Shame?

[Barnabus]

Hey guys ’n gals.

Soo, as topic, does anyone else feel shame?

With that I meen shame for being an unpredictable party-pooper, ( I often get attacks that ruin planed fun days). More a ”being a burden” feeling.

Shame to talk about the fact that I suffer from severe/extreme headaces with friends and co-workers. (Take an aspirine and man up, you just have a headace)

Sometimes when my wife sees that Im in pain, I tend to down-play it, saying that its Ok, just a little normal headace, when infact I am hurting bad, then I suffer through best as I can to not disappoint/burden her. (It always backfires as I cant keep up the pokerface as the energy drains quickly trying to keep up the charade.

Same deal at work, I tend to downplay the severity of the pain, as im affraid to hear something like: there is ”something wrong with him”. ( I eventually crash )

And now, after finally finding this website, and the information that lead me to find reliefe with the use of MM, I feel ashamed for using ”illegal substances”, Hippie/FP hallucinogenics.

 

/Barnabus

[CHfather]

Living with CH - 8.5x11 - 9-8-14.pdf

[jon019]

...nope...CH is not a choice....guilt/shame is...I got pissed and made a plan and followed through.....sometimes it even worked...and when it didn't...NEW plan....

[dmlonghorn]

@jon019 agreed!

Start with your family and communicate... And then communicate some more. In my home, our own form of sign language is evolving. It helps when I'm about to get hit, getting hit, etc. Things like thumbs up, down, hat on backward, sunglasses on inside.

I downplayed the hell outta CH at work, things only got worse at work.

Try to get a mini plan at home that works and implement variants of the plan throughout other portions of your day to day life.

Shame on CH, not you. Ya hippie! 

[Siegfried]

Hi Barnabus,

From my experience, just telling like it is, is the best way forward. I am very open with my condition towards my coworkers, manager, family, friends etc... Things I mostly tell are like

• It's a very rare condition, a neurological disorder that only a few people have. I was unlucky to drew the bad fate and now have to deal with it and it will not go away anytime soon
• I tell how an attack feels, how 'clusters' work and that there are fixed periods that I am good and others that I am much worse. Sometimes I let them see a youtube video on how an attack looks like
• I also talk about the medications we are using: oxygen, verapamil, medrol, triptans etc... all heavy stuff; so next time they won't recommend you an aspirin 
• I usually say also that I am still lucky I can have a more or less normal life with this. Many CH sufferers are completely disabled. It's a heavy condition to deal with.

No need to downplay but just stay objective and don't fall into self-pity or compare yourself openly with others with other conditions. Just tell the facts, not your interpretation of the facts.

This way I have actually never encountered anybody who told me to take an aspirin, or lay a bit on my bed or something because they have some background of what it is. They know it's not a usual headache. If they do not have this information, you can not expect people to be aware and react in a right way. There are so many diseases out there and unfortunately cluster headache contains the word 'headache' so that's what they think it is...

Paroxismale hemicrania patients are better off... although the condition is nearly identical, the name sounds very scary and people won't think of a headache 

Best Regards !

siegfried