Finally opening up about something I've been hiding | My Diagnosis Story
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- Опубліковано 18 чер 2022
- MY INSTAGRAM: / elinlesser
MY PATREON COMMUNITY (find out more info here): / elinlesser
Today I'm sharing my diagnosis story.
Diagnosis, multiple sclerosis, ms
I was diagnosed with Lupus in 2019, and one of the worst things you can say to someone battling an invisible disease is "You don't look sick".
In 1995 I was diagnosed with relapsing remitting multiple sclerosis. That was nearly 28 years ago. I am a walking talking example of the hope I want you to have. I have an active, fulfilling life and the changes have been positive. Hang in there, the shock wears off and life goes on: It's a new life but it goes on. 💜
Hey hey, myelin researcher/axonal degeneration researcher here who has been involved in many drug studies and was in startup developing a small molecule therapeutic for oligos ..... out of curiosity, which drug(s) are you using these days?
@@puddlesplasher7 I am on Gilenya. I live in Australia
@@YvetteODowd me too.
@@YvetteODowd that's awesome. Fingolimod is neuroprotective and had some cool properties in mouse model of MS... and it helps to protect axons despite myelin changes, and interestingly increased mitochondria amount in axons which maybe accounts for its neuroprotective effect on demyelinated axons.
@@puddlesplasher7 Leave mice alone it's not their problem.
I was diagnosed with MS in 2017 when I was 33. At first I was devastated, but it is not as bad as I expected. I'm still able to work full-time, travel and be happy. Of course I experience difficulties and fatigue, but I guess I'm used to it as it is part of my life now.
I was diagnosed in 2020 as the whole world was changing. It was a lot to handle at the time. My experience with vertigo from start to finish was 3 weeks. 1 day of room spinning and the rest was just balance problems. I haven't had it again, thank goodness. I know it's tough. I didn't tell anyone about my diagnosis (besides my husband) for over a year. Now I have infusions every 6 months and I'm free of new lesions and I actually feel really good. I try not to worry about what might happen. That'll drive anyone crazy. I get plenty of sleep, and I allow myself slow days when I need them. Also, I've learned not to say things like "it could be worse" because in the moment we are hurting. We are struggling. We arent functioning at the same capacity we used too (even if just temporarily) and its ok to recognize that we're not doing well in the moment. Yes, it could be worse but in that moment it's the worst we've likely ever experienced. When I had optic neuritis That was scary and didn't want to discuss how scary it was just because others might have it worse than me. 😊 I hope you start to feel better. 🙏 Praying you'll get stronger. Living with MS can be manageable
I was Dx’d w/ M.S. 35 yrs ago 1987 I was 27 ,I am now 63.
I too am a walking talking example of hope I also want you to have. I have 4 grown children and 7 grandchildren. I have an active life and the changes I’ve made are positive. Just moving a couch , taking a walk , sweeping/ vacuuming, takes a lot out of me, rest when you can. If you need to talk I am here. Be strong warrior! MS💪
Thank you for making this video. Because of my MS & cognitive changes, I've been forced into a medical retirement. It's been almost 4 years. I'm loving it now, but my self esteem took a huge hit when it happened.
My heart goes out to you. So sensitive and articulate. My life took a sudden turn with a cancer diagnosis so fatigue is now part of life, aches and pains. I’m hopeful of a good recovery and know life won’t be the same, never as carefree and sometimes feels lonely but I choose to walk in the metaphorical sunshine. Attitude is yours to deploy as you wish. Sending my love and best wishes xx
I was diagnosed with Multiple Sclerosis in 2012. It was hard after 5 years of my diagnosis I has to quit my job and be place on total disability at 45. I’ve had my highs and lows but I just tried to push through. Just know their are other people out there that understand what your going through.
As much as I hate having MS, I am heartbroken when I see it attack the young.I know it seems a bit trite but, I have found that Doing and seeking the things that make you laugh, really does help a lot. Hang in there young lady ,you seem well grounded and show great promise.😀
Please stop with this disrespectful shit of valuing younger people's lives over older people's lives. No wonder old people are not respected in western societies when more empathy is routinely given to the young. I have MS but I have worked in neuro rehab in the past and see the impact MS can have on people across all ages. Some challenges the same, some different but all challenged in some profound way. All lives matter equally.
