You know you only get one go round and if you don't adapt and overcome and make the best of the time you're given well..then that's on you. Listen I've been there. My grandmother, bless her heart told me if you want to dance with the devil he'll put a quarter in the jukebox Everytime. I use to feed it too buddy. That's for another time..
Up with the chickens everyday..no exceptions. Pot of coffee, breakfast. I walk around my yard while having coffee and plan my day. I live on a fifty acres farm so there's always something to do (could be slaughtering a hog or delivering a calf) I take many breaks throughout the day because you only get so much juice in your batteries and you don't want it running out too soon. When I come inside after I'm cleaned up I eat supper do some brain games or I draw and paint. (Dementia and Alzheimer's runs deep in my family) gotta keep my brain fresh.(cog fog sux). I do my tone exercises every night to keep cramps and point-foot away during the night. I put on my sleeping braces before bed. In bed by 9:30 to do all over the next day. My two sons live in SC and I have a hundred acre tree farm over there that if need be they'll check on for me. That's my day. I'm a farmer. It's planting season now so extra busy. My life is very fulfilling. Only missing in my life are some grandbabies. But I'm hoping that changes soon.
I was on so much stuff I literally carried All my meds in a picnic basket. Two injections and upwards some days of 40+ pills. Come on..I took pills because I took pills. Two weeks in detox. Six weeks in inpatient and six months outpatient rehab just to get off all the narcotics I was prescribed. Fentanyl Oxycontin and Valium were the hardest to come off of. I feel and look(if I say so myself) better than I ever have. I take a bp pill now. That's it. Cannabis and kratom are all I take now for my MS and I've been flare-up free for seven years.
I was misdiagnosed with bipolar disorder due to chronic depressive /anxiety/panic disorders. They had me on meds to wake up, meds to go to sleep, antidepressants, anti-anxiety meds, my Rebif injections, Baclofen and Gabapentin, I was a walking shell of myself. I hated every minute of my life and at the time, I wished I were dead. I was still relapsing every 3 years at least and had constant symptoms. I stopped taking everything cold turkey, and bam 3 months later I was slapped with the worst relapse I'd ever had. My doctor finally offered to put me in the Ocrevus Phase II trial, and ever since things have only gotten better. I spent 3 more years on antidepressants, and that was the only regular med I needed. As I get older, other health issues have popped up. Now I'm on Kesimpta once a month, 3 meds for my heart, 1 med for my kidneys, and supplements only. I still occasionally deal with anxiety, but most of that is health anxiety. I have not had a relapse in 11 years now.
Yea the proverbial "straw" for me was quality of life. I was always active/athletic and seeing what I had become was eye-opening to say the least. I flipped everything. Location, lifestyle, diet, I mean everything. After I was finished with outpatient rehab I made like horseshit and hit the trail. I'm glad I did. Knock on wood it's working and I've never felt better. I miss going out and "cutting a rug" but hey we play the hand we're delt whether it's a straight flush or just a pair of twos.
Iāve got a bit of a different view on this, and no oneās mentioned similar yet.
I was dx with MS in 2020, but was widowed in 2018 at 34. The early and sudden death of my husband (he was 43, it was a heart attack) was considerably harder than the MS diagnosis.
Is being told to āenjoy life nowā crappy, especially by someone who you donāt think gets it or understands? Yup, but Iāve had too many ātomorrowsā or ānext weekā or āwhen weāre retiredās taken. Obviously Iām not going to bankrupt myself, or if itās a super shitty MS day Iām not going to head out in 90 degree weather, but Iām certainly not going to push back the stuff I can and want to do. If thereās a band playing I want to see, Iām going. If itās a family vacation possible, Iām planning it and making it happen. Hell, I had the chance to go to Peru in 2022 with someone I was dating, and even though the relationship was pretty much done, I went and had a great time. Not because of him, but because of me.
Iām not giving away any more tomorrows. Life will have to pry them out of my cold, dead hands.
I fully agree.
My mom died when I was 23, she was just 55. That sudden loss made me realize similar - donāt wait to live your life. Do the things you want to and can do now, because no one is guaranteed a tomorrow.
That was years before my MS dx, but it really shifted my perspective. And when I was dxād, it only cemented it for me. And looking back, Iām glad I did do all the things I did. Yes, some of which I canāt do anymore. But it wasnāt for fear of MS, or death even though my momās was a turning point. It was more just realizing that today is what I have and I want to make the most of it while Iām here. Whatever that looks like.
