Go figure…..Just when I think I’m on top of the world and have everything working well (within my body), my MS comes and slaps me back into reality. I’m struggling with whether to even write this post because I hate to complain but I realize if I’m going to share my journey, I should share it all….the good and the bad. I know and humbly acknowledge that life with Multiple Sclerosis will always have its challenges but MS interferes with a lot of life and it doesn’t matter how much I try to ignore that fact, the real nitty gritty is that yes, it does. Sometimes it’s necessary to take a break and 8 times out of 10, when that is necessary, is when I least want to do it. Luckily my family is super supportive and can sometimes see when I need a break before I do. But, some days are hard – and I usually tend to make them harder than they need to be. I’m stupid stubborn like that.
The type of MS that I was initially diagnosed with in 2005 is RRMS (relapsing remitting) which means that there are attacks when my symptoms flare up called a relapse. These relapses can be extreme (I had double vision for over a month in one relapse and at another time, I lost use of my right arm, along with other severe and some less severe attacks). If you are lucky, you will come back to your functioning prior to the relapse, sometimes the damage is permanent, but usually you come back to a lesser level of functioning. These relapses can last weeks, months or longer. In most cases after 10-20 years, RRMS usually changes to a different type of MS called Secondary Progressive Multiple Sclerosis, where you won’t have relapses as often, but the disease gets gradually worse. However, both relapsing-remitting MS and different forms of progressive MS can greatly vary in aggressiveness. This means that some people can lead full and active lives, while someone else can be severely disabled by their MS. The yucky thing is that you can move from someone who is less disabled to someone severely disabled overnight. That’s the scary part for me because I have my life kind of figured out and I don’t want my lifestyle to change, even though I know it likely will eventually. Whether that is due to my MS or just old age creeping up, I’m not ready yet. Sadly, there is no cure for MS but there are medications that can help to reduce the number and severity of relapses while slowing down the progression of your disease. I am on one of these medications (Tysabri) and am confident that it (along with other things) has helped keep my MS progressing more slowly than if I wasn’t on it. This medication has been amazing for me, but it kicks the crap out of my immune system. 9 years is a long time to have your immune system wiped out. That being said, my goal is to be totally medication free and just use natural methods to manage my MS symptoms (Cannabis, essential oils, diet, physical activity, etc.) in the near future. I will get there, I just hope I will know when the time is right.
Interesting to note though is that the symptoms which have the most impact on my life are invisible, they can’t be seen. I have nerve pain, itching, pins and needles, numbness, heavy legs, extreme fatigue, muscle spasms, electric shocks down my spine, dizziness, cognitive issues and more. In short, my central nervous system is whackity! Living with these invisible symptoms can be frustrating at times. I think it’s easy to forget about someone’s chronic illness when they “look so good” but some days it just hits me in the face and I can’t pretend there is nothing wrong. Today was one of those days.
Why now? Well, to start with I have been battling a cold, I’ve had a lot of stuff going on, I had a major dentist appointment and I got over tired. This is a perfect storm for my MS symptoms. Today I am done. My body is telling me that I need a day where I just sit and do nothing, which is exactly what I am doing. I have a migraine, shooting pain, severe pins and needles in my legs and the fatigue is seriously real today and it’s not something I can just will away. I’ve always had fatigue but up until a couple of years ago, it was fairly manageable but the extreme fatigue is a relatively new symptom I’ve been having. When this type of fatigue hits, it’s crushing. I feel like I’ve blown a fuse in my body. My body feels weaker, my limbs are heavier than normal, my vision goes double or is spotty and it’s a challenge just to hold my head up. Every tiny movement is difficult on bad days. This fatigue can’t be slept away either, I find that I can only manage it with self care. Luckily for me, I have the time and space to be able to do just that. I meditate, I stretch, I curl up and chill and it eventually goes away and I get back to being my old self. I’m lucky like that, some others with MS battle this everyday, I can’t even imagine. My heart goes out to them.
So, what do you do when you are feeling like sh*& but don’t want pity? When you want to feel better, when you want to hang with the beautiful grandkids you have, when you want to get in the kitchen to create something magnificent, when you want to unbutton your shirt yourself but you know it isn’t going to happen today and maybe not tomorrow or even this week? My life has become all about modification. I have to be able to adapt for what’s going on with me. I know I just have to hunker down and navigate through it.
But for me, the hardest part of accepting my MS is my fear of the unknown. When I have rough days, this becomes an issue for me. I get scared but try not to dwell on it. I know there is no cure and sometimes I wonder if today is the day I’m going to have a relapse or where 3 new lesions pop up in my brain and I will not recover. I don’t want to be someone who uses my disease as an excuse when it’s convenient. Who am I kidding? I jokingly do that, but I don’t actually want to do that. The reality is that I have bad days and I have good days and days like today, I consider one of the bad days. While on other days, I feel like I can take on the world! At the end of the day, I am learning to appreciate how beautiful my life is and allow myself to take the time I need to be the best me I can be. Yes, I’d like to not have MS, but I do and it’s not going anywhere. I am aware of how lucky I am & that today my case isn’t more severe. One piece of advice for myself is……don’t take anything for granted and know that tomorrow is a new chance for me to have a great day and maybe, just maybe, tomorrow will be the day that I take on the world!
How do you deal with the hard days? I’d love to hear your coping strategies!
