Really struggling with everything

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Snoopy
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Re: Really struggling with everything

Post by Snoopy »

Daisycat wrote:I am 36. I did the same thing you did. I told my boyfriend he could leave since he didn’t sign up for this life, and he deserves a better like than what I can offer him. I have answered many times about my symptoms. Right now I don’t have any obvious, but I don’t know if my horrible fatigue and back pain and random dizzy spells is ms or something else. There is no diet I will enjoy with this disease, everything I’ve read and been told has said to avoid all the foods I love. I don’t mind eating healthy, but I’d like to be able to enjoy a night out with my boyfriend without having to worry if the sodium in the food is going to harm me.
Daisycat, stop worrying about the sodium in your food or a special diet and go out and enjoy yourself ---- that is how you LIVE with MS. There are medications to treat many of the symptoms of MS. Stop worrying about what might happen, live your life and if and when problems of MS happen then you can deal with it at that time.

Living day in and day out with "what ifs" will make for a miserable life. Although you got angry when someone said to "suck it up" that's not far from the truth. None of us wanted this disease and this disease can certainly suck big goose eggs but MS is a disease that can be LIVED with. Regardless of good or bad health, life rarely turns out as we wanted or expected. Have you ever seen the commercial, I think it's a car commercial? In the commercial the person starts out in one direction, the direction changes, and you hear "recalculating." this is repeated many times as the person's direction changes. Think about it....That's life, real life. If you look back through your life how many times did your life change directions from were you thought you were going? MS is just one of those direction changes.
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Scott1
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Re: Really struggling with everything

Post by Scott1 »

Hi,

I think all of us would be wondering where this sodium idea came from. I'm unfamiliar with the thinking behind it.

Being symptom free is a great place to start. There are elements of diet and exercise that you can follow that aren't in any way going to destroy the life you value. They will probably enhance it.

The fatigue is most likely MS related and so might be the dizzy spells. The dizziness might also be a blood pressure issue.

I wrote some ideas on fatigue here - http://www.mstranslate.com.au/ms-many-s ... e-fatigue/ . I found that sorted out my fatigue.

Back pain is all about fitness. It is not about MS but knowing you have MS gives you a good reason to fix it. If you have pain due to MS then you will quickly know the difference.

If you exercise, try and make it eccentric movement. I did a video about this here - .

You really can enjoy a life with your boyfriend. Nothing has to stop. The things I thought were enjoyable in my 20s now fall into two groups; stuff that I now find boring because I've been there, done that and the things I still do because it was fun.

If you smoke, drink till you're wasted, stuff your face with crappy food and sleep irregularly then don't worry. Something else will get you before MS.

Looking after your own health can become a positive experience. You can make it intuitive or a lifelong pursuit of knowledge.

There are heaps of ideas on this site. Look for the things that sound like your problems and see how others tackle them. Ask questions on these pages.

Right now you're dealing with a diagnosis. How you accept that depends on how you were told, how others react and how you plan to manage whatever symptoms you have right now.

The reality is most of the people you know really don't think that much about your MS because they can walk away from it anytime they like. A diagnosis is a chance to look at yourself and see who you are and who you want to be.

Regards,
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jimmylegs
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Re: Really struggling with everything

Post by jimmylegs »

DC re fatigue what is your serum ferritin level? re back pain, what are your serum 25(OH)vitd3 and serum magnesium levels? you can work on things to good effect. zyklon's thread linked above is a great read (if i do say so myself ;) ).
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Daisycat
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Re: Really struggling with everything

Post by Daisycat »

I can’t stop worrying about what I eat I
Because diet Can Impact If flare ups happen. I’d rather not have to kill myself so anything , no matter how small, I can do to prevent a flare I’ll do. The sodium thing was from everything I read about diets for ms. Basic summary is you never eat anything with taste again. I don’t mind working out. I enjoy excersise. I just hate that I’ll never be able to enjoy a “cheat day” on my diet or go out to celebrate my birthday or enjoy holiday dinners. Thankfully I already asked to work every day around the holidays so I only have to get out of stuff on the days we are closed. Ms is a life ruining curse and I wish I knew what I did to have everything taken from me.
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jimmylegs
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Re: Really struggling with everything

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oh hell it is just not that bad. trust. it feels overwhelming now but you'll get over the shock. i completely remember that feeling of urgency but it's honestly not down to the small moves minute to minute. you're not rolling a fighter jet here, you're starting a 180 on an aircraft carrier. i remember arriving at the perspective: ok i figure it took me 15 years to dig this hole, i can expect it to take another 15 to dig myself out. the good news, you could have a much smaller u turn to work on. with some of the changes i implemented, major changes happened in days. yes it took ages for them to *stick*, but when you get such clear messages that your actions are taking some kind of effect, it's really encouraging. you can write your own story and it does not have to end the way you think it's going to right now. no way.
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Daisycat
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Re: Really struggling with everything

