[erinhermes]

Hello all! Hoping this post finds you strong and happy!

I have been dealing with mg since March 6,2006 yet still wonder how exactly to COPE with it.

All of us remember how strong we were, pre mg. How we could take on anything (it felt at least)........

I have very blessed in certain areas. My hubby still loves me. My family is healthy and happy. I am still a wreck.

I know I should be grateful I'm still here with my family, but feel cheated, cheated by my body.

Granted, I am much stronger now. I can walk, talk, breathe. I still miss the old me.

I do know that a lot of us will go into remission. That is what I am praying for daily.

How do you cope with the emotions that having a chronic illness bring?

Erin

[suev]

Hi Erin,

You have been through a lot ... and for a long time, too. And you have been such a great support to so many folks here over the years.

There is no good or comforting answer to your question other than you cope as best you can. You allow yourself to acknowledge every different emotion you experience as being real - - and validate your right to have those emotions - - don't deny them. In many ways, they are your release valve. Try hard to let the negative emotions go for the time being after you have acknowledged them...but be prepared to acknowledge them again as necessary.

Having a chronic illness (at least to me) is a bit like growing old (which I am also doing rapidly!). Things change - sometimes fast, sometimes slowly - but you look back and realize I can't do what I once did...and I want to. The best alternative ...really the only alternative for me...is to do what I can, when I can, at a pace I can. And if I really can't do something I used to do (like for me it would be competitive show jumping horses), I did do it...and I have the memories...and that (unfortunately) will have to suffice.

As my mother aged into her 80's, I remember one day she looked in the mirror and looked at me and said 'Who is that?' pointing at the mirror. I was a bit shocked and scared thinking she was having a stroke or something!! 'What do you mean?' I said. I will always remember her response.

She said that she was trapped in that 'old body', but inside she felt like she did years before.

[teresakoch]

I think most of us learn to live with our "new" body/life. For me, it's been easier to deal with because I already went through a "grieving" process when our youngest was born with Down syndrome. Those first few months were awful, and the next couple of years were tentative - we just didn't know how everything was going to turn out. It's been 11 years now (next week!), and things have settled down.

Everything has turned out to be just fine. We've learned to be more patient, and we've learned to celebrate the tiniest (and most important) things. Most importantly, though, we've learned that we are strong enough to handle whatever life may throw our way. We've learned that there are lots of things that we have no control over - all we can do is equip ourselves to handle situations as they arise. And we know that everything will be OK in the end - things may not turn out the way that we had hoped or planned, but we've learned to make the best of any situation.

I think that those of us who actually have a diagnosis are - in a way - the lucky ones. We have a "name" for our illness, and we can give ourselves permission to take it easy. If we didn't know what was wrong with us, we'd still be pushing ourselves and just getting tireder in the process.

The good thing is that MG does appear to "progress" rather slowly, even after diagnosis. Yes, it sucks to have this condition, but whenever I start to feel sorry for myself, I remind myself that it could be a whole lot worse. I look around and I see people every day with cancer, Lou Gehrig's disease, or some other illness that carries a possible death sentence. I see people who have been paralyzed, had a traumatic brain injury, or whose loved ones - including their children - have died.

When I look at all of the things that I DON'T have, I am reminded that - all things considered - it could be much, much worse. That doesn't mean that I don't have days when I throw myself a great big pity party - I definitely do! I rail against the limitations that my body has placed on me, and I lament all of the things that I planned on doing. And I mourn the fact that I will - realistically - never get to do those things.

Then, I make a list of all of the things that I AM still able to do. My mind still works, and thanks to the Internet, I am able to stay in touch with the world. I can still "talk" to people, even if I never have a chance to meet them in real life. I am able to spend time with my family - and as much as I feel guilty for not being able to do as many things with my kids and my husband as I used to, the fact of the matter is that they would rather have me here with them; they are all glad that I am still around.

I try not to be a burden to them, and I try to be understanding whenever they get frustrated by the extra workload that they have to shoulder because I am unable to do the things that I used to do. Lord knows, they didn't sign up for this any more than I did. But we love each other, and that's the most important thing of all.

