How are you today?
- Thread starter Auriel
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- DX FIBRO
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- 02/2020
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- Jun 8, 2021
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- 1,795
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- 08/2006
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- UK
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- UK
MissNeverWell
Active member
- Joined
- Oct 15, 2022
- Messages
- 76
- Reason
- DX FIBRO
- Diagnosis
- 03/1992
- Country
- CA
- State
- ON
I've had a couple of difficult days. The stress of moving to a new place can manifest itself in subtle ways, including emotional reactivity.
The weekend was good, although Saturday was extremely challenging in terms of organization, motor coordination and energy. I walked miles to the nearest grocery store, then when I got back received the okay to go overnight at my sister's so I could do my scheduled reading the the church the next day. I was exhausted, had to prepare to go out again and it wreaked havoc with my manual dexterity, motor coordination, organization and energy, especially having to go out to St. Catharine's by public transit (train and bus) and have my sister's partner pick me up there.
The bus system here in Oakville is not much better than St. Catharine's and I feel stranded in the middle of nowhere because I can't drive. Not only that, the mandatory requirement to connect a vent to the outside for air circulation is backfiring, because I smell wood burning smoke/scented logs (I'm assuming that's what they are) throughout the building, from the outside but I'm sure also inside from the "gas" fireplace which has its own toxic gasses. It's particularly bad from one of the large air vents on the fourth floor, which is where I am, as well as the ground floor.
It is a home for seniors, and they have a common room with social activities, and the fireplace is often lit, particularly during coffee hour. If I get close enough to it, just like at my sister's place, I feel it affecting me - mouth and nose gets dry and irritated and I sometimes get a tingling on my tongue.
The place is a seniors residence, so I went down for coffee hour to break the isolation, but the layout is not conducive to a good experience for hearing impaired. High ceiling, long line of arm chairs on either side, carpeting and many side conversations. Despite my hearing aids I couldn't process any speech, it was sheer pandamonium. For some reason I just broke down and started crying and left. It's one more barrier to social participation, one more problem to add to the mix.
That on top of participating in the exercise class and, as validating as it was, still disturbing because the facilitator recognized my balance problems. He offered short one-on-one sessions to address it, so I asked if someone at his agency could fill out part of the form involved in applying for Carevan (door to door transportation for disabled). I wasn't going to apply for it at first because I assumed it was for mobility impairment only, but I realized I had considerable trouble with balance on the bus, hearing the stops, understanding directions from the bus driver and spatially orienting myself when I got off (related to the visual perceptual/spatial/motor learning disability). In these respects, I was as eligible for transportation accommodations as any mobility impaired customer. Being now officially a senior citizen just adds to the adjustment required for all the changes that are happening. I'm feeling very sorry for myself today, and sheepish for being so reactive. However, I made bread and did a half hour of yoga in the exercise room, which you have to book in advance because only one person can be in there at a time.
The weekend was good, although Saturday was extremely challenging in terms of organization, motor coordination and energy. I walked miles to the nearest grocery store, then when I got back received the okay to go overnight at my sister's so I could do my scheduled reading the the church the next day. I was exhausted, had to prepare to go out again and it wreaked havoc with my manual dexterity, motor coordination, organization and energy, especially having to go out to St. Catharine's by public transit (train and bus) and have my sister's partner pick me up there.
The bus system here in Oakville is not much better than St. Catharine's and I feel stranded in the middle of nowhere because I can't drive. Not only that, the mandatory requirement to connect a vent to the outside for air circulation is backfiring, because I smell wood burning smoke/scented logs (I'm assuming that's what they are) throughout the building, from the outside but I'm sure also inside from the "gas" fireplace which has its own toxic gasses. It's particularly bad from one of the large air vents on the fourth floor, which is where I am, as well as the ground floor.
It is a home for seniors, and they have a common room with social activities, and the fireplace is often lit, particularly during coffee hour. If I get close enough to it, just like at my sister's place, I feel it affecting me - mouth and nose gets dry and irritated and I sometimes get a tingling on my tongue.
The place is a seniors residence, so I went down for coffee hour to break the isolation, but the layout is not conducive to a good experience for hearing impaired. High ceiling, long line of arm chairs on either side, carpeting and many side conversations. Despite my hearing aids I couldn't process any speech, it was sheer pandamonium. For some reason I just broke down and started crying and left. It's one more barrier to social participation, one more problem to add to the mix.
