Do You Wish You Could Return to the ‘Old’ You?
I saw this question asked in a group somewhere not long ago and it got me thinking. Would I go back to the way I was before my multiple sclerosis diagnosis?
No, I wouldn’t.
That may sound strange, I know, but I think my diagnosis was the best thing to happen to me.
Initially, I wasn’t so grateful. Being diagnosed was completely unexpected and terrifying. But overcoming the grieving of my former self, which took about four years, allowed me to grow.
I started to appreciate what was around me and those I was spending time with. I thanked my body for what it could do, and for the first time, I realized how much energy everything required.
It also opened my eyes to the world of invisible illness and the way people judge one another about things they can’t see, such as criticizing someone who uses a disabled parking space because they “don’t look disabled.”
If I were to go back to my former self — that self-conscious, unconfident, worrying-about-everything, workaholic self — I’d say, “Buckle up, princess, it’ll be a bumpy ride. But after that? Well, it’ll be pretty awesome.”
The opportunities I’ve had since being diagnosed, the people I’ve met, those I’ve interviewed on my podcast, and those who told me I inspire them mean everything to me. I have found a purpose that is bigger than me. I feel like I have found my “why” for being on this planet.
I know this may come as a shock to the system. You might be thinking, “How can you say you’re grateful for this unpredictable illness?” The answer is that I choose to be.
One of my favorite sayings is, “It’s not the cards you’re dealt in life that matter, it’s how you play the game.” (If you know me, you know I love my quotes! I’ll be sharing some on postcards soon.)
That quote is accurate, right? You can either decide to be down in the dumps about a situation you can’t change or you can choose to say, “You know what? I can’t change this. It’s just going to happen, so I have no other choice but to make the best of it somehow.”
I appreciate that my situation may be different from yours because my condition is on the milder end of the spectrum, with fewer bad days now. That said, I still have bad days. I still have days when people don’t believe me, and days that are scary and hard. Thankfully, they aren’t as often, and I can handle them far better than I used to.
So, do you wish you could go back to the “old” you? Please share in the comments below.
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Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.
Reni Yousif
I wish people like this writer kept their “blessings” to themselves! I no longer say things like i wish i won the lottery, blowing out my candles on my birthday always come with one wish, to be normal, that would be my win, i wanna wake up one day and not think of the pain of ms and what ms has robbed me of, what is my body unable to do today? Can i go camping with all my friends, and be able to handle the heat of summer without being unable to move? Can i go to the beach with my friends today? Oh damn That’s not gonna happen cause today my spastic leg is not allowing me move around and the pins and needles I’m feeling are making me depressed. MS is a nightmare for some, so yeah I think many wish they could return to their old self
Asia
Reni, I'm sorry that MS has been harsh in your experience. It's not that way for everyone. People newly diagnosed need to hear that there can be blessings in this uncertain diagnosis too. I'm so thankful that when i was diagnosed in 2014 I was able to find many things that spoke of the positives. Had I not been able to, my minimal understanding of MS would've sunk me in a pit of depression. It's not all gloom and doom for everyone. Certainly there are those that experience MS harshly and those who do not. Its important to keep the positive and negative balanced out, for mental well-being.
Joseph Genarella
Since I was diagnosed with MS when I 19 years old, 55 years ago, I never knew what was like to live a normal life
nancy
i agree with asia. my body has become a prison. i'm eventually going to be a brain in a bottle. i am an artist who can no longer make art; ms has negated my means of coping and my sense of identity as well as my ability to move. i can type with 1 finger and usually swallow and talk and breath. but the fun parts of my life, hiking, dancing and being generally helpful have been replaced by reading and watching movies. and, after 20 years of primary progressive ms, i can only expect more loss and death.
kay welsh
I agree with Reni. I would do anything to be able to walk and see again. MS sucks!
