Friend wants to fix me
 

I have this friend that called me today and she told me all the things I needed to do to fix myself. She told me to quit eating fruit, wheat, sugar, and milk products. For some reason she thinks this will heal me. I don't touch any milk products any how, and I don't much crave sugar. I don't have celiac disease so I don't think I should cut out all wheat, and there is no logical reason that I can think of in cutting out fruit. She has some kind of autoimmune problem relating to her stomach and I think that she assumes all autoimmune diseases should be treated equal and with the same type of treatment. I know she is trying to help, but sometimes it's frustrating when people assume that I'll get better by changing my diet. She even suggested I quit taking Mestinon and I explained to her that Mestinon is helping me a lot. I've only recently started taking Mestinon and had to adjust the dose but now I'm doing things that I couldn't do for a long time, but I still have limitations and I need to figure out how far I can push myself.

I am overweight, but it's inflammation. My c reactive protein was high on my last test. I don't eat much at all and when I made an effort at taking an exercise class this past summer, I collapsed and couldn't move my lower body for a few minutes and my legs were extremely wobbly when I finally stood up.

Another friend thinks that I should be more active and can't understand why I'm not. People that know me, know that I've always been active, and now that I'm not they try to push me to do things that aren't best for me.

How do you all handle it when people want to fix you?

There was a recent thread on similar issue with some very good answers, ideas. It had to be within last few months.

Quandry, I have had to bite my lip on many occasions following similar advice from well meaning friends. In the beginning when I didn't understand my condition so well, I would take them up on their advice, mainly because I wanted to be seen to be making an effort. I have even experienced close friends telling me to fight my 'negativity' as everyone feels tired from time to time (!) I've tried every exclusion diet and every supplement and complimentary medicine going and none of them made the slightest bit of difference. I went against my best instincts with exercise, the climax of which was being taken swimming only to collapse in the pool after 2 minutes and have to be pulled out.

The way I deal with it now is to understand that my friends suggestions come from a place of care and a frustration for your situation. People feel helpless when things don't show a marked improvement and only have their own logic to drawn on (that good exercise and good diet make improve your health). MG doesn't behave like this. It's difficult enough for somebody with MG to get their head around, let alone somebody who has no idea what it feels like.

You know your own body better than anyone else and only you will know what will make you better or not. Trust me, in the beginning I felt I needed to prove my point by taking them up on the offer so they could see what the results were. I did quite a lot of damage to myself in the process. Now I just take a deep breath and explain that I've tried it/it didn't work/ or why I don't feel it's appropriate for me. I tell them I appreciate their concern and thoughts and try to explain to them better how it is so they understand more.

It's a learning curve for everyone. We just have to be patient! :hug:

wild_cat

I assume you are still in the early days of your illness.

MG is a very confusing and hard to understand disease and those around us really mean well and want us to do better.

Some of their advise is useful, some of it is annoying, some is counterproductive and some is neither.

As time passes, it will get less bothersome.

Most of those around me no longer give me such advise.

And if they do, it doesn't bother me as much as it did before. I know they mean well, I know they have very little knowledge regarding my illness, my team of physicians etc. and I just politely explain it to them.

As always, well said alice.

I have come to realize that some friends and family will either research my illnesses or will listen to me when I try to explain what I'm going through. Then I have one friend who seems to believe that all I have is a bad cold and I just need to buck it up and have a better attitude. It is obvious that she has never taken a minute to research my illness or listen to me explain what I am going through. But she has breast cancer and has melanoma and that is much worse than what I'm going through.

It's very frustrating to get someone to understand if they think they know it all. I try to distance myself from those people because dealing with my life in my own way is the only thing that matters.

Best of luck dealing with the uneducated.

Becky
Southern Bell
:grouphug:

I tell people that I need to do a lot of very unhealthy things to be healthy. I say it with a big half smile (only one side of my mouth is weak). When I am with family, they tell the visitor I have strange or alien DNA. All of this is accompanied by a long description of the action of acetylcholinesterase inhibition (putting people to sleep often deactivates the part of the brain used for making suggestions. If this isn't what is working, the fact that they are being frozen and sitting in relative darkness probably does it. Generally I hear this on my turf instead of someone else's -- which makes the discussion easier).

The longer they talk, the longer I talk. Every conceivable healthy thing which is suggested is countered by a detailed description and the accompanying science of why I do things the way I do them. Along with some comment about what current health gurus say and how there are a lot of people like me and how the gurus should change their tune.

If the "visitors" or "relatives" or whoever else doesn't "get" it, at least he/she/they aren't making suggestions by the time they leave -- probably at least because they are cold and not as perky in the dark. But sometimes I wonder if they think that because I am so normal and look so good, that they should be resting between activities. :D I have indeed found myself telling people that Mestinon, despite being the essence of the fountain of youth, is really only for ill people.

Thank you all for your comments, they are a great help. I think the Mestinon is making me more sensitive than normal. I have some kind of freaky problem with lactose, (I'm guessing it's related to the rbgh growth hormone). I have the same reaction with milk products that have the rbgh hormone. I've been told that lactose is just a sugar but I wonder if this sugar can still be tainted with the hormone.

I've been having bouts of crying lately and I don't like to cry, but I would rather cry than not breathe. I don't think the liquid form of Mestinon has lactose, but I can't afford to pay full price. I only have to pay a co-pay for the generic Mestinon.

Hi Quandry
 

I hear you. I have also been listening to alot of threads about what to eat and not eat. My doc. wants me glutton and wheat free, plus no dairy. What should I eat besides fruit and veggies on a budget? I have auto immune issues, and PN of some kind. Now I am not sure what to do at all since I can't seem to stay on a budget if I only eat things recommended. I am doing the best I can as I know you are. ginnie

If one more person tells me that if only I'd do more yoga or mediation or think more positively... Or juice, fast, eliminate entire food groups, add in entire food groups, or spin around 10 times in a blue polka dot dress.....

