coping

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Andy
Posts: 856
Joined: Sat Apr 24, 2004 1:02 pm
Location: Cardiff, Wales- now Christchurch New Zealand

coping

Post by Andy »

I thought I would write all this now as I have just had a go at some body who means alot to me, and they were moaning away as we all do and I kinda went off at him (I'm Sorry!!).
He then tried to apologise and in the typical teenager way, I decided that I would just ignore him and try not to say any thing.
He then said "I dont know how u cope"? And now I'm sat here thinking about this question.....
I tell my self I have to cope because other people need me, they need me to be strong, im pretty sure that if I started to let myself down then it may affect my family, so thats why I try to stay strong.
At the moment in my life things are changing. All my friends are off to uni- where I should be but because of everything i'm stuck here at home with another year to go!! Yeah i am ONLY a year behind but it is different, I alk in to the common room, and no one smiles at me and says "Hi". I have no resorted to taking sandwiches and going to the IT room to get on with my projects!
I have been lucky today- I have understanding people who look after my legs, and they have let me have a pair or crutches so I can get back and forth to my lessons.
I spose I cope because I know that there are people worse off than myself. Everytime I feel like poo, or just want to cry I think of a handful of people and they seem to make me feel better, and I thank myself that Im not in their shoes but at the same time i pray for them with everything I have. Rachel (US), Rachael (UK), Jman, Old Borris, to name just a few. But everytime I close my eyes I think of everyone who comes here, on chat, my friends who are moving on, (and although they are excited I know most of them are so scared). I just think, WOW!!! these people are great, these people fight against the world and all it throws at them!! They are good people and I love them all to bits, and yet deep down, this is the reason why and how I cope because I am "SO" lucky as I have my life, i do what I want and I am young enough to change any thing that I dont like in my life. Change the things for the better!!

Don't ask me why I wrote this but this is it down on paper, it is probably a load of rubbish to you, but yet when I read through it, its there and its how i feel and its also how i cope. So to those of you that help me cope, thanks and Im so grateful!!

Cheers
Andy
We are the way we are, if we werent, I wouldnt be me and you wouldnt be you!

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SteveUK
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Post by SteveUK »

Hi Andy

It's better to write stuff down in my opinion sometimes, because as far as my experiences go, it doesn't come out the way I want it to on occasions and that can lead to all sorts that you just didn't envisage happening.

Being strong for yourself, as much as being strong for other people I think is very important Andy. I don't think you can ever take direct responsibility for other people by being strong for them. You can only give as much as others give back in my opinion, and it's something not to take for granted.

You, like I have endured a hard time, probably on a scale that i cannot myself come to comprehend, and to come through that as good as I feel right now I feel proud of myself. I think the majority of people do when they've had it tough and most of all, I feel that noone expects too much of me, there's no pressure from anyone, and that as much as anything is important.

From what I can see, you seem to be in a situation where you feel pressured, otherwise you wouldn't say "I have to be strong for other people". While it's true we do need to stay strong for people the majority of the time, we ourselves too are only human. I tend to try and focus on what i can do, and can't do, but I don't let the things I can't do defeat me. We don't owe ourselves to be strong to other people because they need us or rely on us, but because there is a genuine desire too and because we are in the right state of mind and focus to give that.

I start college, much in the situation as you. I will have new friends, an enioronment I am not used to, the fear of people not accepting me as I am etc. But what has stood out for me whilst contemplating this new phase is that, i don't have to prove myself to anyone, and owe anyone my strength, my friendship etc to anybody, unless I want to give it naturally and unconditionally.

We all find the strength sometimes, even when we feel weak, and we don't even realise, that for the most time, we carry on with our everyday life. While it is true for you to say that there are people worse off than ourselves, I don't think we should automatically jump to that, because again, we are all human and we are entitled to our own feelings.

