Back from Chicago

[michelleric]

Well, I made it. It was fun but also very difficult.  The meeting location was changed from the hotel to the Loyola law school. I already felt the panic set it...I was told it was a "quick 5 minute walk". OK, a quick 5 minute walk, turned out to be a very difficult 1/2 hour walk. I pushed myself WAY too hard, and am severely paying for it.

We went to China town for dinner, and the escalator was broken. I didn't think I would make it too the top. It was not only physically difficult, but mentally embarrassing. I was with a group of women, who don't know of my diagnosis, and felt just like a "lazy" person. My friend told them about the MS, and then I got all the "sorry eyes" on me.

Just a challenging time, and makes me so sad to see how far I have gone. I am 41, but truly the 80 year olds were running by me. Makes me very scared for the future.

Then as a surprise, hubby got all of us tickets to the Indians game last night. So, after getting home, walking what seemed miles to long term parking to find my car, then driving in town to meet hubby and kids, we went to the game.  He dropped me off at the gate, and I waited for them to come. I could barely make it to my seat, and I asked if he could find a wheelchair to rent for me at the ballpark. He laughed, he thought I was joking. I was not.   He saw all the trouble I was having and still kept urging me on. I just feel at a loss. I don't want to feel like the left behind mom, and that is what it is starting to be.

I also am missing my mom terribly today. I keep picking up the phone to call her, and then it hits me. She has been gone 5 weeks now, but I still don't think it has sunk in.

Ok, enough of the poor me's. Just saying hello again,

Michelle

[michelleric]

Thanks for your responses.

Quix: thanks for the direction to that post. It was very good for me to read. I will send it to my husband, and a friend of mine. It would me good for them both to read. No, he has never been to the neuro with me. That too, would be good for him. I have an appt next Monday to talk about meds ( I think). I will see if he can make it. It is now 4 A.M., and still cant sleep. I am just in awful shape.

Maggie: I am so sorry about your husband. Thank you for your good idea with remembering good things at those times my hand reaches for the phone. I will try that today. 2 years and 10 months? I am truly sorry.

Michelle

[LLWB]

Glad you had some fun, but sorry about the problems. Been there done that with the ex-hubby. One of the reasons he's now ex.

I sympathyze with you about your mom. I used to call my husband every eveing about 6:00pm. We worked different shifts. I still 2yrs 10mos find myself reaching for the phone to call him. Not as often, but it still does happen. I decided when that happened to think of one fun thing we did together. So instead of feeling sad, I remember good things. Grieving is such a personal process, we all cope differently. It will get better.

Hugs & prayers
Maggie

[Quixotic1]

Oh, my, you really went through a hard reality of the new you.  I'm sorry there were glitches on the trip, but glad you went and had some fun.

Hubby is in denial.  The slowness is not from lack of trying.  He doesn't see that.  Have you read the HP called, "What I want my family and friends to know?"  this is a very touching description of some of the realities of living with MS.  Why don't you read it and consider having your husband read it.

http://www.medhelp.org/health_pages/Multiple%20Sclerosis/What-I-want-my-family-and--friends-to-know/show/357?cid=36

This is a very important topic for those of us with family or friends that seem to think that MS can be overcome if we would "just try harder."   Also, he needs to understand that we pay dearly for overdoing it and "any" trip will be overdoing it.  Just recently I have been resorting to the scooters in the stores when I am tapped out and even took a wheelchair through IKEA.  That will be the way for me to get out and do things that I have avoided for the last four years.  My family is on-board with my lack of stamina and energy, but not all are.

This doesn't solve the real problem, but if you go to the ballpark periodically, you might call them and ask about wheelchair rental.  Then have a heart-to-heart with hubby.  He needs to get over this delusion that encouragement will make it all better.  Has he ever talked to your neurologist?  Would you two consider going to an MS support meeting?
\
I'm sorry about your mom.  I understand about the reflex of thinking to call or plan something with a person.  There is a reason that some cultures assign a long period of mourning.  You don't get over the death of a loved one very quickly.

Take care of you.  Get the rest you need.

Quix