I am forty-five. I am single. I have 2 adult children and I have relapsing remitting Multiple Sclerosis.
I don’t have a wheel chair, I don’t look sick, and I don’t have a stamp on my forehead announcing it. I do however, experience weak tired legs or hands that can give out at any moment, fatigue that you could not imagine. I nap or at least lie down every day. Some days I’m ready for my nap by 9am only after getting my day started. Simple everyday tasks may take me longer to do and use up more energy than a “normal” person. Heat can make me weaker, nauseous, and light headed. Cold can make me stiff, cease up and I experience a burning feeling throughout my body. My nerves often give me “phantom sensations” like a bug crawling up my leg or the feeling of a hair on me. It can feel like a jack hammer is pounding away on my bones. My symptoms, most of the time, are in my hands. I may unexpectedly drop things or they may unexpectedly fly out of my hands without warning. My beautiful penmanship sometimes looks as if a seven year old wrote it. My balance is not very good at all; I can’t close my eyes and tilt my head back without falling backwards. I may slur my words and walk as if I am drunk. I may have a hard time concentrating or forget my thought mid-sentence. My nerves are sending out messages for no apparent reason at all. These messages could be sent in the form of pain, spasms, twitching, pins and needles, tingling and numbness along with LHermitte sign which is the feeling of electric shock going down my neck and spine when I bend my head forward quickly, like when you sneeze. Oh and if I need to go pee I NEED to go now. And the stress…stress, worries, negative thoughts all take a toll on me as my body rebels and I’ll get flare ups just for the hell of it. Nobody really can understand these symptoms and it is hard for those people, especially loved ones to sympathize with me mainly when I say I am tired. The struggles I experience daily you will never understand because they can’t be seen making it hard for “normal” people to understand because I don’t look sick. MS is an invisible disease.
This is not something I ordinarily divulge to people about myself. I normally let people see me and get to know me before I announce this, unfortunately some people like to judge. I am writing this for the newly diagnosed and all the people who are, and I say this from a place of love, the uneducated, those lacking the information on this particular disease. I am not a doctor. Am I an expert on the disease? Well yes, I consider myself an expert on the disease I HAVE, on the symptoms I experience. I feel after eighteen years and ten months living with MS I have earned the title of expert.
So for the newly diagnosed…first and foremost please remember THIS IS NOT A DEATH SENTENCE. The key is to stay positive. When I was diagnosed almost nineteen years ago I was newlywed, had a four year old son and a one year old daughter. I was only twenty-six years old. I was alone in the hospital room when the neurologist came in and told me I had Multiple Sclerosis. My response…”Oh thank God!” Now a lot of you may be thinking thank God?? WTH? I know the doctor was as he looked at me as if I had three heads. I think he thought I was in denial or something. He asked, “Mrs. Johnson do you know what MS is? Do you know anything about it? What DO you know about it?” I replied with, “My maternal grandmother had had this disease. She was diagnosed around 1953 and went from walker to wheelchair until 1970. At this time, the stressed caused by the loss of her sister-in-law created havoc on her body and she was confined to a bed. My grandmother passed away twenty years later on January 1, 1990 as a result of having pneumonia.” So what DO I know about MS? I know my grandmother had had it for forty years, she gave birth to another child after being diagnosed to add to the other seven she already had. I know she believed in God and put her trust and faith into him (or her) and she had a very positive outlook on things. I know I never heard her complain. I would sit up on the end of her bed and watch tv and she taught me how to play crib. She always had a smile on her face. She was the strongest woman I knew. She was around to see her kids, their kids and even a great granddaughter. I knew Nan had never received any drug therapy for her MS and here it is 1999 there must be something I can take to help. Most importantly I knew I wasn’t going to die from MS! So yes…Thank God! I was very grateful I had MS and not a brain tumor. Right from that moment I knew I had to have a positive outlook on the whole thing. I said from the beginning I might have MS but it doesn’t have me. And really newbies, it is so true. You can’t allow MS to have control over your life. Don’t allow it to have power over you, own it, but don’t let “it” own you. Also, there are different types of MS. EVERYONE is different and will experience different symptoms. Just because I experience certain symptoms doesn’t mean you will too and vice versa. Although