But I think most of all - we are allowed to let go of our emotions, pour our hearts out, send out our distress signals, again, human nature, and you're not the only person who seems to think they have to stay strong for the benefit of other people. I have seen a lot of that, and while I feel people are entitled to do that, it doesn't help much in the long run, because eventually problems have a way of catching us up. So i guess the first thing to do, is to face them, come to terms with them and find an effective way of dealing with them or channeling them into something positive for ourselves.

Whilst I may sound a bit cynical - I do share your concern. I am too trying to cope through a situation that's going to end up being hard, but I know, and I have started to make positive things from this, and I am able to gain more strength from that and each and every day.

...... not forgetting the fact I have someone very special holding my hand standing side by side with me ..... it does help.

Without ignoring your first sentence, I'm sure if they mean a lot to you, they will understand your outburst if they are a true friend.

Anyway, I hope you understand any of what I talk about, and if you do understand, I hope it helps you in anyway. After all, that is what we are here for, to help each other I guess in some form or other.

Take care and best wishes
Steve
x
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Elaine
Posts: 1704
Joined: Sat Apr 24, 2004 11:06 am
Location: south west

thinking of u Andy ;)

Post by Elaine »

Andy Rach & I been thinking of you :wink:

Llife can be very difficuilt at times :shock: and jugglin everything illness, school, friends, family etc. We know u will get where u want to be although not quite so quick as u mates which can be upsetting. Rach as u say has also experienced similar issues as uself and have to try take each day as it comes, I know its not easy by any means. :cry: Each day does seem to create new challenges and experiences, good, bad sad, happy, fear, anxiety.

Yes thankfully there are friends, people out there who are willing u on to overcome many issues that sometimes happen- your courage in the face of lifes' adversity and challenges. We too have found them to be very supportive and point us in the direction of help, advise and be there to comfort when things get really tough on that rollercoaster ride of life eh?

speak 2 u soon Andy :lol: Rach has txt u :wink:

best wishes Elaine & Rach ((((((((hugz))))))) xx
LadySycamore
Posts: 73
Joined: Tue May 18, 2004 9:48 pm
Location: Philadelphia, PA USA

Post by LadySycamore »

Hello Andy.

Missed you in the chat earlier. I see now why you needed a hug. :)

Everyone copes differently, and it's good to hear how you do it. I am not that strong. I know myself pretty well to say that. Well..ok I can be strong sometimes. I'm still trying to deal with everything that's going on, even 3 years after being dianosed. I'm also very emotional and reactional (meaning I tend to act before thinking).

But you hang in there and remember that we are in the room whenever you need us. 8)
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Pam
Posts: 866
Joined: Sat Apr 24, 2004 8:13 pm
Location: Springfield, Illinois, USA

Post by Pam »

Dear Andy,
Just reading this I can see that you are a strong person and whatever life hands you you will get through it! Life seems so unfair sometimes even when you are not ill or hurt, but it seems to be compounded when you have your health compromised. I, too, had a lot of problems in my "growing up" years with my illness and you can bet a lot of others here can tell you the same...I was behind one year in high school-not because of my grades (I was on the honor roll and in the National Honor Society) but because for one year I had to have a tutor because of my dialysis-the schedule, how awful I felt afterwards, etc.
When I finally was able to attend high school after transplant, BOY did I NOT fit in anywhere! Like you, no one seemed to want to talk to me-I was ignored, basically. I threw myself into my studies too and cried by myself at home because I wasn't asked to the dances or any social stuff like my two VERY popular sisters were. Even they seemed distant. :cry: When at last I went to college, I finally found good friends that liked me for me.
I guess I am trying to say that it will get better, believe me. I think you did the right thing writing all of this down and posting it...there are people here who know what you are going through and maybe we can help ease the pain somewhat because we've been through it. It's not easy, but I am of the opinion that whatever happens in your life, it happens for a reason. Maybe you are going through this now so you can help someone else in the future. It makes you more sensitive to others and their feelings. All of this doesn't take away your pain, I know, but you know you have us here to complain to, vent at or whatever. We understand and we're your friends. I hope that you have sunnier days ahead of you! :wink:
Sending you virtual (((hugs))) and prayers,
-Pam
32 yr cadaver transplant recipient, now on peritoneal dialysis with the help of Audrey, my Homechoice machine... as of 4/3/09
Romans 8:28
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JMan
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Post by JMan »

:D Hi Andy...

