at the moment i find it hard to look after myself.waking up through the night,thoughts banging into each other
and just find im slipping back into not caring about ones self.
think i will give this fight up,i know i have been strong and a fighter all along on this forum but you get to that stage when you feel beaten.
feel like a loss cause!!
janine,
I read your post and had to reply.
It's dreadful when someone says I know how you feel and what you are going through. God , I hate that phrase.
I've been through some pretty rough times myself and pulled through and so can you.
I don't know if you know anything about me , you can read my story of
"My unwanted friend" here . http://www.rewritetomorrow.eu.com/reflections/personal-stories/my-unwanted-friend/
I'm not posting this to get publicity , I don't need it.
But if I can pull through a difficult time or period , I just know you can too!
It's hard but don't give up the fight.
I now live independently, I have a quality of life because others helped me, but then I also had to help myself.
You are in my thoughts.
Stay safe and strong.
Believe me you can do it.
ncn.
I read your post and had to reply.
It's dreadful when someone says I know how you feel and what you are going through. God , I hate that phrase.
I've been through some pretty rough times myself and pulled through and so can you.
I don't know if you know anything about me , you can read my story of
"My unwanted friend" here . http://www.rewritetomorrow.eu.com/reflections/personal-stories/my-unwanted-friend/
I'm not posting this to get publicity , I don't need it.
But if I can pull through a difficult time or period , I just know you can too!
It's hard but don't give up the fight.
I now live independently, I have a quality of life because others helped me, but then I also had to help myself.
You are in my thoughts.
Stay safe and strong.
Believe me you can do it.
ncn.
Janine, sorry you are so down. Have to go out today but will p/m you later.
JC
JC
Hi Ncn.
thank-you so much for your post and reply in the small hours of the morning, i am finding it difficult at the moment because im not on any meds .one nurologist ive had for 13 years dx straight away and then recently had a different opinion so im in limbo and with christmas coming up im thinking of my dad which is 1 year on the 27th dec .so i feel abit lost
i,ve read your storey :my unwanted friend: and was very moved by it and the struggles you have gone through.my troubles are nothing after reading and i have not excepted pd,my thoughts are with you now and very grateful for your respone
take care and best wishes
thank-you so much for your post and reply in the small hours of the morning, i am finding it difficult at the moment because im not on any meds .one nurologist ive had for 13 years dx straight away and then recently had a different opinion so im in limbo and with christmas coming up im thinking of my dad which is 1 year on the 27th dec .so i feel abit lost
i,ve read your storey :my unwanted friend: and was very moved by it and the struggles you have gone through.my troubles are nothing after reading and i have not excepted pd,my thoughts are with you now and very grateful for your respone
take care and best wishes
hello Janine,
So sorry to read that you are so down. This time of the year is hard for so many people. I found that, after losing my niece to cancer (age 11) so many years ago, that my best Christmas was doing work for the poor, in a volunteer manner. It gave me a bit of the Christmas spirit. I do hope too, that they get you back onto meds soon.
I will lite a candle and say a prayer for you today....and each day, during the Christmas season. Know that we are thinking of you, and care.....
So sorry to read that you are so down. This time of the year is hard for so many people. I found that, after losing my niece to cancer (age 11) so many years ago, that my best Christmas was doing work for the poor, in a volunteer manner. It gave me a bit of the Christmas spirit. I do hope too, that they get you back onto meds soon.
I will lite a candle and say a prayer for you today....and each day, during the Christmas season. Know that we are thinking of you, and care.....
Thanks nonameme,thats means alot!
janine i totaly agree with ncn the hole thing i no hows u feel
heard it so many time,but agin i bin through the mill and come out of it for different reasons just like ncn and many othersu need massive hugs janine and i give erm to u ,but it will get beter and u will pull through ,have u got a good family around u? or close friends to helps uand u no u have all ur friends on this forum as well x
heard it so many time,but agin i bin through the mill and come out of it for different reasons just like ncn and many othersu need massive hugs janine and i give erm to u ,but it will get beter and u will pull through ,have u got a good family around u? or close friends to helps uand u no u have all ur friends on this forum as well x
Hi all
Janine I hope things are better. See you have got Xmas nearly sorted on other thread.
