Dealing w/ Friends' Dubious Advice?

I cannot imagine how you resisted the pressure, since I know that doctors can be big bullies if anyone question their authority/decisions even in small things, let alone in such a major issue.

In some small way I can relate to your feelings, because a while ago I had a little cancer scare, and frighten as I was, I've made up my mind, that I will not take any punishing treatments and let the nature take it's course. I just knew I could not handle any more s/effects from difficult treatments, and people messing about with my body. I have been worn out by lifetime of battles because of M.

So I made up my mind that the quality of life  would take the preference over the "quantity" in terms of  any extra years a treatment would give me.
But frankly I don't know how I would handle all the pressure and doctors arguments, in reality if I had to make this decision. So, this is why I think you are extremely brave.
(BTW I am OK, thank God, the scare was premature.)

You have been already rewarded by several good years, but please leave yourself some room to re-think your position at any time, if for whatever reason you might feel you need to.
It is your body, and it is only up to you to decide what treatments you want, and when. Because of this, you also have the right to change your mind, at any time.

I think we also need to be very assertive when we see our doctors about our M, especially since we get so much useful up to date information here from each other, and from various links suggested by others about all issues connected with M.

We do not always have to do, what the doctors suggest. I don't always do as I am told, but at times I had to go along with their suggestions when it makes sense to me and benefited from it. WE need to show them that we keep an open mind before saying NO to them. It is a fine balance at times.

BUt what you did Brenda, is in a different class. Amazing.
Just, make sure you are taking good care of yourself.

I am glad you have joined us here, Brenda. It is always good to read your posts, even if they are heartbreakingly sad at times.

Brenda and Kem, peace to you as well.  Sorry if either if you felt dragged into anything.
Kate obviously has issues and prefers to kick up trouble.

I've recently read an interesting article. While most people who come here are honestly looking for helpful advice and information, moral support, and the occasional vent, there are apparently some people who just like to complain and get angry if anyone contradicts anything they say.  These people  suffer from low self esteem.  They only want people to confirm how lousy everything is. (Read below link).  We may have run into this.

http://t.today.com/health/stop-cheering-me-some-people-dont-want-hear-it-1D79852039

This is unfortunate because none of us come here for more stress in our lives. I agree with Mini, the norm for this group has been much more supportive and positive.  Let's hope that can prevail.

Migrainegirl, you can't help yourself but to continue to stir the pot with your " holier than thou" attitude. Keep speaking. You only keep telling on yourself. Funny how none of this is your fault or anyone elses. Typical...

It is really good to see you back in the thread, Migrainegirl. After all this thread is about Brenda. I am sad that it has all veered off the subject. The link is interesting.

I think at times, when things get really tough, we all experience those dark, negative moods. At other times we battle on, and try to get on with things the best we can, telling ourselves that things are not so bad.  This is how it is, I think, for most of us.

It is difficult to remain  completely "sane" all the time, when your head (and other problems) drive you mad. The feelings get out of control from time to time. I think, we all understand that.

But the most important thing is to try not to offend, and upset other people here, because we are all vulnerable, and worn out from battling M all the time.

Brenda, I am sorry I forgot to mention that the friend who is affected by breast cancer as well as M, is not on this forum. She is also taking care of a disabled relative, so she is very, very busy (and in pain). But I will ask her to read your thread. I am sure she will be very impressed by your decision to fight doctors and family, concerning your treatment, and your right to refuse it.

Mini, thanks for the kind reply.

Platypus, I totally agree with you that people simply cannot wrap their minds around what it's like to have a chronic illness or to be in chronic pain. I once asked a friend if she could relate to it, and she was honest enough to admit that since she's never suffered from a chronic illness, she really can't relate. I appreciated her honesty.

In general: I also find that it's extremely difficult for people to wrap their minds around the idea of CONSTANT and SEVERE migraine. Even many migraineurs cannot imagine what it's like, and I don't blame them.