Thank you for writing that post.. It means a lot to me..

I guess when I feel really down, NOTHING seems to help.. These feelings come in waves and phases.. One day I'll be laughing like a fool, the next wishing the ground would swallow me up.. Is it just me? Is it the meds? Who knows.. What I do know is that this is just me.. both sides are part of me.. Multiple facets of a character.. (and yep I can be a real Moany old git :D )

I usually find, and I can see the same in myself, that people lash out/ go off when they are angry, frustrated, or afraid in some way. Most of those come from misunderstandings on one or both parties..

When I went back to school after losing my transplants to cancer.. I was basically school phobic (shcool? WTF was that.. I hadn't been to school in near 2 years)
So I started with a home tutor, gradually did a few lessons etc.. And yep. I studied a year behind, GCSE upwards .. I can't say I had a lot of good friends.. A - levels' and Uni were a little better, though people can still be very harsh..

I guess the biggest difference between me and you is that I 'don't' feel the need to be so strong so much now and if I feel crap.. then sadly, yep, people get to share that as well as when I feel great..

In that respect I am perhaps more like LadyS.. more human, emotional than I used to be.. I'm definitly aware of a change since I had this last transplant.

But in one thing you are right.. You are all wonderful people both here and on the chat and I really really value what you give me.

(I actually have the chat gallery printed out and stuck on the wall and it makes me feel good to see you all)

I'm still not sure how or why I cope, (or even if I do) but I keep waking up each day, and some mornings it black, and others its sparkly rainbows..

Lets hope we all get more of the sparkly rainbow's eh :D

HUGS
Last edited by JMan on Thu Sep 16, 2004 1:13 pm, edited 1 time in total.
"Dialysis! What is this? The dark ages!"
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R30
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Location: Cheltenham, England

Post by R30 »

Good for you JMan - for saying what we all feel, and to you too Andy. This affects all of us and some just cannot be positive and upbeat all the time. What I can say is that we are all there for all of you, whenever you are up or down, as we are going through the same thing.
As for me, this board is the only place where I actually feel a part of something in the whole twelve years of my illness.
Ruth
kim
Posts: 65
Joined: Fri Apr 23, 2004 4:42 pm
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coping

Post by kim »

How DO we all cope?? Good question, as with everything, I think it's an individual thing, you have to do what feels right for you. For me, I sometimes take long bubble baths, or read. Mostly I just need some time to regroup and get my thoughts straight in my head again. It's nice to hear how other people cope. All of you have had so much to deal with in life and I admire all of you!!!! Ice cream and a good movie sometimes help too ;)
Hope your all coping well today.
Love,
Kim
xxxx
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Rik
Posts: 1774
Joined: Wed Apr 21, 2004 10:29 am
Location: West London - UK

Post by Rik »

Hi Andy ...
surely ignoring the person who is trying to apologise to you isnt the typical teenage way ... surely its the typical female way!!!! ...
your obviously not a young'un in your approach anymore ...
your ALL WOMAN now!!!!! :wink:

this week I had to go in for a wee op to sort out some kidney related problems I was having that have now hopefully been resolved ... it was of some concern to me I admit ... but when I look at those around me ... especially here on this board ... and realise just how little I have to deal with compared to others ... and that doesnt just mean kidney related problems either ... but personal too ... it tends to put things into context for me and I cope with things knowing how small they are in comparison ...

though I have to admit ... if caught off guard I can moan on like a professional hypochondriac about all my woes!!!!! ...
(as someone can well attest here after catching me on messenger just moments after I had confirmed with my hospital my op date ... please can I take this moment to apologise to that person and thank them too :0)XXX)

hope you have sorted things out with your friend now Andy ...
all the best
nycpetit
Posts: 262
Joined: Fri Apr 23, 2004 11:00 pm
Location: Miami Beach

Coping

Post by nycpetit »

Coping is SUCH an important part of our whole journey through this ordeal. An ordeal that pre, post, and repeat transplant never leaves us, it is truly one we will take for life.

