Tuesday, November 04, 2008

Tomorrow's another day

If there is one phrase guaranteed to make me laugh, even if only inwardly, it is “I don’t know how you do it”. I always laugh because, really, what choice is there? Not coping is a luxury that just doesn’t apply to disability. It’s a bit like running away, no matter how fast or far you go, you always take your problems with you.

Happiness is being able to find pleasure in the things around you, the hidden secret of the disabled world of course is that we have the luxury of time to take that pleasure. Being positive though is something different, and sometimes that can feel impossible.

Its all too easy to feel overwhelmed when dealing with multiple stressful situations, and as everyone will know, when that happens it becomes very difficult to keep away the normal niggles of self doubt. In my case that is feelings of inadequacy. Unemployment is well known for helping people to lose their sense of self worth and no matter how well much I believe that what someone does is no measure of who they are, in relation to myself, I can’t help but feel that it is.

I’ve never been bitter because I’ve worked hard to make sure I didn’t become so, but at times like now I find it so difficult not to be angry. I don’t mind having Ehlers Danlos Syndrome, I don’t see it as a why me, more why not me? I do mind what I was put through before I was diagnosed, and particularly how it’s impacted my life.

I’m now at that age where people have established their careers, and suddenly everyone seems to be having children. It doesn’t help that I come from an area, and particularly a family keen to link worth with status. It isn’t that I begrudge anyone what they have, but when I feel this way I begrudge the opportunities taken away from me.

I feel very vulnerable and very alone, not because of anything my friends have or haven’t done, but because ultimately, as we all are, I am on my own in this. And it’s a lonely place to be.

20 comments:

Fire Byrd said...

we are all alone, and I'm not saying that in some know all, there there way. More an acknowledgement of our existensial (sp) angst that we all have to own at some point.
And it's shit..... don't like it, but got no choice cause that's life leading to death.

Anonymous said...

On a positive note BG, I firmly believe that you out of everyone will find the happiness you deserve. A big virtual hug for you hun. Acheloisxoxox

CalumCarr said...

BSS

Thanks for this post which just drips with honesty.

With my own family's difficulties I could, theoretically at least, have run away but that was never an option and never will be. Some have said to me that they don't know how I cope but not coping is not an option.

Again thanks for this enlightening post.

Michelle said...

I could have written this myself. EDS is a very, very difficult condition on so many levels. Thank you for allowing me to feel like I am understood. :)

Michelle

steph said...

@ Michelle - I echo that!

Bendy,

I know right now you're feeling isolated but remember, you're not alone in this and never will be.

Big understanding hugs (((hugs))))

Casdok said...

People say that to me a lot to - I dont know how you do it. And i also laugh.
But it can also be very lonely. So i feel for you.
Hugs

BenefitScroungingScum said...

FB: You are so, so right ;) Aren't we all a cheerful bunch at the moment!

Achelois: Thank you honey, and hugs back at you! Hope all is well in your world?

CC: I've an amazing amount of respect for you for not running and all you do. Dunno how you do it though ;)

Michelle: I'm glad you feel understood, but not that you feel this way too. Chin up ;)

Steph: Thank you, hugs back x

Casdok: Thank god for the internet! I can't even begin to imagine how awful it must've been for ppl in our kinds of situation before. Hugs x

Rae!xx said...

We are all alone together in this wonderful blog world...(((hugs))) xx

Michelle said...

I feel better already!! Thanks to all of you. :) It's tough to be young and painfully disabled. I know we have our blessings too...like wonderful, compassionate blog friends! :)

Hugs right back at ALL of you!!

Michelle

Marla said...

People just love saying, "I don't know how you do it." My sister gets that all the time. I also get that in regards to my daughter.

It irritates me but I don't know what I would want them to say instead.

Hugs.

Trixie said...

Ah honey, I know how you feel. I may not have an illness, I may have a good job, great friends, fantastic kids, comfortable house... but I still feel alone.

