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Posted 12/3/2013 10:13 PM (GMT 0)
Hi,

As most of you know I have lived DBT for years and it has provided me with an excellent way of coping both my health issues as well as my trauma issues. I am a fairly resilient, indomitable person.

No matter what it took, I did it, to get as well as I could be. That there is nothing more they will do for my physical illness is a bitter pill to swallow. Acceptance has never been my strong suit.

I am pleased my cat pulled through, but now he's home and going well, the medication he needs for the rest of his life sits their administered because I am just far too sick to be able to fight with this massive cat. I've got to figure something out. I have enough trouble taking my own medication!

Being rejected again by a man who I really liked, losing my carer and the first anniversary of my last family members death coming up on the weekend are all things that are impacting on me.

As someone who has survived what a lot of other people haven't in my life, I see myself as a survivor. This being sent home to die without treatment or management stuff and being told to "accept my fate" just isn't the way I roll. I'm the indomitable one... I'm the one who survives against all odds... I'm the one who turns my pain and suffering into something positive for other people coming behind me.

I'm a fighter and I don't know how to give up. It makes me be quite pathetic when all that there is left to do is accept. I've seen people in worse situations than me, handle it with far more dignity. No amount of talking seems to help, but I do it anyway as I don't know what else to do.

I have become a wet blanket; where any hope is merely denial, where any attempts to help myself is actually a lack of acceptance of reality. Life can be beautiful and it can be hard. I have had my share of hardship and pain. I have wanted it to count for something but I struggle to find meaning in what my life has been.

I have achieved some things I am very proud of. I have lived by my values and tried to make the world a better place. I've made a lot of mistakes but none of them were ill-intentioned. I have been rejected (and/or exploited) for my poor health. It makes me sad, the loneliness and isolation of my life; my lifelong inability to make my relationships work. I'm a good person at my core. I have tried my very best, but I have failed in being able to show the real me from behind my symptoms. I'm not making excuses. I have really worked so hard using clinically proven effective management strategies.

A mental illness forum might not be the best place to discuss physical illness mortality but there isn't a genetic mutation forum here and my illness gives me bipolar symptoms, as well as fatigue and delirium. (My liver and kidneys don't work properly and the blood toxicity affects my brain function).

Ho hum,

Jade xo
Posted 12/4/2013 12:12 AM (GMT 0)
An internet friend sent me this.... I really like it.

No one can blame you at all for having intense emotions. Who wouldn’t under the circumstances? The tough part will be to find that balance between being overly reckless, overly cautious and overly focused on what’s happening. I cannot imagine what you are feeling or going through but I think that in order for you (or anyone) to get the most out of life, balance is the key. You need to respect and give voice to those feelings of frustration and discouragement without letting them dominate the conversation. May I suggest that you continue to work hard at writing out some positive and playful thoughts as you go through your day. Emotions tend to feed on emotions. If you can get it them headed in a positive direction you may find a least a little joy in the day.

I feel a little ridiculous even writing such things because, again, I am not going through what you are going through so how do I have a right to even comment? I just want you to get as much out of life as you can. Unabated depression and anger can rob you of precious days. You deserve better than that and you are better than that. Hugs to you Jade!

