I think most of you reading this already know that I have had Multiple Sclerosis since I was only 19 years old. Living with MS for 21 years has not been easy, but I also try to not let it get the best of me. There are always going to be good days and bad days with this disease. Over the years, people have asked me various questions, which some do not bother me at all because I think that means people want to gain knowledge. However, there are other types of questions that do bother me tremendously because the questions show how inconsiderate and cruel people can be.
In this post, I am going to tell you the questions that are hurtful and why I feel the way I do. I am also going to share a few things about this disease that are hard to live with.
One question that always gets to me is, “Why do you not go on disability?”. The reason this question affects me the way it does is because I have always worked and without restrictions. There is no logical reason anyone should think that I need to be on disability because my MS has not progressed to that level. Do I know if it will someday? Absolutely, not because I do not have a crystal ball that sees the future.
Another question that rubs me the wrong way is when people ask me, “What did you do to cause it?”. I mean, really who would ask someone a question like that? In the beginning, when someone asked me this I would wonder if there was something I did wrong and then it would send me into a tailspin of negative feelings about myself. No matter what the disease is, most of the time the person living with it did not do anything to cause it and this is very true with Multiple Sclerosis. The top doctors and researchers in the world, still do not know what causes this disease to happen.
This next question that I find disrespectful and vicious is, “Do you think this could all be in your head?”. My response is normally not pleasant or polite, but I do not think they deserve a nice response. I simply say, “Yes, this is all in my head. The numerous lesions in my brain do cause many issues that I must deal with daily. Maybe you would understand if you had even half of a working brain cell.” I told you my response was harsh, but how do you think I should answer a question like that?
Another question I have been asked that bothers me immensely is, “When do you think you are going to need a wheelchair?”. This question used to bring me to tears because it was my #1 fear when I was diagnosed. As I said, I was only 19 years old and might have still had a partial childlike mind plus, I did not know much about the disease, and I was terrified of a wheelchair. During times when my legs and feet are at their worst with pain and the annoying tingly sensation, this thought does enter my mind again. It is hard to not think this might be something I have to deal with in life, but it is not going to happen anytime soon, or at least that is what I hope for.
Multiple Sclerosis comes along with the pains of different types and severities. After living with these for half of my life, I tend to expect them. Most days, my pain levels are manageable, and I can try ignoring them. However, as the days progress the pain increases gradually. Since I am so used to pain, I often have said if there is ever a day or even an hour when I do not hurt, I would think I died and am on a cloud still comfortably. My life would not be the same without the constant pain, but it would be amazing to have a few minutes with NO pain at all.
The migraines that happen at least once a week are brutal and even more ruthless when they are accompanied by a sinus headache. I do know that migraines are one of the symptoms of MS and sinus issues are a side effect of the medication I take. There is not anything I can do to end these. I cannot stop the MS from being in my body and I cannot stop taking the medication because then the disease would progress and possibly quickly.
Neuropathy is an incredibly annoying symptom of Multiple Sclerosis. The feeling of spiders having a party on my legs and feet is irritating, to say the least. This tends to happen more during the evening hours, which includes times when I am “trying” and failing to sleep. The past few days, the neuropathy has not been limited to the evening hours and instead has been all day long dealing with the spider party. The crazy thing is a heating pad is the only thing that offers any kind of relief and yet, heat is also something that makes the MS flare up.
The final symptom of Multiple Sclerosis I deal with that is mildly obnoxious is fatigue. Everyone experiences fatigue from time to time, but I do on most days. The awful part about this is, even though I get extremely tired halfway through the day, I also at times cannot sleep. My guess is the reason I cannot sleep is because of the pain and neuropathy.
There are many times throughout the days that I wish Multiple Sclerosis did not exist, but it does and affect millions of people around the world. I think it has increased the strength I have to fight against it and every other difficult time in life. I have always been the type of person that does not allow anything to defeat me, at least not easily. Over the years, I have met many other people living with this disease and been able to offer them support, which makes me happy to help someone else struggling.
Thank you for visiting my site today. I am sorry this post was a longer than some of my others, but there was a lot to say about fun times with Multiple Sclerosis. I hope you found what I have shared helpful, and I look forward to reading your comments. I will respond to all of your fabulous comments as quickly as I can. Hopefully, your weekend has been wonderful and safe. Please never forget that I am always sending y’all LOTS of love, comfort, support, and MANY positive vibes!