Sometimes I want to jump out of my half closed eyes and rant + rave slurred speech and all. If I only had the energy to get into downward dog. Honestly, most of my friends have a hard time accepting that their high achieving, athletic friend suddenly has a hard time walking around the block or opening her eyes. Those that "get it" have taken the time to research MG and for them I'm grateful.


Though I am new to MG, I am not new to chronic illness. I explain that it is better if they can simply offer support rather than suggestions.

Stay strong!

That I haven't tried yet...

Do you think it could help? ;)

Would it be applicable if you do it in a wheelchair, or will the magic be gone? :stirthepot:

Could just wearing the blue polka dot dress lead to some improvement or do you have to do the entire maneuver ?

Are you aware of any controlled trials comparing between blue polka dots to red ones?

Hi alice
 

Loved your post, it brought a big smile to my face. Poka dots are out, checks are in now, and they are running trials. ginnie

Thanks Ginnie,

That's wonderful news.

I am really looking forward to the results of those trials.

Gives us all a lot of hope.:Dancing-Chilli:

I think it was my thread, since I have the nurse at work who kept trying to sell me her dietary supplements saying they'll cure autoimmune issues.

Needananswer....

I sounded very much like you about 5 years ago. I was diagnosed with MG about 10-12 years ago.. I tried a lot of things and nothing seemed to help. The adjective thin was never used to describe me, but after coming down with MG which caused a reduction in activities I really got heavier. It was a vicious cycle. Now I did try dieting with Atkins and lost some weight, I also tried some supplements also and again overll I was a bit better, but by and large it was negligible. Then after a while, I gave up dieting and gained my weight and I was worse... Then about 2 years ago I had a bad accident. I was cleaning my gutters and the ladder I was on slipped on the deck and it slid away from house. It was kind of like those bugs bunny cartoons where the ladder fell away and then I started to fall right into the ladder. I broke my face (lower jaw, upper jaw, pallette, cheek, eye socket, 5" fracture of skull, destroyed a sinus cavity, had blood leaking into my skull and spinal fluid leaking out.. Then I fell off the ladder onto the deck and did a dbl compound fracture of my right arm.. I was in ICU for a week and in a regular hostpital room for a couple more days, then a rehab hospital for a week. When I was in my hospital room they wanted me to get out of bed I walked to the chair and thought I wouldn't make it. i then got up from chair and walked to bathroom. Then I walked back to chair. These short walks took everything out of me. I realized at that moment i've got to do something. Well, I have a sister who is very very healthy and into eating proper nutrition. Well, I ignored her in the past, but thank god, she was there to help me recover. When I was in rehab hospital, she brought a juicer and fed me juices. (The rehab hospital idea was to serve me stuff like mac and cheese and blend it up since my jaw was wired shut). I couldn't even eat apple sauce with it getting caught in my teeth.

Anyways, after 6 weeks and finally being able to eat solid food, I decided to stay eating healthier. I am on a low carb diet. I eat hardly anything processed, if any. I eat nuts, vegetables (low carb) and some fruits (mostly berries and other low carb fruit). I do eat lots of protein such as in nuts and meats. I also eat lots of fiber (flax meal, hemp protein etc). As far as supplements, I take a ton of them, name a letter, I'm taking that vitamin. I take fish oil, borage oil, flax oil. Also lots of other supplements to reduce inflammation. I used to do IVIG to stregthen me, but I haven't had an IVIG in almost 2 years the last one I had was while still recovering at home after my accident. Since then, I haven't had the need of it.

In short I'm trying to say, I get it and not wanting advice. i tried a lot of things and they didn't work. Then, I tried more of what I did before, more supplements, more vitamins, more exercise, better eating. (Real low carbs) etc. Finally it worked.

So, I realize I may be just like the people you are frustrated with. But I also hope you take this and know maybe you'll be lucky like me and changes to our diet etc can help you.

If you folks want, I'll post the supplements I take daily...

One last thing in full disclosure. .I had been taking cellcept for at least 8 years. And, I still am taking cellcept. However, on the last visit to the dr (about 3 months ago). I asked if I could decrease the amount I take and hopefully not take it anymore. He wasn't crazy about the idea. But, he did say if I continue to stay in my current health, he will lower my medication after my next visit (July next year).

Good luck all

I personally do not think you are. It is very different sharing your own experience and what has helped you (which may or may not help others) and giving advice on something you know very little about.

Like many people here you went through a long journey of learning your own illness and finding what makes it better or worse. You eventually realized the importance of nutrition and life-style on your illness.

It's not like someone healthy coming and telling you that you should exercise more, because you are out of shape.

Pjlla-

I am sorry I didn't see your reply earlier. And you don't sound like the ppl I was frustrated with at all! For one, you have been through it and, secondly, my frustration was primarily surrounding friend's who really chose not to "get" that my life was impacted by this disease despite my uber healthy lifestyle. I've had countless ppl say, "at least it is not MS or cancer" and I do think those types of comparisons are both dangerous and insensitive.

I too have modified my diet substantially and for me my symptoms often become much worse when I eat the wrong things. I tested positive for fructose intolerance and adhering to a low fodmap diet has helped a lot. I've always been a health nut so I too steer clear of processed foods of any sort. I'm also on a lot of supplements and weekly IM b12. They all help greatly.

Anyway, thanks for the feedback. Hope u are feeling well!

I don't know if its the one you're referring to, but I started one a while back when a nurse wanted me to take dietary supplements that are supposed to be a "miracle cure."

I don't know if your friend will wise up, but the nurse since realized I have more going on than a supplement will fix (even though she still insists it would do some good if I'd try it).