When I was first diagnosed, it wasn't that I was reluctant to accept an illness, that part I was fine with. After all it meant I finally had some clue as to why I had felt "off" for so many years (more than half my life to be exact).
How come all my friends could have a few drinks and chow down Mexican or Chinese food, and not feel horrible the next day, or not be swollen as I was?? The diagnosis was my answer.

But with the answer came those words, "Well there isn't a cure per se." That was putting it rather nicely. It's all a set of steps and stages.

Like JMan, I learned to accept as time passed. And truly, the acceptance has made me a different, but better person. I am closer now to my family than I was before, and calmer about "change" and less stressed about achievement and schedules.

If I feel bad, I feel bad, and take a nap, or chill out alone, or take the rest I need. In the past I always kept pushing and running, adding one more thing to my frenetic lifestyle. I have more patience with people (and in NYC that is rather unusual to find) and more compassion. Like Rik, I realize my situation is one of mere sidetracking (to this point at least) in comparison to the road many of you (too many of you) have had to take and are still taking.

I always had a certain understanding of what it was to be compromised in some way. I grew up with my grandparents and watched their struggle to cope with old age, illness, heart surgery, and my grandfather in his last two years was on dialysis (as a result of all the heart medication he had taken). Little did I know that I would go down that road too, having been so close to him while he was on it.

But even beside those experiences, it is still so easy when you are young to think you are invincible. This cigarette won't matter, that drink, or joint, or lack of sleep, or doing too much won't affect mere little immortal ME. :lol: But when I was diagnosed, I was so tired of being tired, of feeling off, having more bad than good days, being irritable, bruising, itching, falling asleep, that I began to have to cut back, more and more. And some of those simple little things I enjoyed but didn't pay attention to as much became much more appreciated. Like the days I didn't have to go to the clinic, going to school and being able to work when i knew others were on dialysis, knowing I had a wonderful mother to accompany me to every appt. (We hadn't always gotten along so well), and most of all coming to a place where I was happy just to "be." As odd as that might sound.

It was no longer so much about when i would finish my doctorate and get this that or the other new job, or get the house cleaned, or feel badly because I didn't make it to the gym. It was hey, school is fun, and I am fortunate for being able to work from home, and I am going to go for a walk in the park instead of dragging my tired self to the gym. And just enjoying the small things instead of always striving for the exhausting things.

I too have had family members wonder "how do you do it?" And the answer is simple for me. When you don't have a choice, you are forced sooner than others to realize how wonderful it is to be here. You meet a whole 'nother world of people in shoes similar to yours. You realize the compassion of those who are struggling as you are. You feel more connected to yourself, and you really learn how to take care of you, because you have to. But with that responsibility comes a strength within you and you didn't realize you had. And sometimes you realize, "Hey I do it because it's not really as bad as you might think!"

Now, how was THAT for a ramble? :wink:
Natalie
Angel
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Joined: Wed Aug 11, 2004 7:11 pm
Location: Sunny Somerset

Coping

Post by Angel »

