I know that we talk all the time about living in between the hits.  I try.   There are just some times when your life is interrupted by CH though.  As a cycle goes on, I am increasingly tired.   I get more and more down and feel less and less like doing things.  I make myself do what I have to but sometimes I really need to do what is best for me. ( Shopping at 3am didn't seem like a good idea.) How do you make people understand this?

I have a hard time saying no to people in the first place.  During a cycle, I feel like I am constantly letting people down.   It isn't so much my family.... They are very supportive.  It is mostly friends that just seem to not understand.  Especially women who suffer from migraines.   I can't tell you how many friends have said to me that they wouldn't let a HA keep them from doing what they want to do or that they just keep going when they are in pain.  Take a Tylenol.

I'm having a hard time understanding why people would think that I would choose not to do the things that really want to do just to piss them off!   I don't get it.  It's bad enough to have to deal with a cycle and the guilt I feel when I finally say that I can't do things with or for people.  Now I have to put up with people giving me the cold shoulder.

PF wishes,

Jeannie

Do what I do - tell them to go f*ck themselves and find yourself with a lot fewer friends to have to please.

Honest to God, the older I get, the more of a hermit I become. And I'm liking it a lot.

Awww Jeannie - people can sure be very unsympathetic to things they don't see or understand.  I'd be very tempted to show them the video of Chuck in mid-hit!  Perhaps that would give them a clue, although there are some who will simply never get it.

Send them link to this site, and maybe they will understand.

When it comes to the migraine thing - I always compare HA's by saying 'I have had 4-6 migraines today, have a constant tension HA and they just annoy me and make me tired - bring on a bad migraine!' That usually makes people realise even a little bit when they can't understand, but then until you feel the pain or are a supporter of a suffer you never will understand.

If people aren't interested I just ignore them now to be honest! I am not too bothered if people think I am 'exaggerating' because my close friends and family know how I feel and that's important to me.

Sorry to hear you are having a hard time *hugs* - know there are people who do understand like on this forum. Wishing you PFDAN x

First off - to really make them understand, don't refer to it as a headache.
If you call it a neurological condition they start to grasp it better.
Explain it as I do, tell them that in an attack, the blood vessels on the affected side of your head swell dramatically crushing the nerves. Your brain is encased in a skull so there is no room to expand and it becomes excruciating.
Prof Goadsby tells a story of a man he knew who was well educated but who gouged his eye out with a knife because the pain was so intense.

It's been compared to surgery without anaesthesia. They are called suicide headaches because people HAVE committed suicide. They didn't acquire that name because fluffy bunny rabbit syndrome was taken already!

It becomes hard to communicate when you feel an attack coming on. The dread is indescribable as is how sub human it makes us feel.

It's no wonder we withdraw into ourselves and no, it isn't fair or easy for those who love us. Its tough for them when we're uncommunicative but they need to understand it isn't them, it's us. It's fear.

If they can't understand after you explain all that well, I wouldn't worry. Their own heads are so far up their own.. orifices  - that they won't ever need ear muffs to keep warm in winter!

Good luck - and don't forget, you've always got us!!

Helen

I just send them to see Tony's video because my wife and daughters started crying when they saw it, saying "that's you Dad."

In fact, I swiped a copy and put it on my own server:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Never had anyone say "I had one of those once" after they see it.......

Marc

I know what you mean about some friends with migraine are unsympathetic. They may have a med that works for 8 hours but they don't understand that during 8 hours we may have 3 separate headaches & the 8 hour med only would cover the 1st one. 

I know we all get tired & tired of it, but we can only do our best.

If someone really cares about you, they find a way to enjoy your company - headaches or not, and the rest of them are on the B list.

I'm chronic & I have some painting buddies who go on day trips with me, and they give me room when I get hit & then get closer again when it's over. I treasure them. They take it right in stride.

Charlotte

And Marc, I hate it when little kids see me & think I'm crying. I was on the porch with an ice pack at a family thing, & my little niece thought someone had hurt my feelings & kept telling me I was pretty.  I couldn't explain it to her, but she felt better when I felt better.

Charlotte

Brew lol, Are you ever too young to be old before your time?

I look forward to meeting you at the next covention.

;D ;D

I'm an enigma, and I look forward to meeting you, too!

Look for me - I'll be the guy with Kleenex boxes for shoes.

Jeannie,

Send them to START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE;

This is a story about a lady with Lupus and how she explains it.  I know we don't have Lupus, but there are several things that cross over for us, namely the exhaustion, the inability to function at the level we like, and the ability to deal with multiple stresses when getting hit hard. 

My wife has used it for explaining her MS, although people understand that a bit better because the can see some of the symptoms.  I have used it with some effect explaining why I had to pass on some things due to knowing I would be hit during them.  It merely gives them a visual idea to explain what you can and cannot deal with.

Hope it helps.

Jerry