No matter our situation, a lot of us are in the same boat.

Hugs to you from another lonely human being. xxx

transfattyacid said...

My son's granny has this thing that all children should be brought up the same - and be the same - because if they are the least bit different they will be subjected to bullying.

Which personally I dasagree with - but then I disagree with just about everything that comes out of her mouth.

So I kind of know where you are coming from, because it annoys me when people try to make out that the disabled are somehow special or different or whatever - when actually they are simply ordinary people who happen to have either a physical or mental disability.

All you can do is to manage as best as you can with the cards life has dealt you.

Mysterious G said...

HUGZ hun. Whilst perhaps physically alone, you are not alone completely, you have all these virtual friends sending you the hug vibe, and a few more corporeal ones too.

Reading through the comments here, you are clearly touching people and making connections.

I guess when people say "I don't know how you do it" its them venting awe, as they themselves do not imagine being able to cope in your situation, its not your disability that they are gawping at (well, unless you are jugging fire sticks topless whilst using your crutches as stilts :) ) but your sheer determination to not just give up. Its an impressive feat, I know, I have my own topless firestick juggler at home (tho if she burns the curtains again I am taking the firesticks off her!) and she awe's me regularly.

I genuinely don't know how she does it, and that's meant as a compliment.

Nicey said...

I think that we are vulnerable and alone at times in our lifes, just gotta hang on in there and belive in yourself, your a tough cookie and made of win, keep your chin up and take care

Nicey
x

LceeL said...

Oh, Bendy. I feel so badly for you. I wish I could give you a hug.

James Higham said...

Unemployment is well known for helping people to lose their sense of self worth and no matter how well much I believe that what someone does is no measure of who they are, in relation to myself, I can’t help but feel that it is.

I am there too, a newcomer to the ranks of the unemployed. I refuse to feel lesser or worthless. You are not either, Bendy Girl.

It's a down time, a space in time which could be better. There are friendships and the chin must stay high.

Hang in there and it WILL come right.

Achelois said...

Are you OK, BG?

Devonshire Dumpling said...

BG, are you Ok? Can you please report in to your blogging community that do understand what you are saying, care about you and are probably all equally concerned about you right now.

Mr. Nighttime said...

"Its all too easy to feel overwhelmed when dealing with multiple stressful situations, and as everyone will know, when that happens it becomes very difficult to keep away the normal niggles of self doubt. In my case that is feelings of inadequacy. Unemployment is well known for helping people to lose their sense of self worth and no matter how well much I believe that what someone does is no measure of who they are, in relation to myself, I can’t help but feel that it is."


I still get "Oh you are so lucky!" and "You are so fortunate!" and other platitudes in regards to my transplant. While I know I am all of these things, what people never saw was the depression, and the loss of the sense of who I was after this experience.

While I am employed, and thankful for it, there was a stretch of time like you are experiencing in which self-doubt was on the menu for breakfast, lunch, and dinner.

"I feel very vulnerable and very alone, not because of anything my friends have or haven’t done, but because ultimately, as we all are, I am on my own in this. And it’s a lonely place to be."

Even though career-wise, I am back on track, I still experience those moments of loneliness as well. Like you, unless there are others that have been down this road, there is no way anyone can understand what it is to have had a liver transplant, or to live with EDS. While talking to other transplant recipients helps some, (as I am sure talking to other EDS sufferers does for you) we both are still on our own, as each of our experiences with our respective conditions is unique. Even Mrs. Nighttime has never been able to understand what it is like, and that has been a source of other issues.

mr_colt said...

Something you might want to listen to before it gets taken down: http://www.bbc.co.uk/iplayer/episode/b00f9vnz/Incapacitated/

Unfortunately a lot of the speakers are the "work is good for you" types who think ESA is a godsend.

Wonder how long till the govt realise no companies will take notice of their "support programmes." It's just a way to get claimants to fail to meet their ESA targets as no one willo give them work. Then the DWP can cut their benefit off.