[teresakoch]

I posted this on my personal blog a couple of weeks ago, but thought I'd post it here as well, as most of you can probably relate. I was initially diagnosed a year ago with ocular myasthenia, but it's started to progress into full-blown MG, and I just needed to vent.

I try not to complain too much, but it's hard for other people to understand how I can be "so sick" when "you look just fine".

I tried to help hubby out with the laundry last night, and couldn't even fold 4 pairs of underwear before I was exhausted.

And if one more person tells me I'd feel so much better if I would try exercising.....

Because I haven’t had a Pity Party in a while…..
Posted on April 14, 2011 by Teresa in Fort Worth, TX
http://teresainfortworth.wordpress.c...ty-in-a-while/

Every once in a while, you have to rant, you know? I try not to do this too often, because really and truly I have a great life. But today is just one of those days. So please bear with me (and don’t feel like you have to read this; I’m just getting stuff off of my chest).

I think what sent me over the edge was getting a message from one of the girls last night saying that the deadline for applying for Summer School had already passed.

I’m tired.

I’m so very, very tired.

This disease that I have (Myasthenia Gravis) is one minute of tired after another, and I can tell that it’s getting worse. I had hoped that I would be spared the progression of this disease, but it seems that is not to be the case. This isn’t how I planned to be spending the rest of my life. I sit in a chair all day and communicate with the outside world by typing on a keyboard. That is literally all that I have the energy to do.

My house – while admittedly, never a candidate for “Better Homes and Gardens” – is a complete disaster area. I tried to sweep up dog hair the other day (shedding season has started), and I couldn’t even finish the front entry. Sarah, bless her heart, took the broom away and told me to go sit down. It took an hour for me to get back to feeling normal.

I try to cook and have to take frequent breaks in order to finish the simplest of meals. We’re eating a lot more fast food these days.

The dishwasher went out this weekend, so we’re having to do dishes by hand until I can work up enough energy to go out and pick out a new one (the one that we have needs replacing).

Even THINKING wears me out these days – who knew it took energy to do that?

After last week’s storms, my desktop computer won’t turn on, so I’m having to use Paul’s laptop. None of “my” stuff is on here – it’s all on the other computer. We’re going to go look at new computers as well, and I am dreading it, because I know that I’m not going to have the energy to stand for very long. Paul wants to go to Fry’s, and I had to tell him “No”, because the energy it takes to keep my sanity in that place would send me over the edge. I’d be in bed for a week afterward, just trying to recover.

My garden – which has always given me such joy – is a shambles. We had to tear up part of it in order to put in a fence so that Rebecca would have a safe place to play, and nothing has been done to replace what was torn up. I used to be out there every day - moving stones, planning elaborate soaker hose networks to get water where it needed to be, spraying weed killer to keep grass out of the walkways, tending to tomato plants and rosebushes, and at the end of the day sitting back and looking in satisfaction at all that had been accomplished.

It’s been 2 years since I was able to work in my garden. I never realized just how much I used to do. I looked out there yesterday and almost started crying. When I was doing the gardening, I could take my time and see what worked – I know that if someone comes in to do it, I’m going to have to be happy with what they come up with. That’s hard for someone like me. But I don’t have the energy to even put one plant in the ground.

And I can’t sing any more.

I never realized how much energy it takes to sing – how many muscles are used, even when sitting down and singing. I haven’t been to church in over a year because it takes too much energy to hold my body upright for an hour in the pew. I haven’t been able to sing in the church choir for so long – I had to quit going several years ago because of issues with the girls; just as I was getting ready to start back up, this disease hit with a vengeance.

I can’t even sing along with the radio in the car because it robs me of energy that I just don’t have. And when Rebecca wants me to sing along with her movies – something I’ve always loved doing – I have to tell her, “Mommy can’t right now, sweetie – she’s too tired.”

I went for my 6-month checkup yesterday with my doctor, and she wrote me a “prescription” for permanent disability (handicapped) license plates. I guess that’s when the reality of this disease hit.

I’m only 50 years old.

I had PLANS.

We just got the 3 older girls raised. We’ve always known that Rebecca was going to be with us for a long time, but she isn’t going to take us on the emotional roller-coaster ride that ”normal” teenaged girls do. We’re done with that. I’ve seen Sarah get past that ”last” hurdle – it’s all icing on the cake from here on out.