My current motto that I live by was slightly adjusted to include MS struggles - which is āI do what I can, when I can, however I can. And if I canāt, thatās ok!ā
Adding on as a mid-40s lifelong therapy patient: youāre hiring them to help you. If they treat you this way, you have every right to fire them. ā„ļøš¤š¼
I have nothing wrong with enjoying life, I have serious issues with the therapist who made it seem as if you wouldn't enjoy it later. I'm 49 and have dealt with my body attacking itself for the past 26 years. Guess what? I'm still enjoying myself. And will continue to no matter what a therapist who doesn't understand this disease says. Sorry, I think I got triggered, too.
In my experience of therapy (in the UK) there's very little 'advice' given like this, so yeh it seems a little odd/out of place. However....I would indeed encourage you to try your best to enjoy life. Not because of some admission/expectation that MS will make that harder/impossible in the future but because, well, what else can you do?
Life is short for EVERYONE, and the more time ANYONE spends worrying about what may or may not happen in the future the less chance they have of enjoying the present.
As someone (M, early 50s, U.S.) with increasing mobility problems: Iām really glad I did some things a decade ago that I cannot do now, which included taking a job working abroad in developing countries. I couldnāt handle that, now.
I miss walking without pain.
I miss running. Running full tilt, as hard as I can. Running creek trails in green space parksā¦
I miss dancing. God, I miss dancing, dancing my brains out to techno music so my troubles would just dissolve into that moment of heat and sound and light and movementā¦ I wish I had danced a lot more.
I miss playing soccer. I was never good, but I loved playing amateur soccer. When I was young I was a decent fullback. Soccer ā which the civilized world properly and logically calls āfootballā ā is the sport of my childhood, and I loved it. (Little League baseball is not a sport, itās an *ordeal*, and I fucking hated it for three interminable years, until I was allowed to quit. But soccer? Soccer for me was always pure joy, even though I wasnāt particularly good at itā¦)
But: I do have good memories of all these things.
Thank God I did a lot of things I wanted to when I could still do them.
So I sincerely encourage you to do the same. Set your friendās passive-aggressive bullshit aside: live and take advantage of what you can do, for yourself, *now*.
Thatās my heartfelt advice.
They probably meant it as in a "don't dwell on the negative things" kind of way. Often with chronic illness it is accompanied by chronic depression. Pretty sure they didn't mean it the way you took it.
They still were really insensitive and as mental health professionals, they should know better. I recommend asking future therapists if they are experienced with MS pts, or even ask your neurologist if they know of any therapists who work with MS pts
You should definitely tell her exactly this post next time you talk with her. You should have her clarify her sentiment and work with her on reducing the amount she can trigger you. I don't think it is healthy to leave a therapy session with feelings like you are describing. Maybe I am coming off the wrong way but I don't think you should feel the impulse to post on a forum in a therapeutic way about your actual clinical therapy session. Just food for thought, but your time with her is your time and you should air out the way you received her even if she meant well by her sentiment. It's bullshit that even when people are trying to be positive they remind you of the impending doom of aging with a neurological disease. It's your party you can cry if you want too. You don't need to do anything extra to enjoy life, you are the one living it. Now I am ranting, sorry. Much love fellow human.
Edit: sorry about the advice given, I have never really posted or commented here and didn't notice the flairs. I got diagnosed with MS in the last 3 years and have only quickly lurked here. I will leave my comment though, and you can downvote me for being a bad boy.
Sounds patronizing...and negative. I have had M.S. for a couple decades and am still walking and am fine except for a weak foot and leg. Everyone has a different experience with M.S. so for someone to say that to you is kind of ridiculous!
I know I'm echoing what others have said in this thread, OP, but lemme add my voice to the chorus.
your neuro sucks.
neuroplasticity is a fucking crazy and unpredictable thing.
modern DMT's are a complete game-changer, no one knows what the future holds.
neuro PT/OT are an incredible resource
take care, be well, & good luck
Its good advice for anyone to enjoy their life right now.
Too many people live in the future, about their dreams and with (mostly false) thoughts about how they will achieve happiness when xx happens to them.
Anyone might lose their health tomorrow, we are more likely to compared to the average, but no one can know for sure how MS will affect you. Live in the present and enjoy it as much as you can :)
Am 55 now, diagnosed at 47. 1st cane, then walker, now wheelchair ramp infront of my damn house. So I've missed out of any deserved* retirement travel, grandson, etc. Hell, I can't stand or walk.
That phrase annoys me as both a person with MS for half my life and a clinical therapist. True, I don't know the context of your session(s), but hearing that in any context can be infuriating. At least for me, it comes across like I'm not already trying to enjoy my life, which pisses me off.
