Each morning I wake up to a fight with Multiple Sclerosis

Sometimes thoughts about my possible future get carried away causing me frustration, anger, loneliness and fear. I know they say not to keep things like that to yourself, but how do you explain thoughts and feelings you are having about a disability to someone when you don’t even understand them yourself?

Now mind you, I don’t live in a constant state of hopelessness or fear, but it’s something I fight regularly. That’s just me being real and telling it like it is.

Each morning I wake up to a fight. Some mornings I punch multiple sclerosis right in the face knocking it out cold. What a victorious feeling it is to wake up to a win in the ring. Those are amazing moments. But regardless of my strength and skill—something I’ve gained over the years—MS has been known to dodge my punches and come in with an upper cut that sends me to the floor seeing stars. It’s those days when hopelessness becomes a reality.

I know people care about me and about what I’m going through, and for that I’m extremely thankful, but sometimes the feelings of hopelessness overwhelm me to the point of despair regardless of who’s standing with me. I admit I have wanted to run away more as an adult than I ever wanted to as a kid. But where do I run? There’s no place to hide from MS…or the world for that matter.

If you have ever felt that way, I want you to know that you are not alone. When I’m having a tough time with MS or life in general, I find journaling helps. It’s an easy way to vent…getting all my feelings out without anyone talking back or misunderstanding what I’m trying to say. Maybe talking to your dog or a goldfish would be just as therapeutic. I haven’t tried that but, hey, anything’s worth a shot.

How do I journal? I take time each morning to write my thoughts down. I choose to write without stopping regardless of grammatical errors or confusion, no matter how random that may be. I simply allow my feelings to spill out onto the page. I rant, vent, and scream in written words. It used to be easy to do that with a pen and paper, but now I use dictation software on my computer to do the writing for me since my hands don’t work so well.

There have been times I have gone back to read what was written and sat staring at the page in confusion because the words made absolutely no sense. Not because the software messed up writing things out, but because I was talking in circles and going down rabbit trails. Regardless, I feel lighter and that’s what matters.

You would be amazed how much it helps to voice things and just get everything out. It has been better therapy than anything I’ve ever done. At least it’s been working for me. Maybe it could work for you too.

There is life outside of MS, I promise you. You won’t always have bad days even though at times it feels like it. Don’t let your thoughts ruin your day. Take charge. You hold the reigns and get to choose what hangs around in your mind.

MS Gets on My NervesMS WarriorMS Superhero  

70 replies
  1. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    Thanks Penelope great thoughts today. I have found the wheelchair has given me a lot of freedom I can’t get from sticks or walking frame and I should have taken it earlier.

  2. Marian Fuller
    Marian Fuller says:

    I have been fighting M. S. For 41 and a half years. I had just celebrated my 25TH Birthday THE Month before. I have been thrown many curveballs, not directly related to M. S. ,
    my of life. I pray without ceasing! I used to say that everyone should have Multiple Sclerosis for a Day. Now I have changed that to a month. Then maybe Others would get a GOOD IDEA OF
    …..what we go through, what good Actors We Are!
    What WE All Need, from others, is Patience Mercy and Grace.
    I choose to live my life, Trusting The Lord with every New Day!
    May The Good Lord watch over all OF YOU!

  3. Davida Fine
    Davida Fine says:

    What diction software do you use? I am starting to not be able to type or even use a pen very well. Or if anyone here might now of a good one to recommend me, I would appreciate it very much! Thank you

  4. Sue Allen
    Sue Allen says:

    I also punch M.S. in the face first thing in the morning before i get up & shower. After my shower i do a few exercises which makes me feel a little better. I try not to give up

  5. Val Hanna
    Val Hanna says:

    21 years and still fighting it’s too hard sometimes but paint on the smiles and hide truth until I’m able to share with place like this. Thanks for all you do x

  6. Kathy Buys
    Kathy Buys says:

    I’m 37 yrs in with “fogging ms” & even I am startled if I start tallying my inabilities so I don’t. I need to vent, talk about flowers, wonder if the pools open, hide what makes some uncomfortable, laugh hysterically over memories—most important is counting my blessings & knowing someone will step up to help me make some of those needs come true

  7. Karen Newsome
    Karen Newsome says:

    I understand those thoughts. With such an unpredictable chronic disease, it’s hard not to think about the “what ifs”. Just need to take each day as it comes. That’s easier said than done I know.

  8. Aileen Brown
    Aileen Brown says:

    I have always done the writing thing and yes it helps talking to my aged Maggie and a photo of my mum who died 12 years ago all help and I don’t care if anyone thinks I have a screw loose and yes altho the people who care for us say they understand with the best will in the world they can’t but on here we do I once told someone my worst case scenario and they were shocked but I try not to think about it and thankful for each day

  9. Leanne Moore
    Leanne Moore says:

    Reading this I feel like there ARE people out there who get it. I love my family, friends and work colleagues very much but they never really get it. You guys do. Thank you xxx

  10. Odette van Straalen
    Odette van Straalen says:

    I’ve given up trying to explain anything about this stupid disease. None of it makes sense and I end up tripping over my words and sounding dumb. Today has been a hard one and I’m so glad I can just hide out from the world. Tomorrow I’m hoping for a miraculous recovery!!

