Talking about our emotions...

[Heather3418]

I thought it might be interesting to talk about our emotions and not our symptoms.  There is such a huge emotional component involved when we are dealing with "Limbo-Land" or dealing with the diagnosis of MS.  Hopefully after you post you will feel that your load is somewhat lighter for having shared your emotions with others.  It may actually bring all of us even close together.  But talking about what we are feeling and how we cope, can be a huge benefit to our overall well-being.

We are always listing our symptoms and sometimes we talk about our emotions, but we never concentrate totally on just the emotional aspect of what we endure.

Would you be so kind as to share the emotions you deal with and how it affects your daily lives?  Would you share wtih us what you feel your caregivers must go through, when they stand by our side with us, through this whole ordeal? Or do you think your loved ones have abandoned you? How has it affected your relationship with your loved ones?  (For example, has it brought you closer together, do you find that you argue over little things when you aren't feeling well, do you think that your family tries to unload too many responsibilities onto you; when you just don't have the energy to even clean the kitchen or take out the trash?

I personally suffer from periods of doubt in my abilities to contribute to those around me.  I do wonder what 'tomorrow''s' challanges will bring and if I will be able to meet them head on.  I find that some days I am depressed about what MS has taken away from me, then realize how much it has actually given to me.  It's given me a different look at the world and those around me.  I appreciate the little things more than ever before. I don't seem to "sweat the small stuff anymore."

Having MS has given me a totally different outlook on life.  I don't take one day for granted and try to accomplish everything that my body will allow.  I try to live life to the fullest, never knowing what tomorrow may bring.  It has brought me closer to my loved ones because I see the sacrifices they make for my disabilities.  I also have anger for my loved ones at times, when they expect too much of me on one of my bad days.  Sometimes they do not understand that all I want to do is just lay down and rest my painful body.

The greatest gift that MS has given to me, are all of those that post on this forum.  Without the friends I have made here, I really don't know how many days I would be able to greet with a smile.  As much as MS has taken away, I also find how much it has actually given back to me.

I would appreciate your personal thoughts.  Again, not the symptoms of your disease or possible disease, but the emotions you endure, day in and day out; with or without a diagnosis.

I really feel that by sharing the emotional aspect of our daily lives, that we indeed can give some insight to others; how to endure and carry on despite the trials.

All my love to all of you.  My "Angels with Invisible Wings."
Heather

  

[AnyaD]

Hi everyone !!!  I am going to bring some humor. You are all so wonderful but I visit you very seldom, because I get very scared every time I read about all symptoms you experience and I don't YET, but I am sure will in the future. That's not the point. I will remind I was diagnosed based on Lhermitte's and MS like couple of lesions in the brain and spinal cord. My doctor and I are waiting for a second attack. I am so stressed about this whole MS deal that I can call sneezing an attack. I cought myself probably 10 times on stuff like that. Here are some examples:
1. I turned heat on high in the seat of my car and completely forgot about it. Then in 10 minutes my back started burning - my first thought was 2d MS attack !!!
2. My Husband and I were at the airport one day and something started buzzing. I thought my ears were buzzing and I told my Husband I am having an attack. I was about to tell him about my ears and he told me to wait because the whole building was buzzing and he could barely hear me...
3. I spilled soup all over my hand. Next day my hand started to feel sore and the first thought I had was of course an MS attack....

I can continue the list, I now laugh at myself. This MS anxiety caused my Globus sensation. I had this feeling of an apple in my throat for a week, so I ran to see my GP thinking I had a cancer or whatever....He ordered an X-Ray but told it was probably just a body reaction to too much stress....I am so used to stress, that I forgot what it feels like to enjoy something without having this second thought at the same time "You have MS, enjoy while you can". I don't know if I ever forget for a minute about my diagnosis. This is so crazy. Do you ever get used to the idea and just except it? From another hand, I do appreciate people and my Husband especially, much better, I try to spend more time with my kids and I don't take things for granted anymore.....This experience tought me a lot !!! Thanks for a great topic. Take care !!!

[pennst8r]

I've been really wanting to post on this phenomenal thread, but am afraid that once I start I won't stop and will cry. I hate to cry. So I keep putting it off another day. Maybe tomorrow...

Love to you all for your bravery, your candor and your awe-inspiring strength.

Penn

[essdipity]

I know this thread is about our own emotions, but that's not where I'm going with this. Much of what I've read here is so moving. My heart goes out to everyone, and I do know how fortunate I am in comparison to many.

But Carol, this is just so awful. You put up with an enormous amount physically, every day, and I don't see how you do it. You also have to deal with unbearable things from your family. It isn't my business, I know, so I'll just make this one teensy comment: Why don't you go on strike? From what you've said there are several other able-bodied adults there who can sweep and mop. Let 'em.

The end. Off my soapbox.

Best love,
ess

[grannyhotwheels]

Wow, emotions,  I'm having so many emotions these days that I'm not sure how I feel.  As most of you know I'm going through a flare-up right now and the biggest emotion I'm fighting now is depression.  I absolutely hate being depressed.  A lot of ya'll know that I'm normally a pretty happy person.  I try not to let things get me down.  I can usually do this by taking one day at a time, one hour at a time, and one minute at a time.

Lately that's been really tough to do.  Most days I'm sitting on my pity potty feeling sorry for myself.  I'm back in this stupid chair, (which by the way I'm thankful to the Lord for providing me an electric one), and I want to get up and walk so bad I can't stand it.  I want to go outside and walk barefooted in the grass. (it's almost 70* today).  I want the pain to go away for just a little while.  I would like for just a little while to not have a cramp, spasm, or needles sticking in my feet (feeling).  