I don't value the young any more than anyone else. I just know that this damned disease does not kill you by itself. Having it strike me down in my fifties and eat me up for ten years it simply pains me that getting this hell when you are young only gives more years of pain. Hence my comment.
@@mybachhertzbaud3074 Okay, I see, thanks for explaining. Indeed the younger you are the more years of MS crap one has to deal with. All the best to you.
I believe you apologized for being negative or something of that nature. The truth is not negative! It's just truth. And you are a brave woman to step forward and share this. I have utmost respect for you!
Dr Joe Dispenza has magnificent meditations in UA-cam and in his website. Lots of people have reactions to spinal taps… why do they lie??
In case it gives anyone hope, REMYELINATION *CAN* HAPPEN, and lesions sometimes completely disappear. New or old lesions can also be asymptomatic. The unpredictability of autoimmune disease is often the worst part for me, but it's also a blessing when things get *better* : - ). Sharing stories like this helps. Thank you and good wishes! ❤
I survived breast cancer 7 years ago, at 33 years old, and I completely relate to the feeling you were describing about how much to share. When being completely honest I felt like it was too much for people, but just pretending everything was fine also didn’t help the situation. Quite honestly, you might lose people in your life who really can’t handle hard things. There is a lot of toxic positivity out there, and it can feel very invalidating. For myself, there were some tough lessons in there about recognizing that most people are doing their best, and that they have their own stuff going on. It helps tremendously when everyone can just be honest with each other about feelings, personal limits, etc while still showing each other care and compassion. Sending you love as you navigate your future, I know this won’t be easy but I can see that you are already have such wise perspective. Thank you for your vulnerability in sharing.
I never leave comments here on UA-cam , but you truly are a slice of light. Sending thoughts and prayers to you going forward and please remember what you are saying here - you truly are not alone.
I have a different autoimmune disease, autoimmune arthritis, and was diagnosed 8 years ago at 23, but my symptoms started in my teens. I’m almost 31 now and having a big flare lately. It hurts to walk or stand up or bend over, hurts soo much. I do feel alone, my family didn’t seem to believe me or really care when I was going through diagnosis years ago. Invisible illness is lonely. But I have a lot of empathy for those who are going through it. You never know what someone is going through.
I read your comment and I broke down crying, it was as if I had written it myself 😭 sending you gentle hugs 🙏🏻💖
My sister who lives with MS for the last 16 years started with this mental frame and similar symptoms, so I totally get you. However, the good news is that she leads the best possible quality life after figuring out, taking help, rearranging, and prioritizing all the things that work for her and creating that ecosystem. Her journey is incredible and she is one of the bravest people I know. And of course, she is on oral medication which has really kept her condition well under control . There's plenty of hope, sis. Please join the MS online communities and you will learn so much which can improve your life quality.
I’m now 70 & was diagnosed with RR MS at age 35 in 1988. I now have secondary progressive but still walk up & down my block as well as around the house. Also ride a stationary bike.
Thank you for sharing your diagnosis and your reaction to it. I’m not very religious, but I really believe that on your site you are a blessing to other people who have any association at all with MS. Btw, I describe MS and it’s lesions on the central nervous system to obstacles/scars on railroad tracks that stop the train or messages from the brain to one’s extremities.
Everything you say about MS, I have also felt and feel now. You are very normal. Please remember to not isolate yourself, do whatever you want/need to do and get a neurologist who is up to date and who listens to you. Bring someone with you to your medical appointments to have a second pair of eyes/ears. Use the MS Society for information, maybe join a support group (your husband, friends and other family can come too). With Love & Support,
Nancy in California
Think about all possible MS medications (I use Ocrevus). Contact the manufacturers of any medications to get assistance in paying for it.
