choice. 

But the absolute top of my list is a symptom that often isn’t at all obvious to others: cognitive impairment. Even those closest to me, who have to help me deal with its effects, are unable to see the full devastating impact of it. 

Part of the problem, in terms of people being able to “see” the impairment, is that I’m still intelligent, and I can at times be very articulate, especially when I’m running on adrenaline. Plus, I naturally only talk about the things that my brain has been able to come up with, rather than things I have forgotten or am unable to process. So the impairment is all the more hidden, but it’s no less devastating. 

There are times when I can’t walk because my muscles are too weak or are paralyzed, but there are also times when my muscles will work but I can’t walk because I can’t remember how. Or times when I can’t communicate because I can’t translate thoughts into words. Or times when I have to be given detailed step-by-step instructions on how to sit up and get out of bed because I can’t work it out. Or it doesn’t occur to me to eat even though I’m hungry and food is in my line of sight. My brain recognizes the problem but just doesn’t suggest a solution or even think to look for one.  

Mistakes, forgetting simple things and using incorrect words are all common occurrences. I frequently forget my daughter’s date of birth. I even forgot how to spell her name once. I often can’t eat or walk if someone is talking because my brain can’t process both things at once. I’m unable to follow the plots of books and TV shows.

I have no idea exactly how old I am or my husband is. My mom has taken to texting me subtle reminders before my husband’s birthday so that I don’t forget it. I use my phone a lot to remind me what day, date and month it is, but I’m still often confused.

A couple of months ago, I saw something about Easter, so I assumed we were in springtime when actually it was autumn. I often have to get help from my mom over the phone on how to do simple tasks or make simple decisions. My brain can’t be trusted or relied on. 

I hate it. It makes me feel embarrassed, lost, frightened and vulnerable. Having a body that doesn’t work very well is rubbish, horrible and excruciatingly painful. But having a brain that doesn’t work very well makes me feel like my very self is being stripped away. And I think it’s particularly cruel that the disease I have requires careful management of every activity, an assessment of the risks versus benefits and an analysis of the most efficient way of doing it, and yet that same disease also takes away my brain’s ability to do such thinking.

I remember a day a couple of years ago when a doctor was due to visit me at home. I knew in advance that I might not be up to going downstairs so the meeting might have to take place upstairs. But I forgot about this on the day of the appointment and went downstairs. My mom was staying with me at the time, and she could see that I was physically struggling. She said, “We should have had the meeting upstairs.” I replied, “I know, but I forgot to think about it.”  

If I am completely honest, there are some positive sides to cognitive impairment. It can be funny if you make a mistake and can laugh at yourself. I can experience surprises several times over because I don’t remember that I’ve already seen things. The postman delivering something I’ve ordered is always interesting because I have no idea what it might be. Cognitive impairment also stops me dwelling on things like how difficult and depressing my situation is; I am often in a state of blissful ignorance, for which I am thankful. And it has taught me to focus on one thing at a time, so things get my full attention, and I have learned to be kinder to myself and less critical of my mistakes. 

That being said, I still hate the cognitive impairment, and I really wish I could get rid of it. It would enable me to manage all my other symptoms so much better and allow me to think of better solutions to many of the challenges I face. It would stop me feeling so lost, frightened and vulnerable. It would make me feel a bit more like me again. 

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Lead photo source: Thinkstock Images

Originally published: December 29, 2016
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