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Dealing with the loss of "normal"

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Unread 12-05-2012, 10:56 AM   #1
Lesmom96
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Default Dealing with the loss of "normal"

I know many people here have been dealing with MG much longer than I have and I am not sure if how I am feeling is part of normal stages of loss or if I need to seek some professional help.

Right now I am very depressed and sad and sometimes I feel angry about what I can't do.

2 1/2 months ago when I was diagnosed, I was relieved to have answers to my symptoms and thought that with treatment I could go back to my active and busy lifestyle. (Denial?) Each and every time I have tried to exercise I have a setback. Without exercise I have put on weight, and this weight gain has made me feel depressed as well. I have tried dieting but I have not been successful. In the past, exercise is what helped me with weight control, stress relief and even control my eating.

Every day is different. Some days I feel pretty good and some days I can't walk more than 100 feet. How do you plan anything? My daughter wants us to go Christmas shopping and I have been putting her off because I have no idea when I will feel good enough to go.

I know I should just feel thankful that I am still getting out of bed every day and still working full time. I know many people with this disease have much worse symptoms so I should be happy it is not worse. My husband insists that nobody is "normal" and life is always changing so I should be able to deal with this change and move on. He wants to help me, but I have no idea how to have him help. He sees me as being active as him (or more so), therefore I must be ok.

Any insight would be appreciated.
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Unread 12-05-2012, 11:24 AM   #2
Stellatum
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Hi. I don't have any answers, but I wanted to sort of confirm some of the things you say. Adjusting to any chronic illness is difficult, but MG presents special challenges because it fluctuates so much. Mine fluctuates during the day, and I also seem to have flare-ups, which last from several days to several weeks or months. So dealing with MG isn't like, for example, learning to walk in deep snow, or on ice, or something; it's like learning to walk on board a ship. You have to deal with the hourly changes in waves, but also the storms. You don't have to just "adjust" once, and then you're adjusted. You have to keep adjusting continually. It's hard!

I went to see a therapist for a while, one who specializes in helping people adjust to chronic illness. I'm not sure how much it helped me. I did get a better big-picture understanding of my life, which was helpful, though not in the ways I expected. I get the idea from your post that your husband's inability to really grasp what you're going through now is greatly affecting you--maybe a therapist who understands could help you be more confident in your own understanding of your experience.

Here's a practical suggestion: get a rollator (wheeled walker with a seat). They're relatively cheap ($65 on Amazon). They're very light, and you can take yours to the mall or department store. Pushing it is easy, and gives you a little support. But the best part is the seat: you can sit and rest while looking at something on the shelves, or while waiting in line, or if you suddenly get too weak. It folds up easily to fit in your car. I also recommend applying for a handicapped parking placard (or whatever system your state uses). I often have no trouble getting from the car to the store--it's back again that's the problem.

I also have something to say about feeling thankful because it could be worse. That is a good mental habit, as far as it goes. But keep in mind that no matter how bad things are, you can always imagine something worse. If you had a disease that gave you two weeks to live--hey, be grateful! You could have only two days! If you had excruciating pain, well, you could have even more excruciating pain. You see what I mean? Gratitude for the things you have is an emotional response we should try to cultivate within reason--but not to the point of pretending that the suffering we have isn't real. It's real. It's valid. Other people's suffering doesn't diminish yours.

I hope that you can find some support, from a therapist or a friend, or even here (the people here are wonderful! And we actually understand what you're going through!).

Abby




Quote:
Originally Posted by Lesmom96 View Post
I know many people here have been dealing with MG much longer than I have and I am not sure if how I am feeling is part of normal stages of loss or if I need to seek some professional help.

Right now I am very depressed and sad and sometimes I feel angry about what I can't do.

2 1/2 months ago when I was diagnosed, I was relieved to have answers to my symptoms and thought that with treatment I could go back to my active and busy lifestyle. (Denial?) Each and every time I have tried to exercise I have a setback. Without exercise I have put on weight, and this weight gain has made me feel depressed as well. I have tried dieting but I have not been successful. In the past, exercise is what helped me with weight control, stress relief and even control my eating.

Every day is different. Some days I feel pretty good and some days I can't walk more than 100 feet. How do you plan anything? My daughter wants us to go Christmas shopping and I have been putting her off because I have no idea when I will feel good enough to go.

I know I should just feel thankful that I am still getting out of bed every day and still working full time. I know many people with this disease have much worse symptoms so I should be happy it is not worse. My husband insists that nobody is "normal" and life is always changing so I should be able to deal with this change and move on. He wants to help me, but I have no idea how to have him help. He sees me as being active as him (or more so), therefore I must be ok.

Any insight would be appreciated.
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Unread 12-05-2012, 12:52 PM   #3
Quandry
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Quote:
Originally Posted by Lesmom96 View Post
I know many people here have been dealing with MG much longer than I have and I am not sure if how I am feeling is part of normal stages of loss or if I need to seek some professional help.

Right now I am very depressed and sad and sometimes I feel angry about what I can't do.

2 1/2 months ago when I was diagnosed, I was relieved to have answers to my symptoms and thought that with treatment I could go back to my active and busy lifestyle. (Denial?) Each and every time I have tried to exercise I have a setback. Without exercise I have put on weight, and this weight gain has made me feel depressed as well. I have tried dieting but I have not been successful. In the past, exercise is what helped me with weight control, stress relief and even control my eating.

Every day is different. Some days I feel pretty good and some days I can't walk more than 100 feet. How do you plan anything? My daughter wants us to go Christmas shopping and I have been putting her off because I have no idea when I will feel good enough to go.
I'm having the weight issues too and exercise just makes me weaker and since I'm getting older the weight is harder to lose. I don't eat much, and I don't eat a bunch of junk food either. I'm trying to figure out how to lose weight but everything I try doesn't work. Right now I'm trying to drink more water to see if that will help. I think my weight issue has to do with inflammation because my c reactive protein is high.

