So tired of being tired
 

You know..just having one of those days were you hate this disease. Well everyday I do, but Ive learned to cope it with for the most part..

But last night i stayed up pretty late and have been on the go all day long, now just getting a chance to rest. I also went for a 25 minute run today which is going to kick my ***....I got back and had to sit down for my legs could hold me up any longer. When am i going to learn?

My breathing isnt very good, yet better than sometimes. My eye is really bad, and i feel like im going to pass out.

It just kills me, because its my senior year, all my friends are out hanging out, and I cant. I used to be so active. Captain of my soccer team, playing on one of the best club teams, etc. It just kills me to see myself like this, and osmetimes i get depressed about it, and for what? i know its not just going to go away.

I even had my chest cracked open for it, and its still here.

Thanks for letting me vent..

When I get really really down like that I do something completely and utterly cheesy....I go out and perform a random act of kindness...I once put some gas in someone's car who I noticed was paying with change...Bought a dessert for a kid at a restaurant...I don't know why it works, but it puts things right back into perpective...you will also find you breathe a little easier. I hope that helps a little! SMILE!! Hey, and I have the same scar on my chest...Makes me feel like a superhero!!

:grouphug: TYSON :grouphug:

You remind me of my youngest son and sometimes I just want to hug you.

First off, have you spoken to your Dr about the high amount of pred? That has me worried. Second, wear that scar as a badge of honor! You earned it!

Now I really like Chefginny's idea, I never put the two together like she did but she is right, helping someone else will always make you feel better!

I am glad you are running again as I know how important that is to you, I have been doing a lot of driving to Ashville the past couple of days {hubby in hosp again} and I tell you it has worn my muscles out, I had to sit in my car for 10 min after I got home so that I had the strength to carry things in from the car.

We ALL know how you feel and we ALL have moments of depression or saddness but we ALL have each other to turn to.

Feel better young man and try to enjoy your last year of high school, remember your friends will be your friends even if you can't "party" as much as them and well I will tell you what I told my son when he said he wished he had gone to more parties....

Parties are just a place for other kids to talk trash about other kids and thats how rumors start and people get bad reputations.

I'm so sorry you're having such a hard time. I have days like that too. Sometimes I don't know if want to cry or break something or both. And I've got the same scar . . . I don't have any great advice except to say just keep doing what you're doing to help yourself and know that people here know what it's like and we support you. And let yourself have your feelings. They are legitimate and a reaction to something that is truly difficult. Take care.

ChefGinny- That is a really good idea, yet sometimes i dont even have the energy to do so, which is very sad. Yet I go to a school that is based off community service so much gets done through my means.
-Thanks;)

Joanmarie- Thanks:) I dont get alot of support through this as my aunt is so busy w her four kids, and my uncle always working. (mom and dad both alcoholics that live in a different state) So its nice to have someone here for me!
I noticed that your from NC! Where? Im from the research triangle, and being close to UNC has saved my life, i dont know if its worth the time coming here for a doctor if your MG gets out of hand but UNC is amazing.

I have not yet talked to him about the high dose of pred. But I know its not working to the full extent yet, or hardly atall. I think it should be helping more, yet I will call hopefully tomorrow.- I know the scar is a battle wound, that I made it through.

Im glad I can connect w you guys because I dont have anyone here that truely understand how it feels to be under the influence of this disease. I know the partying thing isnt a big deal to me. Its more the sports. I was the jock, and still aspire to be..but doesnt work.

Thanks Joan:)

Cowgirlup- Thanks for your uplifting message, I had sort of lost connection with the feelings for a moment. I know its okay to feel this way, yet I need to get a better grasp on it.

Thanks everyone.

Hi Tyson,

I'm so glad you can come here and vent, its good.

Yes its more than frustrating. I hate that I have to plan ahead for something as simple as New Years eve. I will be spending it home sleeping, because I want to go out to my big sisters place for the weekend, as my big brother will be there with his family. We will be spending the nights watching stars, talking etc etc. So now I have to rest for 2 days to have the energy to drive 30km!!!!!!!!! grr yep its frustrating.
And again, Iam glad you can come here to vent, (I'm glad I can come here and vent, and cry!!)
take care
Kate

Could I leave hugs for everybody in this beautiful forum ?? :hug: x 1,000,000

I felt attracted to this topic as I was going to post one very similar with the same title ! :o

Thinking about you :hug:

Tyson,

I am more worried that you may be on to much pred, remember to much medication has bad effects on MG.

