[NormaW]

I have had pcs for 2 and 3/4 years now. My car insurance company has deemed my totally disabled in terms of working and most of the medical professionals has deemed my prognosis as guarded to very poor.

I live in a three bedroom townhouse with three levels. I have tried employing a number of different strategies to help me cope with meals, housekeeping and parenting.

The long and short of it is I am barely coping. Although I tried to limit how often I go up and down the stairs, the stairs are tiring and consume a huge amount of energy. I try making a meal that will last 3 days so I cut down on meal preparation and the amount of housekeeping I am able to do is really pathetic. I have asked my 17 year to parent herself, I don't have the energy to keep up with her.

My house is in need of some repairs, along with the housekeeping I can not keep up with. My insurance will not provide funds for assistance. They ask "can you prepare meals", "can you do housework", "can you do other activities". You answer yes, but it is not like you can do it all in one day or event one week. Yes over the span of 2 months I can get the housework down, and I can make meals as long as I don't eat every day.

I am considering selling my house and buying a 2 bedroom apartment (brand new). I have 2 children still at home and have told the older child if I sell the house he would have to find somewhere else to live.

I want to put minimal furniture and distractions in the apartment so that I can create a calming and peaceful environment and something that would be really easy to keep up.

By cutting down on my activities of daily living, I am hoping to create some time and energy to work on more therapeutic activities (yoga, swimming etc.) I find it a huge challenge to fit in these extras and use up a lot of energy trying to negotiate day to day living into my life.

I have huge fatigue issues; I sleep usually 12- 14 hours a day; I have dizziness, nausea, significant vision issues (limited reading and watching t.v.), I still can not lift anything heavier than 10 - 15 pounds without an immediate increase to my headache and every carrying lighter things around fatigues me quickly.

I have already sold my tent trailer and my suv. I know I need to sell my kyak (I can't pick it up let along paddle it). Somehow I feel like I am slowly selling off my life, I think I can relate to elderly people who get put into an old age home because they can not take care of their home and watch their life fade away.

I am just wondering if anyone is at this stage and has gone through this process, I don't know if I am giving up too quickly, but I am trying to make decisions based on what information I have. I keep thinking I should try and hold on a little longer for the kid sakes, but I don't think I am doing a great job there. I am looking at yet another Christmas where I have not put a tree or decorations and still can put together a Christmas meal because it is too exhausting.

I would appreciate if anyone has any comments or feedback....

Lost in Ottawa .........

[Mark in Idaho]

Reducing the complexity and physical requirements of your living situation sounds like a good choice. It is tough to let go of things/activities that were meaningful parts of your life. I understand your dilemma and stress.

My best to you.

["Starr"]

Interesting post Norma and very much on topic with what's going on in my life too.

I am at a similar stage... my accident was Feb 2012 and my recovery has been negligible (to even call it "recovery" is silly, nothing has changed in almost 3 years!) and my rehab team is no longer hoping for any sort of progress. All my therapies and treatments have either been discontinued or will soon be discontinued just because nothing is helping and some are making things measurably worse.

Our current living situation is not ideal long term for me either, so my husband and I are starting to make arrangements to change that. We already live rurally, so it is quieter here than in town, but I still find that at some times of day the noise is too much.

Our house is a 150 year old, 2 storey with very steep stairs, with all the bedrooms and the shower upstairs. During the day, I try to stay downstairs as much as possible and minimize my trips upstairs to just going up once at night.

The stairs are a fall hazard as well as a problem for my fatigue. So generally I try to limit my showering to every other day, as I have to make an extra trip up to shower.

Where we live we are also isolated from both our families so our support is limited. There have been times in the last almost 3 years where having family nearby would've been very handy.

We are actually planning a huge move for next spring/summer. We are moving from Ottawa to south of Calgary to a more rural property with a newer bungalow on it. Everything I will need will all be on one floor. It is a much more remote property and will be much quieter. My husband's family lives there.

We'll also be moving our livestock across the country with us and the new property will have a barn that is better setup for me to care for my animals. My current setup is not well setup and cannot be easily changed without great expense.

It requires me to have much assistance from my husband to keep my livestock and while I did downsize my livestock dramatically after my injury, I refuse to give up my hobby farm completely, as its what I love to do and I already feel like I've lost so much. I'm not giving them up. But the new barn will make it much easier for me and hopefully less fatiguing as well.

I've spent the last year, whenever I've had any energy or could force myself, to downsize my possessions and just generally reduce the clutter in the house. Our house is now quite sparse and empty and I love it. Most of it I gave away to thrift stores, some of it I sold... I have more to go, I plan to make this move as light as possible.

Our new house will be substantially smaller than our current house as well, so I might as well get rid of things now, rather than move them and find there's no room at the other end, AFTER I've moved them all that way.

I'm not looking at this move and downsizing as giving up, I'm looking at it as I'm trying to find someway to make my life a little better when everything else has failed. I'm looking forward to trying to take some bit of control of this situation that seems so out of control.

I'm pretty sure that making this move won't fix me or my situation but if it improves my life even 5%, that would be the most amazing improvement I've had in 3 years.

The actual move and the logistics of moving 2 adults, 2 dogs and 6 livestock scares me and I know will make everything much worse for a while and I'm sure I will regret it more than once.

But I hate living here... dealing with the stairs, falling on the stairs... struggling with my barn setup... having no family support. So its worth the pain of moving and the EXPENSE (it won't be cheap!) but we've already spent so much money on various treatments and things related to my injury!!

