Cate's Diary

I have given it lots of thought LaMa & am still undecided. On one hand, I know that staying at home & not risking breathing in any perfumes or other stinky chemicals will help my lungs. On the other hand, I need to get my point across & visiting the doctor with a mask on & giving her the letter would do that. G could deliver the letter on my behalf, but it's a big ask & I noticed that he shed a tear or two when he read my letter yesterday. I think she needs to see how this has left me as I am so short of breath. I can barely do anything without gasping for air. I feel I need oxygen.
I won't go to the doctors unless the mask arrives today though as I don't have one that stops perfume & VOC's.
I did an online grocery shop for the 1st time last night. It will help G. He hates supermarket shopping. I made it pick up tomorrow. He can get some extra fruit maybe. It will be interesting to see how it goes. At this stage, I can't imagine shopping in our local supermarket again.
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I am feeling fairly low today, but hopefully, this will pass. The implications of me staying this way have sunk in. I know that I can adjust to things, but the thought of no more travel, no more golf, no more live music, no more eating out etc (the list is fairly endless) is absolutely devastating. I know that I am capable of looking on the bright side, but right now, it's out of my grasp.
My sister has not had a social life for over a decade & I really hoped & thought that my life would not become like hers.
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It's also a very gloomy looking day today & I must remember that does affect my mood. I'll concentrate on doing some things that need doing, like paperwork & keep working towards divesting myself of almost all my golf club responsibilities. I'm getting there. I miss playing!
 
I would be very surprised if you fell that deep that quickly. I really do think that if you take the time to fully recuperate now you can do at least most of that list again. Starting again before you´re truly well again will make it harder. Believe your sister on this one.
 
I will take the time to try to recuperate LaMa, I promise. I do take a lot of notice of my sister. She is really knowledgeable about MCS and is a phone counsellor for an Australia-wide allergy group. I shouldn't be putting myself at risk today as I will wait outside while G checks me in & then when I go in to see the doctor I will wear my new vogmask to get into her room, which is just inside the front door. I won't risk anything else. I will get another vogmask if this one keeps out fragrance & VOC's. I feel confident that it's going to & it's comfortable.
I won't be going inside any shops as G will be doing that. He has a long list- library, post office, supermarket, newsagents, bank....
My air purifier is arriving today too apparently.
It's almost time to go. I'll report back later xoxo
 
Doctor's visit on Friday: I couldn't bring myself to tell you about it yesterday & needed to spend a day trying to find the positives in my life & concentrate on them. If I had stayed at home & let G deliver the letter & the USB, I would not have found out that even my doctor's room is toxic & I don't think I would have realised that I will need to change practices, rather than try to get them to change their procedures. I think it's too much of an uphill battle & one I am not up to physically anymore. I just can't talk about what happened, without getting upset.
I couldn't stay in her room as I had taken off my mask once inside & was overcome almost instantly. I barely had time to say anything as I needed to get outside to get fresh air quickly. The doctor had shrugged & said they had sprayed her room with a "room freshener" just before I got there. I left G with her & rushed outside.
After about 10 minutes they both came outside & basically she handed me a list of 4 doctors who specialise in allergies & said sorry. I was a bloody mess. I asked her to try to get things changed so that I could keep coming to the practice, but I could see that it was a waste of time. I came away in despair. The irony of this life-changing experience is too much.
When I recovered enough to not be a blubbering mess, G then did the rounds of the shopping list & I sat in the car. There were 2 parcels to pick up- 1 from Blessed Earth & the other turned out to be a calendar sent to me for free from Vision Australia. I used to always get my MIL a very large-print one & us a not so large print one that was easy to see from our dining table & I had kept buying us one & one each for our sons, as they have lots of room to write birthdays etc on. Last year I bought an ABC birds one as a memorial for John Clarke, but it is a terrible calendar & you have to stand about 6" away from it to read anything & it starts on a Monday, which is very annoying. I had been kicking myself that I hadn't bought the usual one & then they sent me one for nothing. Lovely. The Blessed Earth parcel was a set of organic cotton sheets & a pair of organic cotton elephant print PJ's, also absolutely lovely.
We went out to the golf club as I had decided to empty out my locker in the women's locker room as, even if I do play with them again, I don't think I'll be going in the clubhouse.
On Friday afternoon my air purifier arrived & it is brilliant. It is set up in our bedroom & I have had it going each night. Friday night I didn't sleep well as my brain was in turmoil & going over & over the things I love doing that I may never be able to do again.

Yesterday: I spent all day ticking things off a list & concentrated on the things I can still do & the ways I can do them. I made a list on my phone. Some are boring, but hey. I am going to play golf again but probably not with the women on their comp days. Most likely G & I will play out at the club at least until the end of the year. My buggy & clubs & his are in a locker room outside the clubhouse. I'm going to work at feeling fit enough to play again & that will entail going for walks around our land.
I emailed the place we are booked into next Sat & Sunday on the East Coast. I got an amazingly positive response & I am really looking forward to it. We are both meant to be playing golf on the Sunday with the social group we joined. G is going to ask if I can share his clubs. You are only meant to be able to if you are playing as a team. Perhaps if my score does not get handicapped it will be OK. I'll see how I feel on the day if it gets approved. The place we are booked into is right on the ocean & you can walk to see fairy penguins. It is also close to the golf course.

