As I write this, we are in the midst of some warm days, temps in the 80’s with high humidity. You know, the exact kind of conditions that can make having Multiple Sclerosis a living hell. There are plenty of articles out there about the effects of temperature on those with MS, so that’s not really what I’m discussing here. In fact, temperature change is just one of many triggers that can adversely affect those with this disease. Rather, I want to talk about one of the net results of days like this, namely the frustration it causes. When I have a string of rough days, whether it be because of heat, or stress, or any number of situations that can worsen my symptoms, I get absolutely fed up! There are many times where I put on a brave face and carry on like nothing is all that bad, but the reality is that I am sick and tired of being sick and tired.
Not to complain, but…If you are at all like me, then you likely hate the idea of people thinking you are complaining. After all, everyone has something to complain about and no one is as special as they likely perceive themselves. I certainly come from an ethic of “just put your head down and carry on”. It’s a feeling that I constantly battle when trying to write about this disease. The last thing I ever want is for people to think that I’m complaining. At the same time though, I hope that pieces that I write allow others to say, even if just to themselves, “OK, this guy understands, he has the same problems”. I hope that reading what I write helps assuage the b*tching that others desperately want to, but can’t, do. So please allow me to take off my happy face for a few moments and indulge in some frustration.
Multiple sclerosis sucksThis disease sucks. There, I said it! I’m tired of dealing with this disease, with this entire life. I’ve been diagnosed for nearly two decades at this point, and it’s not getting easier, it’s getting harder. I guess that’s sort of a given with an incurable and chronic illness, but I guess I never really thought about that too much in my past. I know there are some people that have a relatively mild course with MS and some that have a much more progressive version, but there are a lot of folks right in the middle, like me, too. I do not move as well as I once did, I am in pain nearly every day, I fall frequently, I get confused, I forget things, and I’m fatigued (oh man, am I fatigued!). Bottom line, this disease has made my body a very hard one to live in day in and day out.
The time dedicated to MS-related appointmentsIt’s not just the physical toll this disease takes on my body, it’s everything else that goes along with having a chronic illness like MS! The many doctors’ appointments, the many hours of just waiting to get into the doctors’ appointments, the numerous MRIs, all the blood taken, the therapy appointments, the waiting while getting an infusion, etc. There is SO much time dedicated to not only the critical maintenance needed with this disease, but with waiting for all of those appointments. So many people don’t realize just how much time is spent with these kinds of things. I don’t know about you, but all of that frustrates me. I’m left thinking, what else could I be doing with all of that time? That is, what could I be doing with that time, if I felt good?
Bad days with MS: I need a vacation from my body!Between the way my body feels/behaves and all of the effort I have to spend to keep it going (seriously, I feel like I am constantly patching holes in a boat, only to have two more break open every time I get one patch completed), I’ve just had enough. I’m sick and tired of being sick and tired. I want a vacation, not to some great resort (though that’d be nice too), but from my body, from my life with chronic illness. It feels so overwhelming at times and being who I am, I tend to just bite my lip about it. Even when I write about my illness, I often try to find something hopeful to mention about it. Some days, like today, that just doesn’t feel right. So I don’t have some hopeful, feel-good advice to preach to you today. This sucks, it probably sucks for you sometimes, too, and I get it. I hope our days are better tomorrow, but even if they’re not, remember we’re not alone in this, this sucks for a lot of us.
Thanks so much for reading and always feel free to share!