Sometimes I look in the mirror and think, I look like a normal person.  I have my hair fixed nice, I have make-up on, I'm dressed nice, I look like I could stand up and walk.  No wonder why people make nasty comments when I ride on the store scooter.

Another emotion I'm having right now is sadness.  I'm sad all the time.  I have to make myself smile.  When I went to church this morning I made myself join in the conversation.  I wonder if they could tell that I could have care less what we where talking about?

Then there is  anger.  I'm mad at God, my husband, my children, and myself.  I keep asking God why he keeps doing this to me and I can't seem to get an answer.  My husband thinks I should bare through the pain and keep walking with my cane.  If he only knew how sever it is.  My children, because, they seem to have no respect or regard that I'm unable to do things, or if I do something I know I shouldn't, I pay for it dearly with the pain.  We have had the flu being passed around here at my house.  Thankfully not me, but everywhere you look there are tissues on the tables, the floors and the furniture.  I roll around picking them up constantly.  No one can seem to throw their trash away.  Cereal boxes, cracker boxes, cough drop wrappers, diapers, I'm always picking this stuff up.

Last night after everyone went to bed I swept and mopped the kitchen and dinning room floor.  There was tea, cough medicine, food, I'm not sure what all was on that floor but it was disgusting.  They where all still awake and even looked to see what I was doing, but not one of them told me that they would do it the next day or nothing, they just smiled and closed their doors.  It's not east to sweep and mop when your in a wheelchair, but I did it.

Next, anxiety, confusion, terror, and a very thin wire away from totally loosing my mind.  I want to scream at the top of my lungs.  I want to start yelling at everyone in my house about the things that irritate me.  PICK UP YOUR ****, TAKE CARE OF THE BABY, PICK UP YOUR OWN DIRTY CLOTHES, ETC...
I'll hush or I could go on all day.

I think that the only emotion I have left inside me is thankfulness.  I'm so thankful that I have all of you in my life.  I probably would do the above paragraph if I didn't have ya'll to scream at instead. hahaheehee.  Wen I'm with ya'll I laugh, cry, get angry, learn things, and get to meet new and wonderful people.

I love to laugh, as some of you know, and lately this is the only place I get to do that.  There are so many of you that are so witty and remarkably funny.  I have laughed so hard on here that I've cried.  Quix has some of the off key kind of comical remarks so that it is hilarious to read.  The same for several of you,  I don't want to start naming names because I would leave someone out and I don't want to do that.

Thank you Heather for giving me this chance to spill out my emotions.  I'm sorry it's so long and boring but Heather was right, I feel a hundred times better to have gotten that all out in the open.  Even if no one reads this I don't even care.  Just yelling and crying on the puter was good enough for me.

I'll try to keep laughing because it seems to feel the best. haahaaheehee

I'll be praying,
Carol

[Barbie51]

I've never been asked about my emotions of MS.  Very good question.  When diagnosed in '02 I was absolutely terrified.  Unlike many, many others I never in my wildest dreams suspected MS.  All I knew about MS is a very nice lady who taught bell choir when I was a young mother had it, and she could barely walk, even with a cane.  I immediately apologized to my husband that he would be strapped to an invalid and went home trying to prepare for waking up one morning blind, lame or paralyzed.  I was just starting a new job and thought my life, as I knew it, was over.  After many months I begin to accept my diagnosis and learn more about what it meant.  I did immediately start on Avonex, which I'm very grateful for.  I've realized I can't plan for the future, because nobody knows what it holds.  I quit that new teaching job after three years because I just couldn't handle the fatigue and stress.  But I met amazing people there, whom I still consider to be good friends.  They were very supportive of me and my diagnosis.  My husband is wonderful, as are my children.  I have pity me days, but mostly I'm kind of grateful that MS made me slow down and realize all the wonderful things and people that are great in my life, and that I can contribute to this life in a positive way, even if I can't "work" anymore.  I don't believe God "made" me this way for a reason.  Instead, I believe he allowed it to happen, and I can trust in Him to help me learn and grow and endure.  And I believe He has already helped me with that.  I am so grateful for all my new cyber friends.  You are all amazing!  

To all of you who are hurting right now, I'm so sorry.  I think it's okay for you to cry out, "Why me God?"  It's okay to be angry.  But I know God is listening and caring and please know that all of us here are also listening and caring.

Barb

[Angie1960]

I've been wanting to post - about emotions.

This is the worst - I feel bad, I've felt bad for many years.  The depression has driven me to daily suicidal thoughts.  I just deal with it - the Psuedo bulbar or "labile effect" and not knowing when it will hit - I've had that for probably 20 years.

Why do I want a Dx?  Cause I want to feel like I am a survivor and that my abrupt abandonement of my dreams, declining motivation, lesseining abilites, etc. were not all my fault.

Getting a Dx - I get to remember my childhood and how my parents basically ignored a chronically ill child and I got to remember all the things I had forgotten, like the fainting and sleepwalking, the pains in my legs, and how I made wallking aids by taking my father's belts, strapping them to my thighs and pulling each leg up by the rest of the belt with each step.  I only needed this after the repeated penicillin shots I would get in my *** everythime I got strep throat.

I wonder when I see the definition of MS, many scars, if some of us (at least) share that on more than one level.