As for where I live, I live in the western part of the state, near App State {ASU} heck we still have a bout 4 inches of snow in our yard from that storm that came through on the 18th..LOL

As for your family support.. WE are now your family as well so remember you can always turn to us.
:grouphug:

Redtail- I know what you mean, family takes alot of energy out, sometimes its not even worth the drive:P. But Sometimes it is. It must be really hard, and im I hope your drive goes well. I also know as i think most of us do, what you mean about the having to rest up for a few days before doing something extravagent. I HATEHATEHATE that. so much. But i do it well, i think...

Please get some rest before your trip, we dont want any crisis..


Joan- I am calling my doctor today to talk to him about it, yet hes on lunch break right now.

Oh yeah, I was in maine when that storm came through, impressive! But, thanks for the new family member:) Im feeling a little better today, yet need to rest alot..
Hope your feeling well.


Hope everyone is feeling as good as their MG will allow them to.

Thanks Tyson, I'm resting as we speak.
My family just happen to be amazing people. Everyday I count my blessings as to how they deal with my mg. My sister is my best friend, and looks after me, takes me shopping to drs appointments all the time,without ever complaining. I have a wonderful sister in law, who when I was first diagnosed often held me while I sobbed in her arms. Thats why I'm hanging out to go out to my big sisters, cos we all get on so well. I know how lucky Iam, and I am always telling my gorgeous family how much I appreciate them!!!
And Joanmarie is right, I consider this as my family here, I often tell you guys things I couldn't tell my biological family, they would worry to much, but you all understand.
Hope you all have a safe and untiring New Year. I'll be going to bed at my usual around 9!!!:D
take care
Kate

Tyson,
Hope you are feeling a little better. I think we all go thru the drudge of feeling like this disease is a never ending battle. Just remember that we are here for you and that you always have a group here to support you with whatever you are going thru. I know that I need this group, as I get down and have to come on here and vent also. Just be thankful for such caring friends that are always here for you! God Bless You and even though this is our first communication, I have been keeping you in my prayers for quite some time now. Take care and keep in touch. If i can help you in any way, feel free to message me and I will try.
God Bless,
Simon

Thanks
 

Redtail- Im glad your resting to the best of your ability, when i can learn to space my resting out i think ill become more at peace with this disease, yet at 17 its pretty hard trying to keep with my friends and all that, and i know i cant.
I hope your new years went well, and you didnt get too tired..


Simon- Thanks alot, i know this place is awesome, and thank you for keeping me in your prayers, that means alot even having not talked to you before. I hope your doing well.

Tyson,

After I wrote my post I thought, man being 17 and haveing mg sucks, I mean REALLY SUCKS. It was bad enough being 30, having decided really what I was going to do with my life, I had just started a vet nurse traineeship, was going to start campdrafting with my horse, yep life was looking sweet. Then bang everything went haywire.
So I can't imagine what its like for you, well maybe a little. Tyson, I hate that you are only 17 and have to deal with this disease, it more than sucks!!
Thinking of you
Kate

Kate,

I dont want you to feel bad for me at all, I hope thats not what you are thinking. But I appreciate the concern. I hate this disease, its one of the worst i feel like a teenager like me could get. For im so active and everything, and it just disables me to do so much. I cant have a job, I cant go out with friends when i want, etc. But its okay, cause i can deal with it for the most part...well not somtimes:) But thats what my therapist is for i suppose.

Even at 30 its really hard! Are you still in training to be a vet nurse? Or did you have to stop? Do you have bad MG? Not that all MG isnt bad, yet bad symptoms?

Hope your doing well.

Hi Tyson,

no I don't feel bad, its just 17 is meant to be the time of your life for going out exploring life, doing fun exciting stuff, ie going out with your mates, in your car!!!

No not in training anymore, don't work either, as having mg is enough for me to cope with at most times.

Iam doing well thanks, I'm home from my sisters, had a great time.

How are you doing??

Im sorry you cant work anymore, i hope that doesnt happen to me, i want to be an anesthiologist, and this better not keep me from my dreams.

It must really suck to have that happen and i hope they find a cure for it soon so you can go back to work and we can all enjoy normals lives once again...it seems like its been forever since ive been normal.

Do you ever get very frustrated when other people complain about having the flu or something...or even a cold, theyre like, OMG THIS SUCKS, SO BAD, ITS THE WORST THING OF MY LIFE.

People like that frustrate me so much, and i call them out on it. I guess they just dont have the experience we do.

Im okay. Its still really hard to wash my hair. my elbow are gets so tired on both sides, today my eye is all the way closed, and my left elbow area is getting very fatigued while typing.