I talk to God a lot - I know that not everyone is a believer, but I find great comfort in my faith. I wonder why I was tasked with this particular "cross", but then I am reminded of the story of the man who wanted to "trade" crosses, only to find that his was the smallest one in the room.

One of the things that having a chronic illness like MG does is it gives you the opportunity to stop and smell the roses. I've figured out that one of the reasons that our elders are so wise is precisely because their bodies have "forced" them to be still - much like ours have. You have lots of time to THINK when you can't do anything else....

So for me, I'm using this time to become a wise old lady - it's what I always wanted to be "when I grow up".

We've been given the gift of discovering what is truly important in life. Not everyone is that fortunate.

[jana]

Prayer.....faith that God knows what is best for me. I also take VERY good care of myself.

I dunno, Erin, it seems that attitude plays an important role in how one copes with a chronic disorder/disease. I've always thought YOUR attitude is one of the best I've seen. I'm pretty much an optimist -- every cloud has a silver lining.

[erinhermes]

Thank you, all of you for you wonderful replies!
I, too, rely on lots and lots of prayers! Think my faith is probably the only thing that has kept me sane throughout this ordeal!
Only God knows why on earth we have this. Only he can cure me.
No it is not fun and no I am not happy about having it, but I can help my attitude and the way I perceive things and the way I treat others.
It has been a long, hard road.
There is a light @ the end of the tunnel!
Love,
Erin

[Anacrusis]

and validate your right to have those emotions ..........

[QUOTE=suev;894484]


Hi Erin!

Nice to meet you A while back I read some old posts round here including some of yours and thought to myself, ´She´s an amazing lady with an amazing life´

I really like the responses you got on your post…..maybe there could be a permanent ´sticky´ called ´How do you cope?´ at the top of the page..

Here´s how I cope.......

Not too long ago I lost most of my grasping, pulling, stretching and lifting ability. It got to the point where my hands could type one sentence only, and I stopped reading as I couldn´t turn the pages of a book. My husband ended up changing all the bedsheets for 4 years and doing most of the housework and cooking, and he still loves me too!!!!!

I spent my days being occupied with making the most elaborate day to day survival strategies for my own progressive symptoms and I also spent lots of time solving my friends emotional and practical problems in between fluctuations.

But all that cognitive processing alone unfortunately wasn´t enough. I did not, like suev is saying, ´validate my right to have any emotions´ during the whole of my experience – especially the negative ones. I felt like my body cheated me and it cheated everyone else too…....my husband out of a good wife, my child out of a good mother, and my employer out of a good worker.

I think all along I´ve managed to look around the obstacles in my life and it seems that there is always a blessing in disguise when I´ve really looked hard enough. A sense of humor has also helped me (at times!)

How I cope now is through the actual process of writing....vast amounts of it!!! Scrawled A4 sheets of paper all over the place, and most likely incomprehensible to most!
But in the end for me writing as a process is precisely what helps me cope.



All the best to you and I look forward to read about how you are doing in the near future.

Anacrusis

[teresakoch]

One more thing, Erin - you may not realize it, but in coming here and sharing your experiences over the years as you have, and giving others encouragement like you always do, you have provided hope to so many of us (especially when we first start out on this journey).

We've seen your struggles, and those of others on this forum. Through each of you, we've learned what works for some people, we've seen you get knocked down by this crummy disease, and yet each of you manages somehow to get back up (even if it's only figuratively), dust yourself off, and keep muddling through.

That gives the rest of us an incentive to not give up.

You may not realize it, but that is an incredible gift to give to other people when they think that all hope is lost.

We see that, and we think to ourselves, "Well, if they can do it, so can I."

You have been able to point people in the right direction to get the help that they need, and by doing so, you have given them the strength to keep fighting.

And a couple of years down the road, when somebody new comes along who has just gotten a new diagnosis, then not only are the "old-timers" able to help them out, but the "in-betweeners" who were helped out a couple of years earlier are ALSO able to help out. And they wouldn't be able to do that were it not for you being there for them.

You may never know just how many people you have helped, either through words of advice, or praying for them when they are going through a trying time, or just by still being here (it's a HUGE relief to know that people live with this disease for years and aren't dropping like flies!).

