As I sit here broken hearted about the way things used to be, skiing, cycling, walking, talking normal, working, and the list goes on depicting an active lifestyle. I can’t help but wonder about all those that are in worse shape than me. A friend once told me that if we wrote all of our problems on a piece of paper and placed them in a basket, each taking a turn at picking a piece of paper out and coping with that problem, we’d wish for our own problem back.
Often we get some sort of satisfaction from hearing of others problems (not all of us) no matter what the issue, we all seem to have that sympathetic gene.We must be pre programmed to lend an ear to others. I find often times I get so wrapped up in hearing about others problems, I forget my own.
The other day I had my six month visit with my neurologist, I know certain things about my condition are becoming worse, however, when she questioned how I was, I couldn’t help but reply “just fine”. I guess I’m one of those who will put others’ problems first. I even commented to her that I knew there was people in worse shape than me, so I shouldn’t complain.
The truth is there are folks that spend so much time and energy listening and caring for or about others’ that they often forget about their own well being. Today, my hat goes off to those who set their own life a side for others. Especially on this site I see total strangers helping each other, and although it may not seem like much, it really does matter.
Keep posting!
Or as Denis W. once said - I had the blues because I had no shoes until upon the street, I met a man who had no feet.
Yesterday, I saw a report on TV about the ‘Invictus Games’. It focused on someone who was ex-army and had been severely injured. After I’d watched it, I had no words, just admiration 
xB
Hi Hutchy, the thing is that we will all find people worse off than us in all things but that doesn’t mean that we don’t feel bad about our lot.
I have disabilities and long term illnesses and often feel very low about them but then I think of my daughter who is 20. She has ARSACS a very rare form of spinocerebellar Ataxia. She is also Autistic. Unlike me she has not had a life as she has been affected by her conditions since she was a young baby. She won’t be able to live alone, she can’t go out on her own with friends and in fact only has online friends because of this. She didn’t achieve any exams at school and can’t cope with college or work. She can’t shower herself or dress herself, She won’t get all the chances I had, she won’t marry or have children, she’ll never work. All the while her condition will continue to progress and she will be in pain and when I think of her I feel bad moaning about my pain and disability.
But, as I said, we all have the right to feel bad about our lot because it isn’t easy to be us either. We are allowed to feel sad and to feel angry at what is happening to us.
It is important for us to talk to each other how we feel and to seek support and understanding at times and that is ok.
It’s true there are always people who are much worse off than us but we have to cope with our lot.
Take care
April
Agreed April, brings to mind also the differences of “once having” and “never having” I think both are equally as saddening. I always preach to folks who complain about having to work each day, “just imagine you can’t” or folk that never experience a love life because it is too difficult to find someone compatible. I count my blessings each day that I found a partner to care for me, knowing my condition, and what lies in the road ahead. I can"t help but feel for those who don’t have the same, or may ever experience the same.
Take care
Dave
Hi Dave, I’m really pleased that you have a supportive partner. I’m Ella’s full time carer and shower and dry and dress her etc. But it’s hard because I’m long term sick and disabled myself and I’m finding it harder and harder to do that. I do have a few hours of care for her but often she needs a shower on a day I have no help. I try not to complain but there are times it drags me down. She can’t be left alone for any time either so getting chance to go out is very rare. I sound like I’m whinging so I’ll stop. Anyway, you take care of yourself.