Michael
the author simply posed a question. there is no need to disparage what she is trying to do! i am sorry, but i have to be blunt here. MS has robbed me of a lot, everything you are grousing about and more, yet i am happy! magic? no... attitude yes! MS is only a nightmare if you let it. i can't do a lot of things anymore, but i can still do a lot of things (even new things). i may have lost a lot, but i am still grateful for what i do have. i wish occasionally that i could have some of my old abilities back (yes i deal with depression too), but dwelling on what you used to have will get you no where. move forward.. find a way to be happy. you are still in control... its up to you. misery may love company, which is too obvious in many of these forums, but i don't have to attend that party!
Christineg
I agree with you. I lost a lot of relationships with friends and family because I became disabled. My job became in jeopardy because of layoffs and let's get rid of the old and sick attitude. Whenever I get a chance I warn the newly diagnosed to keep quiet about them having ms. They need to live in the real world not some made up nice nice world that this article depicts.
Asia
I, too, would not want to go back to my pre-MS self. I was stressed to the max, working ridiculous hours and taking on too much. I barely had time for my husband and our 4 teenagers. Our family was held together by a thin thread. Since my diagnosis 6+ years ago I gave up my career and have become a stay-at-home wife and mom. My marriage is way stronger. My kids have a great relationship with me. I am able to listen to my body and care for it properly. I've learned the value of time, health, activity and rest. My spiritual faith has grown immensely. I wouldn't trade this for the world. My disease is also pretty mild so far, with an awareness that it could change any minute, although I dont live in fear of that. I resonated with all that you wrote. Thank you, and may your journey co tinue to be blessed.
Stef
Great post! I really enjoyed reading it, I too have had MS for about 5 years now. At first, I wanted to end my life and not do it with my new sidekick, MS, but WOW have I come a long way. Some days are harder than others, but isn't that life? It always gets better. I adjusted my diet, mindset, activity levels, stress levels and completely transformed my life.
Christopher
There is a problem with the article and the author: they’re both disingenuous. I’ll explain...
Everyone finds their ‘way’ through their own difficulties in their own ways and in their own time. There is no right way or wrong way, just different ways. Also no one has an epiphany the same way as anyone else, and coming to personal conclusions like epiphanies are not always positive—sometimes they are painful and crushing. That’s not to say we can’t learn from them and pull ourselves through. But all the ‘pie-in-the-sky’ self improvement blather doesn’t really help anyone, as it’s too difficult on the psyche of people trying to achieve something that another person has idealized. It sounds more like a caffeine infused fever-dream than actual hard-won advice. To the author I say, "Great, I’m happy for you you’ve found something to turn your circumstance into a positive experience." But it’s not good advice to pass to others as a recipe for some kind of success. You are like many others who have found something and turned it into a business opportunity. Not everyone has the time, energy or inclination to start his or her own podcast, or meet all kinds of “interesting people.” And many people don’t experience a “mild" course of multiple sclerosis. I don’t need to denigrate your article or your take on life, but what you are doing here won’t be appreciated by many people because you’re trying to sell something. Maybe not literally, but it’s still trying to sell an idea or concept—it doesn’t work because you don’t understand your audience. I’ve received your emails, and it’s all more like flashy sales prospectuses than actual connection. You don’t understand the pain others are going through because you haven’t experienced loss and pain like that deep enough. That’s great that the disease opened your eyes. But I, along with many others, would give anything to go back to a time when we could do things for ourselves and didn’t experience profound pain and suffering... happy or not.
Laurie
Yes, I completely agree with Christopher. This disease has robbed me of a flourishIng business, the ability to take care of myself and stuck me with horrible untreatable pain. I would love to go back to my old self before my branches were chopped off and our household didn’t revolve around a partially disabled member.
Sue who?
I’m with you on that Christopher! Very well stated! Less than 4 years from initial MS episode I ended up wheelchair dependent. Now I’m down to one relatively functional limb. I have the disability abdominal trifecta; Baclofen pump, suprapubic urinary catheter & a colostomy. Hell yes! I’d go back to my old self in a heart beat. This author has no idea what it is to passionately long for the ability to just freakin’ stand up! Most people I encounter comment on my ability to stay positive. My being positive doesn’t mean I don’t curse my non-functional body when I’m by myself & am wrestling it to transfer into bed or a myriad of other tasks I struggle with on a daily basis.