As you were telling your story and I knew that there was a very good chance you were going to say MS. I have had MS for about 17 years now, I was diagnosed in my early 20's. My first symptoms were the tingly/numb feeling that engulfed my entire body. When I was finally diagnosed I went to tell a very good friend with a huge smile. He said why are you so happy about this? My comment was now I know what I have and this will not kill me. I am always proud to tell my story as you should too. I know MS takes many forms and not knowing how this will react with you, but I hope that you will be able to do anything that you can imagine in life. I have been on the injection Avonex, and even 17 years later, there are still weeks I do not want to stick that dumb needle in me, but I know that it is helping, and I can do this about anywhere. Last week we were camping and I was actually just telling my husband that we can do all these fun things and my MS and injection does not stop it. I am fortunate that I have very little problems with my MS and I am able to do all the outdoor activities I like. Hiking, camping, fishing, snowmobiling, just to name a few. I do get fatigued easier and the heat is a killer, but I push myself as much as I can. Just do not stop your life, keep moving and stay healthy. MS does not own you!! I am sure this is scary for you and pray God has a healing hand over you. Thank you for sharing and keep sharing!
I'm still waiting on my formal diagnosis but my GPs are very convinced as was AE (just waiting on neurology)
Like you I started with weird tingles - unfortunately I don't really have much control of my right leg so I alternate between wheelchair on bad days and crutch on good days (but hey at least I'm still mobile in a sense haha)
I'm actually really excited to get my diagnosis! My GP rushed me to AE because it's been quite a rapid process so they were worried I'd buggered my spine some how - it will be really nice to have the confirmation that it will be life changing, not life threatening.
Lastly I'm so glad to see some people have taken really well to the medication - it gives me hope for the future (no cure, but delaying the progression is better than nothing! 😊)
Best wishes to you all xxxx
Oh hugs hon! I live with chronic illness and fatigue that goes with. It’s why I’m a minimalist and why I keep life simple! I’m in control, not my illness. You’re in good company- Courtney Carver started her minimalist journey when she was diagnosed with MS in 2006. It’s part of how she started project 333. She simplified her entire life.
The “you seem fine” is really difficult! That’s NOT in your imagination! It’s very real! I got to where I am extremely careful who I share details with - I just say it is a couple of autoimmune diseases and I have serious weakness and fatigue. I am so done with the well meant advice - the magic cures that people want me to try - that I have tried and didn’t work.
Grieving normal takes time.
You didn’t express negativity- you sound like all of us navigating long term chronic illness that aren’t fixable but can be lived with successfully. ❤️🤗
I live with cronic fatigue syndrom and, oh God, I understand you so much! I am constantly fighting inside me between telling people about it so I can educate them or hiding it from everyone and save me time and efforts 🤦♀️ I am studying psychology and when I had to learn about psychosomatic disorders I was so triggered I couldn't open the book, because of all the times I've heard and still hear that "everything is in my head". I actually have to learn in my psychology books about how sfc is psychosomatic! I love psychology with all my heart but sometimes I hate it so much for this kind of irresponsible statements. I hope things will change with time! ❤️
I can relate with you both and her...
I was goi g to remind her about Courtney Carver- also my husband has MS. It is a journey but simple and intentional is the way to go! Best to you!
Yes to all the above ❤️
@@unrespiro thanks for sharing you're insights. I've had chronic fatigue for 15 years since college in NYC. For me personally, I don't doubt that there are "some" psychosomatic components of chronic fatigue syndrome. But of course there are some very real and traceable physical components too. I got food poisoning which set off a chain reaction of problems plus the extreme pressure and stress from a toxic relationship, to do well in college by my mom and the worry and insomnia brought on by my toxic dorm environment. And the pressure I put on myself too. I read that there was a research study correlating food poisoning with chronic fatigue several years ago. I don't remember any of the sources but please look that up in might help you in you journey for answers.
Thank you for sharing this. I was diagnosed in 2020. It was a very scary and challenging time. Very isolating and hard because as you say it makes you feel like you are complaining all the time Tell your story. We all need to hear it. It is the only way that people will start acknowledging it and we are so close to finding a cure.