you are feeling shitty one day doesn’t mean you will feel this way forever. Every day is a new day, be grateful for everything in your life. Some days you might even forget you were diagnosed. Believe me I do know how you feel and I am not saying that this is not a big deal or try to belittle or treat your diagnoses lightly, because it is a big deal it is life changing but that does not mean your life is over. Most likely you will get depressed, experience panic or anxiety attacks, get angry as hell, pissed off and think why me? It’s not fair. And you are absolutely right it is not fair but guess what, too frigging bad, it was the hand that was dealt to you so I am here to get in your face and say suck it up buttercup and make the most of it. Accept it, express your feelings but don’t dwell on it, don’t allow it to take you down that rabbit hole. Live everyday like it is your last. Be grateful for what you DO have. Focus on those things. Remember, what you put out to the universe you get back so watch your thoughts. Get rid of the negative people in your life, doesn’t matter if they are family or a lifelong friend, if they are negative…see ya later bye! You will thank me. Ignore the people who think you are faking being sick. Hell most days we are faking being well. Eat right. Exercise. Stretch. Do yoga and meditate. Get plenty of sleep. Smoke weed, eat edibles if it helps why the hell not? It all sounds scary and it can be just try to remain calm, stay positive, be strong and eliminate the drama and stress from your life. Yeah right. OK, this one really makes me laugh, it is easier said than done but try not to make mountains out of mole hills, don’t sweat the small stuff. Think; will it really matter tomorrow or a week from now? Things will work out just like they always do. Take your what “ifs” and change them to so whats. You will do what you have to do. Don’t worry about IF you’ll end up in a wheelchair, so what IF you do, you will deal with it if and when at that time. No sense worrying or putting energy into that. Surround yourself with positive people and laughter. Put you first! Listen to your body! Those were the two things that took me the longest to grasp. I was and still do sometimes take care of everyone else before myself and I was too damn stubborn to sit, lay and relax. I took the “MS doesn’t have me” to the extreme, I say it doesn’t have me but at the same time I have to respect it. I recently had an “attack” “relapse” “hiccup” “bump in road” whatever you want to call it this past July, the first in nine years and I didn’t even realize that’s what was happening until September. I couldn’t walk for close to two months and believe me I was scared shitless I can honestly say that was the one time in almost nineteen years I felt that scared. A little slap in the face, a helloooo remember me…MS! It was a huge reminder to slow down and take care of myself. I know exactly what brought it on, the STRESS of losing a dear friend of mine. So it goes back to respecting the disease and taking care of you, not over doing it. If you are tired; sit, relax, have a tea and do not feel guilty about it! Too tired to do dishes or laundry? It’s alright they will be there tomorrow. Don’t have too much pride to ask for help. I am here to tell you, and since I am an “expert”, you will be OK. Yes your life will change in some ways perhaps in a lot but remember, you are still alive and you are a hell of a lot stronger than you realize or give yourself credit for. Like my mom always says; “God will never give you anything you can’t handle.”
Now for you, “the uneducated about the disease” people… just breathe! I know you probably have just as many questions as someone who you love or care about that has been diagnosed. So quickly, MS is an auto immune disease that affects a person’s nervous system. There is a covering around our nerves called Myelin when that is destroyed the nerves can’t send messages properly. In simple terms think of MS as a twist tie, you know, the wire covered with paper ones. If you exposed the wire (nerves) in the twist tie those are the “bad” nerves and all the paper (myelin) are the “good” nerves. That’s how those messed up messages can take longer, get mixed up or lost completely throughout our body. I hope you never do understand completely but go back and read the first paragraph above again so you can see some of what us MS people have to endure each and every single day. Have patience. Some days may be tougher for you but try to have compassion rather than judge or get frustrated. Be supportive. Just because we are tired today and can’t go on that five or even maybe one km hike doesn’t necessarily mean we can’t do it tomorrow or the next day. The disease is unique for everyone. We are not dying. We ARE still the same person you knew before the diagnoses. Also for me, and again everyone is different, please don’t baby us. If we need a hand opening a jar, getting dressed, going up or downstairs etc. we will ask for your help. Oh yeah and a hug could never hurt 🙂