And the way I figure it, I think "If I made this move and then I suddenly woke up one morning and was magically cured, would I regret the move?" My answer is no! I'd still be ok with living there.

I wish you the best Norma... I hope you can find the strength and energy to do what will help you in the long run.

Starr

[Galaxy1012]

Originally Posted by "Starr"

Interesting post Norma and very much on topic with what's going on in my life too.

I am at a similar stage... my accident was Feb 2012 and my recovery has been negligible (to even call it "recovery" is silly, nothing has changed in almost 3 years!) and my rehab team is no longer hoping for any sort of progress. All my therapies and treatments have either been discontinued or will soon be discontinued just because nothing is helping and some are making things measurably worse.

Our current living situation is not ideal long term for me either, so my husband and I are starting to make arrangements to change that. We already live rurally, so it is quieter here than in town, but I still find that at some times of day the noise is too much.

Our house is a 150 year old, 2 storey with very steep stairs, with all the bedrooms and the shower upstairs. During the day, I try to stay downstairs as much as possible and minimize my trips upstairs to just going up once at night.

The stairs are a fall hazard as well as a problem for my fatigue. So generally I try to limit my showering to every other day, as I have to make an extra trip up to shower.

Where we live we are also isolated from both our families so our support is limited. There have been times in the last almost 3 years where having family nearby would've been very handy.

We are actually planning a huge move for next spring/summer. We are moving from Ottawa to south of Calgary to a more rural property with a newer bungalow on it. Everything I will need will all be on one floor. It is a much more remote property and will be much quieter. My husband's family lives there.

We'll also be moving our livestock across the country with us and the new property will have a barn that is better setup for me to care for my animals. My current setup is not well setup and cannot be easily changed without great expense.

It requires me to have much assistance from my husband to keep my livestock and while I did downsize my livestock dramatically after my injury, I refuse to give up my hobby farm completely, as its what I love to do and I already feel like I've lost so much. I'm not giving them up. But the new barn will make it much easier for me and hopefully less fatiguing as well.

I've spent the last year, whenever I've had any energy or could force myself, to downsize my possessions and just generally reduce the clutter in the house. Our house is now quite sparse and empty and I love it. Most of it I gave away to thrift stores, some of it I sold... I have more to go, I plan to make this move as light as possible.

Our new house will be substantially smaller than our current house as well, so I might as well get rid of things now, rather than move them and find there's no room at the other end, AFTER I've moved them all that way.

I'm not looking at this move and downsizing as giving up, I'm looking at it as I'm trying to find someway to make my life a little better when everything else has failed. I'm looking forward to trying to take some bit of control of this situation that seems so out of control.

I'm pretty sure that making this move won't fix me or my situation but if it improves my life even 5%, that would be the most amazing improvement I've had in 3 years.

The actual move and the logistics of moving 2 adults, 2 dogs and 6 livestock scares me and I know will make everything much worse for a while and I'm sure I will regret it more than once.

But I hate living here... dealing with the stairs, falling on the stairs... struggling with my barn setup... having no family support. So its worth the pain of moving and the EXPENSE (it won't be cheap!) but we've already spent so much money on various treatments and things related to my injury!!

And the way I figure it, I think "If I made this move and then I suddenly woke up one morning and was magically cured, would I regret the move?" My answer is no! I'd still be ok with living there.

I wish you the best Norma... I hope you can find the strength and energy to do what will help you in the long run.

Starr

I am sorry for your struggles. I hope that you find relief soon. We are a family no matter what type.of brain injury we had. Just curious, how was your mri after the injury? Were you unconscious? Do.you travel?

["Starr"]

Originally Posted by Galaxy1012

I am sorry for your struggles. I hope that you find relief soon. We are a family no matter what type.of brain injury we had. Just curious, how was your mri after the injury? Were you unconscious? Do.you travel?

Galaxy, not sure if you are asking me or Norma, so I'll answer and then she can also.

My first MRI was 2 years after my injury and it did show some damage. I searched back through the forum for what I posted and this is what the report said:

"There is a single focus of blooming artifact in the mesial aspect of the left temporal lobe, at the level of the amygdala, not seen in the rest of the sequences. Given the patient's clinical history, this could represent a sequela of remote trauma / microbleed." They also noted a "Single nonspecific focus of T2 hyper signal in the subcortical white matter of the left frontal lobe."

I was not unconscious after my accident (which was a fall on my head off a horse) and I apparently seemed just fine for about 3-4 mins right after, but then I started to get confused and altered and staggered around and asked weird questions and stared off into space, repeated things and questions over and over. I have no memory of my accident or the 6 hours before or the approximately 12 hours after it.

As far as traveling goes... I have made a few car trips of about 5-6 hours in length over the last 3 years, one because my mother died and a couple others because the rest of my family lives that far away.

I have to take frequent breaks while driving, sometimes stopping for an hour and sleeping in my truck before continuing on. (I used to make the trip all at once, with no stops.)

I made one trip on the train that distance instead of driving because I was just too tired to drive, but the train was much worse with all the other people on it, they were too noisy and with my balance issues, I couldn't use the washroom on the train or move around while it was moving anyhow.

I've not flown yet since my accident but I think I will be soon. I'm sure that will be an adventure. I have balance and gait issues from my injury and walk with a cane, so long walks through airports will not be easy.

Starr