I know this video is old but I hope you see this. Having an Invisible Illness is so difficult, especially as a younger person. People look at you and, as you said, you “look fine”. And, being young, what could possibly be wrong? I was about your age when I started my invisible illness journey and it is still difficult 17 years later. People who don’t live with it just don’t get it, and can be very mean. So glad you have a good support system, it makes a big difference. Sending you gentle hugs and all of the good vibes I possibly can!❤
I saw this comment, and I appreciate it!!! Sending you all the good vibes back!
Thanks for sharing your story 💕 I don’t have MS, but as someone with an invisible chronic condition it’s nice to feel less alone. Wishing you the best!
Thank you for sharing your journey and being open/honest. Sending you light!!!
so sorry you and going through this. thank you for raising awareness.
So sorry to hear about this. 😢 Thank you for sharing because you are helping others. ❤️
I found this quite heartbreaking and incredibly eye opening. Thank you for sharing your story, wishing you the best.
So sorry you are going through this. You are in my thoughts and prayers. Have a blessed day!!
So sorry to hear this. Many hugs to you! Hoping for great advances in medicine, and holistic practices as well.
I’m so sorry. Sending you lots of love 💕
Thank you for sharing! Praying for you 💕🙏🏻 I can’t imagine the fear and isolation. Please talk about it anytime you need to.
So sorry to hear this. Thank you for sharing. Sending blessings and hugs. 🙏🏼❤️
You are so brave for sharing this! I wish you all the best in this difficult journey ❤
Thank you for sharing your journey with us and being so vulnerable. I’m praying for you and hope that your symptoms ease.
I was so rocked by your part about feeling doubted because you can mask your symptoms well. You feel like you can't win either way and it leaves you isolated in your own reality shouldering it all while others kinda get a blissful ignorance about it. It's not easy to talk about health issues without feeling like a downer or making things awkward but I'm so glad you talked about it so openly. I think a lot of viewers may resonate for one issue or another. Thank you
I hear you. Thank you so much for being so open and honest and brave. You will have helped so many of us to feel less alone by sharing your story 💞
Thank you for sharing your story. You are so brave and such an inspiration. I will say prayers for you. Stay strong, you will persevere! 💕
I am so sorry to hear your diagnosis, my heart goes out to you. Thank you for sharing, that must have been incredibly difficult for you. Sending love, best wishes, stay strong xxx
Thank you for sharing this, we are honoured to hear it. I really feel for you having to go through that diagnosis on your own. You are an inspiration for your positivity. Please keep us updated (if you want to) x
Love and prayers for you! I can relate to your fears and worries. Continue to move forward, it’s all we can do, whatever the situation!
Praying for your health and journey. Thank you for being vulnerable.
Thank you for your transparency. We’re here for you. You’ve given us so many tips and tricks on how to live a more intentional life that this makes our heartache for you. Sending you so much love and light.
Bless you for having the courage to share your story. I pray you have the support around you to help you on this journey 🙏
You're a courageous and brave woman, please don't lose hope and hang in there! Sending lots of love and prayers!
So sorry to hear about this. Sending healing thoughts to you
Thank you for sharing and I am keeping you in my thoughts and prayers as you continue to go through this and live with this diagnosis. 💜 Appreciate your transparency and willingness to be so vulnerable with your experience.
Thank you for sharing your story! ❤️🙏🏻 I love your videos on UA-cam and this one really touched my heart. Thoughts and prayers are with you, you are so brave!
Best wishes as you navigate this diagnosis. Thank you for sharing. All the best to you!
Thank you for sharing your story, you are very brave. It's a good reminder to be grateful for every day and all the little things we take for granted. Praying for you. Stay strong x
Thank you so much for sharing this! I can only imagine what you must be going through. You are so brave, and I appreciate that you've shared this. Sending you so many hugs and good energy! Please continue to update us with your story - you have such an amazing channel, and we are here for you!