Heather
I agree.
FB
Christopher - I just wish this site had emojis because if it did I would be filling up a page with "applause" icons for your comment. So often this type of "positivity" crap comes from people who have pretty mild MS and haven't had it long enough to really try to live with what it can do. Their "bad days" are what some people experience as a "bloody good day". I have learnt much through my experiences with MS, and it has changed some of my priorities and perspectives, but I may have gone through those changes anyway as a part of life's learning experiences. Would I like to be able to go out without worrying about wetting my pants in public, to be able to go 'shopping" and visit more than one shop and know that I'm not going to pay the "MS Tax" for the next 3 or 4 days, to be able to look after my own house and garden instead of watching them deteriorate and having to pay someone else to do the bare minimum, to not need a minimum of 10 hours sleep every night just to get through the next day, to have a brain which works outside the ours of 10am to 5pm, would I like to know that in the future I could give my walker to an aged care charity because I can walk instead of because I've had to go into a wheelchair. You bet I would.
"Choosing to be grateful" for MS is utter BS, and another five years, or after a catastrophic relapse that results in a significant increase in disabilities/ impairments might see a rather different attitude being expressed. Please save us from unrealistic drivel spouted by those who haven't yet fully experienced what MS can do and where it takes some people. I too am one of those people who would far rather go back to being my pre-MS person than "be grateful" for getting MS and a few changes in perspective which do not outweigh the damage this disease has wreaked on my life.
Nancy
FB- You are spot on with the "MSTAX" and
I agree with the your feelings towards the comment made by people with mild symptoms. Hell ya I'd go back no further questions asked.
Sharon Mander
Hi Christopher, I just wanted to say that I, too, would rather go back to the way that I was, before Multiple Sclerosis happened to me. I've never gotten depressed about it, because from the beginning, I made up my mind that I would search for any ways to battle it. I have, also, prayed to God to lead me to any possible cure, not only for myself, but to help others. too. I was diagnosed, with MS, six years ago. I read about, how stem cell treatment can help reverse MS symptoms. Two years ago, I decided to fly to Tjuana, Mexico to the Stem Cell Institute there to get their Stem Cell treatment. My doctor, Rebecca Lopez, there, is one of the world's top, six experts in Stem Cell treatments. My boyfriend traveled there, with me. We were very pleased with my doctor, Rebecca Lopez, and the two nurses that attended to me 24 hours a day. Our room at the 11th floor of the Grand Hotel was great, with a view of the city, and a window seat that extended all along the windows on one side. The food was wonderful, and so were my nurses. I had my own stem cells that were extracted from a mini- liposuction of some fat near my bellybutton. Then, they treated them in their Lab to energize them more, before they returned them to my body by IV, and by 2 injections. After, I was in the recovery room, I was wheeled back to my in the Hotel tower, next door. The stem cells worked on me, right away! I didn't need any assistance, when I got up out of the chair, and walked around my room! I really started feeling, like my old self, again! I was so surprised that it happened so fast! On our trip, back home, the next day, I really still felt wonderful. I had no problem walking, through two airports, unassisted, to connecting flights back home! The stem cell treatment continued to strengthen my body for months afterwards. Since then, the good effects started to lesson, after I had fought a bad flu virus. So, I plan to go for another Stem Cell treatment, as soon as I can afford to go. Also, I want to tell you about another treatment that I hope to get, after it is approved from the Clinical Trials, this year. It is a treatment that was discovered by a doctor in Cambridge, England, called Dr. Su Metcalfe. She is one of the head doctors in the Nanotechnology department at the hospital there. The treatment is thought to be a cure for multiple Sclerosis, and I am really hoping that it is! You can read all about Dr. Su Metcalfe's treatment by looking up her name, and town, online. I hope that this news, will help you, too! God Bless you. Best Wishes, Sharon
Reni Yousif
Sending several virtual claps!