Post by Daisycat »

Ms is pretty bad. I get no enjoyment out of anything in life anymore. I feel as if I’m just waiting till I become a cripple and I have to end my life. I find myself resenting normal people to who think their small problems actually are bad. There’s a good chance I’ll be a disabled cripple who has to quit my job in the next decade so I really don’t care if someone’s boyfriend didn’t want to go out on night.
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jimmylegs
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Re: Really struggling with everything

Post by jimmylegs »

lol yea fwp seriously. you'll come out of the funk you're in though. it's just a pain while you wait.

so you've been working on diet. while you're waiting to see if you can get a referral to a good dietitian, to get ready you can start on a diet diary.
this should include all food, fluids, meds and supplements taken through the day, including estimated (or exact if available) serving sizes for things consumed.

if you have a list like that ready to go when you show up in a dietitian's office, can only help.
even more impressive, if you can make something similar to characterize what your diet was like prior to dx. write up your approximation of three typical pre dx days. wlll all be good info.
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Snoopy
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Re: Really struggling with everything

Post by Snoopy »

Daisycat wrote:I can’t stop worrying about what I eat I
Because diet Can Impact If flare ups happen. I’d rather not have to kill myself so anything , no matter how small, I can do to prevent a flare I’ll do. The sodium thing was from everything I read about diets for ms. Basic summary is you never eat anything with taste again. I don’t mind working out. I enjoy excersise. I just hate that I’ll never be able to enjoy a “cheat day” on my diet or go out to celebrate my birthday or enjoy holiday dinners. Thankfully I already asked to work every day around the holidays so I only have to get out of stuff on the days we are closed. Ms is a life ruining curse and I wish I knew what I did to have everything taken from me.
Do you understand that no matter what you eat or don't eat, you can still have an exacerbation (relapse, attack, flare-up)? There are people diagnosed with MS who have been Vegans and Vegetarians all their lives.

I would strongly suggest you seek the help of a Psychiatrist for the treatment of depression and a Psychotherapist to help you work through your diagnosis.
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Scott1
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Re: Really struggling with everything

Post by Scott1 »

Hi,

What did your doctor tell you to do?

Regards,
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jimmylegs
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Re: Really struggling with everything

Post by jimmylegs »

^^ yep i had to 180 my prior vegan dumbassery fast, or who knows what kind of mess i would be in by now. so many different deficiencies to correct. i remember saying ok if it's them or me, i'm sorry but some cows are gonna die. done my part for 15 yrs i'm taggin out.
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Daisycat
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Re: Really struggling with everything

Post by Daisycat »

And do you understand that eating cardboard tasting food reduces the chance of a relapse... even if it’s only by 1% I’ll take it. I will kill my self before I live as a cripple so I will do everything to avoid that. And seeing a therapist won’t help me. The only thing that will help is if they find a cure. I don’t see why you refuse to believe diet plays a part (no matter how small) in flare ups
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jimmylegs
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Re: Really struggling with everything

Post by jimmylegs »

can't wait to see this diet diary. curious to see what sorts of cardboardy crap you're inflicting on yourself. kinda glad i never found my way to that particular dietary regimen!
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Daisycat
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Re: Really struggling with everything

Post by Daisycat »

I wish I could still eat decent food, but I refuse to do anything that will up my chance for a flare because at least at this point I’d rather not kill myself
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jimmylegs
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Re: Really struggling with everything

Post by jimmylegs »

diet diary. if you're inadvertently missing some detail that could increase your chance of a flare up, sounds like you're the kind of person who'd prefer to know.

some reading for ya: http://www.thisisms.com/forum/introduct ... ml#p247331
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Snoopy
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Re: Really struggling with everything

Post by Snoopy »

Daisycat wrote:And do you understand that eating cardboard tasting food reduces the chance of a relapse... even if it’s only by 1% I’ll take it. I will kill my self before I live as a cripple so I will do everything to avoid that. And seeing a therapist won’t help me. The only thing that will help is if they find a cure. I don’t see why you refuse to believe diet plays a part (no matter how small) in flare ups


The whole "I'm going to kill myself" is why you need to see a Therapist and a Psychiatrist. You won't know if it will help until you try.
I have LIVED with this disease for the majority of my life, symptoms since childhood, diagnosed at the age of 23. If diet reduced the chance of a relapse then it forgot to tell my MS :roll:
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