MS - Adapting to a Diagnosis of Multiple Sclerosis
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- Опубликовано: 31 май 2024
- Adapting to a new diagnosis of multiple sclerosis (MS) or accruing disability can be a huge challenge.
It can take time and there is a grieving process we go through. There is good news though! We have an amazing amount of resilience and although we may not be ‘all right’, we can be ok!
In this video I share 11 things that may help us adapt and adjust to our diagnosis or disability.
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Some Blogs I Follow
Overcoming MS overcomingms.org/latest/
Tripping On Air trippingonair.com/
Dr. Lucy Hone
Website
www.copingwithloss.co/about
TED Talk
• 3 secrets of resilient...
Articles/Studies/Papers
Mindfulness-based stress reduction: a non-pharmacological approach for chronic illnesses
www.ncbi.nlm.nih.gov/pmc/arti...
'1 in 2 people will develop cancer in their lifetime'
www.medicalnewstoday.com/arti...
Heart Disease: Facts, Statistics, and You
www.healthline.com/health/hea...
Rising prevalence of multiple sclerosis worldwide: Insights from the Atlas of MS, third edition
www.ncbi.nlm.nih.gov/pmc/arti...
Autoimmune Facts
autoimmune.org/wp-content/upl...
8 tips for coping with a serious diagnosis
www.mayoclinichealthsystem.or...
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Thank you SO much for this much needed video!!! I was diagnosed march 2023 on top of already having Lupus and Fibromialgia. I'm still going thru the process, not in a linear way, but I feel I'm getting there. Watching my whole life change in front of me before starting to live it has been tough. But watching others make their life work for them despite MS is being SO helpful!!! Thank you for what you are doing for the MS community 🙏🏼
Thanks for watching and commenting Sasha. I am so glad you found it helpful! Be gentle with yourself. This is hard! Please keep me posted on how you are doing.
Hi Sasha- I too have MS, SLE Lupus, & Fibromyalgia never met someone who has all 3 too. I have found some great Dr's & some areas I had to go through several Specialists & have a great team. Wellness 🌻 Christine
@@EvenSoItIsWell I'll sure will!
@@christinedawson9107 thank you Christine, it sure is comforting knowing I'm not the only one and finding others in the same circumstances is really helping me get my hopes up☺️
I am newly diagnosed since Feb after 15 years of symptoms so all of the emotions you speak of are very real. I'm allowing this season of grieving but won't stay there. Mostly I stay away from all of the negative. Many of the things you're speaking of I already do. The main thing for me as a Christian on this glorious Easter Sunday is to celebrate my risen Lord Jesus and surrender my life to him. This world is my temporary home. Someday I'll have a new and perfect body. Thank you for all you do for the MS community.
Thanks so much for watching and commenting. Our faith and spiritual journey can be so helpful and comforting.
This is beautiful. I was diagnosed in 2019, but didn’t start grieving until 2022. I’ve cycled through all of the stages of grief several times since. Allow God to guide you through the seasons as they come ❤
@@erinnicolefranco6807 Thank you. We are never alone are we? Every day and sometimes on repeat I say, Jesus, you will never leave me, you will never forsake me. I will trust him!
You're amazing! Thank you so much for your videos! They're so supportive! I'm 33 and I was diagnosed just more than a week ago.
Thanks for watching and your kind words. Please be gentle with yourself. A new diagnosis takes time to adjust to.
I'm a glass half full kind of person too.
I ignored my symptoms for so long while raising my three kids...I think I've had MS for many years. I was diagnosed last April at age 52 with "too many lesions to count because they all run together" accotding to MS Neurologist. I've had so much insomnia and so many migraines and numbness and fatigue and weird times when i fell down or had a weird unintended movement! I'd just pushed through until vertigo for two weeks and then facial numbness that took me to the ER the day after my youngest's junior prom.
I had so much fatigue in the winter 2022-2023, I remember telling my husband "I guess this is what its like to die." Seriously, that's how bad I felt! And I didn't go to the doctor because I was too busy! He doesn't remember it.
My oldest son has Down syndrome, Hirshprungs, Keratoconus and Celiac. He works twenty hours/week in the cafeteria at the Primary School across the street. He plays basketball and runs track with Special Olympics and he loves supporting local high school and college sports. My younger two kids each played three sports in high school and band and we were going to games and keeping everyone going. I work as a fundraiser and it can be stressful too. I'm trying to decide whether to apply for a new job right now...brand new position at the employer I've been with 27 years now. I just became eligible to retire too, but I do like that i can make an impact with what i do. I find learning to relax and avoiding stress are the very toughest parts for me.