Mark Collins
Yes I would like to go back to pre epson barr virus.I was twelve years old was not dionsed with with ms until age thirty nine. Let's just kill ebv in the human ms body and hope we all do better.
Sophie
Last year I experienced my first “neurological episode” (what I call flares). It pretty much took everything away from me that I loved being able to do - walking, playing piano, being in the water, even wearing woolly jumpers! It was horrible to experience such a loss of ability so quickly and I didn’t enjoy that part of it at all. However, it REALLY got me thinking about my new life going forward. I changed my priorities, my diet, my trust in experimental medicine... It facilitated a massive physical and psychological overhaul in my life. But I have to agree with Jessie here - I wouldn’t go back to the previous me if I had the choice. It has been important that I’ve learned to change my goals in life and forget about the judgement of others. And yeah, I miss being able to run headfirst into whatever I wanted to do, but I’m proud of the person that I am today and I wouldn’t have ended up the way I am without multiple sclerosis.
David Boutwell
Absolutely. I would take my previous “life” back in a moments notice.
This episode of MS began on a Friday, March 23, 2001. The SPMS began then. Compared to today’s MS status it was then relatively inoccuous.
I wish not to expand on the various maladies I endure, but suffice to say that overall the quality of life I experience due to pain and inadequacies “sucks.”
And, life is a bit more complicated than this space permits. Should anyone desire to discuss this issue further my email is [email protected] .
Heather
When I had optic neuritis in 1978 while in college no one knew much about MS. I was fortunate and it went away, I married, had two children and remained extremely active for many years. Life was not without physical challenges but my MS was "mild". I was self employed doing garden design/maintenance. Now, despite my effort to eat well, exercise and take things to help with my MS symptoms my ability to walk has made it necessary to use a forearm crutch and wheelchair. I can no longer use my right leg to drive. Standing to make a meal is impossible. The heat and humidity keep me indoors with air conditioning. I had difficulty sitting at my daughter's outdoor wedding. No beach, walking on the sand, gardening,... And the pleasure of taking a shower standing up no longer exists. Yes, I am grateful for what I can do and most of all for my loving family and friends. But clearly the way things are for me now I would be very happy to have my old life back!
Steve
When you hit EDSS 6 maybe yo can revisit this post. I get it that you are trying to point out the positives from your illness but to not want to go back to a healthy you is a stretch.
Suze
Be careful what you wish for! I assume you are trying to remain positive about the MS diagnosis you have been dealt, and think others can benefit from your outlook. But, by your own admission, your case is on the “milder end of the spectrum” and you have “fewer bad days now”. Well, good for you. A lot of us also started out that way, and it’s easy to live when there aren’t many bad days and mild symptoms.
You may become complacent and even tell yourself “This isn’t so bad, I can handle it!” In fact, people used to tell me that my positive attitude was what kept the MS milder, in my case. And I was convinced that it wouldn’t progress.
Well, I was wrong. At just about the 20th year of my diagnosis, at the age of 47, I began the descent into Secondary Progressive MS. I never saw it coming. I just developed a limp one day while spending time with my horses, and it began rapidly getting worse. Within a couple years, I could no longer walk without a cane or walker, could no longer ride my horses (I really fought that one until I fell off three times and had to accept the reality), and couldn’t do most of the things that I had in those first 20 years of relapsing remitting MS. The pain and weakness took over my body without any warning. Still, I remained positive for awhile and decided to “choose to make the best of it”.
And that worked for a little while, but my body is now ravaged with pain and weakness and new symptoms show up daily. My intent is not to scare anyone and I’m certainly not looking for sympathy. I realize that there are MS patients that have it a lot harder than me, just as you have it a lot easier than me. I really just wish that I had treasured those years of relapsing MS and done more when I still could. I feel like no one told me it could get worse - a lot worse! And yes, I would give almost anything to go back to the “old me”, despite the things living with MS has taught me. There may come a time where you are not at all grateful for this diagnosis - be careful what you wish for!
