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405614 tn?1329144114

how do you stay positive when there's always something?

I've been around this forum for about 3 years now (wow!). I've been helped through some tough times, had you to join the celebration during good times, and spent time away from the forum.  Sometimes it was because I wasn't up to it, others it was because of the old "if you don't have anything nice to say, don't say anything at all.

Oh, there have been good times, too, don't get me wrong.  

I've mentioned in a couple recent posts that I've had a weird new symptom that didn't show up on spinal MRI.  Yesterday I had a pelvic ultrasound for an unrelated female issue.  Today I had a marvelous PT apointment where my therapist had me feeling a LOT better.  My head felt more clear, my pain level was way down, and I felt really good emotionally.

This afternoon I got a call from my PCP's office saying that I had some thickening of my uterine wall, that it was propably nothing to worry about.  I was given the name & number of a GYN & told to call her and make an appointment.  Soon.  It was too late to call today, will call tomorrow.

I'm still having some buzz/tingling in the left side of my chest.

I want to try going gluten free to see if it improves how I feel, wonder if I'll have the energy to cook good healthy meals.

Any encouragement would be much appreciated.

Hugs,

Kathy
Best Answer
667078 tn?1316000935
Kathy,
  I know it is tough. Dealing with the changes this disease brings. Healthy cooking is easy once you learn how. it really take a little longer. I am pretty much gluten free. I know when I eat it.

  If anything getting down to the right BMI has helped tremendously. I am also saving money staying away from processed food. No impulsive spending on fast food, sodas, or snacks. I spend the extra on my weekly riding lesson.

  Keeping positive is hard. I was not a positive person at all when I started the MS journey. I always focused on the negative. I realized it was not going to work for two reasons. One I could not stand me. Two other people could not stand being around me. I spend more time by myself so I need to stand myself and I need other people more and more. My negativity came naturally my family was as negative as could be. Plus I had every bad thing done to me as child that could be done.

  I started looking at my animals they are not negative. I decided to learn from them. My animals are happy a secure because I love them. I realized I needed to love myself and love those around me more. Be more positive. It is contagious.

  Also my animals live in the moment. I realized worry was trying to control future events I have no control of and resentment is hanging on to the past. Dogs especially do neither.

  Polly is deaf and had several homes who did not understand her before she came to me. As soon as I figure out something I do was used as punishment to her like water and tell her she is not bad she accepts it and is okay with water. Grady's mom tried to crush his skull and he was adopted and returned but he is not afraid of other dogs nor people. He is nothing but a happy puppy. He accepts we have his best interests at heart.

  Even my cat Moon Pie let me lance an abscess several times a couple weeks ago but when I gave him canned cat food he was back in my lap purring all forgotten. Every time I nurse him after an injury we become closer. Now he kisses my face daily.

  What amazed me most working at the Vet was after amputating a dogs leg. You would pad the run with blankets. With in twenty four hours the dog would start figuring out how to get up and walk. They would work out their balance. The difference is dogs do not think about their body as who they are. They do not think gee I am missing a leg what will people think. They do not think I am less than other dogs.
  
  A human can mess up the whole equation for a dog with pity. Dogs do not understand this concept. I have had some truly broken dogs on my life psychologically and physically and treating them with patients but like any other dog  which made them whole faster.

  I just thought this was cool. I know as humans we have to grieve changes it is how we are designed. I just like the different perspective. I do not know where I am going with this but to say by replicating my dogs behavior I have crawled out of my whole much faster.

I sure hope you feel better soon.

Alex
15 Responses
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1253197 tn?1331209110
Dear kathy

Some posts just touch me in a way that gives me a sense of positivity. This is when strangers connect and show compassion in a unique unconditional way and I was deeply moved by the responses you have received and in particular Alex's wonderful posts about animals. I felt there was a lesson here about giving and receiving trust.

Kathy I am so sorry that you have been having such a tough time and sometimes in life it just feels like we are being kicked again and again and it seems like there is no end. We cannot always feel positive and have those "Pollyanna" moments and life is a constant learning curve. No-one can help you overcome the challenges that you face and this is for you to find out more about yourself and to use your own inner resources. We all have the capability to cope, but sometimes when things stack up on top of each other it feels like the pile is going to topple.  I have faced quite a few challenges in my life, as have many other people on this forum and I have learnt so much about myself and how I see me. I find that living in the present and enjoying the moment is honestly my best way forward and my other greatest lesson in life is understanding that you cannot change anyone except yourself.