I was going to start cleaning stuff up. I was going to rearrange rooms. I was going to do all of that stuff that I haven’t had time for the past 25 years, because I’ve been so busy raising kids. And now, I have to face the reality that that’s not going to happen.

I have all of my sister’s stuff that we are keeping for my nephew. It’s still in the front entry of our house. I had moved it to the garage, but Paul moved it back into the house to put a car in there. The car’s no longer there. I don’t know how much longer that stuff is going to sit there – I have to leave the bedrooms open for when the kids come home from college.

I’m dreading Sarah’s departure – she’s going to have to pack up all of her stuff before she leaves for college. Given that we are convinced that we’re going to find Jimmy Hoffa under all of the piles of stuff in her room, I’m thinking she’s going to have to start now in order to be cleared out by August.

I want to be able to take care of my parents as they get older. And I’m the only one left to do that. I know that Paul and the girls will step in, but it was something I was looking forward to – they took such good care of me when I was younger, and now I was finally going to have the opportunity to take care of them. Instead, they have to worry about the health of their only remaining child.

Paul and I were looking forward to travelling when Sarah left home. We had plans for what we would be doing after his retirement – it’s still several years away, but we were starting to think about it. We were planning on taking Rebecca to Disney World in a couple of years.

I want to be able to enjoy any grandchildren that we may have, and now I’m having to face the reality that my arms may not have the strength to hold them. I’m not going to be able to take them to the zoo. I won’t have the energy to go to their school functions. I was looking forward to those times.

This disease has robbed me of all of that.

And I’m feeling very sorry for myself today.

I’ll get over it. It won’t take long – it never does. After all, I know people with cancer who don’t know if they are going to live or die. Myasthenia is almost NEVER fatal – I don’t have to worry about that. I know people with Lou Gehrig’s Disease and Alzheimer’s; people who have been paralyzed; people with diagnoses MUCH worse than mine. I am thankful that Myasthenia is ALL that I have; I’m in great health otherwise. So I’ll have my pity party and move on.

But I guess what capped it was the Summer School thing. My child was “too busy” to take care of getting the information on her own. Paul’s philosophy was “You’re home on the computer all day – why can’t you pull together all of the information and send it to her?”

Fair enough. Finally, something I could do to contribute to the family that wouldn’t use up too much precious energy. And we would save some money in the process - she will be home during the summer, so we won’t have to pay extra for room and board. That’s a little less time that Paul would have to work to make extra money – more time that he could spend with us at home.

We discussed all of this when she was here over Spring Break. We agreed that I would get all of the information and forward it to her. So I did.

I went to her school’s website, found their information, then went to the Community College’s website and got their information. I found out what courses would transfer – they had all of that information easily available on both of their websites. I sent all of the information to her, told her what she needed to do on her end – most importantly of all, APPLYING FOR ADMISSION - and was told, “I’ll do it next week”. A week went by. A call went out. “I’m busy this week – I’ll do it next week.” Another call went out a week later.

Registration begins on Friday.

Classes fill up fast; you can’t register until you’ve been accepted for admission.

And in my e-mail inbox last night, a short message from her, with this message from the Community College’s website: “Deadline for applications for Summer Session 2011 is April 1, 2011.”

.

.

.

I love my kids, but I don’t have the energy to keep doing this.

I don’t think my kids understand how much energy is drained from a person, just doing the simple things we all take for granted – I know I didn’t before this diagnosis. It took a lot of time and energy to make my child’s life a little easier by pulling together all of that information. All of the energy that was expended after that to keep having to hound her to get off of her keister and do the ONE THING that I couldn’t do from here, and all of my work was for naught because she couldn’t be bothered to take a few minutes from her schedule to fill out a couple of forms online.

And Paul is livid.

He works SO hard during the week – he works overtime every weekend to make money to help pay for the kids’ college loans and Rebecca’s tuition. He has had to take over all of my chores as well. The man is overwhelmed, but he doesn’t complain. I hate that he has to do all of this extra work. I hate that he has to worry about my health all of the time. I don’t know what I ever did to deserve him. I’m so very, very lucky to have him, and I love him so very, very much.

And right now, I’m the only one around to listen to him vent his frustration about this whole deal and let him go on and on until he’s worked it out of his system. She’s not here to listen to it.

So I’m angry.

And tired.

So very, very tired.