Thank you for sharing your story. So brave! Please take care of yourself. I enjoy your videos so much and pray for strength through your journey 🙏🏻❤️
Wow, this is a lot. I'm so sorry you have been going through all this. It is so difficult to deal with a chronic illness - especially one that doesn't have obvious outward signs. I'm glad you got answers! Thank you so much for being willing to share with us!💗
What an important story to hear. Thank you for sharing. None of this could be easy and I'm sure it has been absolutely life changing. Keeping you in my prayers
Sending you so much love, strength, and heaps of healing 🙏❤🙏
Thank you for sharing, I know it was hard. It’s so encouraging to hear from someone struggling that it’s ok to be afraid and unsure, it’s ok to ask for and accept help, it’s ok to be wherever you are in the acceptance process of whatever the struggle is. Sending good vibes to you, and wishing you all the best.
Thank you so much for sharing your story. I’m so sorry you have to deal/live with this illness. I wish you the very best. And just so you know, you weren’t negative at all. You were just sharing truth. I have an autoimmune illness, so I understand what you mean about people not thinking you’re sick because you “look” well. It hurts, it’s frustrating, and it sucks when that happens. Some people will just never get it. It sounds like you have a great support system and that’s all that matters. Take care and share whenever and whatever you want - we’re here for you.
Much love and prayers to you. God bless you. You are so brave and courageous to share your story. Remember that you are not alone in this. Big hugs.
Thank you for sharing so openly. I admire your honesty, courage and vulnerability. Sending you lots of positive vibes x
thank you so much for sharing your ms story! i totally feel the "being vulnerable is being free" mentality.... at least right now in my ms journey. i also struggle with the same unknown future possibility of progression; so happy to hear you've moved into seeing it as a gift. hopefully one day i get there. sending you a hug!
Your story is humbling, thank you for sharing. I have heard of people reversing the early stages of MS with dietary changes, something to investigate at least.
I hope you receive nothing but love and support from sharing your story. I'm so sorry that you're going through this. I'm sure it was so overwhelming, painful and frightening. Many, many hugs.
What tough news, praying for you. I have a family member (also a young woman) who had a similar diagnosis. Thank you for sharing.
Thank you for sharing this story. I am grateful that you felt you could trust your listeners with such profound struggles as well as some insights. I am sorry about your ER experience and having to cope with hearing all this alone. It goes to your strength as a competent person (even if you did have trouble hearing the information and then having to share it with Andy later). I trust that you will navigate through your life with the grace that comes from your core and from knowledge that you have a wonderful support system as well. xo
Thank you for being so open and honest about your health situation. You are such an inspiration.
Your mental outlook is going to be so important going forward.
You will find the things that you still can do and you will prioritize the way you spend your time.
Praying for you. God bless you.
Thank you for sharing this. What a difficult journey you’ve been on. Please give yourself a lot of grace as you navigate this new life, because what you’re going through is very hard. Wishing you the very best.
Sending you love and hugs. It is very brave of you to share this. There is a huge community of folks who are sending you love and trying to lift you up.
Wow 💜. Hope the treatment works well and new developments arise to help you and others with this! Thank you for making this video
You are so brave and so kind that I' m sure you will live a long and a great life. Thanks for sharing your story.
I've been following your channel since the beginning and I jus wanted to say thank you for being open and honest about your health issues / situation! 💐 All the best with everything 💛
Thank you so much for sharing and opening up. This makes us appreciate all of our blessings even more. I pray that this passes. Stay strong, you have a community that loves you. ❣️🙏
Thank you for sharing a very personal part of your life and we are sorry for your struggles. Sending you love, light and healing of spirit. Hugs from Ohio ❤
My heart goes out to you. You have every right to feel all the emotions you are experiencing. My prayers will be with you. I love your videos, and how soothing they are.
Praying for you 🙏🏻
You are such an inspiration to me, very grateful for sharing your story on here
Prayers and hopes for your health. Thank you for being so real, and for adding such depth to the intention and wisdom that you are sharing in your channel. I commend you for approaching so many things with thought and grace. You are making room for relationships and experiences and adaptability with all that you are focusing on. Wishing the very best for you, and so happy to be one of your subscribers.
How brave you are, so giving in sharing how you feel. Even in your pain you are helping others. Sending ❤️ love
Thank you so much for bravely telling your story. Your vulnerability and honesty will help others.
