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

  

[uk2]

Hi

I find the hardest thing of being ill is the lost of the life you had, you grieve for that life like you do a person and that took me by surprise.

then their's the guilt you feel and as i am a mum with young girls i feel guilty alot that i cant drive them to there clubs anymore, i cant hardley come to watch them in their plays and if i do i come in a wheelchair and i hate the questions the other kids ask them!

i hate i have to have strangers in my house to do all the things i should be doing, and

i hate that my kids never have friends over and no one ask them over either.

I hate i lost friends through this, and i have lost my marriage through this illness and am a single mum i wish i could walk away like he has.

I hate that somedays all i talk about is my meds or how i am feeling, that my friends wont tell me how they are feeling cause they feel sorry for me and dont wont to put there feelings on me but i'm dying to know as i want to talk about other things things that are important to them.

I hate seeing my kids worry about me, and i hate how much responsibility they have to take on.

I hate the way people look at me in the wheelchair,and i hate that that should bother me.

i hate i cant even take my dog for a walk never mind run with her like i used too.

i hate that no body not even my closest friends know how this feels (except you guys and doni my best mate)

i hate i am alone with no family to help me.

But i love the good days, the days i get out in the wheelchair with my kids.

The days i make it to church or an old friend pops round for a cup of tea and a catch up.

I love the fact i have got a new mobilty car coming and i might get my independance back be a mother again go see my friends that will be a great day when i drive again.

I love my faith,the sun (when not to hot) my pets my kids i am still blessed.
I love the new friends i have made on here and the outsideworld because of my illness.

although i have been to the darkest place even considered suicide i came out the other side, and although i face uncertainty everyday i still try to find one thing to make me smile everyday.

I cant say i dont worry of the furtue as i do i worry, i worry this is more then fibro thats why they are retesting for MS that for 2 yrs or more they have missed something and thats why i am disabled now and this is only the start but i also have hope that they did miss something that this time they will find something and there start treatment and i wont get any worse.

everyday is different and sometimes thats good but most of the time that *****!!

I'd loved all your post and cried at some, we are a truely unique family.

sam

[doni54]

Hi All,

Just want to thank Heather again for this wonderful thread, and thank DVision for bumping it up for us!!

[syndismilez]

Hi!!!!!!
I was a poster on this topic!  I am still in Dx'd. I really haven't pursued it much. I just had a hyterectomy on Wed. It was a partial but took my right ovary. It was done laproscopically!!!  4 little incisions!!!  I had a pretty bad case of endometriosis.
I just had to take a break from neurologist. LOL.  My gyno helped in taking away one more stressor in my life.  
Now I can concentrate on healing, getting back to exercising, eating right and seeing how my symptoms improve or not.
My emotional state had leveled out. I have accepted the chronic illness.
Of course there are days that I lean on my fiancé. But I do good most of the time :)
Cyn

[essdipity]

Rereading this makes me sad. So many of our faithful members posted, but have since sort of faded off the forum. Where are you, my friends?

I MISS you.

Love,
ess

[doublevision1]

With the recent discussions of how MS affects our emotions, I thought I would revive this great thread that Heather started last year.

There are a lot of new members in this forum and it would be nice to hear from all of you on this topic.

It would also be interesting to hear how those of you who posted on this thread are doing now.  Some of the members who posted were in limbo at that time, but since then may have been diagnosed.  Others, who were already diagnosed, have been living with MS for another year.  Do you still feel the same as you did a year ago?  How have your emotional responses changed?    Emotionally, are you doing worse, better, or the same?

In re-reading my post, until very recently I had become much less anxious about my health than I was then; was feeling more calm and more upbeat and feeling somewhat well-adjusted to living with a chronic illness.  My treatments were going well, I no longer had any anxiety about self-injection; I felt even more hopeful about all the research on MS that I have read about this past year.  I still feel grateful, and my personal relationships have been strengthened since I stopped being so secretive and let people in on what was going on with my health.

However, due to recent developments, in many ways I feel I am back to square one at the moment, as I await news of my recent blood test for NMO/Devic's disease.  I expect the whole cycle of grief to begin again if in fact it turns out I have been misdiagnosed.  However, I do feel like I'm now stronger emotionally to deal with it, than I was when I was first faced with an MS diagnosis.  I guess we'll see.

~doublevision~

[monotreme]

Carol,
  You have the strength of many, Carol.  I admire you.  Your strength could only come from our kind and merciful God.  But I do agree with ess and let the floor get dirty.  The people who are OUT of the chair should be doing the work.

Elaine