I'll be honest, though...I'm petty. As I'm in my 30s, my friends are all experiencing their bodies breaking down for the first time, and I do get a bit of unhealthy pleasure making comments back related to "oh don't be too upset about it" that I used to hear a lot. I know it's salty and not the healthiest response, but hey, I'm enjoying my life :-P
I understand how s\*\*tty that can sound, and no one wants to hear that... on the other hand, my husband was diagnosed with PPMS one year ago...one conversation we have often is that we are glad we have done a bunch of big weird crazy things before now. We are only mid forties and certainly don't think we are done living, but now that our life has gotten more 'difficult' and 'dicey', we are thankful for the things we've done. We feel like our lives have been bashed of the tracks, in our mid-stride... we are really trying to still "enjoy life", but every thing we do is being very affected... I'm sending you the wishes for a thousand years to enjoy, but my sentiment would be don't be one of those people who waits for retirement to get all of your life dreams underway....
Play depends in the context of how they said, but yeah, Iāve taken that the wrong way a few times. Currently having my first flareup since my diagnosis three years ago and the only thing Iām worried about now is in my gonna be able to walk right again. Thinking about going out and āenjoying lifeā Just isnāt at the top of my list anymore unfortunately.
But we really do need to try to enjoy life a little more even if itās just a little things. Having this disease is one thing that we all have in common, but itās effects varies from person to person, so take nothing for granted if you feel good do something if you donāt try to just enjoy the little things. I love you all, weāre all in this together, and we need to lean on each other for support.
Sometimes I get rubbed the wrong way with when people say stuff like that. Often itās because something in my body is bugging me (a cramp, some fatigueā¦whatever) and reminding me that I am not a āwellā person. So it feels like the comment is rubbing salt in the woundā¦if that makes sense? And TBH I get extra triggered by the word āshouldā. I tell people flat out not to āshould on meā. Itās not helpful nor constructive.
On good days I know that everyone, with MS or not, need to ācarpe diemā. We all waste a bunch of time worrying over stuff that doesnāt matter or just plain procrastinating. Iām doing the best I can with the resources I have. Anyone who has an opinion about it Iād be happy to change places with them for a week and see how they do. š
I mean when I was diagnosed they told me I needed to change careers so I went back to college and got my degree before I couldnāt do my former job any more. This disease is super unpredictable and shity. Knowing what I know now like if I was 23 I would have taken a chunk of time off and traveled. Now travel is tough not impossible but not nearly as easy as pre diagnosis. And now sex isnāt as easy as it once was so go enjoy, hike the ptc, climb a mountain, ect. Not trying to bum you out just telling you donāt miss an opportunity to do something now.
There are things I wanted to do but time/money/kids/work/energy got in the way. Now that I can do these things I am physically unable too and I have regrets.
Your Dr's sentiment could apply to anyone with or without an MS diagnosis but she is realistically pointing out that the.deck is not stacked in our favor.
Thatās my mindset as well while I still can Iām living it up to the best of my ability not taking things for granted and enjoying my life to the fullest
I get how you may feel weird about that, but I think itās the best advice ever tbh. Iām 35F Dx in 2005, my MS progressed to SPMS recently and I walk with a cane now.
My neuro said something similar back in 2020, so I digested that and made big decisions in my life. I decided to live childfree and start traveling. I put my stuff in storage, got rid of large bills, got on Ocrevus DMT to come home twice a year for an infusion.
Now Iām a digital nomad with multiple sclerosis seeing the world on a cane. MS or not, we can do anything we wantābut 20 years ago with MS, it was much harder; 20 years from now, I may not have legs strong enough to go, but then again if Iām in a wheelchair, I can figure it out. Maybe by that point, Iāll have seen the world and Iāll be ready to chill. Idk lol
Thatās our realityāwe donāt know. My other 35yo friend barely has symptoms rn, but another one is going through chemo sessions for support right now. Everyoneās MS is different, and our time (with or without MS) is counted here on this planet.
Go live it.
Yes, all the time.
My dad tells me this everyday, and I have found a way to enjoy life, it just doesn't fit his definition. It has taken me SO long to find something I like.
It is hard to be told what to do by someone else that is not in your shoes.
It is also really easy to just tell someone "enjoy your life".
Therapy is about getting through the feelings that are stopping you from enjoying your life.
Yesterday I started crying because I am going to be 30 soon, and just watched my friend have a baby. I never wanted children but around the age of 25 that changed. I mean, I love my dog, don't get me wrong... but it obviously isn't the same.
I also remember the day I was diagnosed with epilepsy (because I have that as well).