Before I went into constant migraine (3.5 years now) I didn't really think that a migraine could be BOTH constant and severe. I certainly never doubted that people were telling the truth when they posted about constant headache, but I've also read in the literature that most cases of CDH involve a constant headache, with migrainous episodes on top of that. So I knew that people genuinely were suffering, but I thought that people with CDH had some days that were 'better' or 'less painful' than others. (I think this is the case with true CDH?)

Even though I was having marathon severe status migraine that would last for 4 solid months, my neuros told me that even status migraine should 'end' eventually. Often I'd feel like my migraine would last FOREVER, but after 4 months or so, it would suddenly END. I was told by neuros that the only cure for me is 'time'. Told me I'm a 'very unusual case'.

After enduring this pattern for several years (sometimes going as long as 6 months totally pain-free) I relied on the 'fact' that status migraine SHOULD 'end' eventually. I never took my 'breaks' from the pain for granted, but I did believe I'd always get 'breaks'. I was told by so many neuros that it's freakishly 'rare' for people to go into status migraine that never ends, so I hoped and prayed it wouldn't ever happen to me.

(I cannot even believe that I used to be able to take vacations! Migraine cancelled some of those 'would be' vacations, though. Wish I'd travelled more when I had the chance. Was only in my 30s when migraine went constant.)

Friends have mentioned, "Look, you got through college with migraines' and "It's going to be really tough for you to find a job, but I guess try to find something that you can do on your own time, when you don't have a migraine. Then when you get a migraine, you can just rest".

I know they're trying to help, but they don't seem to understand that I ALWAYS have a migraine NOW (for past 3.5 YEARS). I never could have gotten through college in a million years without my pain-free 'breaks'. (I'd attend college while on pain-free 'breaks', then as soon as Finals were over I'd go into yet another MONTHS-long migraine). I also hoped I could become self-employed and do something on my own time, working around my prolonged migraine attacks.

Now that migraine has gone constant, it's a whole new ballgame. A game I can't play. Working, dating, seeing friends, and ever feeling 'normal' have become things of the past. It all seems like another life; like I was almost a different person. Constant pain is so severe I can barely drag myself out of the house to go grocery shopping, to pharmacy, or to doctor's appointments.

My short-term memory is not good when in migraine. I have an excellent memory when NOT in migraine, but I guess those days are gone. I literally forget things from one minute to the next; it's really bad. Sometimes I'll forget whether or not I took my meds, even if just a minute ago. I know this could be potentially dangerous, and I do worry.

I wouldn't hire myself, knowing what I know. I need to write everything down. If someone says a phone number over the phone, I ask them to please repeat it twice, then I say it back. I forget elements of conversations, from one day to the next. It's scary and it's embarrassing. It's all part of chronic migraine disease, one of the most debilitating conditions I can imagine.

That's just my story; thanks for letting me vent. I know others here have it so difficult, too. I hope you all find something that helps at least a bit! I'm going through a terrible time in my life, so please everyone be nice, OK? Everyone here has been nice to me; no complaints here. I just wanted to say that I'm feeling pretty vulnerable right now, for many reasons.

Best wishes and good luck! Happy 4th of July!

Dear Brenda,
Your story is heart-breaking, all aspects of it. But in all this, I see you as a person of immense courage and clarity of mind (despite constant memory lapses, which sound very familiar BTW).

The way you explain your feelings and your history in such articulate terms, makes it even more so, because we can all see how much you could achieve, if not for this nasty condition.
You write so well, that it has occurred to me that maybe, just maybe, you could try to write a book about  your life with M.
Writing is about the only thing, that we can do at home when we have some better moments (even if your don't have those breaks any more).

Besides, there is one more thing about writing: it can be terribly therapeutic in itself. You have computer (obviously) you have great ability with words, so why not consider it.

I know, it is not an easy thing to do, but if you write from your heart, the truth, the whole truth starting with  how badly you were punished (because this is what it was) by you cruel father for being ill, giving the  reader a full story, stage by stage, you never know what you might be able to produce.  Your story is so tragic, I cannot see that anyone reading it, could not be deeply moved.

There are millions of M sufferers in the world.
WE all look for answers, for similar stories, to confirm that we are not alone. If only one person in a thousands bought your book, not only this would be helpful to them, but it might give you a source of an additional income.

