Most people who have had MS for any length of time have dealt with one or more of the faces of MS. As we all know the symptoms and the way MS attacks each individual varies from person to person. Environmental factors also affect MS and our individual response to many of the faces of MS.I am not speaking to the symptoms, the disabilities, and physical issues caused by MS. They would be too numerous to attempt to list them. I'm speaking more about the often hidden, subtlely invasive, and stubbornly refused to admit they even affect some of us.
Let's start with a common one often dealt with my by MS patients, depression. How often have we heard our various doctors ask us if we suffer from depression. What's your answer? I always reply if you tell me an MS patient doesn't suffer from depression, I believe they're telling a fib. How can anyone watch their body basically disintegrate and lose bodily everyday bodily functions due to MS and not be depressed? For many of us the ability to keep your balance, Walk, control your bladder, use your hands, having a brain that works like it used to, not being tired all the time and having to stamina to work like we used to are just a few of the bodily functions and changes that MS strip from us.
Anxiety is also common with MS patients. It's the fear of the journey we are embarking upon and not knowing exactly where MS will take us that makes us so fearful and anxious about our futures. Will we become wheel chair bound in the future? Will we lose bladder control? Will our brain become so fog enclosed that we no longer function like we used to? Will we become dependent upon the ones we love and if we do how will they handle it? Or perhaps is a nursing home or assisted living facility in our future? Again this list varies from person to person and could go on and on depending on your own circumstances.
Some people with MS tend to isolate themselves. I know for me as my disability has increased, I have become increasingly aware that I am no longer the same person I used to be. I have a harder time fitting into crowds so as a result I find I tend to avoid them when possible. I'm no longer on the same eye level that I used to be so I feel like people are always looking down on me either on my electric scooter or in my wheelchair. It's hard to become involved in long conversations when you can't be on the same eye level. As everyone else or move around to talk to various people in the crowd. Don't get me started on moving through a crowd while being in a wheelchair or on the scooter. People In a crowd tend to look rìght over you or even worse run right in to you or cut in front of you. It's like they simply don't see you. Is it any wonder that we sometimes tend to isolate ourselves and avoid things we used to enjoy because we simply feel we don't belong or we're not seen.
For a long time there was another feeling gnawing at my gut but I couldn't put my finger on what it was. I was at a festival on Saturday and a Guitar player was singing a lot of popular songs and some of his original songs. One of his original songs was about belonging. As I sat there listening to his song and the lyrics that he had written, it suddenly hit me that was the feeling that I couldn't ever put a finger on. Belonging. Because of my disability I need someone with me most of the time. My husband and my sons take turns on weekends to care for me. You can tell I'm a bother because I interrupt their activities that they normally do. And Lord forbid I asked to go somewhere like a store to do a bit of shopping becauxe it's like i've asked to go on a cruise around the world. So, I seldom get out of the house. They all think to be happy and complete all I need to do is go and sit in my power chair and stare out the window at the green pastures and the trees and watch TV. Inside I'm screaming. that's not enough that I want to be included in activities like. I always was. But, I get left behind more often than not. I can't ride horses anymore,. I can't play volleyball anymore,. I don't go for walks in the woods or backpack anymore but friends and family still do all these activities without me. Reasonably I understand I simply can't do these things with them anymore? Inside I'm screaming because it doesn't matter if I can't do it, my heart still wants what it wants. I simply want to belong. I want my family to plan events and a look with relish on the weekend they have me to take care of. I want my husband to enjoy my company again and take me to the lakes on weekends even if it's not his weekend to care for me because he misses me. I want to ride on our pontoon and enjoy the lake and the sunshine because this is something I can still do.
We all have our own stories and our own hidden faces of MS to deal with. I'm sure I left many out so feel free to add your own. If we share our own stories of our own hidden faces of MS, it might help others to feel as if they're not alone and understand things they might have tried to keep hidden. Understand that there is no shame in dealing with any of the hidden faces of MS that we have to deal with. They're all linked to the changes in our lives that MS brings upon us unwelcomed. We are very fortunate to have each other to lean on. Never forget to use this chat room to vent or to search for answers or to simply cry on someone's shoulder. It's what we're here for and someone's always in. Remember together we are stronger. Fancy59.
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