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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About MSAA

As a national nonprofit organization, the Multiple Sclerosis Association of America is a leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a toll-free Helpline; award-winning publications including a magazine, The Motivator; website featuring educational videos and research updates; S.E.A.R.C.H.™ program to assist the MS community with learning about different treatment choices; a mobile phone app, My MS Manager™; a resource database, My MS Resource Locator; equipment distribution ranging from grab bars to wheelchairs; cooling accessories for heat-sensitive individuals; educational events and activities; MRI funding and insurance advocacy; and more. For additional information, please visit http://www.mymsaa.org or call (800) 532-7667.

Comments

  • Angela says:

    I really needed to read this when I woke up. I’d had a bad night and an even worse morning. I take comfort in knowing that I’m not alone in this struggle. Thank you for giving us a voice to what so many of us are fighting.

    • Penelope Conway says:

      Thanks Angela. So sorry to hear about your rough night. Hang in there. Believing for a better night tonight for you… xoxo

  • Eric Nelson says:

    What an amazing article!!!! I have longed for a way to describe why I get mad or fly off the handle at times. I finally saw in words a chapter that defines my struggles. Thank you for an amazing description!!!

  • Bonnie says:

    Wow, exactly what I needed. I’ve had a really bad few days and was feeling really low. Thanks for making me feel not so alone in my battle.

  • Leah says:

    I really empathize with anyone living with ms who has depression & anxiety attack issues. I went through a really rough patch with anxiety about 3 weeks ago. I couldn’t keep food down and would dry-wretch every morning upon waking up. What a horrible thing it is to have panic attacks and not know the cause of it. My husband, my family and certain friends felt hopeless to try and help me. Fortunately, I was able to get an appointment with a neuro psychiatrist who adjusted my meds and helped me with my panic attacks. Thankfully, I’m feeling much better now.

  • Rodger Ashton-Smith says:

    Thanks Penelope I have bad days but I’m still here and it’s not going to take me! I’m trying my wheelchair in our house and it’s working somewhat. At least I can move around without collapsing on the floor and unable to get up.

  • Carla L Broadbent Rogers says:

    You are my ray of sunshine. Thank you for being there.. I want to think that even if we met under for different reasons, we could still talk and share a cup of coffee and walk thru a quiet garden. Be well.

  • Michele Roberts says:

    I was sitting on my bed a few hours ago after changing a sheet and washing my hair feeling exhausted and felt an overpowering feeling of despair and sadness
    so reading this was really helpful. The worse thing for me is the worry of losing my independence, job and freedom to go where I like and when in my car
    I also fear not being able to exercise and go with my collie to agility shows to watch her compete, as I can no longer run her myself , this is my escape to normality which fills me with joy
    best wishes to all

  • Patty says:

    I am an RN diagnosed with MS in 2012, but have had MS for 35 years by neurologist estimation. No DMT ever except for vitamin D therapy, exercise, change in diet, stress reduction, and 2 years ago started on Low dose naltrexone or LDN as it’s called. MRI shows no progression, stable MRI. I don’t know why people with MS would hesitate to go on this drug with lhardly any side effects that upregulated the immune system and helps it to work right. It is prescribed my my neurologist, but I had to go through 3 neurologist docs before finding one who thinks outside the box.

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