I thought that was a lovely spot on message and how lovely of them to spend the time :)
Posted 12/4/2013 11:56 AM (GMT 0)
Jade through what u have written I see a strong woman. Someone who won't let go without a fight. Boy do I wish I was like that! I do what I'm told while I'm screaming on the inside. With the stigma that comes with bipolar disorder, I didn't want to accept it as my diagnosis. I hate medication. Often my headache would turn into a migraine cause I didn't take a Panadol. Loosing all that u have lost, I can't imagine how u must be feeling, what ur thinking, etc. if it were me I'd be in bed thinking about ending my life but knowing that's not the answer. To write from the heart in this forum takes guts, I'm glad u did and I'm sure others have been touched like I have. Take care, chin up x
Posted 12/5/2013 12:08 AM (GMT 0)
It's nice to have you around amshorty. If it helps you to know, there is a good but small crowd that congregate in chat at around 8pm site time. It is mixed chat, in that we all have different illnesses and symptoms, and meet in whatever chat room the first person happens to be in. It is a relaxed but upbeat group in that people tend to be more focused on life than their illnesses. There is the unsaid understanding of what it means to live with chronic illness. Yes, we do also vent about our symptoms and unfortunate life events/circumstances from time to time and we tend to rally around each other in times of need. I just thought it might be something you might be interested in?
Yes, no one puts their hand up for bipolar! I think we then realise that the symptoms are there regardless of whether we accept or reject the dx. In time we realise the dx offers the hope of symptom management and treatment - and our medical file confidential and is no one else's business. We do not need to tell the local shopkeeper we are bipolar; especially when so little is known about it within the community - and anyone who knows anything about bipolar wouldn't assume to know what are your particular symptoms and how it impacts on you and your life anyway. In regards to taking medication is it just pharmaceuticals that bother you? ie. Are you happy to pop a vitamin tablet for a vitamin deficiency? Or is your hesitancy with self-care greater, in that you don't quite value yourself enough... something that can be a hang over from childhood neglect or abuse. Don't mean to pry. Just share what you want. Thanks for your response. I'm a marshmallow under my "warrior" fascade lol xo
Posted 12/5/2013 12:25 AM (GMT 0)
That was a nice piece you wrote Jade. Continue to stay positive and strive for the best. You are indeed a fighter!
I think mistakes are made for us to learn from them and teach us what not to do next time around.
We are always here for you so feel free to vent whenever you're frustrated, sad, etc.

I'm glad your cat pulled through and is doing better.

UA
Posted 12/5/2013 5:23 PM (GMT 0)
Jade,

Awesome sharing of your feelings and I believe you have a right to your feelings as there is no right or wrong way to behave when your news is life altering. 

I will share a bit of my story here and you will see that you are not alone my new friend.  I am in no way insinuating that I have it worse than anyone else who has a critical disease.


Living with death hanging over me and everything I do while still smiling and staying positive is incredibly difficult. I feel like I'm constantly struggling to push it to the back of my mind but never quite succeeding. In fact, the sad thing is I can't remember what it was like not to have a cancer diagnosis that has no cure.  There are constant reminders, which mean that even if I could forget what is happening to me, I would never be allowed to: the regular visits for follow-up appointments at the hospital; the daily battle to swallow the 12 pills I have to take to keep my symptoms under control; the frequent "How are you?" questions that always have a deeper meaning than just a simple enquiry about my welfare.

I struggle with fatigue, but this is something I am determined is not going to beat me. 

My "maintaining normality " mantra also extends to my home life. I  have done enough house work in my 68 years that I am now pampered with a cleaning service. I spend most of my days alone and find solace in being online helping others through HealingWell, my Chemo Angel project and belonging to a community for cancer patients , Inspire.  I enjoy time with  with my family but often find it hard to leave home, my safe place. The routine of life goes on and is vital in keeping  myself on an even keel, although life is also now sprinkled with wonderful, invigorating experiences as I  work through my bucket list.

I find I don't plan further ahead than a couple of months so I have a strange response to  good news that is months away.  My 1st Granddaughter is getting married in May; of course I am ecstatic that this exciting event is going to happen  to the people close to me, but the overwhelming feeling  is that I may miss out on the celebrations. I won't be able to see everyone else's lives flourish, and it may just be due to the nasty chemo or the disease progressing.

Than I remember that none of us ever gets to be here to see everyone we love celebrate the special moments in their life, but my spirit will always be with them.