I'm a bit worried. O/h is not good. He can't explain it but despite an increase in meds which has changed things to a degree i.e he was having trouble saying what he wanted to, was a bit confused yet aware, if that makes sense and looked a horrible grey colour.
His colour changed after increase and his cognition improved but now he says he feels fragile and shaky and his movements are very poor indeed.
Do you think it's the cold folks?
My own pain has increased a lot which I'm sure is down to the low temps.
Janine I hope things are better. See you have got Xmas nearly sorted on other thread.
I'm a bit worried. O/h is not good. He can't explain it but despite an increase in meds which has changed things to a degree i.e he was having trouble saying what he wanted to, was a bit confused yet aware, if that makes sense and looked a horrible grey colour.
His colour changed after increase and his cognition improved but now he says he feels fragile and shaky and his movements are very poor indeed.
Do you think it's the cold folks?
My own pain has increased a lot which I'm sure is down to the low temps.
.
I think the cold stiffens everything (well, nearly everything
) up, including brain function. I feel I operate better indoors than out in the otherwise-beautiful snow.
R.
.
I think the cold stiffens everything (well, nearly everything
) up, including brain function. I feel I operate better indoors than out in the otherwise-beautiful snow.R.
.
Thanks for that Ray
It helps to know what you're dealing with. The forecast said no snow today. Wrong again! Yesterday it said light snow. 2" fell in 30 mins!!
I'm amazed you can think it beautiful considering the amount you are dealing with up there. Me too. I love it but not the inconvenience it causes others. I won't be too happy if our families can't reach us on Xmas day!
It helps to know what you're dealing with. The forecast said no snow today. Wrong again! Yesterday it said light snow. 2" fell in 30 mins!!
I'm amazed you can think it beautiful considering the amount you are dealing with up there. Me too. I love it but not the inconvenience it causes others. I won't be too happy if our families can't reach us on Xmas day!
hello JC, Ray, Janine, and all,
Wow! Saw the snowstorms on our news tonite, that you are dealing with over there....look just awful (tho beautiful, as Ray said)...must be very hard to keep warm, when the wind howls, and the temps go so low. I recall the last big storm in NH, and Maine couple years ago...was just terrible. We had friends that got flooded, then everything iced up, causing a major ice storm, where they had no electricity for 3 weeks. Many homes were ruined, and folks had to go into sheltered schools, and public buildings to survive. Pictures of your area (now) look like their photos from that time.
Hope you are all finding ways to keep warm. We had some of it here, but it was not as bad, and we kept our electric.
Been using my cpap machine...dont know if anyone here on the postings has one, but it is taking time to get used to it. Makes me feel awful...to need this help. But I am finding that I breathe better already, so am able to get things done with less effort now. Just hope it continues to improve my functioning. Know that things will get worse down the road...already having more muscle spasms, etc., but at least my energy level is better.
will check games now.....
Wow! Saw the snowstorms on our news tonite, that you are dealing with over there....look just awful (tho beautiful, as Ray said)...must be very hard to keep warm, when the wind howls, and the temps go so low. I recall the last big storm in NH, and Maine couple years ago...was just terrible. We had friends that got flooded, then everything iced up, causing a major ice storm, where they had no electricity for 3 weeks. Many homes were ruined, and folks had to go into sheltered schools, and public buildings to survive. Pictures of your area (now) look like their photos from that time.
Hope you are all finding ways to keep warm. We had some of it here, but it was not as bad, and we kept our electric.
Been using my cpap machine...dont know if anyone here on the postings has one, but it is taking time to get used to it. Makes me feel awful...to need this help. But I am finding that I breathe better already, so am able to get things done with less effort now. Just hope it continues to improve my functioning. Know that things will get worse down the road...already having more muscle spasms, etc., but at least my energy level is better.
will check games now.....
Hi nnme.
