Roller coasters are fast. Obvious, right? But when people want to give a visual of things having dramatic changes they use the up & down image of the roller coaster. MS has it's ups & downs, but they don't always happen so quickly. Some are gradual and yes, the changes can be as fast as feeling full of energy and promise to take on your day in the morning to hitting a fatigue wall by afternoon. That can seem fast to some, but in the instantaneous, "I have to have it now!" world we live in, changes from morning to afternoon can seem mundane.
The changes are there. I'm learning that if I really want to accomplish anything it must be done first thing in the morning. My head is usually clearer then and my energy is higher and weakness is less since I'm rested & feel stronger. As the day goes on, the thoughts that were so fresh in my mind get lost. The "go get 'em" attitude becomes the "maybe later" pessimist. The words I knew were perfect in the morning seem lacking in the afternoon. It's frustrating.
My biggest problem are my plans. You know the best laid plans... well here is my other issue. My family. You got it. My fondest most hopeful desire my whole life was to be married to an amazing husband and have children & to be the mom I knew I was meant to be in this life. Guess what? It came true! It did and then some. I couldn't be happier with my family. I love them, as my 6 year old son says, "from the top of my heart to the bottom of my soul". It's what I've always wanted.
The thing is, they kinda get in the way. Well in MY way. I lament to people as I arrive late that I used to be in time. That "this isn't like me", but it is. It's the fact that the "me" that I refer to is the "me" before I had a family. Before I held other peoples responsibilities in my hands. That "me" is gone and even though everyone else knew it, I didn't. Nice joke, huh?
This is the "new me" who is late and who means well, but forgets she not only has to figure in the time it'll take her to eat, clean herself up and drive to her destination, but also for the "others". They are the family I wished for that stops me to ask "can you help me real quick" or "where is my shirt" or "where are you going?". If it weren't for the speed bumps I meet on the way out the door, I'd probably be on time to most things.
These little speed bumps even caused me to stop this post. I was working on it & my youngest speed bump needed help on homework. I stopped to help him & he was too frustrated so figuring he needed a break, I sent him out to play. Apparently, this did not register because he argued with me that he just didn't understand it. I repeatedly told him to go outside and he continued to believe it was somehow a trick on him. I couldn't believe it. And he kept crying which, frankly, stomped on my last nerve and I yelled. Yep. "Perfect Mom" (not my words) yelled. He needed a break & so did I. I looked at him and said he was too upset too work and should go play for a while. It seemed so simple and yet it took me 10 minutes to convince him. During this I had to save where I was on this post and come back later; 10 days later. Here I am again with attempt #2.
Back to the ups & downs of MS. The thing with MS is you have to treat your life as if it just began. It isn't like being born again, but you have been given a new label that comes with a new skin and that takes time to get to know the new you. I tell other MSers that MS shouldn't define you and you are still the same person you always were on the inside. That is very true. However, you need to also learn how the inside you relates to the new outside you.
This could be as simple as leaving post it notes to remind yourself of appointments, chores or that you have a pot boiling on the stove. It also could be as elaborate as developing a routine in order to be your best to go to a wedding you're looking forward to by napping early, having someone drive you there and arranging for assistance by the staff or a friend when it comes to parking, wheelchair accessibility and getting your plate from the buffet to the table without dropping bits of your food along the way.
The ups & downs will always be there and come without warning, but as we slowly learn and actually pay attention to the "new me" we have become, we can be proactive. There will be some patterns that can be predictable. On the flip side of that, we need to educate those around us that even the best planning can fail. MS has a mind of it's own, so plans will be cancelled, we will be late and we will be angry that it trumped our efforts. If planning and knowing our patterns were all it took then we would know how to cure this damn disease!
We have to teach ourselves, our families and friends to understand we are along for a ride and we can only control so much of it. Don't give up! Have Plan A, B & C in place for each possibility MS can throw your way. That can help. Be honest with people and yourself. I love my family and I love my life, even with MS. I'm starting to add in that extra time buffer to accommodate those last minute requests from my family. I am noticing I'm on time more often. I'm a firm believer in taking the extra minute or two if your child needs that extra hug as you go out the door. I've said that even before MS came to my attention. If I'm 2 minutes late and I gave the hug my child needed then I feel so much better than if I was on time and blew it off cuz "I didn't have time".
Pick your moments. Live your life. Help people understand and avoid those who refuse to try. Find the joy in little things and make time for the people you love. Personally, I am a person who follows the rules, but I know some rules are made to be broken. I think rules help guide people to do the right thing, but we all need to be willing to bend when circumstances change what the right thing is in the situation. My favorite motto is "Hope for the best, but plan for the worst". For me, I want to know what I will do if the worst happens, but I don't dwell on that because I focus on the best outcome. MS may present each of us with different hurdles to face, but we can learn to jump them as we go along together. Especially when we fall flat on our asses. The best friends will be by your side laughing as hard as you are or share your tears as you cry. Either way you are not alone as MS takes us up & down!
Tuesday, November 6, 2012
Monday, October 8, 2012
MS Stealing My Spotlight
Today, I am lying straight in the middle of happiness & frustration. I am happy that I am getting so many benefits from my physical therapy. I am at that point when I have regained balance and am functioning enough to feel like I can manage walking without being scared I will fall at any moment. Falling is typically in the back of my mind, but after & during a flare the road ahead is much more shaky. So I am better at my walking and my balance is much better, so now my pt moves forward with strength training along with balance training. I can feel my arms and legs getting stronger each time I'm there. It makes me feel hopeful and, well, kind of like a super hero. Really, it does. The control it gives me back makes me feel like I can take on the world and even chase MS around the corner to hide in fear. For a day or two. Not a cure, but a definite help.
