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Reply by Sue B
13 Jan 2014, 3:32 PM
Yes, quite often. If it's too cold or too hot or too humid I siimply cannot breath well. So winter and summer I just don't go out unless I absolutely have to. I have to say that this has led to a nasty bout of depression in the past year. I began attending a CBT (cognitive behavioural therapy) group for depression, but there are so many other members who wear perfumes and aftershave that I might not be able to continue. Scents and scented products are a serious trigger for me.
Life sure is .... interesting. 
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Reply by KathCull_admin
17 Jan 2014, 3:46 AM
Hi Sue
I hope you are able to continue with the CBT group - I admire how you take things in stride and am sure it's not necessarily easy. Is there any way the 'leader' of the group could talk to the group about the impact of scents and perfumes on people without directly drawing attention to you? 

As you are not able to get outside on a regular basis, what kinds of things do you  enjoy doing inside  - you sound like a creative and innovative person. What suggestions might you have for others?

I hope working on your legal matters is giving you peace of mind. 

Take care. 
Katherine



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Reply by NatR
17 Jan 2014, 3:58 AM
Hi Sue,

I am like you - very sensitive to perfumes, aftershaves, smoke, changes in temperature - all the pollens in the air, it's challenging to deal with.

i am wondering if maybe somehow you could bring this topic forward?  As Katherine suggested;)  If you are in a group setting that is otherwise comfortable and helpful - I am sure that they would make changes for sensitivities?  It's like going to appointments at hospitals or almost everywhere now - you have to be cautious about others sensitivities.

i do hope somehow you can  stay in the group - it's hard enough to be isolated for so much of the time.  I am rooting for you;)

best wishes,
NatR  
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Reply by Sue B
17 Jan 2014, 5:46 PM
Hi Katherine and NatR,
It was such a beautiful day here yesterday that I went out! OMG it felt so good to have sunshine on my face!  True it was for an appointment, but still I got some good UV's. Cool
The facilitators were very understanding about my difficulty. They talked to the group at large regarding scents and scented products. There was no problem with it because all Fraser Health facilities are scent-free due to allergies. On a personal note I'd like to say there are certain perfumes that I really miss! White Shoulders! Cry Unfortunately I didn't get to group this week because I've had a flare-up that put me in th ER. I'm home now but it was a little scarey.
My mental health worker told me very recently to just do the things I love in the time I have left, and I think that that is good advice. I have come to understand that we can over-identify as being terminal; We can make being mortally sick our complete identity.

The truth is that it's a stage of life. Weather we're twelve and suffering lukemia or ninety and simply very old, the end of life will happen to everyone. Now this isn't just a glib standard phrase. It's reality. But it doesn't mean that the process has to BECOME us. We are the same people we were before we advanced to this stage. We have the same likes and dislilkes, the same interests and passions.

I think I'm lucky, because most of my interests are fairly sedentary in the first place, with the exception of sword fighting and camping with a medieval group I was involved with for quite some time. So, I can still crochet and knit and stuff like that. Recently I've begun to blend my fibrecraft with my geeky side...and I am SUCH a Geek! I have recently crocheted a Doctor Who tea cozy and a D&D eight-sided dice purse and knitted a Jayne Cobb touque from the show Firefly for my son (yes, I have bred a family of geeks, and I'm proud of it). I do realise that some of this may be a mystery to some of you, but you could Google it if you're curious. If you're interested I have a blog of various things I do;  it's called Susan's Bunch O Stuff and you can just click on the title and a new window will open it up. Katherine, if it isn't appropriate for me to put the link on here just let me know and I'll remove it.

I do find that writing a blog is a good activity for me. The topics keep me thinking, and they are about things I'm interested in. That might be something that others could do, as well. You write it at your own pace and about things you are interested in. Writing in general is helpful really. And you can write anything you want. There's no reason you have to confine yourself to a journal, although you can. You don't have to show it to anybody and it doesn't have to even be good. It can be factual or fictional, long or short, rhyme, meter or prose, or whatever moves you. you can write by hand or with a keyboard or even using a voice recognition program.

I'm not really sure that I've answered any question or responded properly. I hope I have.
Have a great day,
Sue
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Reply by KathCull_admin
17 Jan 2014, 8:59 PM
Hi Sue
I will write more later - but no problem posting the link.
Katherine 
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Reply by KathCull_admin
22 Jan 2014, 12:28 AM
Hi Sue
It's great that the perfume/scent problem was resolved. I hadn't thought of White Shoulders in a long time, but I know it and your memory reminded me of Old Spice and my dad! 

I appreciate so much your wise comments on what is important in life - thank you.

I went to your blog post re 'Beginning to Say Goodbye' - it sounds as though you have opened the door for important conversations with family and friends.  And the picture of your son and story behind the hat - priceless:)

How has your husband been?  Any new topics on your mind?

Katherine
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Reply by moderator | modératrice
26 Jan 2014, 8:35 PM
Hi SueB,

It's been a while. How are you?
Colleen 
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Reply by Sue B
27 Jan 2014, 6:49 PM
Now that's a good question. I'll be talking to my doctors fill-in as soon as I can get an appointment. It was a bit scarey BP wise over the weekend and it's possible I should have gone to the hospital.
I seem to have developed a "head in the sand" or "maybe it will go away" psychology just lately. Is this common? Thinking if you wait something our it will spontaneously get better? It isn't like me though. And why am I able to tell you this and not the ER? Yeah, I'm getting wierd.
Sue 
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Reply by moderator | modératrice
28 Jan 2014, 3:31 AM
umm. Am I allowed to say, I must've had a premonition? I'm so sorry that things were particularly bad this past weekend. While I don't think it is odd to look the other way and ignore what is happening, it appears to be out of character for you and worth examining. 

I'm glad you were able to tell us. Why not use it as a practice run and now tell the professionals caring for you too. Remember you are the expert in you and an important part of your care team. Adding the information about how you're feeling physically and emotionally is part of the "agenda at the boardroom table" of experts. Not sure if that metaphor works for you, but I'm sure you know what I mean.

You're not getting weird. Maybe a little scared?
 
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Reply by Sue B
28 Jan 2014, 4:09 PM
Rats! I was shooting for wierd! LOL
You can say premonition to me any time. I, for one, am confident that weather you call it magic, psychics or quantum wavelength inter-reactions it is ALL possible. I will stop the geeky/nerdy rantings now. Laughing
Thank you for telling me to follow up with my own physician. I wasn't sure weather to or not, but now I will. I'll let you know what the word is.
Sue
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