Fight with me not against me

All right, let’s say this once and for all and get it all out in the open.

I have Multiple Sclerosis. It is an incurable chronic progressive disease. There are some great strides being made towards finding a cure, but at this time there is no known cure. This disease will continue to worsen in my life as the months and years pass by. It is extremely unpredictable so it’s possible it could take an entire lifetime for my body to progress to a point of causing me major problems or it could happen tomorrow.

Google doesn’t have all the answers either. It is a fallible resource filled with more ideas than facts. All those cures you keep telling me about are opinions of someone who doesn’t have enough facts to back up their claims. Some of the information is even falsified in order to benefit the person declaring the cure. Opinions without facts are not going to end MS. Some of the things you read about may help someone manage a few symptoms, but nothing is a cure.

Another thing…I didn’t cause MS in my life. There is no past mistake, sin or wrongdoing that made me develop it. If that were the case then the entire world would be living with MS because no one is perfect. That’s right…I’m not perfect and neither are you.

I didn’t eat the wrong foods, drink the wrong drinks or take the wrong meds to cause it either. MS has been around for hundreds of years, way before GMOs, aspartame or food in a can. Again, if those things caused my MS, then the entire population would have it because everyone has been exposed to them…even you.

It doesn’t matter how much you ignore MS, deny its existence or pretend it doesn’t affect me, MS is real. Let me say that again…Multiple Sclerosis is REAL! I know because I live with it every day. It’s not all in my head. Well, on that one we can both agree because my MRI would validate that point. My brain lights up like a Christmas tree on the scans because it’s covered in scars. Those scars are my battle wounds as my body fights itself. That’s right, signals got crossed somewhere along the way and my body thought my own body was the enemy.

Each morning I wake up swinging because I’m a fighter not a quitter. Some days I’m strong and can tackle my to-do lists and work with gusto. But more and more I find myself struggling and needing your help to do everyday tasks that shouldn’t be a problem even for a 3 year old. That’s just how MS is. It’s unpredictable.

I need your support, love and care not your judgments, opinions and criticisms. I will fight MS until my dying day…that’s a fact. But if you are going to be a part of my life then I need you to fight along side me, not against me. My life hasn’t ended because of MS, I just need more help along the way.

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.

85 replies
  1. Linda La Rowe
    Linda La Rowe says:

    Thank you for putting into words a summation of the reality of living with MS. This is very accurate, on point and a fair assessment of the journey one faces living with this disease from the inside out!

  2. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    Well written Penelope it is real and a sad reality for us who have it. There is no cure for it as it is not known what it is anyway. Everyone has a different story but can relate to those stories. It is an intensely invading disease and causes all sorts of problems for all of us.But we can live with it and deal with the strange ways it manifests itself on a daily base.

  3. Sheridan Rose
    Sheridan Rose says:

    My issues has been folks not understanding MS and assuming what I feel is like what they feel. Not really knowing it’s usually 10X worse. Love them but I get frustrated enough with MS issues so when people look like “You don’t look sick” thing it adds to the frustration. MS is 24/7/365! MS will not kill me but I will die with MS. Just a fact of life.

  4. Brandi Hobbs
    Brandi Hobbs says:

    I feel every step, fall, tremble, cry or whatnot! Much love always from WV because this May makes 16 yrs fighting this beast! Stay strong and always know your MS Family is always not that far…

  5. Roland Clarke
    Roland Clarke says:

    I have to agree with most of this with one reservation. I was diagnosed with ‘benign MS’ in 2000 and 17 years later I have Secondary Progressive MS. I have one regret – I was never offered any disease modifying drugs, only drugs to mask the symptoms. I just moved from the UK to the US and the neurologists here are astounded that I was never offered anything. My late stepdaughter’s husband has MS and he is managing with disease modifying drugs, and although he was diagnosed before me but is still walking with assistance. I admit that the disease affects us all differently, but I would be wary of saying nothing works – or rather nothing slows the inevitable ravages.

    On the subject of food, I have been an advocate of organic food since the 1970s but haven’t abstained from ‘junk’ food entirely. So I wonder what caused my MS. I agree when you say that it seems to be random. At least I feel better from reading your inspiring posts.

  6. AL
    AL says:

    This could not be said any better,profound truth!!! I wish MS got as much awareness as Alzheimer or Breast Cancer. Please keep writing these articles are so helpful. I have been told at least you do not have cancer!!! People are quite ignorant about a neurological disease that affects your faculties. Thank yoy Penelope!!

  7. Lisa
    Lisa says:

    Wow that was amazing!!! Thank you for saying just what I also am feeling!!!