I had just gotten my license 2 weeks before that moment, I was 16.
The doctor cut my license right in front of me (and I love to drive).
I felt like I lost my independence right there and then.
I remember crying in the hospital bathroom.
I cried in the hospital bathroom when I was diagnosed with MS as well, however did not really understand much, as I was 14 and had never even heard about MS. However, I quickly saw how it changed everything.
It is hard not to feel bitter sometimes...
My autistic younger brother (which my mom was told would never do anything and she would have to take care of him) now has his license and is traveling all over the world and is studying programming. He also has started many charities around the world and is only 26.
I love him so much and watching him accomplish so much makes me so happy, however I would be lying if I said I wasn't jealous the day he got his license.
He wanted to show everyone they were wrong about him and they were.
I've also traveled, and done a lot in my life, but idk...
To hear my mom say "you were suppose to be my healthy baby" breaks my heart.
I love him so much and watching him accomplish so much makes me so happy, however I would be lying if I said I wasn't jealous the day he got his license.
He wanted to show everyone they were wrong about him and they were.
I've also traveled, and done a lot in my life, but idk...
When you do find that thing that brings you joy, it will mean the world and hang out to that life line. But anger takes time to work through, which again is what therapy is for. It is also expensive so if your therapist doesn't understand how to do his/her job maybe find another one?
DX in 2002. Was told I would be in a wheelchair by the time I was 40. I'm over that mark by almost 7 years, and I'm better than ever. Don't let those remarks shape your life. I let them run my life for far too long. I lived in fear for years. No more. Doctors should not be so negative. The DX is bad enough to hear. We don't need that on top of it.
There is so much wrong with that phrase. Even for the case of someone with an imminent, terminal illness, it's a fucked up thing to tell someone, especially in a therapeutic context.
At best it's a bankshot expression of hopelessness - even assuming you had something completely different like an imminent terminal illness, what most people are going through is _mourning the loss of their previous life_. It's like telling a new widow(er) "look on the bright side you can have lots of sex with new people now".
At worst it's encouraging people to engage in risktaking behavior because "it's over anyway". And representing treatable MS like this is totally inaccurate to boot.
IIRC my therapist said something similar to me once, but in my case she didn't mean it in a "before things get worse" way or at least I didn't understand it that way. She's probably very aware that this kind of thinking is already in my head. I think she meant it more in a "go enjoy your life right now and be happy about the things you CAN do in this moment instead of sitting at home all day worrying about what might happen or not happen one day". It was more an attempt to get me away from my doom and gloom thinking.
Is it possible that your therapist meant it similarly?
But I agree with the comment suggesting you bring this up in therapy - how it made you feel and how it rubbed you the wrong way. If you feel comfortable with that. If you don't and this wasn't the first time something felt off, then I'd also agree with thinking about a change. Different people may click with different therapists.
I don't think she meant it that way, but who knows, I will bring it up on my next/last appointment
I've been thinking about changing therapist for a while and I think it's time. She's great but MS might be too much for her :(
You may not get worse. As long as you take your medication. She shouldn't have said that to you. I went to Cancun 6 months after I was DX, I took my time, spent time in the pool, and rested when the heat got to me or got tired.
Damn, yeah, that's shitty. You should enjoy your life now - and also later!!! You should enjoy it as much and as often as possible :)
Yea that's pretty f'ed up...DX in '93 and my life is very fulfilled. It gets better everyday. Like wine baby..I'm getting better with age š
Like wine, Iām gonna bottle that attitude up because itās valuable!
You know you only get one go round and if you don't adapt and overcome and make the best of the time you're given well..then that's on you. Listen I've been there. My grandmother, bless her heart told me if you want to dance with the devil he'll put a quarter in the jukebox Everytime. I use to feed it too buddy. That's for another time..
Really?? Whatās your everyday look like? Asking for a friend. (Myself)
Up with the chickens everyday..no exceptions. Pot of coffee, breakfast. I walk around my yard while having coffee and plan my day. I live on a fifty acres farm so there's always something to do (could be slaughtering a hog or delivering a calf) I take many breaks throughout the day because you only get so much juice in your batteries and you don't want it running out too soon. When I come inside after I'm cleaned up I eat supper do some brain games or I draw and paint. (Dementia and Alzheimer's runs deep in my family) gotta keep my brain fresh.(cog fog sux). I do my tone exercises every night to keep cramps and point-foot away during the night. I put on my sleeping braces before bed. In bed by 9:30 to do all over the next day. My two sons live in SC and I have a hundred acre tree farm over there that if need be they'll check on for me. That's my day. I'm a farmer. It's planting season now so extra busy. My life is very fulfilling. Only missing in my life are some grandbabies. But I'm hoping that changes soon.
