I’m one of those people who is not afraid to take time to talk to someone about the beast that is now part of my life. The beast is nothing that is seen upon my body. You do not see a creature hiding behind me, on my shoulders or hugging my leg. Granted at times it does feel like it is hugging both legs and even my arms. The beast is called Multiple Sclerosis.
I have blogged in the past about it and it is something I do plan on continuing to post new blog posts on in the future. I made it easy for people to find my older posts with a category titled Multiple Sclerosis.
This post is going to go into what I consider the five most frequent questions I get when I tell people I have MS. I will warn readers that I use humor, sarcasm and at same time I can be serious. You will find that within this posting and hopefully it opens your eyes to what some, not all may go thru with MS. I know from my point of view this is what I go thru. You are as always welcome to share this post if you so wish.
I always am tempted to go with the medical explanation of how immune system will attack the Myelin around nerve cells, and blah blah blah. I can just picture the glass eyed look of how I could lose someone going into that so I often explain it in this way.
“MS is like your computer, brain, giving orders to your body telling it how to do everything from breathing to walking. It controls so much of our body and many of those orders go thru the nerves. Sadly MS is like when somehow, and unknown, those commands don’t fully work. It causes all types of computer issues when you get a virus, and MS can cause all types of problems with the body. Sadly it’s not a virus it’s something science hasn’t figured out yet.”
- Did they give you a time frame on life?
This one gets me to laugh a bit. I say that as really there is no expectation on when you’ll die due to MS, if it is even the cause of your death. I mean if you think on it the moment we are born we start by taking a big breath into this world. Every single breath after that first one could be our last.
So, we have to stop worrying about when it may end but instead worry how we spend that time. Do we worry about things we cannot control? Do we let a disease dictate our life expectancy? I say NO, as for me it’s a ride and I hope to enjoy it, stay within the law, and hopefully leave a mark of positivity. If I’m remembered for anything I just want it to be that I cared, I listened and I tried to help if I could.
- Do I get depressed, or was I depressed?
You know, I think those I first told about the diagnosis where more depressed, and unsure what to do then I was. To me it was a part of life, and I was not going to let it change who I was on the inside. This comes from a battle of depression in my early college years. I learned so much about myself and add in psychology course I took I learned to let things go. Sure I can get upset at times, who doesn’t. The main difference is I at least have learned what to do to overcome.
The biggest thing about depression, in my opinion, is not to run from someone looking to talk. Do not judge them, the best thing we can do is just listen. Let them express their emotions, the suffering that has put them in that bad place. Let them give you hints on how you may be able to help instead of just saying they need to do this or that. The biggest step for someone with Depression is the fact they talked about it.
- What are some of the symptoms of MS?
This is one that is hard to answer. You see we have heard that life is like a box of chocolates as we never know what we’ll get. MS, to me, is a chocolate store. I say that as there are various versions of the disease and each has its own symptoms that can impact a person totally different then the next person.
Me I had severe nerve pain and muscle pain in my arms and legs. My arms would suddenly start contracting in on themselves and was very painful. I got to a doctor and after many tests the diagnosis came back. I still have some of the common issues that come with MS.
- I get pain at times in both my arms and legs.
- Some refer to this as the MS Hug as you get a sense someone is hugging you deeply and won’t let go.
- I also get a tingle feeling in the arms and legs.
- Fatigue is the worst one to me. You get tired and really you can’t fight it.
- I think of it as if you stayed up for over 24 hours and body is demanding sleep. No matter how much caffeine you may take to stay awake the fatigue is going to claim you.
- Vision Issues
- I have had a small loss of vision within in my left eye. I can see out of it but imagine looking thru a piece of paper with tons of little holes punched in it. There will be spots you can’t see and that’s my left eye.
- Concentration Issues
- This doesn’t happen all the time, or too often. I believe this is why I am one who enjoys the challenge of multitasking. It helps me bounce from project to project and back again. It can be a pain though and when it’s bad, well that’s what a “To Do” list is for.
- There are a few other things like I’ll get some numbness in my right leg/foot at times. It’s nothing to major but it does happen from time to time.
- Emotions can be impacted as I have found I tear up while watching a movie for no reason. It maybe something I’ve seen for years but boom it happens.
- Bowels, well I won’t go too much into this one as don’t want people running away going…..”EWWWW”. I’ll just say that when I have to go to the bathroom, sometimes it’s important I get there. Thankfully I have not had to buy a lot of new underwear or pants. HA HA
- Anything I can do to help?
I do like this question but I got to say it’s the hardest to answer.
- I mean those who ask I’d love to tell them sure, take this thing from me. However, I know they cannot and to be honest would not wish it on them.
- I’d like to go sure, got some money I can have? I mean before I got good insurance bills hit hard. Those I have joked with about that will say set up a Go Fund Me page or something. I just can’t do that, I think it’s my pride and well I keep finding a way to make sure bills, and mortgage are covered. Granted got to say at times…….well…..yeah. (Insert a smile here ha ha)
- What can they really do most is do not feel sorry for me. I try to lead by example. I do not want someone feeling sorry as its life. As I mentioned before I am still taking a new breath and my time has not come. We live in a world of challenges and do not let the petty and stupid guide your life. Agree to disagree and continue being a friend. Agree to know what topics may be off topic and leave them out of conversation. Most of all understand I never been one to really put myself out there. In truth this blog is my way to do that, and I know I’ve lost many of friends in my life due to this part of myself.
I’ll add that MS is like many other diseases in the world. It does not matter who you are, where you are from it will impact people of all kinds. Some are more than willing to talk about MS, and others treat it like depression and hide the diagnosis. I personally do not care how one deals with the diagnosis as long as they DO NOT GIVE UP. I’ll end this very long post with the one quote I often say to people.
“I may have Multiple Sclerosis but is DOES NOT HAVE ME!”
- National Multiple Sclerosis Organization
- Multiple Sclerosis Association of America
- Multiple Sclerosis International Federation
- You Don’t Know Jack about MS –Jack Osbourne and Teva Neuroscience for those newly diagnosed with Relapse/Remitting MS (which I have)
- Above MS – From Biogen
**Please note all copyrights/Trademarks are owned by their appropriate person, company. I make no claims.