Karen
Thank you for such an objective, honest post.
Much appreciated. You are so right in every respect.
Karen
David Boutwell
I left a comment earlier. That was prior to reading the comments already posted. Having read the comments I want to comment on Christopher’s comments with two words, “ditto, amen.”
Shawn Poche
I would go back to my old self without a second of hesitation. Despite what this disease has done to my body, I hate what it has done and is doing to my family. So I say hell yes I want my old self back.
Lisa Jackson
I would give ANYTHING to be my old self. Before diagnosis I practiced martial arts, weight trained, practiced yoga, ran three miles daily, was a wife and mother, and did a MYRIAD of other things. Now I am a couch potato, am obese, take 11 prescribed meds and nine vitamin supplements. What's so debilitating for me are the symptoms (and I suffer from most [if not all] symptoms in the book) I had a very full life before diagnosis, and now am reduced to being a mere spectator as opposed to participant.
Cyndi
I'm with Christopher and Reni on this. Glad for the author that she has dicscovered a new balanced life but in answer to the question would you go back to your pre-MS self...SERIOUSLY? I have had MS for 35 years and yes I am "living with it." The first 25 years were truly "not bad" and I am thankful for that...but that doesn't mean I would chose 25 years of "not bad" for 25 years of me pre-MS. The last 10 years reflect a steady decline in independce and daily challenges such that, today, I wouldn't be able to do a fraction of what I do without an incredibly supportive husband. In his absence I would require signicant live-in assistance. So I am one of the lucky ones in that I have wonderful support but I know that is far from true for most. Going back to me "pre-MS" would be a gift NOT just to me but to my husband as well.
Ann
I have had this for so long - struggling with everyday things have actually forgotten what it was like before!
Christopher
Thank you everyone for sharing by opening your thoughts, and just as importantly your lives here. It is really helpful to read about other people’s similar experience, as doing so helps to not feel so alone. I am just like a lot of people with advanced MS... I’m actually bed-bound in a nursing facility. I try to use my experience to help others, but it’s not always easy to read. I think the unadulterated (but never crude) truth is important to make people feel a space is safer to open up in than candy-coatings, or bombastic, unfiltered blatant honesty. We all have a story, and need space with understanding, patience and compassion to share with everyone else in that space. I believe Ms Ace has some valid points, but they’re just for a different audience. Actually it was a good thing that this article got so many of us to share our thoughts and experience. Thank you, and don’t stop reaching out and trying to make sense of this unpredictable disease that affects our lives so profoundly.
Pete
Absolutely I would go back to my pre-ms body in a heartbeat. In addition to all of the above great comments I would love to not feel like an anchor to my wife and family. I'm holding them back from experiences like traveling, visiting relatives and friends, concerts, walk around the block etc. Not only am I missing out but so are they. Because of my ms and what it has done to my body I'm not able to do too much. I may sound negative but I'm not bitter or mad just realistic.
Reni Yousif
At first I was so afraid to put down what I really felt about this article as to not sound “negative” because in this day and age we are all expected to stay (fake) happy and be positive and such but I am so glad we are making our angry and frustrated voices heard! Otherwise we become complacent in the lack of ever finding a cure and the possibility of a “return to the old you”
Cynthia King
MS for 27 years. Yes, there have been good things, I would never have been able to run interference with my daughter who is dyslexic and the school system. I would have been making presentations in Buffalo, and this poor little second grade girl would have been left behind reinforcing the idea that she was stupid. By the time I might have caught on this was how she felt she might have internalized that dialog. Instead, they heard me coming, my forearm crutch clomping down the hall. My kid knew she must have been worth something if her mom was willing to haul her butt out of bed on a snowy winter morning to be at some meeting they deliberately scheduled at 8am hoping it was too early for me to show up. Instead I was able to be at every one of those meetings. She once asked me what I would do if I didn’t have ms for a day, and I didn’t even think about it: ice skate and go dancing. The only thing that bothers me know is being referred to in the past tense, as in your mother used to be (fill in the blank) As for the kid, she graduated from a division one school in four years with a dual major. But overall, I’m too tired most of the time to care. It’s been more cow pies than milkshakes. But you shoulda seen me then.
