Loneliness. Do you find that Migraine is making you feel lonely...

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Loneliness. Do you find that Migraine is making you feel lonely...

Post  Mini on Wed Jun 11, 2014 5:02 am

I was talking to a recently widowed friend about how to cope with loneliness. Suddenly I found myself saying to her that I have so much practice in loneliness, that being alone/lonely does not really  trouble me any more, because I have so much practice feeling lonely.

This is because suffering with M from an early childhood  when no one understood how I felt, and I was often ridiculed for being "difficult" when I was feeling sick, or in great pain and wanted desperately to be  left out from many normal family activities, I had to learn to cope with so much on my own. I always felt I was on my own. And I was, no matter how many loving people I had around me, and how much care and consideration I was given in other ways.

This was also true once I grew up, and even now decades later, my brother still laughs at me and calls me attention seeker, when I  cannot eat something, or cannot stand noisy/bright surroundings etc. This hurts me as much, as it always did.
I have been through much emotional pain because of such comments,  that I got use to feeling lonely, I had to. I knew I have to deal with things, that no one will help in the end, even when I was with people who, in their own mind love me.

I don't know if my explanations makes any sense, and I think my friend was a little shocked at first, to compare her kind of loneliness, with the kind of loneliness that I was talking about.
But we are good friends, so I was able to explain to her that what I meant: that M teaches you, early on, how to cope with any kind of loneliness it. When you are in pain, any pain, you are always alone.
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Re: Loneliness. Do you find that Migraine is making you feel lonely...

Post  Platypus on Wed Jun 11, 2014 11:41 pm

Yes it's true of all chronic illness, it is very isolating. I live alone and I can go for weeks w/ no social interaction other than business transactions at the store or on the phone (which don't count). Then we often find our interactions w/ able people are painful because we live in a world they don't understand.

I'm used to it too.
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Re: Loneliness. Do you find that Migraine is making you feel lonely...

Post  Mini on Thu Jun 12, 2014 4:37 am

Thank you for responding, I was beginning to feel that once again, I am the only one feeling lonely, courtesy of M.
It is not even the pain itself, it is the fact that it isolates you from others, both physically and emotionally.
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Re: Loneliness. Do you find that Migraine is making you feel lonely...

Post  Kem10 on Thu Jun 12, 2014 6:04 am

You are not alone Mini, I have had irritable bowel since early childhood and migraines since a teen and it does indeed isolate a person, almost no one understands why you need to stay home most of the time. My husband now is very understanding and considerate of me but it did take him many years to arrive at this place. I still sometimes try to hide the pain and discomfort as it frustrates him because there is nothing he can do to fix the situation and men like to fix things and feel inadequate when they can't.
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Re: Loneliness. Do you find that Migraine is making you feel lonely...

Post  Mini on Thu Jun 12, 2014 6:34 am

So true Kem. If people only try to understand that we want the just to listen. You are right, men are much worse at this, they want to spring to action, and when they cannot it makes them feel bad.

All we want is to talk, and to share how we feel, and we want them to trust us, that we when we say we cannot do something, or feel unbearable pain, discomfort or exhaustion that are ALWAYS telling the truth.
WE do not need anything more then that, perhaps some practical help when we cannot drive, or do the chores about the house, but basically we just want to be believed, and loved regardless of the fact that we often spoil their fun, or are unable to share in normal activities.
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Re: Loneliness. Do you find that Migraine is making you feel lonely...

Post  Platypus on Thu Jun 12, 2014 5:29 pm

No doubt men try to fix things, but as a man I've faced a lot of rejection because women want men that are high earners.
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Re: Loneliness. Do you find that Migraine is making you feel lonely...

Post  Mini on Fri Jun 13, 2014 5:43 am

I am so sorry to hear that some women only judge men by their earning capacity Platypus.
As a woman, I think this is appalling, and also that such women do not deserve you. Judging a man only by his earnings, is as bad as men judging women only by their looks.

On the other hand if this was true in all cases, we would long die as a human race, since most people are average.
Average looks, and average earnings are much more common, and average people also manage to find each other, so there is some hope for all.

But I totally agree with you, that M make our lives much more difficult in this respect, because M often prevents us from leading normal lives and making any money at all, and this is tough if you want to raise a family. This, BTW applies equally to men, and women.
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Re: Loneliness. Do you find that Migraine is making you feel lonely...

Post  Brenda L. on Fri Jun 13, 2014 8:24 pm

Mini, I'm sorry for what you and others here go through. I can relate all too well to the extreme loneliness caused by migraine disease.

I used to go in and out of marathon migraines, so I would have some 'pain-free' periods where I could function like a normal human being. Back in those days, I was able to take vacations, get through college, and even go out to parties and rock concerts. I was able to socialize back then, which has become a thing of the past.

I've been in constant severe migraine since Dec. 2010. I can't even go out to a party on New Year's Eve or 4th of July anymore. With a migraine, the music and the crowds would be too annoying and overwhelming. It's too bad, because I love music and I used to love going to parties and concerts.

Migraine disease has turned me into a hermit. I really don't have much family at all. I visit my mom sometimes, but that's it. I have one brother, but he lives 500 miles away. We talk on the phone and I see him once a year at Christmas. I wish I could see my brother more.

As for friends, they all pretty much lost interest in me when my migraines became constant, which was very disappointing. Now that I cannot go out to parties with loud music, they just don't see me, ever. I occasionally communicate with my friends via the phone and email, but never in person anymore. I also am unable to work due to constant severe migraine pain.

