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support or rather lack of

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#1 Sat, 15/08/2015 - 19:46
anitaspaul
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support or rather lack of

Not to sure where to post this as the more invisible illness i endure ie unseen symptoms that i feel daily the more i despise my family and though i kid myself that they should understand seems like they just don't have a clue. Tired of the usual oh you dwell you should do something to take your mind of it go for a walk smile be happy you can't get symptoms from high blood pressure and the ultimate slap in the face maybe you should try paracetamol for the headache if only it was so easy wouldnt find myself trapped indoors going through this shit on a good day still feel like a heap of but just about manage to get out and do what i can on a bad day getting out of bed is all i can muster not that I'm not my usual happy self just unlike people seem to think being happy and smiling isn't a cure

AnitasPaul

Sun, 16/08/2015 - 08:33
Harrietjt
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As I get to know more Clusterheads (my husband has CCH) and understand the CH life better, I am really struck by the repeated experience of isolation which is made so much worse by other peoples inability to understand or believe what is being explained and described to them.....as if CH isn't cruel enough!

We have come across the Paracetamol one so many times, it drives me nuts! In what world is it appropriate to say 'have you tried paracetamol?' to a person who has just explained having repeateded horrific neurological attacks? Do they think it didn't occur to you to try treating the pain or what? 

Sorry you have to put up with that kind of stuff, extra hard when it happens with those you really should be able to rely on. Thank God for OUCH, a whole community of people who understand.

Harriet.

 

Mon, 17/08/2015 - 22:40
anitaspaul
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i dunno Harriet it's not like i feel particularly depressed or stressed a little anxious maybe distressed was bad enough when i just had the abdomenal distention and ech least   then i had some kind of break from the ech thought headaches were over after 3 unusal cycles within the same year but 2 or so year's later i find i have 2 or 3 overlapping headaches along with the stomach problems and now high bp and nafld to function as normal is more of a struggle than ever and i find myself constantly belitted if i even utter how bad i feel and having it explained off as either ailments dwelling or trivial get laughed and smirked at around my locality belittled by my family and the woman i love and just want to hide away indoors      

AnitasPaul

Tue, 18/08/2015 - 04:23
Harrietjt
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That is all so tough, you seem to be getting this complete lack of understanding from all sides which sounds pretty unbearable to me. Feeling ill is lousy, cluster attacks are hell; you've got both going on and it sounds like no support at all. 

Keep using OUCH, that's what we are all here for, to share the crap and the laughs and keep each other going.

H.

Tue, 18/08/2015 - 09:38
anitaspaul
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A pet name for my headaches the beast of clapham common north side Smile

AnitasPaul

Tue, 18/08/2015 - 20:17
sandramac
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the one thing i always say to supporters when they are struggling with dealing with this illness is to make sure they communicate with their family! Talk to your family, show them info from this site, explain to them how their comments make you feel!! CH affects the whole family, not just the sufferer!! You could also suggest ways in which they can help when you are in cycle and having attacks.  Although you have said you don't feel depressed, illnesses such as CH can make you feel low, and it may help to have a chat with your gp about how you're feeling! 

Tue, 18/08/2015 - 20:58
anitaspaul
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Thank you Sandra but i give up with blood family they wont take their precious time to listen to my description cut me off without allowing me to explain fully and won't read or look at info off ouch

AnitasPaul

Tue, 18/08/2015 - 21:14
sandramac
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am sorry to hear that, you have all of us at ouch to help and support you as best as we can

 

Tue, 18/08/2015 - 21:21
anitaspaul
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Thank you Sandra very much appreciated and thankfully i have my best mate and most precious friend Anita who i know i don't need to explain anything to but we can see the funny side of it and laugh at the jokes no matter how sore they are ouchhh my foot Smile

AnitasPaul

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