I have wanted to reply to your post for awhile now as it made me stop and think. I cope most of the time but even now after a good hard think I don't know how I do it. It probably has alot to do with the fact that it builds and builds until I have a massive blow out and then I feel better. I don't think the people on the receiving end (usually my mum) feels better but I am so lucky that everything is always forgiven. Most of the things that lead me to one of these blow outs is the more minor stuff that becomes too much on top of everything else. Alot of it stems from pure fear as well-I am so scared most of the time of what is to become of me but yet I seriously cannot talk to anybody about it. In fact I am almost in tears writing this. So I guess I am also someone who bottles things up and that also causes the explosions. Its so difficult to think that this is my life and it can't get any better and that I won't get the transplant call that will hopefully help. Also alot of the reason a transplant can't happen is down to negligence of a previous consultant and that part hurts like hell. I have now changed consultants and he is working on trying to change my situation but it is a very long term thing and now I find that a transplant maybe possible but its not guaranteed so I don't even think about that happening. At present if I needed a transplant and getting down to the wire we are talking life or death then I only have a 50% chance that I would survive even to get out of the theatre. How is anyone of 26 learning that supposed to cope-especially when her mother was gearing up to be a live donor? I am now 28 and getting on with things but I have had some preliminary tests to see what is happening with my new treatment and the results are looming. I am hanging in there but sometimes it just feels too hard and I don't want to know. I have had the hurt once and can't face it again. Yet I dare not hope that the news is good as to be shot down would be too much. So I am sorry this has become a ramble but my coping methods are either explosions and crying or trying not to think too hard and when thinks are really serious just taking time out to just be.
LadySycamore
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Location: Philadelphia, PA USA

Post by LadySycamore »

I have found that re-reading this particular site has helped me when I have days where I feel like I can't cope (like today):

COPING WITH CHRONIC ILLNESS
http://www.alpineguild.com/COPING%20WIT ... LNESS.html
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JMan
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Joined: Fri Apr 23, 2004 10:21 am
Location: Lives in a slightly weird bit of Shropshire called Telford!

Post by JMan »

I've just reread this thread and re-realised how fabulous you (we) all are...
I've just lost someone close to me, (who a few of you knew to greater or lesser degrees she passed away on Fri 5th). Rereading this thread has given me some strength and hope.

Biggest hugs to you all.

J
Last edited by JMan on Mon Nov 08, 2004 12:03 pm, edited 1 time in total.
amanda in CA
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coping

Post by amanda in CA »

Hi, sorry to hear that you are having a tough time. Unfortunately, I think that it is something that we all go through. Ups and downs seem to be a normal response to what has happened to us. However, it also seems to help us re-evaluate the way that we look at life, and in particular, relationships with other people.

When my transplant failed last year I had a friend who I thought was wonderful, that was until one day when I could hardly climb out of bed, I asked her if she could look after her son. Well, her reply was that she couldn't as she was going to shop for a party. I felt pretty hurt, that something so trivial was more important than our friendship, and also because I would have juggled things to make sure that I could help her if she had asked me for help (as I already had several weeks previously as I felt her request for help was more important than what I had already planned to do).

Unable to speak to her directly, I wrote a letter, not abusive, just factual, explaining how I felt. She phoned me soon after, and was obviously upset by the letter's contents and I apologised. Feeling a little guilty that I had upset her, I sent some flowers. The next day I saw her at a friend's house and she flew at me telling me how what I put was 'nasty'. It became heated, and I said a few things that I later regretted. Since that time, I have never spoken to her again. She never thanked me for the flowers (I can only assume that they ended up in the bin), sent several cards, left messages and when I found out that she was pregnant, sent a card and a little gift. I should have know how judgmental and unforgiving that she could be, as she has not forgiven her handicapped sister for doing something years ago, for something that probably shouldn't be held against her since her mental age is that of a child.

Later in the year, I had a hospital admission for depression and I would say that it took me the whole of last year to adapt to being on dialysis again. At the time the arguement took place, the depression was well on its way. It still hurts that allowances and understanding were not made for a single outburst, and three years of friendship obviously weren't enough to offset it.

Well, the point that I am trying to make, is that true friends accept you for the way you are, make allowances for those times when you are not the person that they are accustomed to,and have empathy for your situation. In among the chaff (the friends who aren't), I think that illness allows you to find the wheat (the genuine friends). Amanda
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