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.

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

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.

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!

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.

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..........

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.

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.

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!! ;)

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.

Lesmon, I am so sorry you are going through this. I myself am also very depressed. Having all the symptoms of MG and still no diagnosis or treatment yet. I agree with you that the worst problem is the not knowing when or where the symptoms will suddenly get worse. Last week I was at work and felt good all morning. Then at lunch while reading the news on my computer my head suddenly dropped. When I tried to stand up after lunch, I could hardly move my legs. That is the worse I have ever been.

Jana, your situation sounds exactly like mine now. I go in to work early and get out early so sometimes I am even asleep in the recliner by 5 pm. Often, I am so exhausted, I have to fall asleep for a few hours so I have enough strength to climb the stairs to go to bed. I keep thinking "How long can I keep this up?" I have 6 years until I can take early retirement. But I am too afraid of the financial consequences to think about disability and they have not even definitively diagnosed MG yet. I do not want to lose my home.

kathie

The loss of my normal happened extraordinarily slowly, which in combination with the following:

1) a doctor who saw negative tests as a good enough reason for a psychosomatic diagnosis
2) my own expectations of someone my age
3) my own insecurity
4) gradual progression

....all allowed me to put something abnormal down to being normal on a regular basis. In addition I was so preoccupied with devising constantly evolving new physical strategizing techniques that I forgot to actually look at what was and wasn´t normal at the time. I guess more dramatic onsets and a clear diagnosis would hit home harder and faster.

By my worst peak I had made changes to my program which included conducting my students less and less, and when I did, it was from a seated position in my chair with my elbows literally pressed into my stomach! I was not able to play piano for two years either. That was not normal and nor did I know if I would ever be able to do those things again. However, the third year motor skills gradually began returning but then I was too afraid to start playing again in case it was that that was causing the weakness. Later when food started to get stuck in the esophagus and saliva had started going down the wrong way I realized that my muscular weakness had nothing whatsoever to do with my piano playing!


3 things really helped me at that time were.....

Number one:
A good friend at work who by simply being a little observant knew more than my previous doctor about MG.
She was of the greatest support whilst my ordinary´normal´ was slipping through my fingers, and was also there when things started to get better a few years later, as surprisingly I needed support then too.

Number two:
A husband who didn´t understand the reasons but knew he had to take more than his fair share for a number of years. It was a hard period for all with survival instincts at work and discussions to a minimum in our house. I will always be grateful to my husband for doing and not questioning.

Number three:
A couple of employers who stood by me all the way, to whom I am eternally grateful. They understood without any hesitation whatsoever that my mind was quite alert but my body was not.

Number four (came later):
Reading about other people´s experience with normal/abnormal and getting advice on forums really helped to both find and cope with my place in the constantly shifting myasthenic spectrum.


I think that had my symptoms continued further in the same predictable progressive pattern they had started with, I would most definitely have looked for professional help to deal with them. MG sounds like a mean disease – one minute it´s nice, the next it´s nasty. The total impact of those fluctuations on your own mental and physical well being plus the confusing effect it has on our loved ones and others around us is enough to warrant having a really great friend by your side and/or some regular professional help for all involved.

The good thing is, you do see more and more people writing about their remissions on various forums. Those are not impossible.

In the meanwhile my absolute number one choice (after finding a good neuro & treatment plan) during a time like this is spending time with a good consistent dependable best friend/partner/counsellor in life whilst trying to tame the wild fluctuations of an unpredictable myasthenic beast and keep it´s negative effects on mental and emotional equilibrium at bay.


Anacrusis

After more than 30 years since I was diagnosed, here is my advice for you. Tell people. Everyone knows that if I make plans, I may not keep them. When I do make plans, I rest the day before and at least the day after - sometimes I need more than 1 day to recuperate. The depression never goes away. Low carb diets are the best and worked for me until I started taking Imuran. (Low carb for me means lots of greens, lean meats, no bread or starch) Then I developed a problem absoring protein so I was starving while eating just protein. I try liquid protein and that helps but not enough to diet. The weight issue is terrible but what can you do - you can't stop eating. The depression never goes away but it is best to accept that your life is different and set new parameters for everything. Even the fun things like vacations change. My husband, Mr. Couch Potato, doesn't care that I don't do much. My house is always a mess - after all when I have to choose between fixing dinner or cleaning, I cook. Somedays it is all I can do to get out of bed and take a shower. Life is too short to worry about cleaning. Tell people - they really will understand. And don't be brave - tell them how bad it is.

