My MS Story - Lessons Learned Living with Chronic Illness

Living with Multiple Sclerosis (MS) is a lifelong commitment and there are many lessons to learn along the way. In this video I share some of my MS story, how I manage my MS symptoms, and how I have changed over the years as I live with chronic illness.
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The Diet Studies
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pubmed.ncbi.nlm.nih.gov/27645...
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#MS #MultipleSclerosis #LivingWithMS #EvenSoItIsWell, #VickieHadge
00:00 My MS Story - Lessons Learned Living with Chronic Illness
00:22 My MS Diagnosis
00:46 MS Symptoms
02:32 Newly Diagnosed with MS
03:48 Living with MS - Shift of Perspective
04:55 Frustrations of Living with MS
06:11 Dealing with Toxic People when Living with MS
07:58 Improving with MS
09:53 MS Diet
10:52 Lifestyle Changes to Help MS
12:05 MS Warrior?
13:10 Mindfulness and MS
13:28 Mindset and Living with MS

[@EvenSoItIsWell]

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[@kathleendonahue5955]

I had the same experience as I actually diagnosed myself My PA finally listen after 6 months

[@EvenSoItIsWell]

Glad they finally listened.

[@k3of5ks]

"our doctors are not trained in nutrition" - no truer words spoken. I do my own research and butt kicking PT 6x a week and try my best to stay away from negative words regarding this diagnosis.

[@EvenSoItIsWell]

“Butt kicking PT” that is so awesome! What kinds do f exercise help you the most?

[@k3of5ks]

I change things up every other day but always includes jumping jacks (arms only) calf stretches and toe raises, ankle stretches, push ups against counter and various forms of squats and bum strengthening. My left side is affected with moderate atrophy in left leg. I thank God every day that I am still walking (with difficulty) and I hope to be walking for the balance of my life on this side of heaven.❤ That's the goal. I would like to see discussed how to respond graciously to caring people who comment on our noticeable physical difficulties. I can't hide my MS due to a very noticeable gait issues and often get asked about it. People care. I don't always want to talk about it. @@EvenSoItIsWell

[@aer71367]

Yea, I too kind of expected him to say "You have MS". So I wasn't surprised when he said the words. I remember thinking "My entire life is about to change."

[@thatguywithms6296]

Good insight. I find changing my perspective is one of my best DMTs. I’ve experienced wheelchairs, job loss, severe pain, etc due to MS. Even in tough moments, asking myself questions like “what’s good about this, or could be? What’s funny about this? How will this matter in 5 years/months/days?” can help me stay grounded.

[@EvenSoItIsWell]

I love that you look for the good! It can be so helpful can’t it?

[@caracaplinger1860]

these are great questions to keep me grounded. Thanks for sharing your experience!

[@NickieF7]

I read the MRI with very little understanding and found out; the doctor confirmed it the next day and my faith in God has been a huge help in me being okay it! I’m know I’ll be okay.🙏🏾🙏🏾🙏🏾

[@EvenSoItIsWell]

Thanks for watching. Yes! Our faith has so much to do with our health and well-being. My tattoo is “Even So, It It Well” it is from one of my favorite hymns. It is a reminder that no matter what happens, I will be ok.

[@mistypayne7314]

I just found out I have RRMS February 12th of this year. I have optic neuritis and that led me to the right doctors to get a diagnosis.

[@EvenSoItIsWell]

Thanks for watching Misty! Newly diagnosed, be gentle with yourself. How are you doing?

[@user-ig3kn2ly2x]

You're early in the Disease. Begin learning and applying Homeopathic approach to slow disease progression. Learn about Causes and Natural treatment methods for improved symptoms and better health. Think: Dr. Maddea; MS. Good luck. MM, JD CANDIDATE ✌️

[@yvetteschoeller5547]

Just like you I was stunned even though I knew I had MS.

[@EvenSoItIsWell]

Yep, we can suspect it and have all the symptoms but it is still stunning to hear the words.

[@robhruska7611]

I felt relief, I thought i had a brain tumour so at the time i thought MS was the better of the two options. Not so sure now. Still adjusting 3 years later. Didn’t have the problem you did with people in my life. The toxic people in my life are two of my kids unfortunately. Need to be patient with my process and my body to heal. Need to take exquisite care of myself. I do part of it but not all. Like the warrior perspective change.

[@EvenSoItIsWell]

Thank for watching Rob. Sorry the kids were toxic. I hope they come around.

[@sumanmukherjee1418]

Fantastic video, wonderfully explained.

[@EvenSoItIsWell]

Thank you for watching and the comment. I am glad you enjoyed it. Please pass it on to anyone that you think may benefit from it.

[@sumanmukherjee1418]

Sure, I will definitely do that.🙏

[@steinburgaler]

Some of this really resonates with me and I'm just starting to learn these things about two years in.

[@EvenSoItIsWell]

Thanks for watching. It can really take a year or two to adjust to a diagnosis. Honestly, I am still learning things all these years later. 😉

[@steinburgaler]

@@EvenSoItIsWell adjusting is a big part but so is finding the right care. I've switched docs and meds several times so far. Your foot drop improvement gives me hope that my walking will improve. I'm putting in the work and not just waiting for it to happen for me. One thing nobody talks about it is the administrative side of being sick. Managing appointments, billing departments, insurance, etc. That would be an interesting video. Let me know if you ever want to discuss.