That on top of participating in the exercise class and, as validating as it was, still disturbing because the facilitator recognized my balance problems. He offered short one-on-one sessions to address it, so I asked if someone at his agency could fill out part of the form involved in applying for Carevan (door to door transportation for disabled). I wasn't going to apply for it at first because I assumed it was for mobility impairment only, but I realized I had considerable trouble with balance on the bus, hearing the stops, understanding directions from the bus driver and spatially orienting myself when I got off (related to the visual perceptual/spatial/motor learning disability). In these respects, I was as eligible for transportation accommodations as any mobility impaired customer. Being now officially a senior citizen just adds to the adjustment required for all the changes that are happening. I'm feeling very sorry for myself today, and sheepish for being so reactive. However, I made bread and did a half hour of yoga in the exercise room, which you have to book in advance because only one person can be in there at a time.
BlueBells
Senior member
- Joined
- Aug 1, 2023
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- 278
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- DX FIBRO
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- 12/2019
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- VI
Hi @MissNeverWell
Lots of hugs,
I hope the Carevan can be organised for you.
Disappointing you are off to a rocky start, I hope you settle in and find it a very rewarding to be there.
All I can offer are hugs
Lots of hugs,
I hope the Carevan can be organised for you.
Disappointing you are off to a rocky start, I hope you settle in and find it a very rewarding to be there.
All I can offer are hugs
- Joined
- Jun 8, 2021
- Messages
- 1,795
- Reason
- DX FIBRO
- Diagnosis
- 08/2006
- Country
- UK
- State
- UK
I wish there was a hug button @MissNeverWell from your post reading, you're really REALLY trying your best with thing's (and I can only commend that) PLEASE PLEASE have a break/rest when you can (cos between all the walking AND the stress of a house move, it's bound to have an effect on you/the fibro 
- Joined
- Jun 8, 2021
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- 1,795
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- DX FIBRO
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- 08/2006
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- UK
HAPPY VALENTINES DAY EVERYONE!!!
To me today doesn't just have to be about partners (it can be about people you care for and have a kinship/fondness for, so there we are)
MissNeverWell
Active member
- Joined
- Oct 15, 2022
- Messages
- 76
- Reason
- DX FIBRO
- Diagnosis
- 03/1992
- Country
- CA
- State
- ON
Thank you, Aurel! I felt more relieved after learning from another forum on hearing loss that one sided deafness does affect auditory perception. While still isolating, depressing and frustrating, at least it's likely that there isn't some kind of new neurological condition affecting speech processing. Of course I'll check it out with a doctor once I get one along with a referral to an ear, nose and throat specialist. I was able to go to the lake and take some photos, and with the exception of exposure to toxins that made me miserable, it was a pleasant, sunny day and I was so happy to be out with my camera again, minus the tripod which I usually carry.I wish there was a hug button @MissNeverWell from your post reading, you're really REALLY trying your best with thing's (and I can only commend that) PLEASE PLEASE have a break/rest when you can (cos between all the walking AND the stress of a house move, it's bound to have an effect on you/the fibro
MissNeverWell
Active member
- Joined
- Oct 15, 2022
- Messages
- 76
- Reason
- DX FIBRO
- Diagnosis
- 03/1992
- Country
- CA
- State
- ON
Thank you bluebells (nice user name, I like those flowers, have some photos of them). I received the Carevan application today, so the next hurdle is getting someone to fill out the medical section. It's not as rigorous as Ontario Disability Support Program which automatically denies you at least once or twice and requires detailed assessment reports from specialists. I just wish I could be more balanced when it comes to interpersonal relations. It's like that nursery rhyme "when she was good, she was very, very good, and when she was bad, she was horrid", lol.Hi @MissNeverWell
Lots of hugs,
I hope the Carevan can be organised for you.
Disappointing you are off to a rocky start, I hope you settle in and find it a very rewarding to be there.
All I can offer are hugs
- Joined
- Jun 8, 2021
- Messages
- 1,795
- Reason
- DX FIBRO
- Diagnosis
- 08/2006
- Country
- UK
- State
- UK
Hope we get to see some one day
do let us know how you get on when you get e.n.t appointment (you're doing really well considering missneverwell) 
