Friday, September 3, 2010

Alone With Multiple Sclerosis

If ministry work has taught me anything, it is that this world can be a very lonely place. Even though we have more ways to connect through technology than ever before, the world can be a very lonely place. When you have a disease like Multiple Sclerosis it seems to magnify those issues at times. My wife and I were talking the other day about how our world revolves around the times that we eat. We seem to have a lot of our social time with other adults during meal times, which can become very difficult if you are following Swank's MS diet or are trying to eat very carefully. My wife has been looking into a holistic nutrition school that teaches about whole body nutrition from cooking to preparing to how our bodies absorb and use the food. While she and I were talking about this school it took us back to the times when she was following the Swank MS diet very closely. We rarely could eat out due to the restrictions, so we cooked almost every meal and wouldn't have very many opportunities to go out and eat with anyone. Sometimes this was a very lonely place to be, especially when our friends were meeting and eating together.

Loneliness seems to be one of the most difficult things to deal with concerning MS. Multiple Sclerosis affects everyone in a little different way, and when fatigue or an attack is happening, life just shuts down while your body is trying to fight its way back to normal. I know that my wife has felt like she is the only one in the world with the issues she has, and has become depressed from these moments. Sometimes I think the emotional damage done by Multiple Sclerosis is worse than the physical damage for my wife. She has had a whole range of emotions from anger to sadness to loneliness to feeling depressed. My wife has been very fortunate to be surrounded by family and friends that support and love her very much, but sometimes it isn't enough and she becomes very frustrated with the whole MS thing. Sometimes she would just like to be able to go out and run as hard and fast as she can and not have to worry about her body warring against her and having an attack. Sometimes she would like to push herself to the limit knowing that she can just get some sleep and everything will be OK, but there have been too many attacks from pushing herself to the limit that she has to hold back.

One thing we have learned from this blog is that we are not alone, that there are others out there dealing with the same issues as us. We have found kindred spirits that are fighting this disease with everything they have, and trying to live life fully. We are not alone, and I hope that this blog has shown those reading it that they are not alone. My wife and I know what it feels like to have to cancel everything because MS won the battle for that day. My wife and I know what it feels like to have to make life decisions based on how the career, home, climate etc. will affect her MS. We know what it feels like to have the pressure on our marriage of MS, to have to dig deep sometimes to not become frustrated at each other because of what kind of day my wife is having. I know what it is like to be alone as a husband and father because MS has sidelined my wife for a short time, and she knows what it is like to miss out on life because she is laid up in bed recovering. Through all of it, we are not alone, and neither are you! MS has made us stronger in our marriage, stronger as individuals and stronger as a family. Please don't ever feel alone in this battle, and please feel free to write us if you need an encouraging word or just need to vent. You are not alone!


Patrick@Caregivingly Yours said...

Well said!

Caregivingly Yours, Patrick

Anonymous said...

I just left my job to care for my mom who is in the end stage of her M S battle...I have cared for her since 8th grade it is a slow cruel thief of life. I was dx in 2004 with M S, it is the most lonely feeling in the world...I recently saw a bumper sticker that read..Until you get MS, you dont get MS.- boy thats the truths
Meghan B
Erie PA

Cory said...

Meghan, I am sorry to hear that MS is causing so many issues in your family. You are not alone, and please know that my wife and I both are here if you need to talk to someone. You can email me directly at You are not alone, and we know exactly how you feel. We will be in prayer for you and your mom.

Anonymous said...

Thank you Cory, for this post. I've been feeling alot like your wife has. It is lonely and frustrating watching my health deteriorate. But through it all, our God is an awesome God, He will NEVER leave us. God bless!

Anonymous said...

Thanks for this post! I was dxd with MS this year.
It's funny, life is so hard for me, it's hard to even get out of bed some days, and I have to deal with people telling me that THEY are too tired to come out as promised because they had a late night.
I do feel alone as I realise that after the initial care that people show you when you are dxd, people just ignore you.
But I'm doing well otherwise, the people at work are very kind to me and I have a lot of publications this year (I'm a scientist)

Anonymous said...

Wonderful post! It really struck a nerve with me as a somewhat lonely partner of a person with MS.

Luckily my partner is not bothered by solitude at all - he doesn't miss socializing much and tends to his hobbies and projects. I really want to adapt that same attitude and I believe that I can - it feels like I am getting better and better at it.

Anonymous said...

My wife has MS, and it has been a struggle. She had active MS for years before being diagnosed - the doctors guess a decade passed between her first relapse and her diagnosis. She had most of her existing limitations way before she knew why, and learned without knowing it how her body needed to be treated in order to lessen them or eliminate them entirely - all without the doom and gloom of "having MS".

Since her diagnosis, she has become resistant to heeding those ques from her body because now she knows what they are and she does not WANT the limitations. Since her diagnosis, resting and napping have gone from something she looked forward to to something the need for which she often refuses to give in to.

Since being diagnosed, the sense of loneliness despite being surrounded by loved ones, the depression, the social withdrawal - those are all now as much symptoms of for her as any numbness, fatigue or blurred vision. Those are new problems, but ones I understand because now the boogie man has a face. However, in my opinion, the way that the MS community behaves certainly makes them worse and I can't imagine that she is alone in that. For every wonderful post like this, there is a twin somewhere about the hopelessness and the darkness of it all - and more often than not those twins are legion.

There is a tendency to behave as if the fact that we are struggling with MS is an excuse to dismiss what we, the MS community, perceive to be the lesser problems of those around us. A poster above me is a great example - having to 'deal with people' who are too tired to go out as promised because they had a late night. So what? Why should our limitations becoming a mirror or a limiting factor in the life and the decisions of those around us? Why can't they be tired? How does that relate to our MS? Those two things are not connected, and if we stretch our web of sadness out that far to tangle up our friends and our families, we will never get out of that expanse of darkness and depression. The tendency seems to be to become more embittered than understanding. Yes, MS is a burden, but everyone caries a burden of some sort. MS is not an anchor, it just changes the way we have to sail our ship.

My wife and I struggle with depression, stress and sadness as a result of the weight of MS. Sometimes the fundamental misunderstandings and misconceptions held by her parents and brother drive me insane and cause me to be more short with them than I ought to be. Sometimes I fail her, and I get frustrated by her limitations. We are certainly not perfect: on rare occasions I get upset that she is losing the fight with her own emotions; and on rare occasions she directs those emotions at me without reason. That's married life with or without MS...but most times we draw strength from one another. Most times we see that the proverbial sun is shining. Most times she smiles and I remember all the reasons that I loved her before she was diagnosed with MS, and I realize that I love her more and more every day for those very same reasons, because really nothing has changed. I love her for the strength she shows when she rises above her fear and sadness and depression. I love her for her drive. I love her for her passion. I love her for her sense of humor. I love her for her kind heart.

My wife has MS, but she is not a fearful person. She is strong, and she is positive and she is happy. She has MS but she isn't defined by her affliction. She is defined by her passions; her friends; her family and her love of life.

If you're reading this, sweetpea, I love you and you aren't alone. Also, I drank all the coffee.

Cory D said...

Anonymous, thank you so much for your words. Very well said!