LaMa: You will be pleased to hear that I also emailed the woman who initially set up the golf club website & asked her very nicely if she would add the new club secretary( B has quit) & the handicapper(the guy I appointed as admin of the FB) as admins on the website & to let them know & give them the instructions that she gave me, which really were so helpful in explaining what is quite complex & giving me the confidence to try. Other than the Vets this will remove my responsibilities out there. G has been warning them that I may not be able to continue as Sec/Treasurer.

Today: A day spent at home with G. He just offered to take me for a drive, but we'll do that tomorrow. I just got a message back from a friend of my sisters(from the allergy group) telling me about her doctor. She is going to make some enquiries on Tuesday for me. G is washing the dishes, so I had better skedaddle & dry them. One of the boring things that I can do.
Love to all, Cate.
 
Doctors... are just people, sadly. I sometimes wish they really were what they used to be treated as: all-knowing, all-powerful god(esse)s in white. Of course that would require a rewriting of the laws of physics so I´m not holding my breath unless someone just sprayed the room with an air-"freshener". I admire your tenacity and your unwillingness to stay down. More hugs.
 
Thank you, LaMa. I told my sister today how much I like you & how similar you two are. I know you would like her! I hadn't told her about the doctor's visit until this afternoon & it had given me time to not be so angry & upset. She is a phone counsellor for an allergy group & I know how harrowing some of her calls are.
I had a big list of notes to either tell her or ask her & I was able to do that & then say"that's it, now it's your turn. Go! Tell me all about your "new" car! :) She has been given a car. She so deserves this. This car belonged to the parents of one of her allergy support group friends & they insisted she have it. I'm thrilled to bits for her. We talked for an hour & a half.
G & I had a lovely day at home. We did quite a bit of gardening. I am so lucky to live where I do. So much fresh air, so much space around us!
 
It is a lovely day today & G is going out to the golf club for a couple of hours. The "powers that be" stuffed up a booking & there was no-one organised to do the bar for a group of vets who had asked to play their weekly comp at the club as their course is having work done on it. Luckily their president rang G on Friday because when he conveyed the message on he was told "No, they don't need anything at all", when, yes. Yes, they do. Rather than saving the face of the club, G is helping out friends from another club.
I was going to drop him off & then go for a drive, & I think I still will, but our grandson has asked for a lift into town & even though I have asked him to be FF, I am now a bit nervous, that he won't be & I will be stuck out there, unable to drive. I need to learn to cope with accidental exposure as it's going to happen, but it is so hard when it encroaches on my clean space (my car). I might put a rug on the back seat & have my window open, just in case.
Wish me luck!
 
Good luck, Cate. I think this one falls under the "practice" heading, instead of the "unnecessary risks" one. G´s still a good man and the club still sounds like a mess :)
 
I'll be honest and say I'm truly baffled by your allergy predicament. I know many people with allergies (myself included), but never have I heard/was aware that strong fragrances could evoke such terrible reactions. Most of the allergy sufferers I know are either allergic to some sort of food and/or medication, with the occasional spring time allergy (due to the pollen). I hope you can find some way to work around it, as the entire ordeal sounds terrible. As for your doctor's office, I think that perhaps it's best you move on. I'm not sure how things are run in that specific office, but I used to be an EMT and I'm currently studying to be a Medical Assistant, and while that puts me in the lower tiers of healthcare, as far as I know (and have been told) they're supposed to keep everything fragrance free/odorless...

That aside, I'm happy to hear your purifier has arrived and is doing its job correctly. Perhaps, at least while home, it'll give you the sort of peace of mind and allow you to breathe a little more easily. Maybe you can find a mini one and put in your car?
 
Cate, I really hope you can go see a specialist. I HAVE to believe that there's some kind of steroidal inhaler or other allergy medication that would at least allow you to sometimes still do all the things you like.
 
LaMaria said:
Good luck, Cate. I think this one falls under the "practice" heading, instead of the "unnecessary risks" one. G´s still a good man and the club still sounds like a mess :)
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It was a practice run LaMa & it went well. I didn't take any unnecessary risks though. No going into shops. I rang to place orders & G went into the shops on our way home. I visited A, after first ringing, & said I would need to stay outside. That was nice. I did suck on Bisolvin dry cough lozenges, which help de-sensitise you when you come in contact with fragrance, but I didn't need my puffer, nor have a nasty reaction.

Unstoppable said:
I'll be honest and say I'm truly baffled by your allergy predicament. I know many people with allergies (myself included), but never have I heard/was aware that strong fragrances could evoke such terrible reactions. Most of the allergy sufferers I know are either allergic to some sort of food and/or medication, with the occasional spring time allergy (due to the pollen). I hope you can find some way to work around it, as the entire ordeal sounds terrible. As for your doctor's office, I think that perhaps it's best you move on. I'm not sure how things are run in that specific office, but I used to be an EMT and I'm currently studying to be a Medical Assistant, and while that puts me in the lower tiers of healthcare, as far as I know (and have been told) they're supposed to keep everything fragrance free/odorless...

