Optimism and Pessimism - Disease impact

[Mamabug]

You know my thoughts, that a good therapist can make a huge difference. I am not talking about a phone call to a benefit wellness line but real therapy. It can be difficult, but worth it in the end.

I hope you figure out a way to deal and live your life again.

Ditto.

What you're doing, Daisycat, isn't effective. It's time to try something new.

[Daisycat]

Temagami

I honestly do not see how someone can have this disease and not be depressed. I always have to hold myself back form laughing when the nurse asks me… I wonder if she is actually serious about that question. Of course I am depressed my life is over.

As for my car… well if it was the car I had 4 years ago I would turn up the radio and hope it went away. BUT if it was my new car I would take it to a mechanic. The first car I mentioned was a 97 and had so many issues that if it was making a screeching noise it would just be something to drown out the rattling noise… But I do see your point, but I just do not see how I will ever be happy knowing how my life will eventually end up. It’s easier for me to ignore it as much as I can and do what I can to enjoy what is left of my life. – as much as I can.

Jules
I am very jealous of you (mostly for going to Vegas… but still). I would have ot be in the right frame of mind for therapy because unless insurance covers it I need my money to pay off some things. I feel therpays is a waste of time and since its not going ot change what is making me depressed and what is making me depressed is never going away and I am not going to accept it, I just feel like I am at a dead end.

I am doing everything I can to stay busy as much as possible and take my mind off of it. Between my actual job , pet sitting , dog walking , and delivering for all the delivery places I pretty much only have free time now to work out and play my nightly game of HQ. And yes I can’t forget about my sweet little doggie. She always makes me smile.

There are lot of concerts I am thinking about going to this summer but I am still trying to decide because if I go to all of them I am going to be asking off for too much time since we were just “forced” to use some of our PTO to make up for days we were closed because one of the Drs was… well no one really knows. The other was on a planned vacation and the third couldn’t be expected to work 7 days a week.



Pennstater and Mama

I know you are not meaning anything negative by what you said and I really do appreciate your advice. I just know I am not going to ever accept this. In my mind I died on September 21 2017 and now I am just waiting around for it to catch up. I think what depresses me the most is what my life would be like if I didn’t have this disease. My life would be so different and the fact that I’ll never be that person again makes me really sad. It is what it is though and since I can’t accept it I am going to stay busy and keep my mind off of it.




.

[Mamabug]

Pennstater and Mama

I know you are not meaning anything negative by what you said and I really do appreciate your advice. I just know I am not going to ever accept this. In my mind I died on September 21 2017 and now I am just waiting around for it to catch up. I think what depresses me the most is what my life would be like if I didn’t have this disease. My life would be so different and the fact that I’ll never be that person again makes me really sad. It is what it is though and since I can’t accept it I am going to stay busy and keep my mind off of it.

Happiness is a choice. If you are unhappy, it is within your power to change your perspective and choose to be happy.

You strike me as being too intelligent to choose denial and unhappiness. Yet those are the choices that you continue to make. It baffles me how you can choose to believe that denial and unhappiness are in your best interests.

Happiness, like unhappiness, is a proactive choice. - Stephen Covey

[Temagami]

D-cat,
I´m not all sunshine and roses, more like a practical optimist. I was reading about MS and came across the statement that falls and pneumonia are the most likely to take out an MSer as disability increases. All the more reason to do yoga for strength, balance and strong respiratory muscles.

Maybe happiness is not the goal but satisfaction and/or contentment. The psychologist Martin Seligman did research on happiness and that turns out not to be what people really respond to and strive for. Those with the highest QOL index sought and met challenges. In your and our case, the challenge found you/us.

If you are the kind of person who ever kept a journal, find it and read it. You´ll likely find that the person and that person´s goals have changed even though that person was you.

[Jules A]

You strike me as being too intelligent to choose denial and unhappiness. Yet those are the choices that you continue to make. It baffles me how you can choose to believe that denial and unhappiness are in your best interests.

This 100%!

And I'd also challenge the flawed perception that your life before MS diagnosis was so idyllic and your future guaranteed to be long and healthy. Sadly no one has that promised to them. Personally speaking my life before MS was about the same as my life now. Sometimes great, sometimes horrible and mostly somewhere in between.

When you get a therapist make sure it is one who you find interesting, can like and respect because they will probably need to piss you off about 50% of the time. I'm picturing someone fairly young with tattoos and piercings. You are too headstrong to be with one of the sweet, patting you on the back and saying poor baby type therapists. I suspect you will require someone with the stones to take the risk of alienating you by being truthful and challenging your automatic negative thoughts. That is where you will get the real growth. The right combo of meds can take the edge off but lifelong change comes from doing the work in therapy, imo.