It seems that nowdays the extent of my 'social life' is doctor visits and pharmacy visits. It is so sad and pathetic, but I don't know what else to do. I'm just in too much pain to socialize. I also get my hair done once a month and I talk with my hairdresser then. She's the only 'friend' that I see in person, and she's really just my long-time hairdresser. She's nice and everything, but I'm paying her to do my hair and talk to me.

So YES, I can relate to EXTREME loneliness brought on by migraine disease. Back when I was healthy, I had friends and a social life. Now, I just sit at home in pain. I wish some of my 'friends' would at least visit me, but they don't. Maybe they aren't 'true friends' after all. It's quite disappointing.

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Re: Loneliness. Do you find that Migraine is making you feel lonely...

Post  Platypus on Sat Jun 14, 2014 3:17 pm

One thing I can suggest is look on meetup.com for chronic illness support groups in your area. People with other chronic illnesses experience the same thing we do w/ migraines. It can become a community for you if you can find a group.
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Re: Loneliness. Do you find that Migraine is making you feel lonely...

Post  Migrainegirl on Sat Jun 14, 2014 4:36 pm

That's why sites like this are so helpful.  A community who understands and can interact with you when you feel well enough on your own schedule.
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Re: Loneliness. Do you find that Migraine is making you feel lonely...

Post  Mini on Sun Jun 15, 2014 4:22 am

Brenda, I am so sorry that your M seems to be getting worse, rather then more under control. I have been through so many different stages, or long periods of more, or less pain.

I was never sure if this is because "I did" something right, or wrong, to make this happen but in the end I have this theory that managing M is a complex and often almost accidental thing (in terms what works and what does not). Just when we think we found some answers it can go wrong again. The opposite is also true, sometimes, for no reason M is easing off, getting less frequent, or less troublesome.

How can we explain all this to other people, since even here, on this site we all have such different experiences in how to handle M. I think this has been the cause of much frustration with the "outside world" when you try to explain things and you see that blank look in their eyes, that they just don't want to know, so you end up being hurt even more.

So you cut yourself from people, you stop explaining, you become a recluse, not only because of pain but because you do not seem to belong to the rest of human race any more.

This site is great, and it has been of so much help to me over the years. people trust you and understand you, even if your experience of pain and treatment is different to theirs.

We share and we learn from each other and it is great, but I found that nothing replaces person to person contact, so in better periods, I make extra effort to keep some true friends who stayed the distance, who put up with my last minute cancellations and "strange" eating habits avoiding so many triggers etc.
It takes much effort and many e-mails, but I love seeing my friends, nothing replaces that, even if it is at time shard work.

I am not sure if it helps anyone, but at the moment, I am having few month of considerable improvement and hardly any h/a, and I am not sure why. I am just determined to make most of it, since I know how quickly things can change.
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Re: Loneliness. Do you find that Migraine is making you feel lonely...

Post  Brenda L. on Tue Jun 17, 2014 8:59 pm

Mini, Platypus, Migrainegirl, and others---Thanks for sharing your stories of the frustrations of dealing with M. This disease has destroyed me financially, physically, emotionally, socially, etc.

I think the biggest problem is that I really don't have any family. Most people I know at least have cousins or aunts and uncles---I have NONE of that. Both of my parents were only children. All I have is my mom and my brother (who lives 500 miles away). Most of my friends have moved away to various other States, so the only contact with them is via phone and email.

One other thing I can really relate to: My father was very controlling and emotionally abusive. My migraines began when I was in my teens. For 25 long years, my dad berated me and insulted me. My dad repeatedly told me that I was a lying lazy slacker who was 'faking' illness in order to get out of working and in order to get prescription drugs. I wish I had a dollar for every time my dad accused me of being lazy, crazy, a liar, and/or a drug addict. I would be rich be now.

My dad's false accusations hurt me so deeply that I don't know if I'll ever recover from all of that abuse. I worked really hard to graduate college with a 3.9 GPA (despite going in and out of severe marathon migraines). Even that wasn't good enough for my dad. My dad just sarcastically asked, "And HOW LONG does it take MOST PEOPLE to get through college?" Well, MOST PEOPLE don't suffer from chronic migraine.

So yes, all of my dad's abuse has beaten me down terribly. By the time I was 23, I knew I'd never be able to hold down a regular job and be able to pay my own bills. The harder I tried, the sicker I got. But my dad insisted I was just a lazy lying drug addict. (Lazy people are not perfectionists who get 3.9 GPA's in college. And the only 'drugs' I've ever taken are of the prescription variety, for my migraines).

Instead of helping me or listening to me, my dad ignored my illness and foolishly sold our family home when I was 24. I begged him not to, and he became more abusive than I can describe. My mom was his brainwashed 'victim'. My mom didn't want to lose her 35-year home, but my dad insisted on selling and my mom was terrified to 'disobey' my dad. I warned my dad that we'd all end up homeless and in financial ruin, but that only made him MORE abusive towards me.

My dad recently passed away. My dad squandered his fortune. Now my mom and I don't own a home and cannot afford to buy one. We went from rich to poor in not that many years. My mom and I long for our beautiful suburban home, but it's gone forever, thanks to my dad's selfish decisions. I cannot get SSDI and I'm in too much pain to work.

If my dad had listened to me and believed me 20 years ago, my mom and I would be VERY well off financially. Instead, my dad forced me to move out when I was too ill to work. For the next 20 years, I had to deal with my father's fury towards me. Even worse, my dad SOLD our house in 1994, so there is NO home to go back to. Now my mom is elderly and I'm disabled. And what little money we have is quickly running out. My dad messed up both my life AND my mom's life by not believing that I was truly ill. At least if I didn't have all of this financial stress, life would be a lot more enjoyable. Now, I'm suffering AND broke---NOT a good place to be.

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