April
Hi April Hats off to you. Coping with challenging conditions yourself, and still giving care to your daughter, that’s mothers for you I hope you’re getting the maximum outside support that’s available xB
hi Dave, just been reading your post and others too. I think of the things I used to do,working,talking,writing,cleaning,washing and dressing,looking after sick people. Now I cannot do anything,I feel so sad and a burden, I try to keep thinking positively about the way I am now to the way I used to be but I feel so alone and unhappy. I know I am feeling sorry for myself but it for myself gets me so down. I wish I could think positively, but all I can think of right now is, what next, how will i cope? Sorry for being so negative I just needed to SHOUT OUT LOUD take care. Joan x
Some days are definitely worse than others. Last night I slept soundly on the sofa for 2hrs before my husband finally roused me to go to bed. Against the odds, I slept soundly through the night until well after 8am this morning 
It’s almost lunchtime and I’m overwhelmed by ‘brain fog’ 
For me, usually the result of too much sleep. It’s difficult when fatigue kicks in and sleep just overcomes you. On the plus side, it’s a beautiful autumn day, fresh air might just be the answer 
xB
Joan, I guess it’s too easy to dwell on the past. As far as i’m concerned, we should be allowed to feel negative/sorry for ourselves.
I too sometimes feel like a burden to others, however, I try to move past that. It’s so hard sometimes. There are days when I just want to give up, I want this to be over. But then I try to let the positives take over. I feel we need to focus on the things we can do, maybe something we’ve never tried before. Often I think we are so wrapped up in the “can"ts” we forget about the "cans"
I encourage you to think about something you can do, maybe with your hands, a computer or something either way just try to occupy your mind with something positive. Help another, even ifi t’s just by chatting on here, but don’t forget to look out for your self.
Take Care and be well!.
Dave.
P.S. I’m happy to chat, anytime you want.
Thanks for replying Dave I just felt so down that day, even my husband and children are fed up of me, I feel sometimes I am being punished for something,and WHY ME ? well why not me ? I wouldn’t wish this on my worst enemy. I was diagnosed when I was 58, I am now 65 and in those few years I have gone from being active and working to this. By this I mean I cannot walk, write, talk properly,dress,wash,cook,clean, drive, the list is endless. Sorry for moaning I know there are people worse than me, I just needed someone to let off steam to and to say I’M HERE ANYONE.
hutchy-10
September 25 |
Joan, I guess it’s too easy to dwell on the past. As far as i’m concerned, we should be allowed to feel negative/sorry for ourselves.
I too sometimes feel like a burden to others, however, I try to move past that. It’s so hard sometimes. There are days when I just want to give up, I want this to be over. But then I try to let the positives take over. I feel we need to focus on the things we can do, maybe something we’ve never tried before. Often I think we are so wrapped up in the “can"ts” we forget about the “cans”
I encourage you to think about something you can do, maybe with your hands, a computer or something either way just try to occupy your mind with something positive. Help another, even ifi t’s just by chatting on here, but don’t forget to look out for your self.
Take Care and be well!.
Dave.
P.S. I’m happy to chat, anytime you want. Visit Topic or reply to this email to respond.
In Reply To
jojo
September 23 |
hi Dave, just been reading your post and others too. I think of the things I used to do,working,talking,writing,cleaning,washing and dressing,looking after sick people. Now I cannot do anything,I feel so sad and a burden, I try to keep thinking positively about the way I am now to the way I used to… Visit Topic or reply to this email to respond. To unsubscribe from these emails, click here.
Like symptoms, these sort of feelings often come and go. Knocking them on the head can sometimes take some imagination Suggestions of ‘how to occupy your mind’ by being engrossed in a practical distraction, can often help to lift a mood Other forms of distraction would probably work better when a person has severely limited mobility
On really bad days, when all I have the energy for is keeping myself safe, and seeing to the needs of my cat, it relaxes me if I just zone out and catch up on TV Admittingly it’s not everyone’s first choice but really it is just a case of finding something that works for you until the fog lifts
I visited my Uncle at the weekend, he’s lost mobility, and his grip on reality, he’s totally dependant 24/7. He’s family and I love him, he just needs ‘extra care’ xB
Thank you for your post. I do have to reminder myself that there are people who are in more dire situations. I have to say every day " keep going, keep trying"! So I have to use a walker every day… I just have to keep using it until I can’t. Thank you for reminding me that we all still have some strength… somewhere.