Thank you so much for sharing your story, I can tell already it has touched so many lives. Keep strong but give yourself grace. You are doing an amazing job.
I am so sorry to hear about your diagnosis, but I am glad you will be properly armed with the information you need to live your best life! Listening is a kindness, but telling your story is so brave. Thank you for sharing.
Elin, thank you for sharing your story and being so open and honest about it, even though it was upsetting to hear about what you have already felt and gone through. I don't have MS although my auntie did, but I live with invisible chronic health conditions and could really relate to the feeling of isolation and feeling possibly judged and misunderstood. So thank you for sharing this and for just being real, I wish you all the best navigating this new journey and am looking forward to your upcoming videos whatever the topic, much love from the UK ❤️
Thank you for sharing your story, Elin. I also have an autoimmune disease and can relate to being hesitant about sharing that with other people. There is some frustration that comes with others feeling like you’re fragile when they know you have extra health related concerns. I have become particular about who needs to know or who I want to know. I can also understand the feeling of doubt about the future and the related feeling that there can be optimism and hope in that doubt. Managing your health and the healthcare system is unfortunately a process and I’m so glad you have loved ones to support you in your journey.
What a brave, important example you’re setting. Thanks for trusting & God bless you, sis. 🙏🌸
Thank you for sharing something so personal and sensitive. I pray that your family and friends embrace you tightly with constant love and support. ❤️
Elin - thank you for sharing your journey. Please know that so many of us are holding you in our hearts & prayers, & will continue to support and follow your journey. Allow yourself the space & grace to navigate this new direction life shoved you into. We are all here to listen & support you in all the twists and turns. Thank you for having the courage to allow us in. #TeamElin!❤️
Thank you for being true, and just you! Blessings and loads of prayers! Again, thank you for you courage and honesty!
I'm so sad that you are having to go through this, I listened with dismay. Your courage shines through and I hope you feel heard by this community who follow you. We are listening
I get you on every level. Thank you for posting this...... I have an autoimmune disease as well and wear a smile even on my worst days.... that can be as exhausting as much as my physical symptoms. Learning to listen to my body and reserve my energy when everyone wants to do something fun, is really hard for me, but I am learning. Saying no is a gift I have to give myself sometimes. Your video validated my thoughts, frustration, fear and gratitude. Thank you for sharing your story. It really made a difference for me.
Thank you for sharing this! I had a spinal tap last year too and had the same reaction. Worst pain of my life. So hard to explain but I know what you’re talking about, I wouldn’t wish it on anyone. Sending you as many moments of painlessness as possible, in this beginning of a life changing journey.
You are incredibly brave to share this story. I can’t believe you are still doing videos. Take care of yourself ! You are an amazing woman. Sending hugs and positive energy from Montreal 💚💚💚
Thank you for sharing! I will be praying for you and appreciate your story. My daughter is also a therapist and has an autoimmune issue as well. I’m so sorry!
Oh you beautiful shinning light! Thank you for sharing your personal struggle. I send you love and prayers, and know that you are never alone!
Thank you so much for sharing your story! I'm on the cusp of a probable MS diagnosis myself and hearing the experiences of others - good and bad - is so helpful. Everything you said resonated so greatly, including the odd need for external tension in life (the possibility of MS has, improbably, been a counter to my depression), and the idea that literally every day is uncertain (I could be hit by a bus tomorrow!) so it's not actually an unusual place to be.
You are so strong. I believe that a positive mind can overcome any illness. :) Stay strong.
Thank you for sharing so honestly and authentically. You don't seem "downer-ish" to me, simply living your experience and navigating it as best you can. Much spirit love and hugs coming to you
Many thanks for sharing such a personal story....you didn't have to but so glad you did. Know that you are not alone in this struggle. It's OK to talk about it and never feel you have to stop. Hoping and wishing you all the best.
Thank you for sharing honestly! I identify with all you're saying, & feeling! I was diagnosed with SPMS two years ago & there are so many adjustments! Symptoms ate constant! It is hard. I'm struggling to balance life too, but try to take it day by day. You will be in my prayers! Draw on your support network!
