PatHC bought up something recently to me that made me think it's time to discuss lifestyle changing.
How do we do it? How do we go against our past-normal? Many of us have come to who we are and our ways for quite a long time now. Years and years!
Attacks stop us dead in our tracks, so we have no choice to adjust. Some have major mobility issues, and have no choice to adjust. But, doesn't mean we like it. Doesn't mean we don't fight it all the way whether physically or mentally. And, what about those glimmers of semi-normalcy. Those times when we get a wild hair and attempt to forge full steam ahead! Then experience dreaded aftermath of overduing. For many of us - ignoring our MS simply, doesn't work - we are too symptomatic, or limited.
So, folks. How have you adjusted you lifestyle? What coping mechanisms have you developed.
I'll start but be warned, I'm still on a learning curve and have not mastered anything. I neglect things that I never neglected in the past. For instance I'll leave a sink full of dishes, and loads of laundry (among other things) to put my feet up and relax at night. I'll order take out and suffer the financial consequences elsewhere.
At work, I go slower, I write everything down - I check my work over, and over, and over again. I stay longer if need be to do what I have to do off the clock, etc.
I expect a lot of myself, but try to not get as frustrated as I use to get when I can't pull something off....that's a hard one, but I keep working on it.
OK, so my dx is currently some nonspecific demyelinating disease of the spine, but anyway...
I teach, and I tell my students that if we have any conversation about a special adjustment or plan for an assignment or test that they MUST follow up that conversation with an email reminder, or I WILL NOT remember it.
I used to work until late at night. Now, I know that I just have to stop by about 8 pm because I don't have the function I need to do my work well.
I'm slower with everything I do, especially walking. I used to be one of those fast-walking people who could outwalk anyone and would get impatient with slow walkers in my way. Well...now I'm one of the slowest walkers around. Ah, irony.
Yesterday, I went on my evening walk and took a cane. I figured out how to use it and found that doing so helped me keep my alignment better when I walked, which cut down on some of the painful aftermath of this exercise for me.
There are other things, but these are the ones that leap to mind.
Yes! I can totally relate. I do this at home with the kids. I make sure they put everything in front of my face more than once. And, to not assume I'll remember. I felt horrible to even ask them - but they really have gotten so good at it - sometimes when I do remember, I get offended that they keep telling me..ha/ha
A big me too w/the past walking. I learned it at an early age. My Mom never drove and we walked, or shall I say, she drug me everwhere (I tease her all the time). She would say I tripped all the time -- I said - no, you drug me all through town!
This is a very big issue for me. I am constantly looking for things to make my life easier,
I can no longer keep up, Life is too fast for me.I have looked for books, but can not find any out there. I cannot keep up at all with my house. I just close by eyes/ This is causing isolation, which I know is not healthy. My husband can only do so much, and also he is a man and doesn't see the things I do.
my life has changed so much I don;t remember what normal is
In the grand scheme of life i tell myself it is a big nothing.
I don't have MS diagnosis right now, it is Myasthenia Gravis, and autoimmune liver disease, however I have so many of the symptoms my Dr is looking at it and Parkinsons.
Wow, how do we cope? The first thing that came to my mind is keeping both feet in today, because if we have one foot in yesterday and one in tomorrow we are peeing all over today.....LOL Besides knowing us we will fall...hehehe
So I guess a sense of humor, and pushing myself. It seems like I always have to push myself to try this new thing--like now the Dr wants me to walk on soft surfaces with ski poles for balance. Or pushing not to let my HUGE desire to isolate myself win, which it does sometimes, just because we feel so terrible. Then I think of myself as a pitbull, never let go.
And we have no one is sick days where my family just goes and does whatever but illness is not mentioned, limitations are brought up ect.
Sometimes I just cry..... but I think of my Mom who never gave up, so I have to "stand back up" and go on. Believe me it all sounds good but there are many days I don't do so good....
I am learning to compensate as much as possible. I use note pads, sticky pads, kitchen timers, have a place for everything. I use a day planner etc.
When I get out of the car I am always afraid I will lose my keys by maybe laying them down, So keys always go in the front pocket of my purse...always.
I try to have a plan. It is something that has always made me feel better. I ask for appts with specialists to rule out physical causes. I use whatever resources are available to try to keep myself as close to "normal?" as possible. I go to PT. I am starting speech therapy (also supposed to help with swallowing by strengthening throat muscles). I am also starting OT...hoping to learn more compensatory strategies and energy saving techniques.