You may not think that you are "doing" much because of your physical limitations.

But the fact is, you do so much simply by giving the rest of us support whenever we need it.

And I'd be willing to bet that the people who actually see you every day feel the same way - your contribution may not be anything tangible, but oftentimes it is the intangibles that stick with people the longest.

[Maiden8680]

I think I was only really depressed once so far (I've had it for about 2 years) over the fact that it's making work very difficult for me... mainly because they don't understand. It's hard to say "my eyes are bothering me" and have off 5 days until my vision goes back to normal, than 2 weeks later get sick (non MG Related) and need more days off. When you don't look sick on the outside it's hard for others to understand. Also since I can't drive (and don't have a boyfriend or anything, hard to find one who is understanding about a major medical condition!) I have to rely on my mom to drive me to places and things and I'm 25 years old. But because my eyes are effected a lot, and I'm tired a lot (not always alert enough to drive) I don't drive. I also (for now) can't live on my own because I can't afford it (and then the problem of how do I get to places comes in again). Honestly, if I could afford it, I'd be in the city right now because I am very much a city girl and my transportation problems would be solved easy peasy.

I've talked to my mom about it, and we've brought it up to my doctor a few times. I'm still relatively "new" at this I guess since I've been effected for 2 years but only been diagnosed for a year now, that all the pieces are still falling together for how to do things. It helps that my parents are understanding (especially my mom, she worked in the medical field and has thyroid & diabetes, so she knows how it is to feel like total crap), and that aren't quick to kick me out or anything like that.

Otherwise, I just keep going through my daily life but add more resting in between. I still go out with friends when I can, and I still travel, I just make sure I maybe add an extra day of rest, and extra resting time within those traveling days so I don't wear myself out completely.

Overall though, I know I have it a lot easier than some MG and other illness patience, so I try to tell myself "this could be MUCH worse, you can deal with this". My best friend has Lupus, I saw her for the first time since she's been diagnosed (a year now) and man...she absolutely has it worse than me...

[teresakoch]

You hit the nail on the head about "looking" just fine - it's hard for others to understand how sick we are, and there is absolutely no way to describe it in a way that those who don't have it can fully appreciate.

It's good that you have supportive parents - speaking as a mom, I know that they want to make sure that you are taken care of. You might be able to qualify for some government disability services, which might make it easier for you to get around. It's a tough call - being at home means that there will be someone around to keep an eye on you and make sure that you don't hit a crisis.

I think it must be harder to get this diagnosis when you are younger - you want to be able to get out and do everything that everyone else your age is doing, but your body betrays you. It sounds like you have a good attitude, and that is so important -

[whirlwind123]

I work full time with the devlopmentally disabled I also have a husband that is very visually disabled. When I see these young people at work in wheel chairs and they are really stuck in their bodies they cannot move , some are very much with it and it is amazing to me that they come in with smiles are their faces . I have one favorite and he is an amazing young man., his body is a wreck , really can't move anything his arms very little, but he comes in and makes me laugh every day and I make him laugh. At first when I got this disease I was hysterical , I was always a person with lots of stamina., now ugh!!!!! I get angry because I am 60 but feel 80., I have just developed rhumetoid arthritis also. Erin, you were one of the first people on this board that amazed me., how you cope and what you went thru...you were an inspiration and always will be. I just wish more people would understand you don't have to look like hell in order to feel like hell. But sometimes even my own family forgets. I guess we take one day at a time and keep pushing., I know it is hard for me to work full time, but I need to work too more years to get a small pension., but that is better than none.

Originally Posted by teresakoch

You hit the nail on the head about "looking" just fine - it's hard for others to understand how sick we are, and there is absolutely no way to describe it in a way that those who don't have it can fully appreciate.

It's good that you have supportive parents - speaking as a mom, I know that they want to make sure that you are taken care of. You might be able to qualify for some government disability services, which might make it easier for you to get around. It's a tough call - being at home means that there will be someone around to keep an eye on you and make sure that you don't hit a crisis.

I think it must be harder to get this diagnosis when you are younger - you want to be able to get out and do everything that everyone else your age is doing, but your body betrays you. It sounds like you have a good attitude, and that is so important -