It’s Always SOMETHING
I think this is more of an issue for people who just don’t have their multiple sclerosis (MS) “under control” but I don’t know, maybe not? For almost 2 years now my MS has just been crazy; I feel like my MS is a team of horses pulling a carriage, which in this analogy is “me”. The coachmen, or driver, would be my disease modifying therapy because the job of the coachmen is to control the horses and keep them going in the right direction. Because I have been in the process of trying to let Lemtrada do it’s thing it feels like my horses are just running wild with the carriage still attached with no driver to control them. What should be a relatively smooth ride is instead terrifyingly rough and bumpy and I am never sure if the next turn will be the one that sends me flying into a ditch destroying my carriage by which I mean my body. In this crazy ride that is currently my life I feel like there is always something wrong, always something to complain about, I never can seem to catch a break, it’s always SOMETHING.
I really do not like to complain; maybe it’s the sense of pride that I got from my Dad’s side of the family? Before MS, if I fell? I was always “OK” even if something really hurt. Blood everywhere? “I guess it kind of stings a little but it’s really not that bad, it looks way worse than it really is”. I always downplayed everything because even before MS became a huge part of my life I hated accepting that I needed help. I guess I always wanted to be as independent as I could? Ironic that I would eventually be diagnosed with a chronic disease that basically slowly tries to take your independence away… Life is a constant battle to maintain every bit of independence I have even if sometimes that means just making my way downstairs and pouring myself a bowl of cereal.
Well even though I have always hated complaining the last two years or so have really sucked because my MS has been so out of control. It seems like everyday something is wrong, as in, there is always something causing me to not feel well. Fatigue, dizziness, nausea, pain, balance, cognitive issues, weakness, insomnia, bladder issues, depression, noise intolerance – the list goes on and on! I have felt like all I have to talk about is negativity and I slowly realized that I was just complaining and complaining! It was always SOMETHING! I could not stand to listen to myself anymore; I was becoming everything I did not want to become when I was first diagnosed with MS. So slowly I stopped blogging on my personal blog because I did not want anyone to associate my blog with complaining. I didn’t want my URL to be a direct link to a pity party…
In a few weeks I will be doing my second (and hopefully final) Lemtrada infusion. I am really hoping that this will be a turning point for me, that the year 2017 will be when things really start to look up in my life. Not just because of this treatment but also because I really want to take back control of “my carriage”. MS should not dictate our lives but instead, influence them. I don’t think we should just look at life with MS as a “just along for the ride” kind of thing, we should still be able to steer life more in the direction of something we want. It may not be that easy but it is that simple. I know what I have to do to make that a reality but the hard part is actually doing it. Exercise, diet and keeping my brain active, all very simple ideas but at the same time not very easy tasks when dealing with the struggles MS brings about. I think the key is self-discipline. “I really just want to sit around and just watch TV but I know I should be doing all my daily exercises”. “Oh man, that pizza looks so good but I told myself I am going to follow this diet so I have to be good and have a salad”. It’s kind of difficult sometimes but I do believe that I have the power to determine what my life will be like in the near future by making small changes now. I know there are a lot of things we cannot control but at the same time there are a lot of things that we can. I really want to change my life so that I am not always focused on how “it’s always something wrong” but instead on how “there is always something right”.
If there is one thing that we can control it’s our attitude and that determines whether we focus on all the negatives in life or all the positives.
How well do people around you understand MS?