I have Marriam-Webster bookmarked for quick reference. I seek as much info as possible, knowledge is power.
Maybe I spend to much time trying to compensate...who knows? But I do need a plan. That is why no dx drives me bonkers and that is why I have a counselor :o)
I am trying not to become the disease but some days I feel I am losing...
Current diagnosis "unspecified demyelinating disease of the CSF".
In the past I was in denial about symptoms. I had help from doctor's to be in denial due to they would say nothing is wrong with me or it's mental or it's that, etc. Then I would have great time periods too, so it was easier to be in denial and not make life style changes.
some years back the wall presented itself and i've slowly made life style changes. mainly due to physical and mental slowdowns forced me to stop many activities.
i'll probably attend some form of help group for this. without a clear diagnosis i just find it hard to go. also, it would be easier to tell friends about this too if i had a diagnosis.
i quit work, moved, and threw my hands up in the air because i really don't know what to do with this just yet. hitting that wall was killing me so to speak.
Recently, I was so happy i finally had a doctor to listen and at least get the so-so diagnosis of "unspecified demyelinating disease of the CSF". But now after the upside of that has faded, mental frustration is ringing in more than i would like.
I still go to they gym when i can but I can see I'll have to continually modify my workouts, I watch what I eat as I like eating clean. I go to places with friends when I can. I now know i have a reason for most of my symptoms although at times I question that due to years of this problem and denial. Isn't that weird? I sleep terrible, toss and turn. but since I'm not working sleeping late isn't an issue execpt it is really boring. I pray as I have much faith in God. The isolation from feeling not so good most of the time is a real ball-n-chain for me too. What a downer that is!! Some times i take a med to help with that and it does and I am thanful I have them. Other times I just stay home, and that gets really boring. No adrenaline rush staying at home!
Coping with something like this is a real challenge. I've tasted my share of hell before so I'll adjust to this too, somehow, someway, with much help from a few friends.
I found this list and it has really heldep with my thinking process about all this, seeing others who have endured and are enduring the medical frustration and the disease itself.
Well as it was me that got Shell thinking about this so I had better add in my bit too!
Until about 2 years ago I used my 'bulldozing' method and tried to plough through most things. My MS had taken a 'relatively Mild' course and except for the odd 2 weeks off work I had raised 4 kids, finished a university degree, worked my way up the career ladder and completed a doctorate. I am so driven that when my legs started hurting I blamed myself for being overweight, unfit and just plain old and got on the treadmill – only to fall off and take 30 minutes for the world to stop spinning – I was only on it 5 minutes!
Over the last 2 years I have got progressively slower in both thinking and walking. I started organising my week so that if I have a long day one day, I work from home the next (I am lucky my job allows that most of the time). I stopped travelling around Europe for the job and asked someone else to take on that. I do a lot of work via Skype and email and phone meetings too to avoid the driving.
I try to get thinks done in the morning as I am shattered by the afternoon.
I write everything down in a book that is all my work stuff and home stuff with countless TO DO notes and still need reminding as I forget to check the book.
Yesterday, I spoke to my sister and told her to get the kettle on as I would be at her place in 15 minutes and picked up my car keys walked out side and was convinced for 2 seconds that my car had been stolen off the drive and then realised that 30 minutes before I had told my son he could use it. - get the picture?
I carry a folding stick in my handbag and use it more often than I would like to. I find myself like shell ignoring the washing, etc. and just sitting staring into nothing as my mind is exhausted and I often just fall asleep in the chair.
I have started to avoid booking holidays and weekends away in advance and try to be more spontaneous about it - but then it just doesn't happen.
I am so glad my kids have not grown up maladjusted with a mum who had to be told several times, still forgot and then shouted at them when they reminded me, cries at everything they tell me, puts a timer on for dinner and then doesn't hear the timer and burns the meal!!!
Feeling poorly a lot is isolating as ufrustrated2 said and I struggle to work still about once a week and sit in meetings wondering how it feels to be normal as I seem to have forgotten
But the guilt is the worst, after 4 kids putting you first is very, very difficult and I am still not adjusted to this – I don’t know if I ever will.
I am interested though in this discussion is the guilt a female thing or is it an age thing or do we all feel that way? Maybe a poll shell?