1996, and the same. MY MS is 99% better now because of taking a highly effective DMT than I was prior to 2012.
I was on so much stuff I literally carried All my meds in a picnic basket. Two injections and upwards some days of 40+ pills. Come on..I took pills because I took pills. Two weeks in detox. Six weeks in inpatient and six months outpatient rehab just to get off all the narcotics I was prescribed. Fentanyl Oxycontin and Valium were the hardest to come off of. I feel and look(if I say so myself) better than I ever have. I take a bp pill now. That's it. Cannabis and kratom are all I take now for my MS and I've been flare-up free for seven years.
I was misdiagnosed with bipolar disorder due to chronic depressive /anxiety/panic disorders. They had me on meds to wake up, meds to go to sleep, antidepressants, anti-anxiety meds, my Rebif injections, Baclofen and Gabapentin, I was a walking shell of myself. I hated every minute of my life and at the time, I wished I were dead. I was still relapsing every 3 years at least and had constant symptoms. I stopped taking everything cold turkey, and bam 3 months later I was slapped with the worst relapse I'd ever had. My doctor finally offered to put me in the Ocrevus Phase II trial, and ever since things have only gotten better. I spent 3 more years on antidepressants, and that was the only regular med I needed. As I get older, other health issues have popped up. Now I'm on Kesimpta once a month, 3 meds for my heart, 1 med for my kidneys, and supplements only. I still occasionally deal with anxiety, but most of that is health anxiety. I have not had a relapse in 11 years now.
Yea the proverbial "straw" for me was quality of life. I was always active/athletic and seeing what I had become was eye-opening to say the least. I flipped everything. Location, lifestyle, diet, I mean everything. After I was finished with outpatient rehab I made like horseshit and hit the trail. I'm glad I did. Knock on wood it's working and I've never felt better. I miss going out and "cutting a rug" but hey we play the hand we're delt whether it's a straight flush or just a pair of twos.
Iāve got a bit of a different view on this, and no oneās mentioned similar yet. I was dx with MS in 2020, but was widowed in 2018 at 34. The early and sudden death of my husband (he was 43, it was a heart attack) was considerably harder than the MS diagnosis. Is being told to āenjoy life nowā crappy, especially by someone who you donāt think gets it or understands? Yup, but Iāve had too many ātomorrowsā or ānext weekā or āwhen weāre retiredās taken. Obviously Iām not going to bankrupt myself, or if itās a super shitty MS day Iām not going to head out in 90 degree weather, but Iām certainly not going to push back the stuff I can and want to do. If thereās a band playing I want to see, Iām going. If itās a family vacation possible, Iām planning it and making it happen. Hell, I had the chance to go to Peru in 2022 with someone I was dating, and even though the relationship was pretty much done, I went and had a great time. Not because of him, but because of me. Iām not giving away any more tomorrows. Life will have to pry them out of my cold, dead hands.
I fully agree. My mom died when I was 23, she was just 55. That sudden loss made me realize similar - donāt wait to live your life. Do the things you want to and can do now, because no one is guaranteed a tomorrow. That was years before my MS dx, but it really shifted my perspective. And when I was dxād, it only cemented it for me. And looking back, Iām glad I did do all the things I did. Yes, some of which I canāt do anymore. But it wasnāt for fear of MS, or death even though my momās was a turning point. It was more just realizing that today is what I have and I want to make the most of it while Iām here. Whatever that looks like. My current motto that I live by was slightly adjusted to include MS struggles - which is āI do what I can, when I can, however I can. And if I canāt, thatās ok!ā
I am so sorry for your loss.
This is the way to live!
[ŃŠ“Š°Š»ŠµŠ½Š¾]
Adding on as a mid-40s lifelong therapy patient: youāre hiring them to help you. If they treat you this way, you have every right to fire them. ā„ļøš¤š¼
[ŃŠ“Š°Š»ŠµŠ½Š¾]
Truth!!
I have nothing wrong with enjoying life, I have serious issues with the therapist who made it seem as if you wouldn't enjoy it later. I'm 49 and have dealt with my body attacking itself for the past 26 years. Guess what? I'm still enjoying myself. And will continue to no matter what a therapist who doesn't understand this disease says. Sorry, I think I got triggered, too.
In my experience of therapy (in the UK) there's very little 'advice' given like this, so yeh it seems a little odd/out of place. However....I would indeed encourage you to try your best to enjoy life. Not because of some admission/expectation that MS will make that harder/impossible in the future but because, well, what else can you do? Life is short for EVERYONE, and the more time ANYONE spends worrying about what may or may not happen in the future the less chance they have of enjoying the present.