Really glad you're coping better with the machine and have more energy.
Keep well
Really glad you're coping better with the machine and have more energy.
Keep well
feeling that my pd is not controled enough and my whole right side is shaking and wont keep still.i hate it when this happens its very upsetting and im at a lost cause im not on any meds yet.i have such a hate for my pd and find it very difficult like everybody else does.its hard to do any work or chores when im like this.
take care everyone
take care everyone
heard this on the radio:
The Esperanto of self-pity, the epitomy of passive aggression: 'Nothing's the matter, I'm fine'
The Esperanto of self-pity, the epitomy of passive aggression: 'Nothing's the matter, I'm fine'
Hello all.
O/h and me are seriously shattered. Four days of slog have really knocked us out. It was a bit like Custers last stand, except that we're still here.
With naps in between o/h helped a lot and I plodded on. Truth is, it was very difficult. I felt an awful lot that I just couldn't go on yet would not give in. Now it's pay back time. Lot of pain and fatigue going on.
We just had to do the big family thing for one last time. It was great, we had a wonderful time with respective family members who as ever pitched in.
Hubby looked very poorly a lot of the time, and it was noticed. Through sheer fatigue he was often disorientated and it might seem an awful thing to say but I'm glad his family saw him at his worst.
For all you carers out there, and people like me with problems of their own who feel afraid of the future, never be afraid to voice your feelings. There is always someone here to listen and empathise.
O/h and me are seriously shattered. Four days of slog have really knocked us out. It was a bit like Custers last stand, except that we're still here.
With naps in between o/h helped a lot and I plodded on. Truth is, it was very difficult. I felt an awful lot that I just couldn't go on yet would not give in. Now it's pay back time. Lot of pain and fatigue going on.
We just had to do the big family thing for one last time. It was great, we had a wonderful time with respective family members who as ever pitched in.
Hubby looked very poorly a lot of the time, and it was noticed. Through sheer fatigue he was often disorientated and it might seem an awful thing to say but I'm glad his family saw him at his worst.
For all you carers out there, and people like me with problems of their own who feel afraid of the future, never be afraid to voice your feelings. There is always someone here to listen and empathise.
My o/h carer & I did well this year. i started things, he finished the job. eg I got the lights out, he put them up. I laid the table, he did the cooking. I chose the wine, he opened it. Our oldest friends (in time, not years) travelled 150+ miles to visit us on Xmas Eve. The husband spent hours closeted with o/h in the music room whilst wife & I put the world to rights. They have extracted a promise from o/h that he will (forcibly if necessary) bundle me into the car and visit them on their farm in the Spring
JC, if you do not mind me asking - who cares for you. Obviously your husband & family do, but I mean re your own neuro difficulties? It just seems to me that you have a lot on your plate & could do with a helping hand
With best wishes
JC, if you do not mind me asking - who cares for you. Obviously your husband & family do, but I mean re your own neuro difficulties? It just seems to me that you have a lot on your plate & could do with a helping hand
With best wishes
Bless you A/b for thinking of me. I was monitored by a neurologist annually but thanks to the financial cuts he suddenly (after telling me he wouldn't) discharged me.
After a recent visit to an orthapaedic surgeon, who said that the ruptured cartilage in my knees was being caused by my neuro condition(constant falls)and announced firmly that I insist on continued monitoring which he would impress upon my GP anyway.
To be honest, I see a lot of consultants, because my five head injuries caused multiple spin off conditions and having one less was I felt, a bonus at the time.
After a recent visit to an orthapaedic surgeon, who said that the ruptured cartilage in my knees was being caused by my neuro condition(constant falls)and announced firmly that I insist on continued monitoring which he would impress upon my GP anyway.
To be honest, I see a lot of consultants, because my five head injuries caused multiple spin off conditions and having one less was I felt, a bonus at the time.
just feeling alittle low at the moment,one thing and another cannot seem to turn the corner and get beyond a point where im getting anwsers from consultants or from me.is it me holding myself back!!...pd everything all mixed up.