I have to say WOW!! Great discussion.. For the past two days i have no aches and no pain, i can't believe it !! This don't happen very often. I am usually in pain, I too leave laundry for another day, dishes, cleaning etc... If it wasn't for my husband to get supper cooked, dishes cleared away, groceries picked up, there would be nothing done. It is so hard for me to depend on someone else even if it is my husband to do this but i am finally coming to grips with it. Because i was feeling awesome yesterday, my husband looked at me and said, 'just because you are feeling good, you are still not doing anything, now go and sit down and i will do what needs to be done' But i did make him play the WII with our daughter and i cleared away from supper and i felt so good in doing so. After that i sat for the rest of the night relaxing. THIS IS NOT ME AT ALL!!!!
My 4 1/2 year old is always saying, mommy did you forget this, or that or something else, i apoligize all the time but my memory is shot...I have to write things down, and I STILL FORGET!!! I still work fulltime and this keeps me going, i have only missed one day because i was in pain. I ahve to keep going and fighting for my family but sometimes i have to give in and relax and there is nothing wrong with it.. Once you get use to 'help' everything else falls into place!!
I have to keep white boards on the fridge with notes plus a calender.
I have to really pay attention while driving.
I have to know my limits and not push on like I used to.
I have to have more of a routine of taking meds, eating, sleeping at a certain time everyday otherwise I forget.
I have to live in the moment and not project into fear
I take extra care with nutrition, When I am out instead of fast food, I stop by the market for a salad and 100% Juice or water. Someone said to me recently you would not put sugar in your gas tank. I used to live on junk food.
Ok I can't type much as my eyes are starting to blur from reading about everyone. I am learning and dx'd Feb 10th '09. Over the past month my cognition has gone...wait what was I talking about?
I am a completely disorganized person and paying the right bills at the right time is getting to be a hassle. Laundry and dishes pile up and I am working too much.
I am learning quickly over this past 3 weeks that I am about to completely reorganize my life. Throw out all of the clutter, get a pocket recorder for reminders and lots and lots of sticky notes.
I catch myself completely "not hearing" my 4 year old sometimes as I am lost in space. He is funny..."Mommy are you hearing me?" "Mommy I will carry that it is too heavy for you" I hope he continues to be so sweet as his mommy forgets to pack his lunch or make him dinner? UGH!
Ok I better stop trying to read this screen
I've always been a list-oriented person, and that part hasn't changed much. I do or I don't get things done, but I don't forget about them.
The fatigue part is right on target for me. I am learning, slowly, that some things I just can't do anymore, or if I can do them, it's gonna be pretty minimal. That's why I posted about lightweight vacuum cleaners a few weeks back. (Am working on that, but that's another post.) It really bothers me to have to recognize that I'm getting limited in many ways. if I overdo, wham, I get punished.
Last summer at a family reunion I took a walk on the boardwalk with my sister and two grown nieces. I had to ask them to slow down so much that finally I just sat on a bench and let them go. And I've always been a fast and enthusiastic walker. No mo', I guess. My legs hurt for days after that. The exhaustion I felt after 2 wonderful trips lasted for weeks. I was more or less bedridden. So now I know I can't do that again, at least not that way. And on and on (anon).
I still exercise a lot but I've had to cut way back. Reality intrudes all too often, and it just ain't worth it.
I wish I could work out like I used to - running a couple of times a week, on the elliptical trainer the rest of the time. Now I'm lucky to have enough energy to go to work.
What's hardest is I've had to cut way back on my parties and festivals. I used to do outdoor festivals, but now I can't even set up my booth without being exhausted. Sometimes I can't even drive myself!
I'm 31yrs of age, I've been dxd for over a year and I've had to make some major changes in my life. I too have to write things down all the time, so post-its, emails, alarms...various forms of reminders to keep me on track daily. I used to do a lot physically, the gym, kayaking, up-hill running, netball (a sport in my country, similar to basketball)...I was very active and found that I had to slow down, not that I wanted too but because my body didn't allow me. So instead of running up-hill I'd walk and instead of 45mins kayaking I'd do half hour... I'm still learning to slow down when it comes to my house chores, because I'd find myself doing everything all at once and then crashing later in evening/night. I am learning and adjusting everyday but most of all I try to keep and open mind and positive spirit towards it all, because at the end of the day there are others out there that are in a much more difficult situation than I am.