You know I'm no Pollyana but I made the decision to fight and live my life until it is futile. And as I've said hundreds of times before I've been blessed at this point with over a decade of hardcore living. Stay with us Daisycat and I bet some of our strategies will rub off.

[palmtree]

This is a philosophical question that I have always found to be too simplistic to spend energy thinking about or lecturing others about.

Life is life. Existence is. Every day is different. Some are luckier than others. Self pity is also a waste of time.

[Myoak]

This is a philosophical question that I have always found to be too simplistic to spend energy thinking about or lecturing others about.

Life is life. Existence is. Every day is different. Some are luckier than others. Self pity is also a waste of time.

Thank you, Palmtree! The wisdom you displayed in that quote is almost biblical... succinct and direct. Sweet!

Daisycat, you said, "I think what depresses me the most is what my life would be like if I didn’t have this disease. My life would be so different and the fact that I’ll never be that person again makes me really sad. It is what it is though and since I can’t accept it I am going to stay busy and keep my mind off of it."

I believe I understand what you are saying and I agree with you. This is your present reality. But I would ask you this... Are you going to allow this disease, or any other condition to define your life or are you going to define your life? Life is a terminal condition for everyone; if this doesn't get me, that will, we can be certain of it.

You are an amazing person, Daisycat. I see past your words already and I believe you are not allowing this condition to define who you are or what you become as a person. Yes, it will be different than what you had planned and hoped for but why cannot it be better than that? All things are possible. All things!

We value MS like an oyster values a grain of sand. But similarly, we can build something beautiful around it that otherwise would never have been formed.

I don't have MS. Do you know why I come here? Because I see pearls, everywhere. Like you, Daisycat. Yes, you. Here is where I find the people I value most in life... people who are thoughtful, kind, caring, compassionate, funny, delightful, loving and helpful. Especially helpful. Helpful in ways to build a pearl around the common problem everyone here is dealing with, both pwMS and caregivers.

Actually, in this transformation thrust upon you, you have become quite striking already, Daisycat. Everyone here sees that. However pretty you were before you are prettier today as a person, a loving human being. I am nothing but optimistic for you. You are amazing!

It is perfectly okay and completely natural to curse this disease. Then we deal with it. And how we deal with it shapes who we are as a person. If someone loves you less because of MS they are the loser, not you. If someone loves you more, stick by that person because he/she has the qualities which will sustain you and put living into life.

[Jennaly16]

In life i always was in the middle. I saw both sides, i could see things going either way and i usually always thought the worst was going to happen. "your going to the hospital, your dying! Your mad at me, you'll leave me".

Ironically when i was diagnosed someone said "we could always have it worse". It made me really think about it. I could have a terminal illness that would take me out of this life early. I could lose a limb that would make me have to change the way i live my life everyday. I could lose a loved one. I could have lost my job which i enjoy. I could be homeless and having to live outside on a 0 degree day. I could have an allergy to peanuts which would prevent me from enjoying another yummy peanut butter toast in the morning.

In all situations i would chose having MS. Do i want this? NO! If i could prevent it i would have and if i could wake up tomorrow without it i'd be on cloud nine. But if i am going to have something terrible in my life happen, MS isn't the worst that could have been thrown at me.

So each day i'm thankful i'm waking up. It may take longer some days but i get up.

Some days i give myself a pity party. Why me? I'm over needles, i'm over MRI's, i'm over dr appts. But on these days i buy myself Starbucks, grab myself Moe's and repeat "it could be worse"!
I have infusion Friday and i'm already looking forward to what Ice Coffee i'm treating myself to as my reward for having MS

[Daisycat]

Mamabug




I am unhappy because I have this terrible disease that no matter what I do or how hard I try is going to eventually destroy my life. It might be 50 years from now or it could be 5 seconds. That fear is never ending. To be 100% honest I do not think I deserve to be happy.




Temagami



I have read so much about this stupid disease- everything from bee stings is the cure, do a 41 day water fast and you will be cured , to stuff that is actually believable that it makes my head hurt sometimes. Most of what I read says how most of us will eventually end up disabled in SOME way. I am not and never will be OK with that. I had a journal from a long time ago , but I threw it away when I was moving so I have no idea what was even in there. It was from high school so I imagine a lot of boy drama and catty girl drama. Oh how I wish that was my only problems…



I feel like I have pretty good strength (have to since I carry 60 plus pound dogs around all day) My balance for the most part is decent. At least with the little bit of Yoga I do I haven’t fallen so there is that at least.
I think my goal is going to be denial and staying busy 100% of the time. I have a pretty good system in place. I have zero free time anymore and I am fine with that. I am going crazy right now because my phone died so I have to wait for it to charge so I can go finish my workout for the day. ( I like my Netflix or Pandora while I am working out)

Jules



My life before this disease wasn’t perfect, but I had a future and I had things to look forward too. I know there was no guarantee I would be healthy, but this is probably one of at least the top 10 worst things anyone could be told they have. ( putting ALL cancers as one thing). An incurable disease that is likely going to leave you blind and/or unable to walk isn’t exactly a perfect future.