That aside, I'm happy to hear your purifier has arrived and is doing its job correctly. Perhaps, at least while home, it'll give you the sort of peace of mind and allow you to breathe a little more easily. Maybe you can find a mini one and put in your car?
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It's outside most people's understanding Unstoppable. I was aware of the implications of MCS (Multiple Chemical Sensitivities) as my younger sister has it & I know her & many others are virtually housebound because of it. My sister is a phone counsellor for an Australia-wide allergy group and I have been hearing about it for years and years. The stage that I am at now is where she was about 10 years ago.
It is time for me to find a new doctor. My doctor is only one of many in the practice & would have little say, even if I thought she really understood MCS. After Friday I don't think that is possible. The air in the whole building is toxic. It's time to find another doctor. Unfortunately, I will probably now have to travel at least 40 km in one direction, or most probably 60 km in the other, even if I do manage to find a practice that has some understanding of MCS & the needs. We seem to be so far behind in the knowledge of what air diffusers & room deodorisers are doing to people. Everyone seems so sucked in by chemical companies. In Tasmania, we have such beautiful fresh air. An open window is by far the best alternative. A friend of my sister's, also with MCS, is seeing a new doctor today in the practice she goes to & she is going to let me know how she goes. It's about 40 km away& near the sea.

Air purifiers for cars are still fairly big& my car is very small. We are thinking of getting a small campervan/motorhome so that we can get it as fragrance-free as we can & still be able to travel. I would make sure it had a good air con system in it but could use the one I just bought, depending on the size of the camper. I think having a camper would be a better alternative than trying to change policies & procedures in accommodation places & I can't see me tackling overseas travel ever again. I was lined up to go look at one being sold privately, but someone just beat me to it.
I am so determined to think of what I can do, rather than what I can't.
-Cory- said:
Cate, I really hope you can go see a specialist. I HAVE to believe that there's some kind of steroidal inhaler or other allergy medication that would at least allow you to sometimes still do all the things you like.
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I will go see someone else, Cory. Now that I need to find a new medical practice I will find one that at least has one person who specialises in allergies. I already use a steroidal inhaler & take allergy medication every day. There is no cure for MCS, only avoidance of the chemicals that you are allergic to.
The main thing for me now is finding a safe place where I can go & not end up sicker than when I went in.

Thanks for your support & for caring. I'll make the most of this. I'm done being so angry & upset for now.It's time to work out what I can do & start doing it. My diary entries are going to be long it seems while I am spending so much time at home. I am such a sociable beast :blush5:
I am so lucky that I have such a wonderful husband. I can't imagine how hard it would be without him. Living in this house has more pluses than minuses & I think we will stay here until we can't. If I had followed my brain & bought a place in town I would not have this haven away from the rest of the world. Thank goodness, my heart prevailed!
 
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I'll be honest, it drives me nuts how many people can't seem to let go of their air fresheners, room diffusers, scented candles, etc. If you're house is clean, it should already smell good.

And none of those things actually smell good. All they do is make me nauseous and give me a headache. They tend to be overwhelming to me.
 
LaMaria said:
The camper idea sounds lovely, especially living in such a beautiful place.
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I'm keen- very keen. I have always wanted one, but G has never been keen on it, as he doesn't much like driving, let alone long distances. He doesn't seem averse to the idea, so I am looking :)
-Cory- said:
I'll be honest, it drives me nuts how many people can't seem to let go of their air fresheners, room diffusers, scented candles, etc. If your house is clean, it should already smell good.
And none of those things actually smell good. All they do is make me nauseous and give me a headache. They tend to be overwhelming to me.
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People are just crazy about their synthetic, stinky pongs. The world has gone mad about them.

G & I went to "town" today (120 km return) & had a successful expedition. I drove in & he drove home. I sat in the car while he went into a couple of stores. I have to give very detailed instructions & make sure he is listening. It's a challenge. We're learning as we go & will make changes to our new system as we need to. I had a $65 voucher to spend in a garden centre ( won at women's golf) & I went in there with my new vogmask on. It was fine. I don't care if I get weird looks from anyone. I won't be wearing it for any length of time unless I have to, but I'm wearing it when I go into places where there may be fragranced people (that's anywhere). I also called into our local library as I figured I had to start sometime. Once again, no big deal.
So, another planned outing that was successful.
My sister's friend has also enquired at her local medical practice, whether I would be able to go there, wait outside etc & has given the all clear, so I will make an appointment soon. They have a GP who specialises in allergies & there is a 2-week wait for her. I will feel much better if I know that there is a place I can go if I am sick or need a new prescription, without the visit making me sicker. I might just do that now.

I'm feeling pretty good today.
 
Thanks, LaMa. I won't be able to wear a mask for any length of time as it gets really hot. Obviously, you can't eat with it on, so restaurants are out for a while unless I can eat outside & away from other people. I'll work it out. I must have a look at their other masks. I need to have a couple so I can rotate them.
I have been getting ready for our couple of nights away. I am SO looking forward to it.
 
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