[@GenerationX_GR]

Who could forget ? I remember crystal clear the somber announcement that day in his office "I'm sorry son, i hate to tell you that but you have MS beyond any doubt". I was thinking like "Ha?! What is this MS thing he talks about in such a grave tone of voice? Is it a cancer". It was then when my thoughts were interrupted with another announcement "in my experience you got ten more years because you're male and in males it progresses faster. " i was again dumbfounded "what progresses faster 10 years to go? Now he will drop it. It is cancer isnt it? Thats what he probly means". "We have done all tests there is to be done and especially that spinal tap we did seals the 'deal'" .. Looking back he most likely meant "ten years until a wheel chair". Well long story short, the oracle was wrong cause 14 years have passed since then and although i use a cane and things have gone in a snowball fashion, I have not kicked the bucket yet !! 🪦😂 Be strong everyone. Its the only thing left for us to be. Be strong. // A coffee for vickie on me.☕

[@EvenSoItIsWell]

14 years in! Well done!

[@EvenSoItIsWell]

And thank you!!

[@zagazags7290]

I was diagnosed with ms in 2003 I was 35 I had double vision I’m 56 y/o I was scared and didn’t understand about ms etc

[@EvenSoItIsWell]

Right? In the beginning we are confused as to what the heck we’ve got.

[@davidarmstrong7549]

Another great video! I particularly like the use of the word "Huh"! I may well find some use for that, lol 👍 x

[@EvenSoItIsWell]

Thanks David!

[@user-ci6sd8ui7g]

Another really useful video, thank you. It covers so many helpful things. I find the generic coping with a chronic illness content of your videos really helpful. I was specifically looking for help with accepting that I have a chronic/serious illness. I dont have MS, I came to your videos via your videos on mri anxiety. I have an unusual inflammatory heart condition which can be dangerous, I am struggling with getting my head around this being a long term issue rather than something that will be treated & fixed. The treatment is challenging for some and has some overlap with ms - high dose steroids with disease modifying drugs to get you off the steroids. Its challenging to accept that I will probably need ongoing treatment, not just in, fix, out. I know I need to accept, surrender, let go rather than trying to control things I really have no control over. I know you periodically ask what people would like you to cover in your upcoming videos, so that is my request: a video on how to get to a point of acceptance of one’s chronic illness rather than fighting it. Also if you did have something on coping with high dose steroids and side effects of various drugs. Thanks for your great work. Your videos really do help.

[@EvenSoItIsWell]

Thanks so much Maureen. I am sorry you have this condition. How long have you been living with it? I will,definitely look into doing a video on acceptance. I don’t have anything on dealing with high dose steroids but will look into the research on them.

[@user-ci6sd8ui7g]

I look forward to hearing your advice on getting to acceptance. I only asked about steroids since you mentioned having them at one stage, I was interested in whether you had covered your experience with them. But if they werent that significant for you then that answers that question. Maureen

[@Nancy-dz1vo]

Thank you so much for this great video! ❤😢

[@EvenSoItIsWell]

Thanks Nancy!

[@jillpralle174]

I love so much the part about not being a warrior. What a relief to hear you say this. It seems like such a western response - Fight! Conquer! Ugh 🙄

[@EvenSoItIsWell]

Thanks Jill! I wrestled with this for some time before I released that title and embraced the more gentle approach with my attitude towards my MS.

[@cesaredo]

❤

[@EvenSoItIsWell]

Thanks for watching!

[@donaldsmolder7152]

Fear. And scared.

[@EvenSoItIsWell]

Yes! Like so many of us. Thanks for watching.

[@user-ig3kn2ly2x]

Interesting video, but I used to work as a program services coordinator at NMSS, here in Central California. ....Here, ... I'd man the toll free number; Id comfort and did my best to help the World. Problem is: I lost many who I knew and or Ioved to MS, ....then I myself was diagnosed in 2016....😮 ...Thing Is: I Have an IQ of 160 give or take, - so when I hear lesser IQ people Tell Me..., that There Is { No Cure or Treatment with that ' Oh So Silly Ass Accepting Smile Because ' Guesswork Monkey in a White Lab Coat told them what to believe.... I Say in my mind: * This person is just not very smart; at least to Me....' Then, I get quiet, put on my thinking cap, and find The Answer(s). Yes, I too was diagnosed, but I am getting better; now that I figured out the Causes and The Solutions to what Many could not even properly diagnose until a decade or so ago.. Kinda what I do. Complex problems are only complex to dumb people , just saying. Peace ✌️ ❤❤❤

[@EvenSoItIsWell]

Thank for watching! So glad you are doing well!

[@user-ig3kn2ly2x]

@@EvenSoItIsWell Yup, I'm walking around the house, my vision is improved, balance much better, and just ate 2 grass fed burger patties, and the roomie must think I've been faking it all.. Nope, just exceptionally bright; always have been. Thx Peace ✌️ Advice: I don't believe in the 'No Win Scenario ' Kirk, 82, STTWOK. 🖖

[@marybethcully5883]

Terrified…😢

[@EvenSoItIsWell]

Yep, terrified is one of the emotions for sure.

[@Watcherw1]

I think stem cell therapy is the answer

[@EvenSoItIsWell]

Thanks for watching. Stem cell therapy is definitely the answer for some.

[@Watcherw1]

@@EvenSoItIsWell Think about it, could better your quality of life. Best of luck to you,

[@EvenSoItIsWell]

@@Watcherw1 Thanks. I am doing well! Have you had stem cell treatment?

[@Watcherw1]

@@EvenSoItIsWell no, however i have seen patient testimonials and it is life changing

[@pattischmitz2680]

@@Watcherw1what type of stem cell?