I start this with entry with the do’s and don’ts of MS. Pretty serious shit right? Not really I’m just kidding. I know I’m an ass, but thats my coping technique . Everyone has their own way of dealing. Mine is by being a jokester. Ya know putting a funny spin on a shitty disease is pretty therapeutic. So here I go…..
There aren’t any do’s and don’ts of MS. Everyone’s MS is different. I guess I should start with a little history and then go on to my way of dealing with MS the gift that keeps giving.
I was 34, I was a realtor at that point in my life. The market was at peak and I was cleaning up. Kicking ass and taking numbers. My boys was 14 and 12. I was married to the man of my dreams. I was walking in tall cotton as they say in the South.
Then suddenly one day my right arm started going numb. Hmmmmm curious. I chalked it up to a heavy purse. I’m known for carrying anything and everything in my big old purse. So I empty the purse and cut it down to the bare minimum. I cut it down to make up, money and my handi dandy knife. After all what hispanic gal would go about her day without a blade handy. Just kidding it was a Swiss army knife. Problem solved right? So I thought. It didn’t help. I went to my GP because the numbness was spreading. I also had a rash at the base of my scalp. A couple of weeks prior I had gotten a tetanus shot for a cut and experienced flu like symptoms. So my GP sent me to a neurologist. That neuro thought I had a basal migraine. I wound up finding another Neuro after several months of no real answers and a ton of crappy meds that didn’t help. By that time I was completely dead on my right side and I was dragging my right leg. The new neuro did the necessary test and came back with a diagnosis of MS.
I knew nothing of this disease. I was scared shitless!!!! As I’m sure most of you have been. Long story short I educated myself. Stayed on top of the different research etc. In other words I took as much control as I possibly could. The other thing I did was I didn’t wallow in self pity. I pretended for many years to be A ok. Ya know what? I was A ok to a certain degree. But I wasn’t completely honest with family and friends. I didn’t let them see the struggle for what it was. In my case it kind of hurt me because no one really knew how to deal with me as my disease progressed. My bit of advice on this subject is tell people the truth. Tell them the struggle when you need to but don’t, I repeat don’t get lost in this disease. Whatever you do don’t let this shit consume you!!! Speak your piece and then move on.
I went to different MS meet ups etc. These functions depressed the shit out of me. It was a bunch of really sick people gathering to complain. Both the women and the men appeared to have lost all will to live. I was like WTH? I’m not like these people. I still put on my make up, did my hair and dressed snazzy. I refused to let MS steal my sparkle and shine. Whatever you do being a guy or gal continue doing the stuff you did prior to MS diagnosis. If you did your hair and make up before please continue to do so. If you played Basket ball, golf or other sports prior to dx please continue to do those things on good days if you can. Don’t fall into the I’m too sick to do anything. I don’t primp or play golf on bad days but you can damn sure bet on a good day I’m doing all the things I love.
Don’t lose YOU behind being sick. YOU ARE MORE THAN MS!!!!!!
With all that being said I also encourage a healthy diet and exercise. I don’t recommend any particular diet because in my case Ive tried many different MS diets. None have worked for me. I still progressed. Some people I know do certain diets and manage quite well but in my opinion there is no cure diet. I do agree that what we put in our body is important but to say a diet cured someone of MS is ridiculous. I personally think that people that claim they have been cured of MS from a diet probably have a mild form of the disease. But thats my opinion. Do as you wish. We all need to do our own thing to see what’s a good fit.
Another piece of advice is make sure you find a dr. that you feel comfortable with. I’ve been through several. Don’t let a dr. bully you. Your fears are valid. Your symptoms are real. Don’t let anyone make you feel crazy just because they’re not familiar with your particular situation. Always remember you are paying them NOT the other way around! Be your own patient advocate. You have a mouth and a voice a deserve to be heard!
My last bit of advice is to stay as positive as you possibly can. Always remember it can always be worse. Don’t concentrate on what might happen, concentrate on whats going on right now. Life is full of what if’s that never actually happen. My dr’s have told me over and over Id be in a wheelchair years ago. Even the last dr. I left insisted i’d be in a wheelchair in a couple of years. I’m not! I do go between a walker and a cane. But I will rehab again just like I have over the past 14 yrs. I still walk, garden and play golf when I feel up to it. I’m not letting some dr. dictate how I view my disease.
I do admit my life has changed drastically, I had to leave a career I loved and lost the ability to drive for the most part. But i’ll be damned if I lose ME. I’m still Alex the cussing, silly, life of the party. I’ve learned to take things slower and rest when need be.But I never lost ME. Please don’t lose you. We’re all here for a reason. Make it count!
Some get angry because of this illness. I’ve been sad and stressed and disgusted with my progression over the years, but at the end of the day I’m grateful for the true appreciation I have for the little things. What gave me this appreciation you ask? MS thats what gave me this appreciation. People walk through life perfectly healthy and don’t have the appreciation I have for the little things. You can make your life a positive experience or a negative one. That is purely up to you. Appreciate what you do have, there is someone out there wishing they had what you have.