I am so sorry to hear this, dear Elin! Hope you can find a way to cope with this and find a way to have some relief of symptoms. Wish you all the best! Love your UA-cam-video's!
Thank you for sharing! You have been through so much and to have the courage and open heart to share with us is so admirable… I don’t know you but I just want to give you a big hug! Don’t stop being open about what you are going through! You are not alone… I’m so glad to be here even if it’s just through watching your video. Sending healing and love your way…❤️
Thank you for your bravery in sharing your story. My oldest daughter has MS. Your story really helped me to understand more of what she's going through.
Thank you very much for sharing. Your ER story was heartbreaking. I have three family members with MS and each one of them are so different in the way it affects them. I wish you well and I will keep you in my prayers 💕🙏
Elin, you are very brave to share your story. I’m sure it will help a lot of people. Praying for you as you find your way with this condition. Sending hugs!
Sending my love and support!
My mom was diagnosed with MS in 1987 when she was about 50. She had spent 15 years trying to get answers to her miscellaneous symptoms. She was treated like a stupid hypochondriac woman by so many doctors. That was very hard on her self-esteem! She had a slow progressing form of the disease, so that is probably why she didn’t get diagnosed earlier.
Here are a few things that she realized:
-She couldn’t have 2 busy days in a row. That would set off a bad couple of weeks. As she got to be in her 70’s and 80’s, she would only do one or two things a week. We would combine trips to a doctor visit with lunch (we would sit in the car to eat), a pharmacy pick-up and sometimes a quick trip to the grocery store. That would be about 3 hours and more than enough time out. She stopped going to clubs and church in her last 5 years, but that wasn’t because if MS, but more from depression and elderliness.
-She needed to avoid getting too hot so she would carry ice water with her at all times and stay in the shade. She sold her black car with a black interior and bought a white car with a tan interior.
-If she did light exercise every day, that helped her emotionally and physically.
-If people were doubters, she felt sorry for them. She tried to learn from their faux pas and be more empathetic when others had difficulties.
By coming forward and talking about this, you will be helping so many people! There are viewers that are having symptoms, or have people in their lives who have symptoms and have no clue that they need to get checked! And those that are already diagnosed need support and can offer support!
Bless you and I hope you continue to be open about your journey!
Bless your mom. I felt like I was reading my life story. Unfortunately doctors still seem to think women are depressed or hysterical if we aren’t 100% pleasing at all times. I’ve learned over many years that I know what I can do and I don’t apologize for speaking up when something doesn’t work or people won’t listen. I , too, look fine and smile through the challenges but it is definitely exhausting. I’m glad your mom has your support.
I was wondering with older women. My sis has ms for years but I am 58 and fatigue and pain is crazy.struggle bus. Dr ignore
I could be your mother; you described my life exactly! But my diagnosis is psoariatic arthritis, another autoimmune disease. I have multiple lesions in my brain and MS was ruled out early on because they remained unchanged on periodic MRIs. God bless the MS doctor who stood by me and referred me to other specialists to determine exactly what autoimmune disease I have. When PsA was confirmed, he said it apparently had caused inflammation in my brain at some point, causing the lesions. Three years later and he still keeps me as a patient because the symptoms of MS and my PsA are similar. I also am counseled by mental health at the MS clinic for my chronic depression and anxiety. I'm primarily followed by a rheumatologist, however.
You and your mom might get a kick out of the "chronic illness humor" Instagram account. Laughter is the best medicine! I'm 67 and so far am able to navigate through this alone but in slow motion.
What a kind ans wonderful reply for her, sharing info. about your mom.
You are so brave for sharing your experience. It is important to talk about even the painful things in life because that's what makes us human. And in sharing that you are also creating an opportunity to connect with your community more and expand that community. I have a feeling the people in your life do not think you are making any of it up and that it may be the harshest critic of all who is planting that seed, your self. Be gentle with yourself, give yourself time to rest and just be. I'm sure it will take a long time to learn how to navigate and I'm sending all my love your way while you do so. Hugs from San Francisco