It is good to feel that we are doing something creative, that we have a project on the go.

You can do it slowly, only when you feel like it. No pressure. Then see what happens. Just an idea.

In meantime it is good to read you, so please keep venting here whenever you feel like it.
Mini

I have no talent for writing at all but can recognize good writing and Mini is correct, you do have a talent Brenda.

Brenda, I also agree that you have a talent for writing.

You could start by copying and pasting, into a word processing program, the posts (from several threads) on this forum, where you relate parts of your life story. Then you could edit out duplicated portions, and put what remains in the most readable order and form; fleshing the story out with more details, and further experiences.

If writing a book, or even a booklet, appears to be too daunting a task for you; then you might want to try starting out with writing a magazine article, or series of magazine articles, which could later be expanded into a booklet or book.

Sometimes it has been very annoying listening to people give me unsolicited advice. I know many people want to help, but some people just act so arrogant and are really on a power trip. It is like they think they are smarter and more knowledgable than everyone else, despite the fact that they haven´t put any time or effort into researching the health condition. When you respectfully disagree with them they get angry or defensive and try to imply that I don´t really want to get better. It´s frustrating. There is a phrase in Spanish that translates to "Shoemaker to your shoes." It means only give advice in areas of your expertise. We should have a phrase like that for English. However, many people do understand my health condition and have been very nice and empathic towards me. Many others haven´t though. I think that maybe more time should be spent in grade school and high school teaching empathy. Thanks for reading. Ciao.  

I am also replying to Brenda and the initial post in this thread...

I understand your frustrations and as others have said, we've all been on the receiving end of unsolicited advice. Often, I have to keep myself from laughing when someone recommends excedrin migraine or asks if I've heard of imitrex. Most recently, I met a women who was adamant about green apples, "Eat green apples, they will cure you!" I always just politely tell them thank you, and that I have tried/will try their suggestion. End of conversation, I never see them again, we are all happy.

It does get annoying, but I'd rather have someone attempting to offer helpful advice, than telling me that migraines are not serious and I should go get a job.

As far as some of the things you've mentioned, I think the reason people mention these things is that sometime in their life, they have met someone else with migraines who has been helped by them. I, for one, use tiger balm during a severe attack on my temples and back of my neck, just to ease the pain. It makes a 7+ headache much more bearable, and can be just the thing I need to fall asleep. No, not a cure, but helpful, yes.

Another one: exercise. Not for everyone, but I have found that daily exercise has really brought down the M intensity, sometimes giving me hours of relief, in addition to the bonus of endorphins, more energy, better appetite, etc. I have even forced myself to workout in the midst of a 7+ attack a couple times and the headaches went away! This doesn't work every time, and exercising with migraine is daunting, but I just wanted to verify a few of the crazy suggestions I read in your posts.

It is true that sometimes some of the crazy suggestions do help some of us to at least deal a bit better with these things. I did find a massage therapist that could sometimes make a 7+ migraine go away with head and neck massage. Sadly she moved away. Too bad she didn't live next door lol

Another piece of advice that you are free to ignore, but if massage helped you in any way, Kem1, I often use TENS appliance, and find it extremely effective in relaxing muscular tension in neck/shoulder area.
It was a present from my son in law, and it took me a while to know how to use it to the best advantage, but it definitely lowers the level of pain and tension.  IT really helps me a lot. And the best thing is it does not have any s/effects.

I also use it on my back, and my daughter in law had it applied in hospital during labour, and was very pleased with the results.

In case you have not heard about it, TENS it is a small device which uses light electric currents (which you can easily regulate to your own preference and level of intensity). You attach it to the area where you need relief, with some small sticky pads (which need occasional replacement).
I had mine for years, and years. I cannot guarantee that it  will help you of course, but it is not very expensive, so might be worth trying.

Thanks Mini, a Tens unit has been in the back of my mind for a while now and since I have back issues as well it just might be a good buy for me. Going to check into it.   I found one on Amazon that has a lot of good reviews so have ordered it. Will let you know how it goes.