  11. Daniela Robertson
    Daniela Robertson says:

    When I have days like that, I write it down too. When read it back to myself it’s often just pure rambling drivel, but does help make me feel a little better. Those days wishing I could see what s going on inside my head, why me etc. Then I take a look in the mirror give myself a talking to and thankful that I can do what I can and move on. Tomorrow’s another day

    • Gail M. Ferguson
      Gail M. Ferguson says:

      Emma Edmunds I don’t mind at all. In fact I am happy to help. I am not so sure I would do well at all without my psychologist. So,yes it helps me tremendously. I also take an antidepressant. I have history of anxiety disorder and deep depression. If you choose this route of talk therapy don’t get discouraged if you don’t click with the first person you see. It can be a frustrating process to find the right fit but don’t give up. It really helps me and I am not sure I would do very well without my therapist. He balances me,listens to everything, makes me feel safe and encourages me to keep going!

    • Kim Black-McKinley
      Kim Black-McKinley says:

      Gail M. Ferguson my doctor has told me for years I Need to talk to therapist… I’m just thinking , why ? What do they do? I’ve had. Ms fir 17 years , and also in antidepressants .. Thank you for posting , I can relate ❤️

    • Gail M. Ferguson
      Gail M. Ferguson says:

      Kim Black-McKinley I know I have a safe place to unload all my issues to someone that will not judge me and will help put my whoa’s into perspective. There are probably other reasons that don’t come to mind at this instant but I personally highly recommend it.

  12. Chris Ryall
    Chris Ryall says:

    I have learnt not to think about the future too much for this reason and try to take one day at a time. I love your page, your attitude and most of all your humour.

  13. Rebecca L. Wright Rice
    Rebecca L. Wright Rice says:

    Some days are like being on the show Running Wild With Bear Grylls. I just need to survive and make it through the day. Then others days I feel like I’m a American Ninja Warriors and unstoppable……….
    Accept the bad days and cherish the good days

    • Carla L Broadbent Rogers
      Carla L Broadbent Rogers says:

      The standard “You don’t look sick” when people find out that I have MS. My response ” You don’t look stupid, be well and have a nice day” That makes feel better. I have made my point and wished them well. You be well. Whether our MS shows it’s ugliness or hides in the shadows, We know it is there and We have to deal with it the best way we can. Be good to you and take care.

    • MaryAnn Calley
      MaryAnn Calley says:

      Donna Philmus Breitowich …I struggle exactly like that everyday…..even my husband sometimes gets doubtful of my struggles and tells me about people he sees at church early in the AM who are worst conditions that I am. My struggles are not visible and like you I am gifted with a look of being normal. Fatigue and the MS hug hurts.

    • Donna Philmus Breitowich
      Donna Philmus Breitowich says:

      MaryAnn Calley , oh, that MS hug. I used to get hit with it suddenly while I was standing in my classroom teaching. I’d be bent over, trying to get air in my lungs. I’d laugh like crazy so it wouldn’t scare my seventh graders. But, it felt like a wicked snake squeezing the life out of you.

  14. Tracy Plows
    Tracy Plows says:

    I thank you for the smiles and encouragement from your posts. 21 years of MS and having to learn to walk 5 times from a wheelchair has not stopped me. It may have slowed me down a bit but you never give up. You just fight harder through the pain and put a smile on for the ones trying to tell you to try this it might cure you or ‘I know they have a cure for MS you should ask them to give it too you’. I am a fighter and MS is my opponent. By the way I do cry when no one is around.

    • Mary
      Mary says:

      Thank you for your post. Having MS for 14 years and experiencing the after effects of a brutal MS attack along with the doctors giving me so many steroids I experienced sycosis, I now am in a wheelchair trying to walk again. I was feeling like I am never going to get there until I read your post. Thank you for being my inspiration

  15. Frances Anderson
    Frances Anderson says:

    I get long long days and nights were even my eyes are so tired and sore they wont focus. I just went to my grandsons first birthday party 2 days ago had a great day with kids grandkids family knowing that these next few days will be punishing me for those few hours of normality. I pick and choose my normality energy times so as to keep the family strong. But days like this i feel like i have nothing but long days in bed ahead. Be a fighter but take the punches as given just try not to give up the normality days hours. They are what keeps us going in the lonliness of our rooms

  16. Samantha Laurie
    Samantha Laurie says:

    I cried for hours recently because I’m scared I’ll end up in a home and not being able to speak or walk or the like and find myself at the hands of a nasty care giver


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