I think you are doing remarkably well and I loved hearing about your cooking. I have had a few bread machine disasters...one when I forgot to put the water in and that was an interesting result, and the other when I forgot toput the yeast in.  Neither were popular with the family who were expecting lovely fresh bread for lunch!!

Take care and your friends on the forum are here for you whenever you need an outlet to tell us you are having a bad day..believe me we all have them and will understand.

with love and hugs

Sarah x
Helpful - 0
738075 tn?1330575844
Every day is a new one.  Some days are better than others.  I've been given this day, and I'll do the best I can with it.  

I'm so glad you're putting good food into your bod (and Oregon is a great place to do that!).  Good friends/housemates/partners help.  Tap into your creativity.  Talk about it.  Keep in touch with your Spiritual side.

I'm feeling for you, girlfriend...
Lisa
Helpful - 0
398059 tn?1447945633
Look my wife in the eyes.
Helpful - 0
405614 tn?1329144114
Thank you all so very much, you warm my heart.  

Alex, I cried when I read your post.  In a good way.  You touched the core of what is missing from my world: mindfulness, living in the present moment.  I learned that before, and it changed my life.  Taking yoga is a way to remind myself, spending time at the Cat Adoption Team helping and loving the cats (they help me, too) is a wonderful example, too.
I miss my Fluffy cat.  I'm going to print and save your words, too.

I've eschewed fast food, red meat, soda; I make my own whole grain bread & choose healthier snacks.  I have tons of favorite recipes that are healthy, mostly vegetarian, whole grains, beans, legumes,  plenty of fresh vegetables, fruits, and so on.

I too often get overwhelmed with lassitude, letting my fatigue tie me to the TV or IPad (love the Scrabble) or Android or books.  Or watching the birds out the living room window.  Trying to ignore pain and dizziness and blurred vision and slightly uncoordinated hands.  Memory getting worse.  My roommate drives me to yoga or I'd have a hard time going.

I love it when I do make a good meal from scratch.  I have everything ready to make my favorite North African Chickpea Stew, even measured out the cumin, cinnamon, paprika, and red pepper flakes.  I bogged down at the peeling and chopping yams & onions, chopping dried apricots, etc.  I'll maybe make it for dinner.

I baked a loaf of gluten free whole grain bread this morning, but messed up and used the wrong setting on my bread machine.  The loaf is funny looking; it wasn't done and I had to put it back in to bake some more.  It tastes good, though; had a couple pieces with some fresh ground almond butter between it for lunch.

I did drive to the store and buy a few things (including another bread mix), but forgot my shopping list so I don't have everything to make the minestrone I planned; tomorrow's another day.

I can think of my cooking as a meditation.  I love the idea of cooking plenty and having good stuff in the freezer; used to do it all the time.  Instead of thinking of each step as something I have to get through, I can think of it as something to enjoy, to be present with.  Then I can enjoy each bite when I eat it.

I've rolled with so many punches, rose from so many ashes, that I'm dizzy and dusty and tired.

Thank you all for giving me a hand up, for being so supportive and understanding.  It's wonderful to hear from my old friends and newer ones, too.

I have some yams and onions to peel and chop...

Love,

Kathy
Helpful - 0
559187 tn?1330782856
Everyone has pretty much said what I was going to say.  That's what I get for seeing posts to late.  Well, my dear friend, you are in a group with good company here and we all can understand the challenges faced with having MS and even others who have chronic health issues.  IT is truly one day at a time.

I had to move recently and although my new place is fantastic, almost like living in a 4-star hotel, but I was sad at the same time. I was sad because of the reason I had to move - MS.  I couldn't function in the old place climbing stairs all the time. It seemed worth it at first because I loved the place, but man, I was so tired after working all day to even think of having to clim the stairs, get changed, get dinner, etc.  No life whatsoever.  

