Christmas this year is proving to be difficult. While Christmas pasts have held some level of mental fatigue in both the years before MS and the years since, I have never been denied any of my Christmas physically…until now. The weekend after Thanksgiving is when we decorate. There are three Christmas decorations that are a part of Christmas that really matter to me and are traditions that I don’t want my family to be without – the tree, the Nativity and the mantle. I know these things are not the important parts of Christmas but, as a mother and a homemaker, they feel important to me. They are my contributions to my family’s Christmas. Unfortunately, my body is having no part of Christmas this year and decided to take it out on the tree first. Whether it was trying to balance on the ladder, keeping a breakable ornament in my hand and off of the tile floor or being able to use my arms and legs long enough to get things done without going numb I failed. After a few days, I naturally began to stress and feel guilty that it wasn’t done which only makes it worse. While it isn’t certain if stress can cause a relapse, it does worsen symptoms and can do so rather extremely. This made for a rather pathetic cycle. It took me almost two weeks to finish our tree! I still have to get the mantle done which isn’t anywhere close to the job the tree is and the Nativity is really just a matter of finding the right storage box but I know that it isn’t going to get done today and most likely tomorrow. As I was feeling pathetic getting the tree completed I kept seeing the Charlie Brown Christmas tree and every time my body failed in someway I saw Lucy pulling the football away just as Charlie Brown was going to kick it.
…that’s draining me into a lump on the floor. Seriously, I am so tired and not normal tired, MS tired which is normal tired on either steroids or crack-your choice. I haven’t written in over a month now and I feel it mentally and emotionally. There is therapy in writing whether it be journaling, letter writing or blogging. I’ve missed this and I have chosen to blame the heat for its absence. I’ve never asked my doctor why the heat affects people with Multiple Sclerosis so greatly and why our fatigue is so bad. What is happening in our bodies that makes these so? I figure inflammation plays a part but what else? I need to remember to ask this next month. “Remember”…..that’s funny.
There are some awesome things and tricks I’ve learned the last few years that really do help with the heat: * Ice behind the neck (my personal favorite!) *Putting wrists under cold running water or against ice packs *After a shower allow hair to air-dry while laying on the bed with the ceiling fan on high *Freeze juice in ice-cube trays to munch on throughout the day *Tell yourself everyday that summer doesn’t last forever
Today is World MS Day. It doesn’t feel like much to me because it was just MS Awareness Week and MS Month. There has been a lot of awareness and money raised recently and that makes me more than happy. I have a lot of friends who made facebook posts and sent emails about MS symptoms, statistics, needs, hopes and dreams. I’ve decided to take the day to try to plan my year until the next World MS Day. What I see ahead of me is hot weather, graduation, birthdays, even hotter weather, goodbyes, holidays, a much awaited fall/winter, a new year and a beautiful spring. I wish I could include something exciting or even different about my MS but I’m thinking it will stay how it is now- Copaxone, more lipoatrophy, fatigue and cog fog. Oh, and my face will be numb at least a third of the year….seriously. I know this is all really good and I should and will be grateful if this is how it all plays out. I’m just ready for a new therapy. My insurance situation is changing again and this may allow for a change but I don’t want to get my hopes up. So, I will be happy if I get to move away from injections but happy if I don’t because that means my disease is stable. I am going to embrace the heat this summer because near the end of it comes a bittersweet goodbye. I’m looking forward to the holidays and birthdays because they are always fun. I’m actually use to having a numb face so maybe I should start having my eyebrows waxed? That would be a plus of having a numb face. Always try to find a silver lining….
I think it’s safe to say that people with MS are always looking for ways to feel better. Pain, numbness, memory problems and especially fatigue can be debilitating at times and always annoying. There are several medications to help with MS symptoms and they can be quite effective but, before I take that leap, I’m going to try the hard way first…..I’m saying goodbye to sugar. This is going to be extremely difficult for me because sugar is highly addicting and I am a self-proclaimed, hard-core sugar junkie. I not only love the stuff and all the pretty, fluffy, decadent ways it whores itself out to me, I crave it daily. I’ve been told and have read several times that sugar can increase MS symptoms, especially fatigue. I want to feel better than I do now so I’ve decided to take the plunge. I’ve started with only a little sweet creamer in my morning coffee and a little agave in my oatmeal. I’m sure to a lot of people this is still a lot of sugar, especially to someone who has taken “the plunge”. Well, for me, this is a huge change! Next week, I’m going to be completely sugar-free with my coffee. Harder, will be eating my oatmeal plain. I don’t like the taste of artificial sweeteners and don’t think they’re very healthy so that’s not an option for me. My hope is to get to the point where sugar is a rare indulgence. So, here I am, saying/writing it out loud, putting myself in the spotlight and hoping that this will help me to stay the course. Wish me luck and I’ll share this part of my journey in case it’s something someone else is either considering, doing or has already done.
Pretty much everyday I am fatigued by three in the afternoon. I say fatigued instead of tired or exhausted because “fatigue” is something special for people with MS. Not special in a good way, but special in the way that if you’re not part of our club you can’t really understand it. When I say I’m fatigued I’m saying that my body isn’t functioning correctly. It’s always my arms that bother me the most. They feel kind of like rubber and have almost no strength. I’m lucky if I can fold a load of laundry with them. There’s usually some numbness, zaps and zings but that’s almost unnoticeable next to the rubberiness. My legs get rubbery too and standing too long can be difficult. It’s actually harder than walking because with walking I’ll occasionally get “drop foot” (another club term) but the way my legs feel from standing too long is almost unbearable. Still, the arms are what I’m the most frustrated with. I feel like they’re letting me down the most. It’s all about dinner. I can fold laundry a bit at a time and any time of the day I want. Dinner is always sometime between six and eight at night-well past three in the afternoon. So, we eat out and order in quite a bit at my house. I know this isn’t the healthiest way for me and my family to be eating but it’s still the way things happen. I hate this. I am a stay-at-home mom and part of my job is feeding my family. I’m failing. Tonight, a friend told me that they rarely go out to eat. I know they don’t do this for financial reasons. They do it to be healthy. I hate it all even more which I really didn’t think was possible. So, I’m looking hard at myself and wondering. Am I just Lazy? I’ve searched and found slow cooker recipes online and have bought cookbooks with easy recipes. I use to cook all the time so I have no shortage of recipes when I add my new finds to what I already have. I thought that if I had really simple recipes and slow cooker recipes that could be thrown together early in the day when I wasn’t so rubbery I’d be back to cooking most of the time. It isn’t happening. I use to not feel bad about all of this because I chose to give myself a break. I have MS and if I’m not cooking dinner it’s okay, I’m allowed to not cook dinner. Well, now I’m just feeling lazy. It’s not enough anymore for me to know that the person telling me that they rarely go out to dinner doesn’t have a clue about how MS feels and if they did they wouldn’t be telling me this. My fatigue is the worse part of MS for me right now. I’m still hoping that it will get easier but it’s getting harder to hope for it. So, all I can really hope for is to not be so lazy. I’m putting it out there- this week we will only eat out or order in three times. Even if I’m the only one who reads this, it will still be embarrassing to me if I fail. I’ll have to come back here and write that I wasn’t able to prepare four dinners for my family this week. I feel embarrassed just writing it.