My first loss to this disease

[hbananas]

Bear in mind, I have transverse myelitis and trigeminal neuralgia, not MS (so far.)   I sing with an a cappella group of more than 80 people that rehearses three hours weekly in a rented store in a dying mall.  As a non-profit group, we are given a very good deal on the rent, and by having our own rehearsal space, we are allowed to leave our risers set up and have our music library and costume materials and returned costumes in a permanent place.

The trouble is, we are responsible for maintenance of the space other than things like roof leaks that are the responsibility of the mall itself.  Our air conditioning is on the fritz, and we won't ever be able to come up with the $5K or so it will take to fix it.  This week the outdoor temperatures are in the 90's and humidity is high, as it always is in the great plains during the summer.

Last year we discovered we could set up several fans in the store entrance and bring cooler mall air into the rehearsal space.  That keeps the temp in the 80's once we all get together, stand side-by-side on the risers with no breaks for at least the first 2 1/2 hours and contribute our body heat.  The a/c didn't start failing until late in the summer last year, so there were just a few weeks of high temps.

This week I was going to be a good soldier and tough it out.  I only took about 15 minutes out to sit and enjoy my little cooling towel, then back up and back to work.  The heat really makes the eye pain from the TN very bad, but a good night's sleep usually puts me back to normal.

I woke up the next morning so stiff I could barely walk, with continuing eye pain, and so tired I had that slightly nauseated never-went-to-bed feeling.  Once I got to work, I kept falling asleep at my desk, and I was too sore and tired to stand up to work, which is my usual solution.

So, once I make it through next week's rehearsal and a Friday night performance, I have asked for a leave of absence until October, but the hall is really only bearable Nov-Feb.  I will miss being in our big show in August.  I have already resigned from a quartet because I can't handle two nights a week of rehearsals.

This is minor compared to those of you who have lost mobility, vision, careers, and relationships.  So far my worst problem is some urinary uge incontinence and constipation that are still manageable, but slowly getting worse.  Now the fatigue is getting bad, and one leg is feelin weaker.  I am having to choose between what comprises my entire social life and my work.  At least I can find some other way to be with my friends and meet new ones.

I'm going to a new MS neuro in December.  Maybe she'll consider the TN to be a relapse and get me started on a DMD.  That is all.  Thanks for listening.

[debgen]

I am so sorry for your loss of something you love to do. It really s***s when we have to make so many sacrifices because of  MS.  I truly hope that you will find a way to continue singing with your group. Maybe a fundraiser for an affordable air conditioner? Don't give up :)
(((hugs)))
Deb

[JaneK1975]

I think I understand some of what you're feeling. I am lucky my problems have not been anywhere near as difficult as some problems that others have dealt with. But I have had to deal with a greatly reduced energy levels recently. I can get used to numbness and tingling that never recedes, but what on earth am I to do about lack of energy?

Of course I can't work less, so my social life suffers. I recently decided that I will not make any plans for a workday evening unless I absolutely have to. That means no weekday dinners or happy hour with friends. It ***** and I hate it. When I get asked somewhere, I don't say why I don't want to go because I would have no idea how to explain it. I just know that by the end of my work day I will literally have no energy left. I choose to believe that this is a temporary setback, and hopefully the more time that passes since my last flare, the more I will return to "normal".

I'm sorry you're feeling down. I hope it helps to know that you're not alone. Shell had some great suggestions above about those stand-alone cooler units. Maybe if you got one  and strategically placed it to cool you while singing, coming back in October wouldn’t be so bad? Or what about shortening your sessions (do you have to be present for the entire rehearsal)?  

If that group is too hardcore, maybe some other singing group would be a better fit for you? Many years ago I played drums with a band and we played out 2-3 nights a week. When I started college, I gave it up because it wouldn’t fit in my schedule, which already included full-time work. Later, I took up playing guitar and bass in an acoustic Beatles cover band because it didn’t require as much of a commitment but I still wanted to have music in my life. If you love music, you should keep it in your life somehow. It’s a huge stress reliever and you deserve to do what you love.

I know we have to compromise sometimes, but I also think it’s important to never stop fighting for what you want.

Hugs,
Jane

[Eyesnlegs]

I too had to give up singing for similar reasons, unless you area singer it is hard to imagine the heat generated by all those bodies doing what is really quite strenuous exercise.

I really feel for you, my group was much smaller, only 8 of us, so they were quite dependant on me. To add insult to injury I can no longer stand long enough fora concert and sitting down makes singing a lot more difficult!

Good luck with trying to keep going.

Pat x

[sllowe]

Hi Hbana,

This simply rots. Can your group raise enough funds for the stand alone units? No exhaust area needed, often seen in the Lowes, and Home-Depot for a few hundred bucks? Some also have the capacity for both heat and AC. I was looking into them myself for our basement. Depending on the room you work out of, maybe one would do the trick to take out the humidity.

You need the good stuff in your life :) Sometimes these home improvement stores donate too.... Just thinking off the top of my head here. Hate hearing you have to give up what brings you quality of life :)
-shell

[Lulu54]

No loss is minor and we can't get in the habit of comparing what we are going through with what the next person is dealing with.  I'm glad you can talk about this here - I am so sorry you are having to make these tough choices.

December?  I trust you have asked to be put on their cancellation list and call them regularly to see if something has changed.  They need to get you bumped up sooner if you feel you are declining.  

One thing we do really well around here is to listen!
hugs, L