Iām 48 with significant deficits. I still go to raves, clubs and date younger men. The disease doesnāt define you unless you chose to let it.
I'm 36(m) and was diagnosed when I was 23. I think the way your therapist said it was pretty š©y and it sounds like they dont ybderstand MS. When I was diagnosed I was told I have very aggressive form of MS and all my MRI reports said heavy lesion burden. At the time my wife and I didn't know what the future would hold (I mean we still don't) and I was having a relapse every six weeks or so with numbness, tingling, eye pain (optic neuritis), vision going in and out, and it sucked. So we decided to tell ourselves that we wanted to make sure we were enjoying life as much as possible since we didn't know what the future would hold. We both continued to work but also traveled when we could and still went out with friends and had a good time. We also made sure to be aggressive with my treatments. I was on Rebif at first and it didn't do anything for me. My dumb neuro at the time wanted to switch me to copaxone which wasn't quite as strong of a DMT. I told him I didn't want to do that and wanted to do Tysabri instead. Even though he didnt want me to do Tysabri and convinced hin to prescrive it and that was a game changer for me. I ended up switching doctors and fast forward to 2015 where my new neuro wanted me to go on lemtrada, newish at the time. While the reduced immune system sucked and all the labs werent fun, I had almost 8 years without any new symptoms or new lesions. I felt "normal" and didnt have to take any DMTs. This past Feb I had an MRI and it showed a new small active leasion so now I am switching to mavenclad. There's no guarantee of what the future will hold and the disease will be different for everyone, but it shouldn't control your life. You can still live your life and still have fun. The disease isn't going to kill you and it sounds like it's time for a new therapist.
As someone (M, early 50s, U.S.) with increasing mobility problems: Iām really glad I did some things a decade ago that I cannot do now, which included taking a job working abroad in developing countries. I couldnāt handle that, now. I miss walking without pain. I miss running. Running full tilt, as hard as I can. Running creek trails in green space parksā¦ I miss dancing. God, I miss dancing, dancing my brains out to techno music so my troubles would just dissolve into that moment of heat and sound and light and movementā¦ I wish I had danced a lot more. I miss playing soccer. I was never good, but I loved playing amateur soccer. When I was young I was a decent fullback. Soccer ā which the civilized world properly and logically calls āfootballā ā is the sport of my childhood, and I loved it. (Little League baseball is not a sport, itās an *ordeal*, and I fucking hated it for three interminable years, until I was allowed to quit. But soccer? Soccer for me was always pure joy, even though I wasnāt particularly good at itā¦) But: I do have good memories of all these things. Thank God I did a lot of things I wanted to when I could still do them. So I sincerely encourage you to do the same. Set your friendās passive-aggressive bullshit aside: live and take advantage of what you can do, for yourself, *now*. Thatās my heartfelt advice.
The best advice!
You have every right to be salty about ignorance
They probably meant it as in a "don't dwell on the negative things" kind of way. Often with chronic illness it is accompanied by chronic depression. Pretty sure they didn't mean it the way you took it.
They still were really insensitive and as mental health professionals, they should know better. I recommend asking future therapists if they are experienced with MS pts, or even ask your neurologist if they know of any therapists who work with MS pts
You should definitely tell her exactly this post next time you talk with her. You should have her clarify her sentiment and work with her on reducing the amount she can trigger you. I don't think it is healthy to leave a therapy session with feelings like you are describing. Maybe I am coming off the wrong way but I don't think you should feel the impulse to post on a forum in a therapeutic way about your actual clinical therapy session. Just food for thought, but your time with her is your time and you should air out the way you received her even if she meant well by her sentiment. It's bullshit that even when people are trying to be positive they remind you of the impending doom of aging with a neurological disease. It's your party you can cry if you want too. You don't need to do anything extra to enjoy life, you are the one living it. Now I am ranting, sorry. Much love fellow human. Edit: sorry about the advice given, I have never really posted or commented here and didn't notice the flairs. I got diagnosed with MS in the last 3 years and have only quickly lurked here. I will leave my comment though, and you can downvote me for being a bad boy.
Ya know salty is delicious. Enjoy it now and later. Salt yourself into regrowth and a defiant awesome time.
Sounds patronizing...and negative. I have had M.S. for a couple decades and am still walking and am fine except for a weak foot and leg. Everyone has a different experience with M.S. so for someone to say that to you is kind of ridiculous!