Im going to go to bed early tonight.

I hope your doing well kate.

be well.

Hi Tyson,

I have now had mg for 7 years, and I've surrounded myself with people who understand, Iam very lucky to have a caring family, so they very rarely complain about their illnesses.

I find that when I'm having trouble washing my hair, I use my shower chair, its sooooo nice being able to sit down in the shower, not having to concentrate on standing, not slipping etc etc. I also find hanging my head between my knees helps, as you don't have to hold your arms up as much. I had a great neuro nurse and physio to give me ideas about making life a little easier, although this would have been nice early on, I only started seeing them a couple of years after diagnosis.

Iam paying for a exciting weekend, but I don't mind a couple of resting days, cos I really did enjoy myself,
Hope you are doing ok
take care

7 years. I cant imagine. Im glad that your family is so supportive of it, it really does help. I live w my aunt and uncle, and they have four kids and their own problems, so its really hard to get alot of support, and with MG you need support. Also at school its really hard, but they are pretty good about it, when im tired and all that.

Yeah there is a seat in my shower, and I use that when I get too tired. It does do wonders.

I just want to be the jock again! I know ive stated this so many times. its just the biggest stressor for me. Its the only way to let out steam for me, and its gone. I dont wanna go back into the hospital, i dont want to over do it, but i used to be the captain of two sports. And going from that, to not being able to, it kills me. I dont understand.

Im glad your weekend went well, just get some rest.

Im OK. Nothing more nothing less. It just sucks, and im ready for answers. Its been a month since ive been on pred. nothings happening.


hope your well.

Hi Tyson,

I'm in the same boat as you...I actually had no idea that you had a thymoma, and this could be why it's taking a while for you to get better. It also sorta explains why your symptoms got a bit worse after the surgery. For some reason that happens sometimes when there's a thymoma.

When I had my surgery, I also had to be re-hospitalized for an exacerbation. I met a nurse at the hospital who also had MG due to a thymoma. She had all the same symptoms (bulbar) as me, except she also had ptosis (I don't have this symptom).

Anyway, the year prior, she had her thymus/thymoma removed, and also had to be re-hospitalized two weeks after the surgery, just like us. Our neurologist (we have the same one) started her on Imuran, and one year later, yer symptoms were gone and she was working again.

So there IS hope. I know that things seem rough right now. I'm supposed to be starting Imuran too, but I'm a bit apprehensive. I came across a lady on this site who says that she knows someone who had resistant MG, also with bulbar symptoms, and Imuran helped her immensely. It isn't uncommon for MGers to take a strong immunosuppresant + prednisone + mestinon.

I know it sucks to take so many meds., but maybe you can ask the doc. about this. I also suspect that because you're young, kinda like me, although I'm older (26), your immune system might be 'stronger' than average, and this might be why it's taking a while for the prednisone to kick in. My neurologist actually said that my immune system is probably very strong, but maybe she was just trying to explain things to me in terms I'd understand.

The steroids didn't really start to work for a couple of months for me, and plus I had to take 80mgs. So you could always wait it out for a bit longer, but you could also bring up the possibility of taking another immunosuppresant in the future if things don't improve soon. I don't recommend taking a higher dose of steroids just because the side-effects are brutal, as you know. Adding another drug might be the best choice.

Good luck and sorry things aren't getting better faster. I know the frustration.

BTW, once something starts working well, you don't have to be on it forever. Your receptors might just need a good rest, some time to repair, as Juanita had said in another thread. When that happens, you could try getting off the pills and enjoy some healthy times without meds. That would be a truly happy day! :wink:

ttys!
Nicky

I hear ya kid, and I couldnt agree more.
this all sucks, and IM sorry such a young person like you has to suffer with the same disease an old fart like me has.
I can only offer you one tiny bit of advice, stay focused on everything else in your life that is important and dear to you, its something I try to do, I dont give in and I dont let this crap disease be the center of my life.

Hi Tyson,

Yep I do understand, being so full of life, doing what you love,then its all taken away.
Nicky is right, there is hope. Mg is so different for all of us, my neuro is always shaking his head at me, cos I don't fit "his" description of mg, I don't conform!!!
Nothing can make up for the loss of your life playing sports, being young healthy and 17. But I do agree with Allen, try to stay focused. Its hard, we all feel the loss of something..................... I know these words seem hollow, but I feel for you.
Keep comming and venting here, I know it helps me to talk to you guys, most of you half way around the world, but you are all so caring.
Kate

Nicky- I had no idea you too had a thymoma. It wasnt cancerous was it? They tend not to be.

