MS comes with a slew of symptoms. I wouldn’t even try to list all of them because well there’s just too many. And I don’t have the brainpower for that.
I will say that a lot of these symptoms are invisible. Meaning you can’t see them. Which often leaves people doubting us.
Cognitive dysfunction is one of those invisible symptoms. Studies show that more than half of people with MS experience some form of cognitive impairment. Insomnia and fatigue another common symptom of MS often contributes to this.
Cognitive dysfunction can include things like difficulty processing information, processing at a slower speed, inability to retain information, memory loss, word-finding difficulty, not being able to focus or keep up with a conversation, and staying focused on and forgetting how to complete simple tasks.
Cognitive dysfunction can be present in all forms of multiple sclerosis but it is more likely with progressive forms. For some, it may be mild and go unnoticed by the person with MS and their family for some time. For others, it has become a part of their daily lives.
Usually, changes or progression in cognitive function comes on with an exacerbation, and rarely once it has begun is there any dramatic improvement.
At the beginning of my journey with MS, I experienced mostly physical symptoms. I had some trouble with speech from time to time. It wasn’t enough to be cause for concern. Or at least that’s what I thought.
In 2014 I had a relapse that lasted about 4 months. It was by far the worst one I had experienced up to that point. With that I gained new symptoms, symptoms that did not go away or somewhat improve with time as they had in the past. I won’t list them because again it’s too many. The most difficult one that came with this relapse was the cognitive changes. Although it may not have been noticeable to those around me I knew I wasn’t the same.
I thought it would improve with time so I tried not to worry or let it upset me. I hid it as best I could. Played it off. You know. Jokingly saying “wow I can’t talk today” but inside I knew I was struggling.
As time went on it did not improve. It slowly worsened. It became increasingly hard for me to find words, keep up with conversation, put my thoughts together, write, and so on.
I struggled a great deal with these changes in myself for about a year. It was very difficult to accept that I was no longer me in so many ways. For the first time since my diagnosis, I found myself angry. And that made me angry! How could I allow myself, someone, that just goes with the flow and carries on to be angry. You know I always tell people you have to allow yourself to feel whatever it is you need to feel in order to work through it and go on. Guess I should listen to my advice occasionally.
I did eventually end up doing that. Allowing myself to feel sad or angry about the person I lost. And it is almost like a death. That old person doesn’t exist. Some parts of her do but I’m a new me. In some ways a better version I think.
So what does this mean for me these days? What 6 yrs down the road now.
Well let’s just say dazed and confused might describe my days. I don’t have good days anymore. Wait! Let me just stop right there. Before your thinking she hates life! Far from it. I have wonderful days. But if I’m being real. That is the real ugly truth of it cognitively speaking. I struggle far more than anyone is aware of. I have good parts of days or moments. Ya more like moments. When things seem clear or I can speak with only a small amount of trouble. That can change with the blink of an eye.
I often forget what I’m thinking about or what I’m doing.
I often have to stop what I’m doing and just say oh well another time. (sometimes it comes back to me sometimes not)
There are times I know I was on to something great but it’s a jumbled mess in my head.
I process information slower. That can be when I’m reading or in a conversation. It’s kind of hard to explain what that is like. I can hear perfectly. I hear what is being said and it’s almost like on some level my brain is acknowledging it but not fully. It’s like a slow internet connection. Your computer knows it needs to load the page but it can’t connect. Then it takes a while for my brain to find the response and the right words to go with that response.
I struggle every day to find words and convey my thoughts. If you were to spend a day with me I would ask you over and over what’s the word I’m looking for. This is still a hard one sometimes because I started this blog and my Facebook page to reach out and offer support. I’m not able to do that in the way I was. I have a very difficult time putting my thoughts together. I avoid commenting on social media because of this. It’s frustrating when someone is having a hard day but no words will come to you to lift them or offer encouragement. All I can think of is I’m sorry! Way to go Shannon! Really that’s all you got? It can leave you feeling defeated, isolated, and as if you add no value to conversations at times.
My short term memory is ridiculous!
And this is a new one I’m learning to cope with. (I say learning to cope because this pissed me off good the other day) Just started about 4 or 5 months ago. Forgetting how to do normal daily tasks or things that should be second nature.
So let me just give you an example of this last one.
Just the other day I was cooking dinner. Right. No big deal. I love to cook. I’ve been cooking since I could stand on a chair to reach the stove. (my mom was right there with me) But getting to the point.
Dinner. Mind you this was a simple meal. I’ve made countless times but I couldn’t for the life of me remember what I put in it. I stood there for what seemed forever so confused. I had to walk away. Why couldn’t I remember this? I started to message my sister and ask her but I felt so stupid. I didn’t want to admit to myself I needed help for something that seemed so ridiculous. Somehow we all survived and no one seemed to notice but I knew it wasn’t quite right.
I’ve been noticing this more and more recently as well. I start things and forget to finish it or I think I finished it and come back to find it incomplete. Like getting the coffee pot ready for the morning so all I have to do is turn it on when I get up. I’ll put the water in, put the filter in, and just walk away. Come back later and be confused as to why I didn’t finish. This one is a little scary. It’s only been happening for the last month or so. I think I lock the door. I mean I really think I did until someone comes home able to walk in and wants to know why the door wasn’t locked.
So yeah now I’m starting to wonder maybe even fear what the future holds. I laugh about these crazy things I do. Sometimes it’s not funny but you have to find the humor in it. Well, I do anyway. That’s my way. Always has been.
I’ve tried all the suggestions like writing things down or setting reminders but it doesn’t help in my case.
Seriously if you could see my notebook and phone. It’s a mess!
It’s just a cruel joke I play on myself. I write things down just knowing I’ll remember what it means. Ugh no!
I do check these notes because I know I leave them for myself. Haven’t totally lost it yet. Ha Ha.
When I do they make no sense to me. I just stare like what was this fool talking about! Me being the fool.
Forget phone reminders because sounds, vibrations, and even drop-down notifications startle me. Pretty much anything loud or sudden. Lose your stomach heart pounding jump out of your chair startle.
Just another fun MS symptom. It keeps life interesting I guess.
And just like that, I forgot where I was going with this. Maybe I never really knew. Maybe none of this makes sense and yet maybe it makes my whole point. This is a typical day for me and maybe others experiencing the same things. It was here and now it’s gone. It was a good moment or at least I think it was. Maybe it will come back to me. Maybe it won’t. It is what it is and life goes on.
I’ll just end it with this. Earlier I said in some ways I’m an improved me. What I’ve learned from living with MS in general but more so from the cognitive dysfunction is to be more forgiving of myself, find the humor in difficult situations, and appreciate those moments.
If you are someone facing these challenges know that you are not alone. I see you, I understand.
If you are close to someone going through this be kind, be patient, and listen. Really listen if they want to talk about what they’re experiencing or how it makes them feel. Trust me they are more upset with themselves and scared than you could ever imagine. Just listen. We don’t need anyone to have all the answers or to fix us. We just need to be heard.