My life before this was so much better. I could eat without feeling guilty , take a day off from the gym without worrying about how it was going to hurt me , not stress about the littlest mistake at work , enjoy going out with friends - basically I could have a life. Now I have a strict daily schedule that I will follow now until well until I am ready to give up.



I am doing everything I can to avoid even thinking about this stupid disease. I am getting decent at it… except when I can’t eat, go out with friends, or do anything enjoyable. My two hours of Netflix are my relaxation time every night and I am not changing up my schedule. Staying busy as much as possible has taken my mind of this and has allowed me to feel 1% normal again.

As for it being better… there is no way a life where I can’t eat anything I enjoy , have to take a bunch of different supplements , stab myself three times a week , etc etc etc be better than the future I was going to have. I could describe the future I see for myself if you like. It is very dark and I do not think I have ever actually said what I think will happen if I do not make it somewhere in time.

I wouldn’t know if anyone would love me less because of this because no one will ever know. I will quit my job if it gets out… but I would expect them to find a way to fire me because no one is going to trust someone with this disease to care for living creatures. I am terrified everyday that something could happen because then corporate investigates the people involved and I already know If this came out that is what they would blame and I would have no job.


Jennaly16



I always expect the worst with everything. I do hope for the best but I always expect the worst. This way at least I am not disappointment and I am sometimes surprised about how things work out.
If someone ever told me “we could always have it worse” well I am not going to ever say how I would respond to that person. ESPECIALLY if that person was healthy and normal let’s just say they would never talk to me again. But if someone was so insensitive to actually say that to someone who still cries almost every night then they aren’t the kind of person I would want in my life anyway. This disease is going to take me out of life early and it could cause me to lose the use of my limbs, senses , basically anything.

I am not worried about losing food. I don’t enjoy eating anymore since I follow the strictest diet you can imagine , but I want at least 20 years before Switzerland so I am going to live of nasty food and have people think I starve myself since I have lost 30-35 pounds since I started this diet. That is fine though I would MUCH rather them think I have an eating disorder instead of the other problem.
I can agree with you about being over MRIs. I am not doing anymore unless it is required for my medicine. I do not want to know if this stuff is progressing so I am going to tell my Dr very kindly I pass on the yearly MRI because all it will do is destroy my life if there is progression. Only unhealthy thing I still have to look forward to is my Starbucks… but I have made it as healthy as possible. No whip cream , no toppings , almond milk , less pumps of my flavor… so even that isn’t as enjoyable as it once was.


Well now my phone is charged enough for me to go finish my work out so at least my mind will get of this curse.

[Mamabug]

Mamabug

I am unhappy because I have this terrible disease that no matter what I do or how hard I try is going to eventually destroy my life. It might be 50 years from now or it could be 5 seconds. That fear is never ending. To be 100% honest I do not think I deserve to be happy.

You have MS because life happens. You are not unhappy because you have MS. You are unhappy because of how you choose to respond to your MS.

I'll be a broken record:

Happiness is a choice. If you are unhappy, it is within your power to change your perspective and choose to be happy.
... It baffles me how you can choose to believe that denial and unhappiness are in your best interests.

[Jules A]

I agree this on the short list of awful things than can happen to people but the reality is there are so many awful things that can happen in this lifetime that I guess if its not one thing it likely to be is another. I continue to remain thankful that I don't have Huntingtons or ALS and would 100% take MS over those horrors any day. You still have so many fun and interesting things on your bucket list so I'm going to disagree that you have nothing to look forward to.

As for the diet please share the data that shows any diet has been proven to stall or prevent MS progression and I will join you on it. I also try to eat healthy, don't smoke or drink and exercise but I reserve the option to splurge at a restaurant on occasion. I think you are forcing yourself to be miserable, probably because as you said your self esteem is so low right now that you feel you deserve to be punished, which is unfortunate. No one deserves this, no one deserves the many terrible things that can happen over the course of a lifetime but it just is. Did I ask you about the book When Bad Things Happen to Good People? I found it to be an interesting read. Doesn't answer any of the big questions but certainly enlightens that bad things just happen sometimes.

Like you, I have not disclosed MS at work because I fear scrutiny and discrimination but I also know many working RNs who have MS. No one ever accused them of being unsafe or at any higher risk of making an error so I think if people find out it is unlikely to result in either of us automatically being considered incompetent.

[Daisycat]

I’ll never be happy because of this disease. I still can’t say the word. I call it my well what I used to call it here when talking to the few people who know.