Barb Peters
I would like to thank everyone who took the time to comment. Your comments took the words right out of my mouth. Hell yes I would like to go back to the old me. To be able to walk again would be more than wonderful. Christopher I think you should write for this column! Your words were expressed so well. I think you helped a lot of readers left dumbfounded after reading this article. Myself included. Thank you.
Kristi Lausch
Right on Jessie! Keep rockin' positivity as it will serve you well! I was diagnosed in 2010 and yes, it's been a rough roller coaster and some days, I certainly have my pity parties BUT, I think in many ways, MS has made me a stronger, better, more empathetic person. It has opened my eyes to the suffering in our world. My two sons were teenagers at the time of my diagnosis and it has taught them that life is not perfect so how are you going to handle the curve balls? My youngest is now 24 and he recently got a tattoo that says WHY DO WE FALL? His answer is "so we can learn to pick ourselves back up again". I see LIFE in a different way and I have found purpose, even in this MS battle. OUR HEALING HAPPENS WHEN WE EMBRACE THE WOUNDS AND DISCOVER THE GIFTS ALONG THE JOURNEY!!! Physically and mentally, there is so much POWER in positivity.
S Hughes
MS for 35 years, since age 26. Was advised not to have kids but did so anyway. Did have serious relapse post partum with each of two pregnancies but worth it for me. Gave up career completely at age 36 due to MS and use what energy I had raising our 2 sons. So grateful for supportive husband and family. At age 61 I am well into secondary progression and have daily pain, cognitive issues, fatigue and weakness in addition to disability. Bladder issues relentless. No longer driving, Chair in the shower, cane to walk and see a walker soon in my future. Grateful not to have had more serious disability yet.
So, yes on reflection, I did get to spend more time at home with my sons vs. a career if life had gone differently with no diagnosis of MS. But life pre MS had more options. Who realistically wouldn't chose a "healthy normal" life pre MS if they had the choice.
Michael
the author simply posed a question. there is no need to disparage what she is trying to do! i am sorry, but i have to be blunt here. MS has robbed me of a lot, everything you are grousing about and more, yet i am happy! magic? no... attitude yes! MS is only a nightmare if you let it. i can't do a lot of things anymore, but i can still do a lot of things (even new things). i may have lost a lot, but i am still grateful for what i do have. i wish occasionally that i could have some of my old abilities back (yes i deal with depression too), but dwelling on what you used to have will get you no where. move forward.. find a way to be happy. you are still in control... its up to you. misery may love company, which is too obvious in many of these forums, but i don't have to attend that party!
Steve
No one is saying not to move on and make the best of their situation and to find happiness in their new normal. But to say that they wouldn't go back to the days when they were disease free is frankly absurd.
Gale Langseth Vester
First, so many of you have said already the many things that I’d wanted to say from their own perspectives, so thank you!
Second, would I choose go back to my pre-MS body in a heartbeat? In a nanosecond! MS is as much a thief as it is a disease. But only if going back to my pre-MS body wasn’t also a time machine, because that would be cruel to be unable to stop my train from colliding into a worthless heap of scrap. Yes, that is how I feel every day, now that I’m in the secondary progressive group, after dealing with the relapsing-remitting type for more than 10 years. I’m not one to detail what I used to be able to do, compared to what little I can do now, so I’ll say only that I have an incredibly patient (and brilliant and resourceful) husband, who would be frustrated by my saying that, if I were a pile of scrap, I could at least be melted down for re-use as something.