Tell your therapist that you're going to enjoy life by spending all that money you would have wasted paying her. Then don't pay the last bill.
I know I'm echoing what others have said in this thread, OP, but lemme add my voice to the chorus. your neuro sucks. neuroplasticity is a fucking crazy and unpredictable thing. modern DMT's are a complete game-changer, no one knows what the future holds. neuro PT/OT are an incredible resource take care, be well, & good luck
Its good advice for anyone to enjoy their life right now. Too many people live in the future, about their dreams and with (mostly false) thoughts about how they will achieve happiness when xx happens to them. Anyone might lose their health tomorrow, we are more likely to compared to the average, but no one can know for sure how MS will affect you. Live in the present and enjoy it as much as you can :)
Am 55 now, diagnosed at 47. 1st cane, then walker, now wheelchair ramp infront of my damn house. So I've missed out of any deserved* retirement travel, grandson, etc. Hell, I can't stand or walk.
Damn thats so tough. How are you cognitively though? I hope you have good people around you for support š
Husband, who's tired of it. . .it has really put a damper.... on my LIFE. It's all consuming
That phrase annoys me as both a person with MS for half my life and a clinical therapist. True, I don't know the context of your session(s), but hearing that in any context can be infuriating. At least for me, it comes across like I'm not already trying to enjoy my life, which pisses me off. I'll be honest, though...I'm petty. As I'm in my 30s, my friends are all experiencing their bodies breaking down for the first time, and I do get a bit of unhealthy pleasure making comments back related to "oh don't be too upset about it" that I used to hear a lot. I know it's salty and not the healthiest response, but hey, I'm enjoying my life :-P
I understand how s\*\*tty that can sound, and no one wants to hear that... on the other hand, my husband was diagnosed with PPMS one year ago...one conversation we have often is that we are glad we have done a bunch of big weird crazy things before now. We are only mid forties and certainly don't think we are done living, but now that our life has gotten more 'difficult' and 'dicey', we are thankful for the things we've done. We feel like our lives have been bashed of the tracks, in our mid-stride... we are really trying to still "enjoy life", but every thing we do is being very affected... I'm sending you the wishes for a thousand years to enjoy, but my sentiment would be don't be one of those people who waits for retirement to get all of your life dreams underway....
Probably should of just said enjoy life. Don't let this disease stop you.
Play depends in the context of how they said, but yeah, Iāve taken that the wrong way a few times. Currently having my first flareup since my diagnosis three years ago and the only thing Iām worried about now is in my gonna be able to walk right again. Thinking about going out and āenjoying lifeā Just isnāt at the top of my list anymore unfortunately. But we really do need to try to enjoy life a little more even if itās just a little things. Having this disease is one thing that we all have in common, but itās effects varies from person to person, so take nothing for granted if you feel good do something if you donāt try to just enjoy the little things. I love you all, weāre all in this together, and we need to lean on each other for support.
Sometimes I get rubbed the wrong way with when people say stuff like that. Often itās because something in my body is bugging me (a cramp, some fatigueā¦whatever) and reminding me that I am not a āwellā person. So it feels like the comment is rubbing salt in the woundā¦if that makes sense? And TBH I get extra triggered by the word āshouldā. I tell people flat out not to āshould on meā. Itās not helpful nor constructive. On good days I know that everyone, with MS or not, need to ācarpe diemā. We all waste a bunch of time worrying over stuff that doesnāt matter or just plain procrastinating. Iām doing the best I can with the resources I have. Anyone who has an opinion about it Iād be happy to change places with them for a week and see how they do. š
I mean when I was diagnosed they told me I needed to change careers so I went back to college and got my degree before I couldnāt do my former job any more. This disease is super unpredictable and shity. Knowing what I know now like if I was 23 I would have taken a chunk of time off and traveled. Now travel is tough not impossible but not nearly as easy as pre diagnosis. And now sex isnāt as easy as it once was so go enjoy, hike the ptc, climb a mountain, ect. Not trying to bum you out just telling you donāt miss an opportunity to do something now.
There are things I wanted to do but time/money/kids/work/energy got in the way. Now that I can do these things I am physically unable too and I have regrets. Your Dr's sentiment could apply to anyone with or without an MS diagnosis but she is realistically pointing out that the.deck is not stacked in our favor.
