My cystic sister lindsay got her call. She is the lovely lady who updated my blog so faithfully during my transplant. I'm repaying the favour, and you can check out how awesome she is doing here http://laby-lol.blogspot.com. Click here for Lungs Out Loud.
It was a really emotional day yesterday.
I didn't know whether to be ecstatic for lindsay or sad or scared.
One of my friends who has CF passed away yesterday, Jessica. She was 24 and from orangeville. She went in to the hospital with a sinus infection I believe and just could not fight it. She had been sick and on IV antibiotics for 2 years due to catching the bacteria cepacia. The infection coupled with the bacteria was too much for her and she passed away. I never met Jessica in person, but we emailed each other back and forth. She loved her boyfriend and family and friends very much. I could tell from her emails what a great gal she was. She was always so inquisitive, and just seemed like such a sweet girl. I'm so so so sorry to her family, to james, and to her close friends. What a loss the world has had. Rest in peace dear Jess. I know what a struggle it is to breathe and you my friend struggled for so long. CF warrior you were my dear. We'll keep fighting the fight for you. CF is not fair. Not fair at all.
Showing posts with label post by laby. Show all posts
Showing posts with label post by laby. Show all posts
Thursday, November 24, 2011
Friday, September 11, 2009
How to: React to a coughing Spasm
This is a post by my cystic sista 'Laby'. Check out her blog, click here, but here is a snid bit, which I thought was really great...because it's all wonderfully and fantastically true.
Posted by Laby:
If you know someone with CF you are guaranteed to experience the potentially awkward situation of being rudely interrupted by a coughing spasm. AKA a string of coughing that does not seem to come to an end, effectively turning one’s face a shade of colours ranging from red to purple, robbing them of air and the ability to speak. Sometimes they last a few seconds, usually they are a few minutes, sometimes they happen rarely and other times they are a common reoccurrence. In any case, they are sometimes scary to an outsider, but usually the person having a coughing spasm is simply annoyed—especially when they occur mid-conversation (don’t they always seem to come on right when you are dying to say something?) or after laughing at something extremely amusing. So to our spasm-less friends, here is some advice on how to react to a coughing spasm:
Do Not:
Ask if I am ok while I am having a coughing spasm…
Although you mean well, quite frankly you will most likely (a- not even get a response because I am too busy coughing or (b- get a nod of ‘yes’ anyway because that is the only thing I am able to do. In fact, it is best to avoid any sort of questioning during this time period.
Side note:If you feel compelled, ask me how I am after. My answer will be “fine” 99.9% of the time though, so you might get bored with my cut and paste answers.
Pat me on the back
Contrary to popular belief, patting me on the back will—if anything—irritate things more. Not only that but it makes me feel infantile—the only thing missing is the burp blanket. Keep in mind I am not choking on a chicken bone or anything (beside my own phlegm… TMI?) and the coughing is already helping me out enough. Save the extra physio for later!
Shove and/or offer me water
One of the first questions I seem to be asked when I have a coughing spasm is “Do you want a glass of water?” to which I croak out “No.” It is kind of difficult to drink a glass of water while you are busy gasping for air. If I were to attempt such a task, it would probably make things much, much worse. However, sometimes a glass of water following a coughing spasm can be nice.
Say Robitussin
You are a tool. Enough said.
Make a joke along the lines of “you should really give up smoking”
I’ve heard it before; fresh material is appreciated.
Do:
Keep Talking
If we were having a conversation, by all means keep it going, even if it means creatively continuing a one-way convo for a short amount of time. Feel free to talk louder and OVER my incessant coughing. Nothing is more irritating than having a coughing spasm hijack a conversation.
Stop Walking
If I start having a coughing spasm while we are walking, stop with me. If people continue to walk, I find myself trying to keep up while I am coughing—this just exhausts me and fuels an even longer spasm.
Offer a Kleenex
For those who carry around kleenex, you are convenient. When you are coughing and need a kleenex (even if it is just to hide your face) it is so hard to search through your purse or pockets for one. Sometimes you really just need it shoved into your hands for you.
So there you have it! Of course not everyone is the same, but I think if we compare notes a lot of us CFers would have a similar list.
Posted by Laby:
If you know someone with CF you are guaranteed to experience the potentially awkward situation of being rudely interrupted by a coughing spasm. AKA a string of coughing that does not seem to come to an end, effectively turning one’s face a shade of colours ranging from red to purple, robbing them of air and the ability to speak. Sometimes they last a few seconds, usually they are a few minutes, sometimes they happen rarely and other times they are a common reoccurrence. In any case, they are sometimes scary to an outsider, but usually the person having a coughing spasm is simply annoyed—especially when they occur mid-conversation (don’t they always seem to come on right when you are dying to say something?) or after laughing at something extremely amusing. So to our spasm-less friends, here is some advice on how to react to a coughing spasm:
Do Not:
Ask if I am ok while I am having a coughing spasm…
Although you mean well, quite frankly you will most likely (a- not even get a response because I am too busy coughing or (b- get a nod of ‘yes’ anyway because that is the only thing I am able to do. In fact, it is best to avoid any sort of questioning during this time period.
Side note:If you feel compelled, ask me how I am after. My answer will be “fine” 99.9% of the time though, so you might get bored with my cut and paste answers.
Pat me on the back
Contrary to popular belief, patting me on the back will—if anything—irritate things more. Not only that but it makes me feel infantile—the only thing missing is the burp blanket. Keep in mind I am not choking on a chicken bone or anything (beside my own phlegm… TMI?) and the coughing is already helping me out enough. Save the extra physio for later!
Shove and/or offer me water
One of the first questions I seem to be asked when I have a coughing spasm is “Do you want a glass of water?” to which I croak out “No.” It is kind of difficult to drink a glass of water while you are busy gasping for air. If I were to attempt such a task, it would probably make things much, much worse. However, sometimes a glass of water following a coughing spasm can be nice.
Say Robitussin
You are a tool. Enough said.
Make a joke along the lines of “you should really give up smoking”
I’ve heard it before; fresh material is appreciated.
Do:
Keep Talking
If we were having a conversation, by all means keep it going, even if it means creatively continuing a one-way convo for a short amount of time. Feel free to talk louder and OVER my incessant coughing. Nothing is more irritating than having a coughing spasm hijack a conversation.
Stop Walking
If I start having a coughing spasm while we are walking, stop with me. If people continue to walk, I find myself trying to keep up while I am coughing—this just exhausts me and fuels an even longer spasm.
Offer a Kleenex
For those who carry around kleenex, you are convenient. When you are coughing and need a kleenex (even if it is just to hide your face) it is so hard to search through your purse or pockets for one. Sometimes you really just need it shoved into your hands for you.
So there you have it! Of course not everyone is the same, but I think if we compare notes a lot of us CFers would have a similar list.
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