Thank you for your content.
Thanks so much for watching and commenting Becky! You definitely are a glass is half full person. I can see it in your writing. Please be gentle with yourself and keep me posted on how things are going.
Thank you so much for this video. I love that you use your personal experience and make it applicable to anyone with a chronic illness. So much useful stuff here. I have certainly been guilty of being frustrated that others dont understand, and I feel the need to explain& I see their eyes starting to glaze over - so i’m trying to stop myself doing that! And you’re right, why should I judge them for not understanding when I dont understand whatever they are going through. I have also found it reassuring to think of others I know with nasty diagnoses - an acquaintance died of motor neurone disease last year and when i struggle with the treatment for my condition i think that he would have done anything to have a condition that could be treated.
I also have reservations on support groups, they can be a good resource, but the negativity can be unhelpful. I struggle with some of the criticism of medical staff - lots of “we know better than them” talk. I think we need work with the Docs, thinking of them as adversaries doesnt help.
I think I may be the viewer you were referring to who requested a video on accepting a chronic illness. You said you were reluctant to do this video. But from my (non-MS) perspective it is great. Met the brief 100%. Thank you so much.
Thanks so much Maureen! I appreciate you watching and commenting. It has been a long and winding road to get where I am today. It is a process.
Your optimism is tangible and contagious! Thank you for posting your thoughts, information and insights. ❤
Thanks so much! I am glad you find the optimism infectious! 😁
Diagnosed with relapsing remitting MS Oct 2020. So thankful for finding you and your channel!❤
Thanks so much Wendy! 🥰 Please feel free to share my channel or videos with anyone you think may find them helpful.
Whew I stuggle with people not understanding or at least caring. I'd rather people just say they dont care instead of pretend. I havent been diagnosed with ms, but fibromyalgia and now systemic sclerosis which is rare. The neurologists have completely disregarded the fact that from the middle of my spine down my legs and left are are numb and tingling and how my spine and ribs feel like they are being squeezed not to mention the electric shock that goes down my spine to my legs and arms.
I've only got through bc of GOD and actually learning and researching for myself. Your vids helped me learn so much
Thanks so much for watching. It stinks when we feel people don't care. I encourage you to keep on being your fabulous self! Just walk away from those people. 😉
@@EvenSoItIsWell ❤ Thanks for the advice. It was much needed
I got the diagnosis and was relieved. Didn't have any emotional moments. Recently went thru trigeminal neuralgia, that made me cry and want to die, I'd prefer childbirth to that. Got meds and the TN has calmed down.
Oh, I am so sorry you had TN. I have heard how painful it can be. Glad you found meds that helped.
Hhmm, I keep trying to add a comment but just can’t seem to “get it together” yet - I’ll come back!!
Incidentally, I never refer to MS as incurable. It’s not a thought I want to put any of my precious attention on….and it may turn out not to be true anyway, but that’s part of my version of positive thinking 😃
You have wonderful positive energy!
@@EvenSoItIsWell
👍😊
When I was diagnosed with MS, there was a lot of focus on MRI results, neuro exam, DMD’s, and explanation of MS from the clinicians - all good things - and no mention of the impact on me as a person, and what an adjustment it would be. The first mention I heard about it, I think, was Dr. Boster on one of his videos saying “People usually take about 2 years to adjust to having MS” [sorry if I got that wrong, Dr Boster!] and it took me 4 years. That was the point at which I saw Dr Boster’s video!!
I wish someone had told me when I was diagnosed, and the that someone had suggested counselling or psychotherapy, too - but that only came in this channel 👍😊
@@grinch4567 I think many have had a similar experience. I am so glad that things are changing and we are seeing more doctors and healthcare professionals taking a more wholistic approach to treating people.
@@EvenSoItIsWell
Yes - very much so.
And thankful for supportive RUclips channels!! 👍😊
Great video! Thank you
Thank you Nancy! Please feel free to share it with anyone you think it might help.
for a neurologist to say 'it looks like ms but more tests 'over the phone seems cowardly.. granted, I don't know the circumstances..
Thanks so much. It was quite a stunning call but it had been mentioned in the hospital, along with several other possibilities...