So why the frustration part? I'm tired. I'm really tired the past 2 days. My legs have felt rubbery and some pain too. And my face is hot or well... weird. Over the Summer I began to notice this new MS phenomenon occurring on my face. It has been very strange. Typically, in my whole four year MS experience, I would become red on my cheeks if I became overheated. Flushed, but on an advanced level because the red would be darker than an average "blush". If I was in the sun too long, it would show like a sunburn & people would comment about it. This summer this began to change for me.
I could feel the change. I can feel my face become red. It is a weird sensation. My cheeks feel as though they are changing to rubber or something is lying across my face, like a mask. It gets a numbness almost to it, but I'm not touching it & if I do touch my face, the spot I touch loses the "numbness" for that moment. The redness not only is on my cheeks, but also as a circle of redness on my chin & forehead & nose. Yep. The clown image you are now imaging has not escaped my thoughts either. I've had people tell me I need to put on sunscreen, that I'm getting sunburned or asking if I'm ok. The feeling of my face reminds me of that tightness you feel when you use a facial mud mask on your face & it has dried all the way & is time to remove it. Except it's my actual face so it'll be staying in place.
Here's the kicker. This can happen when I'm indoors, in air conditioning & sitting on the couch. It's MS. It's my new sign. The sign that I need to slow down or that my MS is debating a flare. It doesn't always lead to one, but it is a "warning" to myself. It's happening now. Right as I type this and that's why I am frustrated. I've been taking good care of myself. If I need a break, I take one. I don't overdue it and I have been pacing myself. Today, I went to PT at 8:30am and was home by 11am and had lunch with my husband. I put my feet up to watch a show with him & I could feel it starting. the slow creep of redness and tightness across my cheeks. The heat or burn spreading across my cheeks.
The first time I felt it happening I had to stop & think of where I was. I was not moving too much or taking on extra stress. I was sitting in a cool environment and answering an email. I turned to husband and asked "Are my cheeks red?" Husband (H): "Ya, why?" Me (M): "Because I can feel it. Are my forehead and chin red too? Like 2 little circles?" H: "Yes, what's going on?" M: "MS. It's my new tell. My new sign that MS is lurking. It used to only happen if I was overheated from the weather or during some physical exertion. Since this last flare I've felt my face change and it does it at all different times now." When I'm out now & people will say, you need to get out of the sun or you have a bad sunburn. I have to ask them if my chin and forehead are red too? If they respond yes then I have to explain that it is MS and another weird byproduct of it for me.
So today, I feel like a superhero with a face of the villain after he'd had acid thrown on his face. Happy and frustrated. I will relax and take care of myself and hope that it is not the beginning of a flare because MS has taken enough time from me this Summer and as far as I'm concerned it only can have a recurring role the rest of 2012. I will be the star of my show and MS needs to quit trying to steal my spotlight.
So why the frustration part? I'm tired. I'm really tired the past 2 days. My legs have felt rubbery and some pain too. And my face is hot or well... weird. Over the Summer I began to notice this new MS phenomenon occurring on my face. It has been very strange. Typically, in my whole four year MS experience, I would become red on my cheeks if I became overheated. Flushed, but on an advanced level because the red would be darker than an average "blush". If I was in the sun too long, it would show like a sunburn & people would comment about it. This summer this began to change for me.
I could feel the change. I can feel my face become red. It is a weird sensation. My cheeks feel as though they are changing to rubber or something is lying across my face, like a mask. It gets a numbness almost to it, but I'm not touching it & if I do touch my face, the spot I touch loses the "numbness" for that moment. The redness not only is on my cheeks, but also as a circle of redness on my chin & forehead & nose. Yep. The clown image you are now imaging has not escaped my thoughts either. I've had people tell me I need to put on sunscreen, that I'm getting sunburned or asking if I'm ok. The feeling of my face reminds me of that tightness you feel when you use a facial mud mask on your face & it has dried all the way & is time to remove it. Except it's my actual face so it'll be staying in place.
Here's the kicker. This can happen when I'm indoors, in air conditioning & sitting on the couch. It's MS. It's my new sign. The sign that I need to slow down or that my MS is debating a flare. It doesn't always lead to one, but it is a "warning" to myself. It's happening now. Right as I type this and that's why I am frustrated. I've been taking good care of myself. If I need a break, I take one. I don't overdue it and I have been pacing myself. Today, I went to PT at 8:30am and was home by 11am and had lunch with my husband. I put my feet up to watch a show with him & I could feel it starting. the slow creep of redness and tightness across my cheeks. The heat or burn spreading across my cheeks.
The first time I felt it happening I had to stop & think of where I was. I was not moving too much or taking on extra stress. I was sitting in a cool environment and answering an email. I turned to husband and asked "Are my cheeks red?" Husband (H): "Ya, why?" Me (M): "Because I can feel it. Are my forehead and chin red too? Like 2 little circles?" H: "Yes, what's going on?" M: "MS. It's my new tell. My new sign that MS is lurking. It used to only happen if I was overheated from the weather or during some physical exertion. Since this last flare I've felt my face change and it does it at all different times now." When I'm out now & people will say, you need to get out of the sun or you have a bad sunburn. I have to ask them if my chin and forehead are red too? If they respond yes then I have to explain that it is MS and another weird byproduct of it for me.
So today, I feel like a superhero with a face of the villain after he'd had acid thrown on his face. Happy and frustrated. I will relax and take care of myself and hope that it is not the beginning of a flare because MS has taken enough time from me this Summer and as far as I'm concerned it only can have a recurring role the rest of 2012. I will be the star of my show and MS needs to quit trying to steal my spotlight.
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