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
Yesterday, I went with family and friends to see the BP MS150 cyclist finish their two-day ride from Houston to Austin for MS. Texas heat, strong headwinds on day one, MS awareness, 13,000 cyclist, 150 miles and millions of dollars for Multiple Sclerosis research. It was amazing to watch so many of these generous people ride pass me to the end of their journey. My journey continues and, thanks to all these men and women, it continues a little easier. The money raised is vital to the MS community. Beyond finding a cure, there are many therapies still needed. Treating symptoms of MS gives patients a chance for a better life. Pain and fatigue can often be debilitating. Foot drop, vision problems, vertigo and a wide variety of neuropathy can also stand in the way of basic function. Right now, there are only eight disease modifying therapies available and they all have side effects which are not well tolerated. Hopefully, everyone with MS can find one that they can handle. We need more options and we need to be able to afford them. Money raised yesterday will help to do that. I was able to thank a friend who rode and I’m hoping that everyone who rode along with him know how grateful MS patients, including myself, are to each and every one of them. Being there and seeing it was just what I needed when I needed it most. My faith in humanity has been renewed. There are good, selfless, generous people out there….at least 13,000 of them! Thank you!
The trial coordinator called and talked with me about a Gilenya trial. I excitedly said yes and so she added my name to her list. She told me that she didn’t see any reason I would be excluded. Of course, like always, my brain only faintly heard her words because of all the worrying thoughts that have set up camp in my head like those snot creatures you see in the Mucinex commercials. I know that before you start Gilenya you go through a series of tests to make sure everything is working right in your body, except excessive clumsiness, forgetfulness, numbness and bladder voiding. Well, I should say excessive attempts at bladder voiding because if you’re constantly going you’re not really voiding, you’re just going. Anyway, all of these things are a normal part of MS….yay team! The things they check for before starting Gilenya are heart, eye and lung problems. There may be more but this is all my brain is coming up with right now. I haven’t noticed any eye or breathing issues and my blood pressure is always low so I should be good to go. The trial should start in about six to eight weeks so, until then, I pretty much have everything crossed that can be crossed. I’m thinking positive thoughts and hoping really hard that this will happen, all while trying to kick those annoying snot creatures out of my way!