Receiving a dx of MS earlier this year may just be the greatest thing ever to have happened to me. Sorry, that probably sounds way over the top. I can hardly believe I am saying this too as just a couple of short weeks ago I needed some of you good people privately to help me cope with a major despair during yet another relapse. I started really questioning what value I had left to add to the world. The rollercoaster is alive and well for me.
However, now after 3 good days of wellness my perspective is positive again. I can see that prior to MS I was far too work focussed, perfectionistic, would climb over the guy next to me at his expense to get ahead. Now I feel as if I am on this unstoppable path towards a transformation of epic proportions that will rebuild my health and my life.
This is very early days but I have made some major changes which I may not see the benefits of until around the one to five year mark. I have changed my diet in the last 6 weeks from being a huge meat & dairy eater to vegan plus seafood, started exercising regularly even when it is difficult walking, meditating, lying in the sun in my undies for 20 minutes on sunny days (this is tricky at work, I may be arrested any day now), and taking regular counselling to help me adjust to the new me.
I am trying to learn from the wisdom of others and sit back and ask what is this MS trying to teach me? I know none of us asked for it or deserve to get it but is there anything I can do to improve my situation. Already I have experienced profound learning about the driven person I was before, the lack of care and compassion I used to have for people with disability. MS has opened my eyes to things I couldn't possibly have understood beforehand except through experience. Yes, you may well say did I really need to get MS to learn some of those fundamental things? Well, unfortunately being a fairly stubborn, hard to accept feedback kind of guy yes for me. But, hey that's me.
I am determined to keep going even though my symptoms chart tells me that sometime over the next week maybe I am going to start limping and feeling like do do again. The good news is that I have talked to nearly a dozen people now who have experienced wellness through making changes, not just a remittance of symptoms but symptoms which have gone away and not returned.
I apologise to those reading this who may be in poor condition from MS and feeling like crap, like when you have no energy, can't walk, can't think it does seem impossible to change.
For me I am burning a candle of hope and praying that I can turn my life around by actively changing my lifestyle, rather than just relying on the old positive mental attitude to get me through.
Due to the form of MS given me (Progressive Relapsing), I know when I have a relapse that what MS wants to take, she takes. I don't get to bargain with her. She will always win. It is unless to fight her. I am still in the process of learning not to grasp or wish her to leave.
I have learned to ask for help. I have learned to receive it without being ashamed. I have learned it doesn't take makeup, nails and toes done, jewelry, or hair styling to be a real woman. Fashionable for me may be a pair of cute socks...of which I cannot even put on my right leg without help.
There is no exercise, diet, miracle drug that will ever take the pain away. Pain is part of life...a rather ugly part. There is no sleeping pill that will allow me to sleep more than three to four hours without waking in that pain. It is what it is.
I grieve for what has been lost. I know another relapse or so, I will be in a nursing home. I do my best to enjoy and savor the time given me before leaving my dh of 41 years. I feel the sadness of thinking to not waking with him in the same room as me. We are alseparatederated by a hospital bed.
I try to stay in the moment catching the joy of simple things knowing I am not far from losing them.
We don't know why such suffering is given us. We know others suffer even more but our individual suffering seems to overwhelm us at times....we might as well allow those feels to come, sit with them and allow them to pass.
Those are coping techniques. It is the best I can do.
Wow! I can truly relate to almost everything in this conversation! I am 55 years old &living with RRMS. It really began almost 30 years ago when I was 27. It began on a Wednesday with a numb and tingling hand. Three days later I was in a hospital completely paralyzed. I was unable to move any of my limbs. I had a one year old baby boy at home and was finishing up my one year maternity leave from teaching. I was dx with ADEM. I spent a month in the hospital and was then transferred to a rehab facility. I received lots of therapy- physical, occupational, speech etc. Three months later I was able to go home for out patient PT. I went on to have another beautiful baby boy :) I went back to get my asters degree & returned to teach for 20 years. Luckily, I have never had any cognitive problems. I have severe left sided weakness. About 6 weeks ago I had my first major relapse and have developed drop foot syndrome, making it very difficult to walk. I retired last year so luckily I don't have to work. I attend an hour of PT a week and do a home exercise program daily. I am trying to get used to being disabled, but I am depressed about how little I can do independently now. It's very frustrating. Thanks for letting me tell my story.
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