    Stay strong & thanks again for your amazing post

  8. Sally Lloyd
    Sally Lloyd says:

    Happy Easter, well the egg exchanging is in two days…yum yum can not wait. Well the kids can not wait. Me I’m suppose to be on the weight watchers diet but I’m sure a little peace won’t hurt to much.
    You say it how it is, well done you. Xx

  9. Kelly G Thomason
    Kelly G Thomason says:

    Well said! Thank you for sharing your words with us. Whenever I see your posts it brightens my day. You are an inspiration and I thank you from the bottom of my heart.

    • Gina Beth Romero
      Gina Beth Romero says:

      I’ve seen a few days ago in ppms group that someone said another patient died in hsct. The cancer drugs used are highly dangerous cutting down the immune system. It’s something to consider if considering the treatment.

    • Astrid ChiliPepper Trotter
      Astrid ChiliPepper Trotter says:

      That’s false what group? I like to see this I’m going to see Dr Burt next week and know many getting treated now and many who have been treated and no longer have MS! I’m to post this in his group and see if this is true what you stated, In the beginning trails there was one death not due to HSCT

    • Heather Adsit
      Heather Adsit says:

      He hasn’t studied it on mass amount of people.
      It’s sad to see a fellow MSER who dosent get this post 🙁 a bit unkind 🙁

      My question to you is how long have you known about MS?
      How long have you been fighting it?
      This Blogger has been fighting this for a long time.

      Time helps create wisdom 😉

      Every body is different.

      Do you have any other conditions?

      You don’t have to answer this here… I’m just giving you some things to think of 🙂

      I myself have Hoshimoto thyroiditis and fibromyalgia.

      That with MS has made it difficult to treat.

      I can’t take any meds in the morning for 4 hrs due to my thyroid meds.

      That makes it fun :/

      I have been on some of the best meds that have put me in the hospital.

      A cure is like a vaccine you take for other conditions.

      You take it and it will work for the majority of people.

      Right now we don’t have that… we have treatments.

      It’s a step forward…. but not a cure.

      The one you speak of isn’t covered for all.
      Some states struggle to afford it.

      I here many say they can’t afford it. 🙁

      Again… not a cure because it has to be available to all…. a cure is.

      It may be a great treatment for some and that is wonderful 🙂 We need those steps forward 🙂

      But please try not to push on other MSERS saying it is a cure :/
      It’s very crule to do to a person fighting this.

      You saying it is a cure…. is like saying all legions cause the same symptoms or damage.

      I hope it works for you 🙂

      But we must remember. We all know our body’s.

      Not all meds help all.

      Be kind 🙂

    • Astrid ChiliPepper Trotter
      Astrid ChiliPepper Trotter says:

      Get on his FB many insurance cover it and many don’t sadly mine will not so we are on are own and he has treated many for about 15 years! I’am in no way being cruel but trying to help!! There is a treatment this treatment to help halt this monster! I live it everyday.. there is a few Doctors in the united states Dr Burt one of them that are already treating and changing lives! One can also go overseas like Mexico and a few more place.. Get educated first on the wonderful things that are going on around us that can help, Yes it’s not easy for many of us but we fight for it.. We’re a military family sadly our insurance don’t cover all of it but working on it and many insurances do and it’s all listed on the page.. Also there is a list of a few of the Dr that treat all M.S types.. again trying to help not be cruel so don’t take that out of context!! I too I’m a fighter and a supporter.

    • Astrid ChiliPepper Trotter
      Astrid ChiliPepper Trotter says:

      Get on the page the link I posted up and you can read everyones story all the stemmie brothers and sisters and everyone different like how we are now, things take time to heal a body that has been hurt for awhile. But get on and read or hear all the story’s for yourself they’re encouraging and give many of us hope <3

      • Carole Thomas
        Carole Thomas says:

        Do you work for this guy? Have you had the “treatment”?? My best advice- coming from someone who has had MS for over 17 yrs ( perhaps longer before my symptoms were active), I have seen “treatments” and “cures” come and go : Step back, take a deep breath and wait to see what happens So often people who have had so -called cures-CCSVI for example,-shout about it to the roof tops, but as soon as they realize they don’t work, you never hear from them again

  10. Sylvie
    Sylvie says:

    I really enjoy reading all your articles, especially this one! Thank you for this, Penelope!
    You brighten my day. 🙂

  11. Jana Morgan
    Jana Morgan says:

    Wow! That is the best understanding of how ms makes me feel. Well done writing that as I couldn’t have written it better!

  12. Leslie Beaver
    Leslie Beaver says:

    Well said. This is a stage in our life. And we are doing our best to successfully play the cards that we have been dealt. Support and care is always welcome. But judgement and unknowing comment is not. So please keep your thoughts to yourself if that is all that you have to offer.

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