I was just thinking-why is it so important for us to be "normal" and what is "normal" any how?

Every neurologist I met over the years promised me (initially) that with his treatment I will have significant improvement and be able to lead a normal life.

Even my current neurologist keeps on telling me that he is optimistic that with time I will do much better. (although he is cautious not to promise too much and when I ask him what he means by "better" he diplomatically changes the subject).

When neurologists keep on saying that with MG you can lead a normal life they convey a very optimistic message (which is great) which gives much hope, but also a very grim message which is- Life is not worth living if you can't live a normal life.

I am just thinking what if the neurologist who took care of me in the early days of my illness said the truth- "You have severe MG, I hope that with this treatment you will do much better and be able to resume your normal life, but there is also the possibility that this will not happen and we will have to think together of what to do, so that you will be able to lead a reasonably productive life."

Instead of- "we are going to fight this together. Every MG patient today fully recovers from this illness sooner or later. There is no reason why you should not be able to do everything".

What if my physicians over the years did everything to treat me, give me proper supportive care and help me and my family deal with the reality instead of what they did (which was the exact opposite).

Many neurologists (and other physicians) think that if they can't make the patient's illness disappear, they have failed. Many patients think that dealing with an illness means fighting against it and not "succumbing" to it.

Society has double standards regarding disability. Both physicians and patients are effected by them.

I never wanted to be "normal". I never wanted to be like everybody else. I wanted to be unique. I wanted to have my own thoughts and beliefs, philosophy of life. I wanted to be me, not what others expected me to be.

Once I became ill, I had to change my desires. I had to want to be "normal". But was is "normal"? Do I want to be like that neurologist who told me he too is tired of making rounds each day? Do I want to be like the neurologist who thought his conference was more important than a very ill patient? Do I want to be like the pulmonologist who didn't even bother to take out the memory card out of my respirator to see that what he thought was "impossible" actually happened and was registered on it?

The message many physician covey to their patients is that you either recover or there is nothing I can do for you. Very few physicians see it as their role to help their patients adjust to their illness.
In reality full recovery with no sequalae is rare. Modern medicine has turned many fatal diseases into a chronic illness. Modern medicine has saved many lives at the price of significant morbidity. Physicians are trained to diagnose, treat and cure. They are not trained in the art of healing.

I do not know. Possibly there are patients with MG who fully recover from their illness and lead a completely normal life with no significant medication side-effects. I do know that there are many who do not. Many who have to learn and teach those around them how to live with this illness. Many who are constantly given the illusion that this is not so.

It is very nice when you are initially diagnosed with MG to hear that it is the best autoimmune disease, that it easy to treat, that the vast majority of the patients lead a completely normal life.

It is an enormous burden on you and those around you to keep on hearing it, once it is obviously clear that at least for you it is not so.
It makes it nearly impossible for you and for them to adjust to the reality of your life. It creates unrealistic expectations. It significantly curtails your ability to receive proper supportive care.

It's like telling someone standing in the middle of a battlefield, with bullets going over his head that this is not a battlefield, but a nice meadow and those are not bullets but pretty butterflies.

How can you (and those around you) adjust to something you are constantly told doesn't even exist?

LesMom, I'm sorry but I've forgotten your "real" name. ;)

You guys are awesome! These are such thoughtful, useful and supportive responses. This topic is so hard to deal with too.

I wanted to respond after you posted but my MG has not been nice.

I said in my book that, "I wish I could get a restraining order against my MG because it beats up on me every day." Having a disease like this does feel like you are constantly abused. It hardly ever leaves you alone. Which is why coping skills are so important to surviving every day.

Have you seen a psychologist to discuss how you're feeling? I had great coping skills but I needed more. I'm really grateful I went to see one. When someone's life is "normal," with few challenges, they may not need hardly any coping skills. MG has taken nearly everything I love and love to do, so working on making my life the best it can be has been my top priority lately.

Sure, it helps to do the old "It could be worse," but MG continues to change it's intention daily, so it is often worse. You can't really ignore MG by comparing your life to someone else's. It's not useful for long periods of time.

It does help to be philosophical, in that you can realize who you are - your unique soul - is special no matter what's going on with your body. But that only goes so far some days.

