Housing query

[LEEJUNFAN]

Hi everyone!

I've previously posted on here about trying to get the housing to give us a Bungalow due to my issues with noise as we're in a 2nd floor flat.

My husband has physically tried everything in his power to convince them I need a place that offers me more of

a quiet place.

Medical letters, GP letters, two appeals from our MP and even our local Councillor recently had a meeting with our local housing office.

They still remain adamant that a bottom floor flat or a higher one with a lift

is sufficient but there's no way I'm going into a flat again due to the issues we've already had in them.

We recently bidded for a Bungalow with a different housing association and there was no age limit on this one.

We was in the top five but didn't get it.

My husband phoned and explained that he has a working connection as this Bungalow was just across the road from where he works and it would mean that he wouldn't have to consider leaving his job as he could just pop over on his break to see how I was doing.

This still didn't change things.

I appreciate that there's people worse off who deserve a Bungalow but I often think that these Bungalows are already earmarked before they're advertised.

Sorry to go on about this but how bad do we have to be before we're considered

to have something that will give us at least a better quality of life.

A nice and quiet home would help my symptoms so much.

Best wishes all!

Kim xx

[Rachh8]

I can understand how you feel completely. I wonder if perhaps a private landlord might be easier? I know that can cause more financial constraint but it is another option which I chose. thankful for my place which is quiet by the grace of God and makes a big difference. I used to work for a council and I know that they're very tough because people want to move to different better locations all the time. For a whole host of reasons including harassment from neighbours and things like that. I've seen horrid stories. Sometimes it's better to step outside the system perhaps anyway I'm praying for a good outcome for you God bless x

[LEEJUNFAN in reply to Rachh8]

Hi Rachel!

Thank you for replying.

You're correct in that private housing maybe the last option.

We'll have to look into it.

As you say, it's more expensive which is what stopped us last

time a private property

came up which was next

to our friends.

Kind regards.

Kim xx

[Tewa]

Kim,

I am so sorry to hear of your struggles with housing. And, I fully hear and understand your need for quiet. The sensory overload I experience with noise and too much of any stimulation exacerbates all of the symptoms. This is very hard for others to understand..especially when we live in a world where incoming noise is part of life, even in restaurants. I live in the US, in Virginia. I can't eat in most restaurants due to the high volume of the music. And, in my living space, cannot tolerate heavy duty noise from other tenants. I do have a first floor, quiet apartment now. May I say some prayers for you for getting a bungalow?

Johanna

[LEEJUNFAN in reply to Tewa]

Hi Johanna!

Many thanks for your reply.

Virginia, that's a long way

from here isn't it!

Is it nice there?

Keep in touch.

Best Wishes!

Kim xx

[Tewa]

Yes, Kim, Virginia is a long way from you...in UK? On the eastern part of US. I am in the beautiful Blue Ridge Mountains and Shenandoah Valley. It is very beautiful here.

I was living in Montana, in the Rocky Mountains, and moved back here last June due to this health issue. While out west, I had to travel over nine hundred miles to go to a specialist. And..no one out there knows anything about FND. All label this problem as psychological and the neurologists are very disrespectful. The US is so far behind UK, Scotland in identifying this disorder. Know that even in UK and Russia still some hard challenges with docs understanding and giving proper and respectful treatments and care. I was so lucky to find a knowledgeable, good and kind neurologist at University of Virginia Health Systems in Charlottesville, VA, about two hours south from Luray, Va, where I live. Also have a good Primary Care Physician and urologist.

I have gotten so much support and understanding from this site. I don't feel so alone now.

Best to you also.

Hugs, Johanna

[LEEJUNFAN in reply to Tewa]

Hi Johanna!

Do you wish to exchange

e-mail addresses?

We can stay in touch

a lot more and discuss things.

Mine is as follows:

[e-mail]

Send me a message there

if you wish to.

I've met some lovely friends

on this site.

Hope to speak soon!

Lots of love

Kimxx

[Tewa in reply to LEEJUNFAN]

Good Morning Kim,

Yes, I would like that too! It will be good to share more about life with FND and how we can give support and help. Mine is [e-mail]. I will send you a message later today.

Love,

Johanna

[cgarff in reply to Tewa]

Hi johanna, where in Montana did you live, and where did you go to see a doc? I live in utah, and completely agree finding someone here in the West is a joke. I had a doc here that could diagnise, but not treat, and he was out of network, so very expensive. In Dec. He moved to arizona, so now I am stuck trying to find a Neuro in network, all the while being told there are none at this time. Would like to know where you went.

[Tewa]

Hi ,

I lived in Livingston. Went to Salt Lake City to University of Utah Hospital. The attending doc walked into the examination room and said"well, you don't have ALS or you would be dead by now." Really! She and the intern did want to schedule additional tests with a follow-up appt. I wasn't able to go back as it was 930 mile round trip from Livingston. For that trip I paid all of the expenses, gas food , lodging, for a friend who drove me. We had to stay overnight. We went in January and you know how the weather is out there in January.

The care and attitudes out west are awful with the neurologists., and some other medical professionals. Pompous, disrespectful and dismissive...of course attributing symptoms to psychological even after I showed them letters from therapists, psychologists and psychiatrist stating my physical issues were not due to emotional conflicts manifesting as physical symptoms.

I had a very good urologist, who sent me to a neuro-urologist, Primary Care Physician, Pain Management Specialist, Physical Therapist, OT, Rheumatologist, and Social Worker who believed I had a neuro-muscular disorder. Without their support, I can't imagine how I would have coped. I was so stressed all of the time and the miss-care i received only made it worse.

My PCP and Rheumatologist made the recommendation that I return to Virginia for better care and to be closer to major medical centers. Also for more support from family and friends. My PCP told me that I was dealing out west, with Frontier Medicine. If you go to University of Utah, I do hope you have better treatment and experience.

Where in Utah do you live? I had a friend in Montana, a man who went though similar experiences, getting a diagnosis, (MS) then not. He went to University of Utah, got MS confirmed. He told me his neurologist has MS. Now he goes for follow-up visits with this same neurologist, and is receiving good care.

I think that once a neurologist makes a determination of conversion or psychosomatic disorder, then the patient is seen though a filter... then 'cherry picks' symptoms to support that diagnosis. Also this diagnosis and filter makes it difficult for other docs to approach the patient from a different perspective.

Good wishes for some help. Let me know how I may be of help. I can give you the name of the attending doc. You may have a better experience with her?

Johanna