Went to a local Women's MS Conference

[HVAC]

I had a great day!  I saw many old friends from the Ms chapter. Polly and I met some new ones. People asked if she was a real dog. They were throwing a half a dozen beach balls and some fell right by her and she did not move. She slept at my feet through the meals. There were a bunch of things on dealing with Stress and Mindfulness Meditation. All things I needed to be reminded of. I am signing up for a Mindfulness Class at the Cancer Hospital. I forget to breath and have been worrying way too much lately. I hope everyone is well. It is great to be alive today and out in the world. I have been so sick and being in bed gets old.

Alex

[HVAC]

Yes Meg the heat is brutal. I did HVAC for a living so I know having a broken swamp cooler is bad. I had to build one in school. It is cool technology literally. I hope you get relief soon.

Well even though it its warm I am off to the barn to clean and oil my saddle. Tomorrow is another chemo. If I do not get out today it may be weeks. My saddle has not been oiled since April.

Alex

[anon07072023]

Boy, I sure can't think of a better person to do health care advocacy than you.  Even before all of this, you were right there always - advocating for people, going to talk to politicians and those who would listen. That's great!  I know that you know that you are needed, but it's nice be to be reminded of it every now and then.  YOU are definitely needed. Although, most of us have never met each other in person on this forum, I think that we all feel a deep connection with each other. We hurt when others on here hurt.

I'm glad that you had a good day.
-Kelly

[meg321]

Thanks Alex, I can relate to almost  everything you say.  Like so many of us, I have good days and bad days....and good moments and bad moments.  If I could just save enough to get a whole day or even 2 days together, it would be great,  but I don't seem to do that now.

But the bad times don't last long so its okay.

Anyone else suffering from the heat, my swamp cooler decided to stop working but my husband finally has it fixed, it took a few days.  Its the one in my room so I used the living room while it was down, but still I like my room.  Tomorrow i is supposed to be 103 and the next day 104...thats just really too hot !!

hugs, meg

[Lulu54]

Alex, all I can say is I am glad you know there is purpose in you being here , especially with us.  Nighttime can be the worst when it is dark an you are aloe with your thoughts.  I hope the mindfulness meditation gives you some ways to focus   Hugs, Lulu

[beema36]

Thanks for sharing, Alex!

[HVAC]

You all are one of the reason I can fight this thing. My husband is another he gave up his bike ride and stayed home with me today. Today is another sick day for me. I had a good day yesterday but over did it. I do not regret it. I needed a normal day. It was nice to watch a movie and laugh with my husband today. I feel physically so bad but I feel the love and that makes all the difference. You take care my friends.

Alex

[Dagun]

You are just amazing dear Alex, and how you´re helping others here how to cope also, just amazing...
Dagun

[HVAC]

Unfortunately all MS chapters are not the same. Some offer more than others. We had a very good Chapter and we just merged with Chapters in others parts of NC and SC. I am grateful we have the activities we have. Of course most of it is due to volunteers with MS. We have a lot of great volunteers with all degrees of MS. They do not leave it to another person even though they have fatigue or limitations. The friend who picked me and Polly us and helped is older and has less mobility than me but she can drive. She helped with this conference. Other MSers put on the Mindfullness Meditation and stress reduction workshops. Our Chapter does a lot of fundraising but it does so much more. In fact being involved in volunteer work from my diagnosis has given me a purpose and connection.

I am doing health care advocacy at the end of the month and all day meeting in the midst of chemo. That is the kind of thing that keeps me going. Knowing I can contribute. I feel so useless these days. Having the Society say can you do this on such and such date gives me purpose. It makes me feel needed. The worst thing about disease is when people stop needing you, they stop asking you for anything. They only ask what you need. Sometimes being needed is the greatest gift. A friend with advanced MS is much happier now that her kids have asked she and her husband to babysit. It is hard but it is such a shot in the arm. None of us wants to feel useless. None of us are useless. Heck I feel good doing housework when I can. It makes me feel a part of life.

Days are good. Nights when I do not sleep is where my spirit falters. The good thing as it can revive with a little sleep. I can not sleep and if I sleep I have such bad nightmares and can't go back to sleep. Sometimes it is the pain or getting sick all night. It is lonlier at night when you are alone. I cry a lot when I am a lone at night.

My husband will be off on the bike all day so I will be alone. Monday I hope to go to the farm and clean and oil my saddle. I do not have the energy to ride and clean my saddle and boots, etc. They need it, because no one else will clean and oil them. It is like some house work only gets done by me. It is weird I worry about certain things when I am helpless in bed like my saddle. The other day I had to give Polly a bath while very sick. She at least is so good. I point to the tub and she gets in and she stays there. The nurse called and she just stood in the tub while I talked to the nurse. Another dog would have bolted.

Part of Mindfulness meditation is accepting reality. The lady talked about playing the cards you are dealt not the hand you want. That is the idea of it. Living in the moment. Being present and cherishing every good moment. Accepting the bad moments as they are, not magnifying them, not making them worse by reacting, and knowing they are moments to they will pass and good ones will come gain.

I had good moments today, I have sad moments tonight when I can't sleep and I know it will pass.Tomorrow I will have good and bad moments. I will grab onto the good and try to help the bad pass by. I will not dwell on the bad.

Alex

Alex

[Guitar_grrrl]

Mindfulness Meditation just rocks!  I'm so glad  you had a good day, Alex - you deserve it!

Big hugs,
Lisa

[anon07072023]

It's nice that you got to get out and see some old friends and meet new ones.  I don't even know if they have an MS chapter where I live.

[Dagun]

I´m so glad to hear that Alex. As Jane says I sure hope that your tomorrow will be just as great for you. I love your spirit trough everything.
Best wishes always,
Dagun

[beema36]

Good for you, Alex! I am glad you were able to get out and enjoy yourself. I hope you can share some of the mindfullness tips with us. I am sure it would help most of us.

[JaneK1975]

I'm glad you had a great day, Alex. It's really smart that you're finding ways to get out and contribute to the community in spite of all you're going through and feeling sick. I hope your tomorrow is just as great as your today :)