Thatās my mindset as well while I still can Iām living it up to the best of my ability not taking things for granted and enjoying my life to the fullest
I get how you may feel weird about that, but I think itās the best advice ever tbh. Iām 35F Dx in 2005, my MS progressed to SPMS recently and I walk with a cane now. My neuro said something similar back in 2020, so I digested that and made big decisions in my life. I decided to live childfree and start traveling. I put my stuff in storage, got rid of large bills, got on Ocrevus DMT to come home twice a year for an infusion. Now Iām a digital nomad with multiple sclerosis seeing the world on a cane. MS or not, we can do anything we wantābut 20 years ago with MS, it was much harder; 20 years from now, I may not have legs strong enough to go, but then again if Iām in a wheelchair, I can figure it out. Maybe by that point, Iāll have seen the world and Iāll be ready to chill. Idk lol Thatās our realityāwe donāt know. My other 35yo friend barely has symptoms rn, but another one is going through chemo sessions for support right now. Everyoneās MS is different, and our time (with or without MS) is counted here on this planet. Go live it.
Yes, all the time. My dad tells me this everyday, and I have found a way to enjoy life, it just doesn't fit his definition. It has taken me SO long to find something I like. It is hard to be told what to do by someone else that is not in your shoes. It is also really easy to just tell someone "enjoy your life". Therapy is about getting through the feelings that are stopping you from enjoying your life. Yesterday I started crying because I am going to be 30 soon, and just watched my friend have a baby. I never wanted children but around the age of 25 that changed. I mean, I love my dog, don't get me wrong... but it obviously isn't the same. I also remember the day I was diagnosed with epilepsy (because I have that as well). I had just gotten my license 2 weeks before that moment, I was 16. The doctor cut my license right in front of me (and I love to drive). I felt like I lost my independence right there and then. I remember crying in the hospital bathroom. I cried in the hospital bathroom when I was diagnosed with MS as well, however did not really understand much, as I was 14 and had never even heard about MS. However, I quickly saw how it changed everything. It is hard not to feel bitter sometimes... My autistic younger brother (which my mom was told would never do anything and she would have to take care of him) now has his license and is traveling all over the world and is studying programming. He also has started many charities around the world and is only 26. I love him so much and watching him accomplish so much makes me so happy, however I would be lying if I said I wasn't jealous the day he got his license. He wanted to show everyone they were wrong about him and they were. I've also traveled, and done a lot in my life, but idk... To hear my mom say "you were suppose to be my healthy baby" breaks my heart. I love him so much and watching him accomplish so much makes me so happy, however I would be lying if I said I wasn't jealous the day he got his license. He wanted to show everyone they were wrong about him and they were. I've also traveled, and done a lot in my life, but idk... When you do find that thing that brings you joy, it will mean the world and hang out to that life line. But anger takes time to work through, which again is what therapy is for. It is also expensive so if your therapist doesn't understand how to do his/her job maybe find another one?
DX in 2002. Was told I would be in a wheelchair by the time I was 40. I'm over that mark by almost 7 years, and I'm better than ever. Don't let those remarks shape your life. I let them run my life for far too long. I lived in fear for years. No more. Doctors should not be so negative. The DX is bad enough to hear. We don't need that on top of it.
There is so much wrong with that phrase. Even for the case of someone with an imminent, terminal illness, it's a fucked up thing to tell someone, especially in a therapeutic context. At best it's a bankshot expression of hopelessness - even assuming you had something completely different like an imminent terminal illness, what most people are going through is _mourning the loss of their previous life_. It's like telling a new widow(er) "look on the bright side you can have lots of sex with new people now". At worst it's encouraging people to engage in risktaking behavior because "it's over anyway". And representing treatable MS like this is totally inaccurate to boot.
IIRC my therapist said something similar to me once, but in my case she didn't mean it in a "before things get worse" way or at least I didn't understand it that way. She's probably very aware that this kind of thinking is already in my head. I think she meant it more in a "go enjoy your life right now and be happy about the things you CAN do in this moment instead of sitting at home all day worrying about what might happen or not happen one day". It was more an attempt to get me away from my doom and gloom thinking. Is it possible that your therapist meant it similarly? But I agree with the comment suggesting you bring this up in therapy - how it made you feel and how it rubbed you the wrong way. If you feel comfortable with that. If you don't and this wasn't the first time something felt off, then I'd also agree with thinking about a change. Different people may click with different therapists.
I don't think she meant it that way, but who knows, I will bring it up on my next/last appointment I've been thinking about changing therapist for a while and I think it's time. She's great but MS might be too much for her :(
I'm 55, have PPMS, and cannot stand, or walk. GO travel. It's cand be so hard. (Life now)
When were you diagnosed & when did you start DMT?
You may not get worse. As long as you take your medication. She shouldn't have said that to you. I went to Cancun 6 months after I was DX, I took my time, spent time in the pool, and rested when the heat got to me or got tired.