Annette
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Why do we all need a CH family to belong to ?Hello all
I was chatting to Ike today and something jumped up and hit me, and no it wasnt his boot !  It was what he said.
Ike was telling me he used to have lots of friends but many have drifted away since he became unwell with clusterheadaches (CH) many years ago. People just stop coming around and stop spending time with you when they perceive you to be having " problems ". In some cases, even your family can abandon you.
This is where chronic cluster headaches (CCH) is different from episodic. If you are lucky and you have only a short cycle with a long break in between, overall life is still quite "normal". You are grounded for a while but then you pick up where things were left off and continue, pretty much in the same manner and similar lifestyle. But if you are chronic, you may not have this luxury anymore. Your life maybe changed forever.
If you are a chronic and you become med resistant or the headaches cant be controlled to an acceptable level, you will be living in perpetual pain. This will affect your life on many levels, from not being able to work, to having to deal with chronic pain, to looming feeling of depression , to diminishing social contact to something as simple as being able to sleep enough hours ! Slowly it can eat away at your self confidence, your self esteem and even your personality. This phenomenon is seen across the board of all chronic illnesses, especially those associate with a high level of pain.
The fundamental of any successful treatment for any chronic illness is the combination of effective medication AND support. You need at least one to be able to cope with it. Unfortunately for CH in general, medication is a bit of a hit and miss already. Nothing works for sure and nothing works forever. It appears that meds work even less effectively in chronics. Therefore for people with CCH, it can be a double whammy, meds that dont work well and the real risk of lack of support.
If you are going through a rough patch and meds are not doing their job, it helps a huge amount to be able to survive on the genuine support offered by people who truly understand. When you dont have neither, thats when real depression can seep in and thoughts of self harm may manifest in your head. I have always said that its a real struggle learning to cope with CH but doing so alone is just pure hell.
Unfortunately, CH is so rare and 99% of the people in your life can not comprehend the depth of your difficulty. I have yet to meet a CHer who feel that they are completely understood and supported by people outside of their family. The risk of social isolation is very high and very real with CCHers. Social isolation is not healthy. People the world over have similar needs : the needs to feel and give love, the need to belong, the need to be accepted and understood.
This is where community board like this comes into play. Here you will be unconditionally accepted and supported. A few people have raised their eyebrows at the thought of a board for CCH. It might be a bit unusual at first glance but CCH is a different ball game. CCHers do have experiences that are different from episodics. For one, episodics have the opportunity and choice to "forget" all about CH while in complete remission, at least until the next cycle. CCHers dont even have that choice. They cant forget CH for more than a few days at a times, at best. Some have not had a break for years.
So this is home for CCHers and it is also home for episodics and supporters. This is where everyone is accepted and loved and cared for. No one's pain will be down played and unless you blatantly disregard basic social interaction rules , you are always welcome with open arms. There is enough love and support for everyone and it will remain a safe haven for us all to be.
Dont be shy, I hope to see you all signing up and joining. We all need a CH family to belong to. Some families we cant choose but this one we can.
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phil h
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Well done Annette . Our realities are a little depressing , but our need to have this family is right on the money . You're the best . :smt104
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Tami
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Annette that was super well done  .What you said was so true.We live around ch and the pain so any pain free time that ike has is taken very greatly and we use it the best we can.
Thanx again Annette for puttin that into words as this is the way cch people and supporters feel.
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Ike
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Spot on, thank you Annette
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Sherri
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Well done Annette.
We really felt we needed a place that chronic's could speak freely...because it is different than episodic...I don't mean the level of pain...I mean the lifestyle.
Due to that, there is a domino effect. No support is a horrible, devestating situation...combined with the fact no one really does understand completely.
Here, Chronic's are definately understood, and free to talk about being chronic without judgement... 
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