Now I see a light at the end of a shrot tunnel.  I hope you will see the light too.  Do what you can when you can and please don't feel regrets for things you dind't have any control over.  I'll take my own advice too.  

Hugs to you.

Julie
Helpful - 0
Avatar universal
We are thinking of you!
Helpful - 0
1168718 tn?1464983535
Dear Kathy,
This is sucgh a difficult time for you, and you have to grieve the changes that we are going through.  I to had the uterine thickening, and they did a D&C and I was oK, so maybe that will work for you,

I also ditto what Alex and Addi said.  We have to go with the punches, and duck the big ones.  

Know that we are thinking about you, and praying for you.  

*HUGS* and keep your chin up,
Candy
Helpful - 0
293157 tn?1285873439
Hi Kathy, I'm not on here as much as I used to be, cause so many days I just can't think or type.  But, I do try to stay intouch I read here alot.  And it's nice to meet new friends and see my old friends online here.   LIke you!

sorry your having a hard time right, but you know how to ride that wave and keep things going. Rest up when you need to and take care of yourself.  

Hugs
Wobbly
Helpful - 0
1318483 tn?1318347182
Wow wow wow

First off, I am so sorry that you are having a difficult time right now, Kathy.  You were given some really touching responses and I echo all of them to you.  Hang in there, girl.  

Alex, I know you wrote this to help Kathy but I am really glad I read it.  I can be so dense sometimes....maybe just stubborn or something else.  I can tell you that you just gave me an AHA moment.  I am going to print out what you have said here.  

I have known everything you said here about animals.  I have lived it and I have used these methods back when I used to rescue mill dogs that were the worst of the worst.  

Why it didn't dawn on me to live my own life in the same manner, I don't know.  But you have said things very clearly and I felt like you wrote this specifically to me.  I hope Kathy got as much out of it as I did.  

Thank you, Alex-
Addi
Helpful - 0
923105 tn?1341827649
Hi Kathy,

I was told by an old friend many years ago when I was first dx - to put your best foot forward everyday - and this saying has stuck with me over the years.

I agree with Summan - when I feel up to cooking, I do a nearly a weeks worth of food.  My Husband goes crazy with the amount of food that I have in the Fridge/Freezer:))

I LOVE cooking, so that is why I am 'stir crazy' in the kitchen - when my legs will let me:))

Just do your best Kathy and see what happens?

Hugs,

Debs x
Helpful - 0
704043 tn?1298056844
it is very tough- but so far with me it passes!  it can sure break us down, but try -this symptom or that one probably will go away!! hang on!!  hugs  tick
Helpful - 0
1394601 tn?1328032308
I am in agreement with Bob.  Conserving energy is the most important thing with this disease.  When I cook, I cook.  I keep my pantry and freezer well stocked.  When I have the energy, I cook.  I never cook just one meal.  I make large amounts and freeze.  I also never just cook for that night.  If something is in the oven there is something on the stove top.  When I finish, I probably have six or seven meals.  We never do fast food.  We eat healthy foods.  I might add, keeping a stocked pantry and freezer will save you a fortune because you buy only on sale items.
Helpful - 0
1453990 tn?1329231426
Kathy,

I spent the weekend in San Francisco.  I have learned to take the buses up hill and walk down.  There are a bunch of things like that.  Right now, I'm kind of riding the bus on my vision and spasticity issues.  I have an MRI and an MS Doc appointment coming up. Even with the stress issues, I try and take the easy way for the hard part of the trip.  

I'm learning that it is all about "energy conservation."  I guess I'm just getting to the point where conservation and sleep out-weigh most other concerns.  I have to travel for work and right now, it is every other week. My legs are telling me it will be every third week pretty soon.  Either that or a blue placard much sooner than I had planned.

Not sure if that helps, but that's kind of where I am at this point.  
Helpful - 0
Avatar universal
AMO
dear kathy,

i wonder this same question.   how     do  we  do it?
for   some how we   do. wether it iiis by faaamily, med   or god, we do.

You   start wondering how you deal with othher life things that come around. But you do.
I hope your  gyn appt comes soon and get that figured out.

The g/f  diet is not  so hard as was just eight years ago.
I would glad to share  ideas  andrecipies if you want.

get a   good night sleep. and rest. amo
Helpful - 0

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