The things that really help me every day are:

Focusing on what I CAN do.
Not beating myself up when I can't.
Making my environment easy and fun to be in.
Listening to music, like when I need to gear up to do dishes
Talking to people (even if it's in an email) who fully accept and support me.
Learning something new.
Doing the things I like to do (writing/designing) before I do those I have to do.
Avoiding the news and other stressful things. I can't change it or do anything about it.
Journaling helps to purge frustration.
Filling your air with a scent you like helps too (aromatherapy).
Eating organic, whole food to keep my immune system as healthy as it can be.
Getting enough sleep, whenever I need it.
Helping others whenever I can.
Going outside, getting fresh air and just soaking nature in.
Looking at web cams from around the world, which takes little effort and is really interesting.

There are so many other things that you can do to create a world that you can be happy in, even when you're not.

And when none of that - and more - doesn't work, I cry or scream or throw a little "soft ball" I have and allow myself to feel whatever the heck I'm feeling.

Drugs do help some people but I don't think any drug would change my intellect enough for me to revel in my MG circumstances. :cool:

This is a hard disease. It's unpredictable and relentless. And, yeah, somedays I tell it, as Rach often says, to bugger off. I will never "like" it. But I've come to a place where I can mostly be okay with it. Who in their right mind would really like this stupid disease?!! :Wave-Hello: "Hi, MG, thanks soooo much for coming into my life."

I've had MG my entire life. I sometimes wonder if I was better off not knowing what it was. I only got diagnosed at age 42. Before that, I was always adjusting what I did without knowing why I couldn't do what I wanted to do. But it kept getting worse and I had to know. At least now I know the ways I can work around the disease to have the best life I can.

Just be yourself. Don't let this disease take away what makes you you. And you might be able to find new things to do that could get your mind off of it. I think everyone has something they can do where everything else disappears while they do it. For me it's creativity. I hope you'll figure out the best balance you can to be sort of kind of okay with having MG.

:hug:
Annie

I almost forgot the most important thing: LOVE. :Heart:

I was searching posts on plasmapharesis trying to learn what to expect when I found an old posts by myself that haunted me and needed to respond. I know I am probably violating some forum ettiquette. But the post of what I dreaded only 3 months ago has come to pass. I do not think I can continue working until I get some relief from MG treatment. The doctor agrees and I will be going out on disability for a while. I hope not permanently. I guess my body could take the pace for a while but MG has wore me down and I need to take a rest. Shortness of breath is the main concern. It is happening more often with less physical exertion and I cannot risk it anymore.

kathie

Yes. And they must STOP doing this! This is the reason why I still have troubles adjusting and coping. I don't want other to know I have MG, because, just look it up: it's as easy as a nosebleed. Even some with MG theirselves tell me, well...MG aint that bad, there's treatment and all, and it isn't like rheumatism, cancer or MS.

They all keep saying this. Even some docs! I've said this many times, but I keep saying it: I have had all (still have) all the above. And you can't compare them! MG is truly my most difficult and dibilitating disease. They can't believe it becauce it isn't lifethreathening like cancer or doesn't create permanent damage.

The best auto immune disease, pfff, that's what they told me indeed. I truly hate it, and it doesn't make me feel "positive" or anything.

---------------------//----------------------------------

Anyway, lesmom, back to you: you will learn to deal with it. If you make an appointment and at that time it seems like you can't make it, well that's just too bad but no harm done. I think everyone will understand you try your best but sometimes you just have to listen to your body.
Just keep making nice appointments, like christmas shopping, going to a theatre or cinema. You will learn to listen to your body, and exactly what it is you have to do (and have to don't) a few days before that appointment. Maybe you can use a wheelchair?
And you have something to look forward too!

If you feel it's just too much, don't hesitate and call it off. Everyone will understand, and everyone will rather have you feeling good than you feeling awful because you still went. And if they don't understand, it's their problem :)

Anyway, you have MG, and there is no way you can compare yourself with a healthy person. Even if you seem to be functioning like any other, like your husband sees you, it doesn't mean it doesn't cost you more energy. It doesnt mean you have to lay down before you're tired. But just listen to your body, not to what your mind is saying to you ("I am young so I must be able to do this!")

I don't know if you need professional help or not. Some find it beneficial, others don't. You can try and see where it goes. You only have this diagnosis for a very short while, it's not that weird you have all kinds of emotions!
I was relieved ("Im not crazy"), angry ("Im too young and I had plans"), depressed ("whyyyyyyyyyyyy") and ashamed ("Im not gonna go because I dont want them to see my wheelchair") in the first 4 months :p never been to a therapist, because that just doesn't work for me.

However, there's one thing that concerns me: you talk about your weightgain and control your eating. Maybe it's an idea to make an appointment with a dietitian?

What is normal anyway? It sounds very boring to me!
I always concidered "normal" a dirty word.