So I live with "it" day in, day out, and try to plough on with life in as positive and happy a way as possible, remembering that in many respects I am blessed to be here today as it has been 15 months since my dx and surgery and the beginning of chemo for life.  I get mad, angry and sad and I ask why me?  But there is no answer to why me - nor is there an answer to why not me?

Jade,  you are not alone yet if you are like me you feel so alone as the rest of the world keeps on moving and turning and people are smiling and laughing as it is the holiday season but somehow we reach deep within and pull out some happiness of our own.

It gets tiring to always try to find happiness when depression is knocking at your door and it feels so unfair to have battled so many huge losses in our lives but this is our life and we will live it well............you are one very special lady.

Be angry, be sad but keep on sharing here with us as we care for you.

Love,

Kitt

 

Posted 12/5/2013 9:51 PM (GMT 0)
Wow, thank you Kitt. I really get that "working through our bucket list" idea. And in the past few days, I have started to feel that liberation of "the time is now" and being freed from long-term planning. I'm a gratitude delayer, and even though I have lived mindfully and according to my values, nothing comes into sharper focus when each thing you do, might be the last time you do it. Last Christmas, last birthday. I am so very grateful that you took the time to share your story because although I wouldn't wish it on anyone, dying is part of life and there is some solace to be found in someone battling with similar issues. It is hard to work though one's bucket list with critical illness. For me the fatigue is a constant major impediment too. Depression when it comes hurts like crazy but at least it isn't as constant as the fatigue and delirium. I appreciate you leading by example, about how to accept the prognosis, and use the time we have left the best we can. The 5 undertakings I developed from my internet friend's advice were:
1. Laugh more
2. Love more
3. Treat myself
4. Help others
5. Relax
Just like my friend's advice hit the spot, your post was like a nutritious meal that my soul could easily digest. It made me feel comforted, less alone and reassured. Thank you so much xo
Posted 12/8/2013 1:11 PM (GMT 0)
I wish THIS feeling could last, but like all feelings, they will change... life is full of happy and painful emotions.
I'm actually feeling "light".
There is so much stuff I have been able to get rid off, that I have been clinging on to in case of a rainy day.
I have had to battle with finances and lived very frugally to be able to survive.
I feel lifted from the burden of having to plan long term.
Right atm, I just feel at peace with it... I have had a lot of sickness and trauma in my life...
Here I am, the person raging at my terminal prognosis 10 days ago, and I know I will have times where I feel angry and depressed again, but right now, I'm feeling a sense of liberation.
Maybe it is hypomania... but maybe after a life of struggle, I'm starting to find peace in being told to give up trying so hard.
It's like that peace that comes with accepting a relationship is over. You know there was good times and there were bad times. You miss that person but you have also sustained pain and injury at some stage within your relationship with them... and you just "know" it is time to "let go". It can feel so freeing letting someone go and that is how I feel in relation to my mortality atm. I will talk next when I'm raging at missing out on the transplant assessment. But for now I will enjoy this sense of peace within the chaos.
Thanks for reading.
Posted 12/8/2013 7:04 PM (GMT 0)
LW,

I loved reading your post today and knowing that you are feeling peace makes me happy for you.  With all of your issues and now this news it is normal to feel confused, sad, angry, lonely and left wondering which way to turn.  Looking for the reason why this had to happen and not wanting to take the news as the toughest thing you have ever been through is normal.

Learning to live as fully as possible while accepting the presence of a terminal illness is something that will play with your feelings over and over.  Some days you feel peace and you think, I am OK, and you will feel OK so take advantage of that feeling of peace.  I can be fine in the morning and fall apart in the afternoon.  Is it my depression or is it the add knowledge that my cancer is not going away?  And does it matter...............all I really want is to feel peaceful and happy - no tears is a good day for me.  

I love the days even the weeks when I feel so at peace so today I wish you peace and happiness but most of all I wish you love.

Blessings,

Kitt

Posted 12/8/2013 9:59 PM (GMT 0)
right back at you kitt xo (((thank you)))
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