I used to be a person the would "yes" anytime anyone wanted to go anywhere and now I say "no" a lot. I don't like saying no to going anywhere, but the reality is that I can't do a lot of what I used to do and it's very frustrating. Even though the Mestinon is helping me a lot my body is still too weak to do what I used to do. I'm not sure what will happen if my doctor puts me on Imuran. I'm not even sure I want to be on that drug, but I do want to get up and go like I used to. Hmmm....what a great dream...

Right now I'm making "lemonade out of lemons" even though I can't drink it.
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Unread 12-05-2012, 03:45 PM   #4
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Lesmom, I am sorry you are going through all of this. It is a difficult road to travel, but it is possible to find your way. The biggest suggestion I would give is to be easy on yourself! Did you know it takes an average of 18 months for our psyches to process a major event such as diagnosis, loss of loved one or relationship, etc? It is very much a process, and you can expect all kinds of emotions to arise during the transition.

I am not saying that at the end of 18 months you will be A-OK, but in the meantime, try to be gentle, and learn and do whatever you need to do to make yourself feel more empowered. As time goes on, you will probably feel less like you've "been kicked by a mule" and more simply annoyed or even resigned to the particular ways this disease is going to treat you.

I hope this helps. Keep posting!
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Unread 12-05-2012, 05:38 PM   #5
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I saw my neuro yesterday and kinda got nicely put in my place. I was diagnosed about the same time as you and I do feel lucky right now because my treatments are working and he is pleased with my progress. He asked me yesterday how I was feeling and I responded I have improved but I am discouraged because after my first appointment with you I walked out thinking after plasmapheresis and a few weeks of drug therapy I would be back to normal. He went on to tell me then how sick I was and how lucky I was to be making progress and to expect at least a year before I may find normal. He also told me he was surprised I never landed in the hospital because I was that bad when he first saw me.

I went in to this as you know with an attitude that I would not let this get the best of me. I have learned MG fights back when you fight it. I still won't let it win but I guess I have come to terms with somedays will be better than others. What I did yesterday is not a reflection of what I can do today. I also learned my goals and plans for next month or next spring may have to be flexible but it does not mean I can't have goals and plans.

It goes back to the question of what is normal? Is normal functioning at a level where you can do day to day things? Or is normal getting back to where you were before this all started. My ultimate goal is the later but until then each day normal will be adjusted.

As tough as it is at times a positive mind frame can help. At the same time you can't view it with blinders on and ignore that we have MG or that positive attitude can bite you in the rear and turn quickly to depression when something fails. I learned that the hard way when I realized some of my goals were not in my hands.

I am lucky and sometime I feel guilt when I post about my progress here. But I do believe if I had not stumbled about this group that mentally I would not have adjusted to the challenges ahead.

Keep your chin up Les. Adjust as you go and know we are all in this together.
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Unread 12-05-2012, 06:23 PM   #6
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One way that I deal with the whole thing is that I only plan one big thing in a day. If I work, that is pretty much all I do that day. If I go shopping, that is all I plan for that day. If I go to a concert, sing with a group, ride a horse, cook a big dinner, that is all that I do. You have to know your limitations, and just try to do the things that are important. For example, my house is a mess. Oh well..........
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Unread 12-05-2012, 06:41 PM   #7
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I too am struggling with having gained weight and not being able to exercise. Since i have never been a big vege lover, and i have been trying to eat healthier foods, I have started drinking green smoothies (spinach, romaine lettuce, apples, bananas, berries, cabbage, a bit pf ginger, some truvia or honey) before each meal. i do think doiong so is helpful for me So long as i dont eat junk (salty carbs, sweets) in between meals due to being stressed (and seems like the only thing that i can do without getting tired is eat).

I use a blendtec blender and although pricey i have tried less expensive (including ninja one that claims it is as good as blendtec) but they are not the same.
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Unread 12-06-2012, 08:01 AM   #8
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Reading your post, I think you shouldn't be working full time.

One of the problems with MG (as I have said numerous times and see again and again) is that you think you can do more than you really can.

MG patients like healthy people can do 150% of what they can for a limited time.
But, they eventually pay a price.

What was 80% effort for you before is now 150% effort (even if you still doing the same thing or slightly less). The fact that you can do it, doesn't mean that you can sustain doing it.

Even if you are a trained marathon runner, you can't run a marathon every day.
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Unread 12-06-2012, 12:37 PM   #9
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I agree with Alice MD: Reading your post, I think you shouldn't be working full time.

I'm always shocked by MGers with significant symptoms STILL being able to work!

I continued to work for about a year after diagnosis. During that time, I came home EXHAUSTED and was only able to SIT in the recliner..............falling asleep by about 7 PM. I would stumble to bed and not even turn over during the night. Weekends were also spent RESTING.

One of my favorite docs told me to "Listen to my body!" He was 100% right, IMHO. If you don't pay attention, MG will kick you in the BEhind!!
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Unread 12-06-2012, 02:55 PM   #10
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Quote:
Originally Posted by alice md View Post
Reading your post, I think you shouldn't be working full time.
I have been working in education at the university level for the past 2 years and have decided to go back to clinical work as a Physical Therapist. I believe the stress of my current job and the demands of travel, weekends and evenings has been a factor in my symptoms. I do admit that the physical nature of my profession has me worried about returning to full time clinical work but I believe the stress will be much less as well as travel time. I have been managing full time and I would like to stay full time at least until my youngest graduates from high school in 3 and 1/2 years, but I realize that might not be possible.

I appreciate your insight and I will consider this as I make transitional plans.
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