Sometimes Living with Multiple Sclerosis Can Get Overwhelming

By Penelope Conway

I want to talk about the elephant in the room. No, not a physical elephant, silly. I don’t think one would fit through my front door. I want to talk about depression among people living with multiple sclerosis.

Many people don’t like talking about how much a person’s life changes with an MS diagnosis or how much their life is actually spinning out of control. It’s hard facing the MS monster at every waking moment. Sure, someone living with a mild case of MS or who has a stable progression may think I’m crazy to even bring the topic up, but just because people aren’t talking about it or are choosing to hide their struggle, doesn’t mean it’s not real.

The reason depression happens is because our symptoms continually progress (meaning they keep getting worse), making life increasingly more difficult. We face things like numb body parts, fatigue, dizziness, vision loss, pain, emotional changes, decreased mobility, and lack of understanding from others. We lose jobs, friendships, financial stability and independence. There are countless challenges in every day, and as time passes they only worsen.

Personally, I have experienced changes to my body and feel them with such intensity that it’s hard to even put my disease progression into words. I can actually feel the numbness, pain and difficulties creeping up my legs, arms and my entire body as the day goes on. One day it was just my big toe that I couldn’t feel and the next it was my entire leg.

Coping with something that continues to progress over time brings on feelings of hopelessness, stress, despair, and a host of other mixed up, chaotic emotions. All I ever wanted was to fit in and have that carefree life that MS stole from me. Is it any wonder that depression happens? I mean, who wouldn’t get depressed knowing that their body was destructing from the inside, out?

There are times when it’s easy to face the challenges in a day, but sometimes it’s a battle between sanity and trying to hold on to hope for a better tomorrow. It’s when hope begins to fade and all that’s left is pain and confusion, that’s when the tears start to flow and depression rears it’s ugly head.

You may see me smiling, hear my laughter and admire my strength, but in actuality those things are covering the pain that doesn’t often get talked about…both emotional and physical pain. My smiles are real, but so are my tears. I have found that if I allow myself time to cry, the weight of everything I carry gets lighter. It’s much like a pressure reliever. I cry, vent, then take a deep breath, dry my tears and face the day. Just that little bit helps.

I also take an anti-depressant because I found myself crying all the time, even when there was nothing to cry about. I would cry over the silliest things too like forgetting a word or dropping a cup of water. Yes, me, the positive one.

I needed help and reached out to get my whacked out emotions under control. MS doesn’t differentiate between which nerves it’s going to mess with so when the nerves that help us manage our emotions short circuit, know that it’s just another part of a living with MS and that there is help out there. You don’t have to go through it alone.

If you are having a wonderful day, please don’t criticize someone that isn’t. Enjoy your day and share your sunshine with others. If you’re feeling defeated and frightened of the future, reach out to those around you for help, and if they won’t listen to your pain, questions and doubts, don’t be too ashamed to make an appointment with your doctor to talk about what’s going on.

Life may not have turned out the way you expected, but you have a story to share that can help  people cope with the unplanned and unexpected. Talk about what’s going on with others. It’s time to let go of holding on so tightly to a life that once was and start living the life you have now, today. Take things one day at a time, and if needed one minute at a time.

*Penelope Conway was diagnosed with Multiple Sclerosis in November 2011. She is the author and founder of Positive Living with MS (positivelivingwithms.com) where she uses humor and her own life experiences with MS to help others navigate this unpredictable journey. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day.

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Dealing with Symptoms of Depression: Sports Car to a Jalopy

By Lauren Kovacs

This is kind of a touchy sticky subject for many. Depression is often brushed aside like sugar from a donut. We see it on the table and we brush it onto the floor.  It might be out of the way for the moment, but you only moved it.

MS has so many issues.  For me, I knew when the MS was changing and I could not deal.  I was losing control of my own body.  I went from a college athlete and very active to a total mess, after 18 years.

I was very angry.  I felt lost.  Something snatched my body.  Smashing plates helped, but then trying to replace the dishes I broke was too hard.

I started seeing a talk therapist and I talked a lot.  Just letting me have diarrhea of the mouth helped me cleanse my soul. Trust me, the mudslide was thick.

After about a year of just surfing the talk therapy wave, I was ready to try a tiny bit of medication.  I am not one to turn to medication, but daily crying was too much.  I was drowning in a mess and that was 100% not me.

I tried one anti-depressant and the heart palpitations and rage were so bad that I refused to try another. Six more months of daily crying was messing with my hydration. In addition, it took too much effort to apply eye make up only to then cry it off.  I agreed to try another, reluctantly.  I am very stubborn.

This particular one worked. It was just enough to help me attack the day. Before I take it, I notice I have a very defeated attitude.  After I take it, I am back in the game.  Put me in coach.

Symptoms of depression are complex, like anything with MS.  Anything weird warrants a mention to the doctor.  Telling mine was not easy. I did not like telling her about my dish smashing, but I know my “what’s the point?” comment helped her understand.

Medication or therapy may help; they may not. I find MS to be very trial and error.  What helps me may not help another, but most MS people will try something new.  Any “snake oil,” as my husband calls it, might work a bit.

Be open to telling someone your pain.  Be open to maybe trying something.  I was locked in a battle with depression that I did not have to fight.  Take a deep breath and evaluate.

Try and hold onto the MS wave.  Your body may need a bit of help.  I now have to wear a life vest in my own pool.  Yet one more thing MS took was my ability to swim.  I was depressed by this fact.  Now, it is a challenge.  I attack buoy-training head on.

Depression comes and goes with the ebb and flow of MS.  Don’t let it go, if something is getting you down.  You might need a life vest.  It can be embarrassing to need some help, but it is better than drowning.

MS folks live with constant loss.  Loss can be depressing.  I went from 60 MPH to about 10 MPH.  Going from a flashy sports car to a busted up jalopy is frustrating.  Mourning the loss of self is sad.  It can be tough to find yourself in the mud-sidle.  Keep looking.

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