I don’t see how anyone can be positive and upbeat with this. Ignoring it is the only way I’ve actually felt happy the past few weeks. (Another reason I’ve not been on here as much)

but something happens and I get reminded of it ( this time it was a medication issue which thankfully was fixed. But it brought me back to my depressing reality


since it worked out I’ll be better just today was a bad day since I couldn’t go to the gym.

jules

my self esteem is non existent. I think I deserve nothing and it doesn’t help that my religious conservative family thinks people like me don’t deserve insurance.

They didnt say that exactly but they said they support life time limits since no one will ever reach it. Which is not true at all. I’d reach it in 10-12 years. I guess people like that figure I’ll be dead before it matters.

It disgust me I am related to people like that.

But I don’t think I deserve anything in life. (My job, friends, bf, animals , car) I have a longer reason for each but typing on my phone is hard.


For my diet it gives me the feeling I can control something. I love how tiny I am now. It’s all I got which is sad.

And I could never tell everyone at work. I did tell the one dr I worked with everyday since I trusted him and needed someone to tell.

I didn’t tell my pm for at least 6 months because I was and still and humiliated and ashamed of this. I’ll never tell anyone else

there are a few drs I’m close to there but it’s not the same as it was with the other one.

---

[Jennaly16]

To clarify. The person who said “ we could have it worse” is someone who has had MS for 15 years. You would never know it. I see her all the time and had I not been told she had it, nothing would give it away. She goes about her life working, being a mother, being with friends and living life to the fullest. She is my inspiration. The day I was diagnosed she brought me flowers and had dinner with me. We went over her worst days and worst experiences and we went over her best days.

It’s mind set to me. When I was 16 I didn’t see myself at 21. At 21 I never pictured by 30th. And I didn’t have MS then (or at least didn’t know). When making big decisions am I considering MS, yes. Will my next house be a ranch house, yes. But will I buy another house, yes. Still planning for a future because I’ll have one regardless.

You can either give yourself a pity party and be the only guest or put on some dancing shoes and go to a party and be surrounded by many. Your choice!

[sarabeach123]

Daisy - life is unpredictable, just like MS. But there are proven studies that stress has a huge impact on MS. If you choose to live life by ignoring your feelings and punishing yourself by eating food you don't like, your chances of having a relapse are higher.

There are so many books out there you could read about the relationship between physical health and mental health.

It isn't a guarantee, but if you don't want your MS to get worse or to have another flare-up, one way to HELP is to reduce your stress levels. You are really sabotaging yourself.

[Myoak]

Daisycat,

You are definitely on the right track with keeping your diet in check. There are benefits to various diets used by pwMS; those can and should be investigated for individual fit. Gold is found by those who search for it… Congrats on the investigation, the searching you do to enhance your life!

I have two things to share… First, this study was presented about 8 weeks ago at ECTRIMS…

Diet quality is associated with mobility and cognitive function in people with multiple sclerosis

Objective: To assess the association between diet quality and disability and neurological function in people with MS.

Methods: We conducted an observational study of people with MS who completed MS Performance Test-based (MSPT) assessment of neurologic function and a 153-item food frequency questionnaire.

Results: We analyzed data from 277 participants… Participants in the highest quartile of dietary quality had significantly higher processing speeds, faster 25-foot walking speeds and marginally faster manual dexterity speeds relative to individuals in the lowest quartile…

Conclusions: High dietary quality was associated with lesser disease severity using measures of disability, mobility and cognitive function. Longitudinal studies should evaluate if high quality diets predict slower rates of disability accrual.

Second thing to share…

“The idea that people can treat MS by changing their diet has been around for more than half a century. One of the pioneers was neurologist Roy Swank, who, in the 1940s, studied the disease at the University of Montreal in Canada. He observed that MS was prevalent in the meat-eating countries of Europe and the United States, but was nearly absent in most of Asia, Africa and South America, where meat consumption was much lower. He found the perfect test case in Norway, where people living inland, who ate lots of meat and potatoes, had higher rates of MS than coastal residents, whose diet was based on fish. He sent a questionnaire to neurologists and hospital administrators in both regions and discovered that inland Norwegians were eight times more likely to develop MS than those on the coast.”

“In 1949, Swank put Norwegians with MS on a diet that involved eating less meat and milk products, but more fish. Other approved foods included a small amount of lean meat, eggs, nuts, cereal and skimmed milk. Swank studied 144 of the participants for several decades. In a 1990 analysis1, he reported that when patients adhered to a diet of less than 20 grams of saturated fat per day, 95% of them were able to maintain normal activities for the next 30 years. When they deviated from the diet, even after years of compliance, the disease invariably got worse.”

https://www.nature.com/articles/540S13a#ref5