Thanks for the info on the Thymectomy and gonig through a crisis, or exasturbation after having it done, yet i dont understand why because i had the plasmapheresis done right before surgery I should have been as good as a god, haha.

I know there is hope, and thanks for keeping it in check, yet it seems so far away, i just want to be normal again. Or atleast for my last year of high school. But its okay. Im able to deal with it. Im calling my doc. tomorrow to see what he wants to do with all this medicine, im sick of it not working, i want to try cellcept. Any ideas on the cellcept?

My arms are getting so tired jst sitting here typing, I couldnt hardly drive today, which is new. My arms get too tired, so that i have to switch off and on with each arm. Im about to sleep, and see if im able to go to school tomorrow..I also just choked on some water, so im thinking i might be heading towards a crisis if i dont watch myself.

Thanks for the encouraging words Nick, they really do help as i often dont have anyone to talk to! But you guys are aways here!

I know that when the medicine kicks in, it will be much better, yet waiting for that as you said is very frustrating.

Thanks again.

Kate-

Your neuro should be more supportive, im sorry that your neuro isnt much help in that sense, i wish you could go to mine, i love him for the most part...but he didnt even mention anything about a crisis happening, because he never thought i would come to one, but he messed up on that level because it took me 3 days and choking before i went to the ER. You guys helped me more than he did in that sense, but he is very good.

Again, im sorry about your neuro, im glad you can come here and vent, as we all are, for this is definetly a hard thing to deal with.

I know, allen is all respects is correct. Keeping busy is what needs to happen so that I can keep my mind off of it. Ill try my best. Dont worry, the words arent hollow, they are the truth, and i understand fully. Thanks:)

hope your doing okay.

Allen- Thanks for being supportive, and I completely agree with what you said. And i try very hard to do so, yet sometimes sitting at home while my friends are out, and im just too tired to sleep, or doing anything, it gets hard. But for the most part I dont let this shitty disease rule mine either.

Stay strong.

Hi Tyson,

My thymoma wasn't cancerous, although my surgeon thought that I might need radiation (so maybe it was, sorta?). My oncologist said that I didn't need it, so I went with her advice. I had also come across some information I picked up in Sept. about a conference by WHO that took place in August re. thymomas.

They decided that anyone in stage 1-2, with a type A, AB, and sometimes B (stage 1 only I think), don't require radiation just because the stats. are the same for radiation/no radiation in terms of re-occurence. Something like 90% it wont come back. The odds were in my favour. My tumour was also pretty big, though, and was growing towards my heart like yours. My thymus was also really hyperplastic.

Do you know what type of thymoma you had, and the stage it was in?

Cellcept might be no good. There's an increased risk of cancer, and because we've already sorta had cancer (albeit a very treatable, low-risk type), it would be too risky. My neuro. wants to try Imuran first at least because the risk of cancer isn't as high as cellcept.

About the plasma exchange. Precisely the same thing happened to me, as well as that nurse I had met at the hospital. i had plasmapheresis right before my surgery. Prior to this, I had IViG, and a round of plasmapheresis just prior to that-so lots of infusions/blood exchanges. You'd think I would have been like King Kong after the surgery, but two weeks later, my symptoms were much worse- the same type of symptoms, but more intense.

I then started prednisone, and there wasn't much improvement for a while. In fact, I felt weaker early on, and developed new symptoms (like ptosis very rarely in my left eye, and difficulty swallowing). I also found breathing more labourious.

Sooner than later, though, this started to get better especially with the addition of Mestinon SR in the evenings and mornings, and a plasma exchange here and there. The plasma exchanges work much better for me now than they did pre-op/prednisone, and last much longer. I guess the antibodies are getting lower, and less 'efficient' with the pred. in addition to the exchanges.

Just know that you will get better. It takes time, and some messing around with the meds. a bit, but have faith. At the same time, it's good that you're paying close attention to your symptoms. The choking on liquids has happened to me too. You have to do things very slowly and consciously when you're feeling weak like that, which I know you will. Leaning your head down, with your chin sorta touching your throat helps a lot with the swallowing. It closes off the opening to the windpipe. I also sometimes push on my throat with my fingers, sorta lifting the muscle, when it lags while I'm swallowing. This helps a lot too.

Is your palate weak too (nasal speech)? When that happens to me, that's when eating/drinking becomes very labourious. When things are very difficult, make sure to get to a hospital.