I want to believe

Many times trying to explain the difficulties of living with a chronic progressive disease is met with a blank stare or opens the door for lots of unwanted advice. Just the concept of someone being both chronically ill and progressively ill can be hard for some people to comprehend. Add to it all the symptoms that MS causes—you know the pain, numbness, weakness, vision problems, dysfunction, emotional distress, breathing difficulties—and you find it’s a topic the general population doesn’t seem capable of discussing.

They don’t seem to understand how you can become so weary in the daily fight with multiple sclerosis that your emotions can literally go bonkers causing you to cry at the drop of a hat, but that doesn’t mean you’ve given up on life. Or how today you prefer chillin’ in bed watching a marathon of The Beverly Hillbillies on Netflix over an afternoon out with friends, but that doesn’t mean you are being anti-social or won’t want to hang out tomorrow. Or how you actually want to discuss the possibilities of what might happen to your life in the future and find it comforting to be prepared for the “what if’s” of tomorrow, but that doesn’t mean you are focusing on the wrong things and need to stop thinking about how bad things can get.

Just because I may have a bad day or be in a bad mood one moment doesn’t mean I will be feeling that way later on in the day. There’s a lot going on in my life right now and sometimes talking about it is the best way for me to process the overwhelming flood of emotions that seem to swallow me whole. Talking about it actually helps me come to terms with my reality.

For me, it seems the people who are willing to listen during those down moments and allow me to vent, they are the ones I want to have around. There’s no judging, no placing blame, no advice giving, just a listening ear, support and care. That’s really what most of us want anyway…someone willing to listen and maybe cry along at the sad moments while throwing in a laugh or two to break up the darkness we find ourselves getting caught up in.

The truth is, we want to believe friends will be there for us when we are at our lowest and that they will allow us to vent, complain, cry, ponder and question. We want to believe a cure for MS is just around the corner and that we will find ourselves in a perpetual state of remission. We want to believe today is the worst day we will ever experience and that only good days are ahead for us. We want to believe we will live to be 100 years old, happy and have experienced a life full of joyful moments. We want to believe, hope, and fight with the strength of a thousand warriors…but many times we fail.

When we find ourselves down and at our lowest, it’s then that we simply want to be understood. Will you stand with us when we cry, hold us up when we wobble, and encourage us when we grow weary? MS is not a disease that can be fought alone. It takes the support of friends and family. We need each person in our life to help us in the fight.

Together we can believe for greater things. Together we can overcome the emotional rollercoaster. Together we can do the impossible.

MS Gets on My NervesMS WarriorMS Superhero  

About the Author

Penelope Conway

Penelope Conway
Penelope started Positive Living with MS as a way to help others with MS stay positive in the midst of a terrible disease. 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. Multiple Sclerosis may never go away, but neither will her determination and her drive to help others through the journey.

38 replies
  1. Sarah
    Sarah says:

    My MS hasn’t been the hardest, it was my parents feeling sorry for themselves and not talking to me anymore because I had so many doc appointments and medication changes they blame themselves and if you don’t talk about it well it’s not real, my friends for all the years of saying I was tired have moved on, I didn’t give up I was overwhelmed and no one wanted to hear, so I cried to my boyfriend, and put a lot of pressure on him he didn’t deserve, it’s hard alone, but it’s been just me for a year with no DMD’s, and learning myself my triggers so when (finger crossed) the right people come into my life maybe I’ll be better prepared to know I’m not crazy.

  2. Aileen Brown
    Aileen Brown says:

    Needed this today as so far it’s been crap and I am feeling sorry for myself – home alone so nobody to feel for me right now but will be better later as son and 2 youngest grandchildren come for tea every Thursday and that makes me feel good even in a bad day

  3. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    That’s a very good statement of how I was before MS and thankfully it hasn’t changed. I don’t have a lot of ‘friends’ around but those I have are supportive of me and my wife. we have gone through a lot together and are not going to leave each other for nothing. she has just done a survey from NARCOMS about partners with MS but I don’t think even they can see that 2 disabled people can live together in the same house. But I have been with her for 37 years and we have helped each other through a lot of horrendous situations so MS is not so bad to deal with most of the time. I have learnt that fixing problems is not the case for friends. I learnt that we I was dealing with fellow members of our drinking ‘school’ back in the 70’s and I helped some who got really sick and nauseous. This surprised some who couldn’t grasp the feelings I had for these people. So when we had trials through our life I had to relearn this when comforting Janice through a series of medical mishaps during the 80’s and learnt that the hospital system is good but lacks (like all of us) information to heal people well. So when i was diagnosed I was almost a relief that something was diagnosed. Now I still learning how to deal with it and learning new ways to live.
    But we still need someone to talk to and someone to comfort us in our time of need.

  4. Glenys Jackson
    Glenys Jackson says:

    Understood. I usually try to laugh inside rather than cry, and I think many of us do the same – simply because the idea of giving up is even more depressing. Keep at it, you help us so much by sharing your thoughts!

  5. Tiffany
    Tiffany says:

    You nail it every time Penelope 🙂 Keep going cause I LOVE every post you do :):):) I wish my husband could understand my MS better but you do, thank you 🙂

  6. Geraldine Lowrey
    Geraldine Lowrey says:

    PT & OT visited me. PT left me with exercises to do 2x daily. I already felt more energy after doing them once with her. OT observed my movements and will return Friday with equipment to try out. I have a poor memory but I do remember this: No more vacuuming! I can dust – drat! – prepare meals and light cleaning but no vacuuming. He’s afraid I’ll lose my balance and tip over potentially breaking something. I see this as a plus to having MS. I’m still crazy after all these years!

  7. Luisa Vidal
    Luisa Vidal says:

    Spot on it’s sad when people around you don’t even want to hear it I feel so sad when your children don’t even pick up the phone and say how you doing lonely one

  8. Valarie Ann Hartnell
    Valarie Ann Hartnell says:

    Thank you again for a very good read. I can always relate to the words you say and how you say them! I feel better mentally as I smile and say to myself this lady knows and this lady understands me!

  9. KT
    KT says:

    Thank you for your words. It seems that most people want me to be fine and doing well so it doesn’t interfere with their “perfect existence”. They don’t seem to comprehend that it can’t just be turned off so they don’t have to feel bad when they don’t feel like dealing with it. They also don’t seem to recognize that they aren’t the ones dealing with it. I am. My husband is. No one else is put in the middle. I very rarely try to talk about it. But when I can’t talk well, think well or walk well, they turn and walk the other way to avoid me. I wonder if when they bolt in the other direction if they ever stop and think how blessed they are that THEY can walk so well.

  10. Dona Purdy
    Dona Purdy says:

    Understood. Can’t stand the “advice” from those who don’t understand. Like being told I should move to Akaska because I don’t want to sit outside at a restaurant at lunchtime..I live in S.FL…A/C is necessary.

  11. Leslie Beaver
    Leslie Beaver says:

    True in most ways even for those of us not diagnosed with primary progressive. As people like me with relapsing remitting secondary progressive have daily struggles, realities and low points.

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