[Stellatum]

Teresa,

Wow, do I ever know what you mean! I'm in the same situation--kids are getting older, and I had plans...time to rethink everything. Yesterday I tried to do the spring clothes change-over, and wore myself out so much that I collapsed at Papa Gino's. We made a big scene. The weakness comes on me pretty suddenly. I walked into the restaurant normally, but I had to be pretty much carried out.

I have a rollator, which is priceless for going out to shop for a computer, etc., because it has a seat. So you roll over to the aisle you're interested in, and then you sit while you look at the shelf. It is excellent for preserving energy--you know and I know how much energy it takes simply to stand while you're looking at something. It's especially good for waiting on line at the register. They are relatively cheap and very light, and fold up small. Type "rollator" into amazon's search box. You need one of these!

Abby

[suev]

Teresa,

I'm so sorry to hear that your MG is advancing. Have you seen your neuro lately? I can't remember what meds you take now, but maybe there are some adjustments that could be made that would help a bit. I sure hope that for you.

I totally understand your need to vent - major adjustments are never easy...and sudden ones even less so. We all have our moments (be they days or weeks) of intense frustration - - and maybe even depression. And I readily admit to being one of the worst when it comes to playing Pollyanna's 'glad game' with MG!

RE: your kids and Sarah's situation:
I am a firm believer in all things happen for a reason - -though we may not recognize (or appreciate) it at the moment. Perhaps this is my naive way of rationalizing (or abdicating) that which I can not control; but I don't think so. Maybe this is Sarah's notice that she needs to step it up a bit. It's her room and her responsibility to get it together - just as it is her education and her life to manage. Actions beget reactions and with both come consequences - - as most adults know, but only through their experiences.

I do hope you feel less despair in the coming days and weeks. Please let us know how you are feeling as you are able.

[DesertFlower]

Teresa,

I am sorry your MG is getting worse. I can relate to everything you say here. It is difficult to deal with not being able to do normal things.

It does help to express ourselves. It helps to put everything down in words. Thank you for sharing this bit of your life with us. I wish you well.

[Smokey56]

Teresa,
Wow, that was a very nice rant young lady!
Trust me there are many of us with MG that know exactly how you feel and I think we have times we need to get that puff of steam out!
I am 54 and was DG about 3 mos ago - was a relief to at least know what was going on and like you stated much better than some things it could have been.
I just came off about 3 days of feeling pretty good and over did it this weekend and am having a spell tonight of weakness and trouble functioning but Oh boy it was worth it! The times you get a reprieve and feel "normal' are sure special and I hope you get a turn soon!
One thing I have done all my life is carry a notebook with a running list of things I want to get done - it helps me focus and feels good when I can check off things as a gauge of accomplishment I guess. Might be worth a try as it gives one a sense of value to contribute - and yes you will not be able to do "all" that you used too but that does not mean you don't provide a wonderful and needed value to your family. I am sure they are hurting too knowing you are and if just the wisdom a mother can preach to her children is all you can do some days its still a victory that many children never get so don't feel like your not important at all times!
I have a very small garden and today I was tending it and yes I had to stop and sit in a swing periodically just to get done what I would have done in a few minutes a couple years ago - but I accepted it and in the end I got most of it taken care of.
Remember, happiness is what you make it and its much easier to achieve when you realize what you need in life vs what you want. You want to do so many physical things that are a challenge - yet you have a family to share your love with that you need!
May the sun shine warmly on you tomorrow Teresa! Best of luck!
Randy

[teresakoch]

Thanks, everyone! I was just letting off some steam that particular day - I had received an e-mail from one of my daughters (who is already in college), and I was just PO'd. And it was a bad day physically, on top of everything else!

I really had been holding everything in up until that point, so it all came out at once. I'm really fine - it was just boiling over that day!

I see my neuro next month, but I'm OK physically; it's just the adjustment that's been hard to wrap my mind around. I'll get through this - I've got a great support system, and lots of people around to help me if I need it.

Thanks for the great ideas, as well!

(I should also add that the "original" of this was a blog posting that was put out there for anyone to read, and most of them DON'T have MG (or any idea what it is). I just wanted to explain to them what MG "feels" like. All of you good folks already know....

It scared one of my cousins so much that she called her mother (my aunt), who called another aunt, and then BOTH of them called my mom, who called me, very concerned. We had a good laugh - I told her I was just whining because I'd had a bad day! She figured as much )