Dying is a lonely journey. Not only for the sick person but also for the family. As hard as we may try to avoid death, the truth is that we do a lousy job of it. Science and medicine will certainly postpone it, even staying healthy might seem to delay it, but the harsh reality is that death does not wait for you, it does not ask you, and it does not listen to you. Death ignores your feelings and wants; you do not matter to death…Death is the only certainty in life! We need to remember that our existence here is fragile, and we never have as much time with people as we think we do. If there is someone or someones out there that you love, don’t neglect that and don’t put off engaging with them because waits for no-one… Vic's Journey ended on 18 January 2013 at 10:35. She was the most courageous person in the world and has inspired thousands of people all over the world. Vic's two boys are monuments of her existence. She was an amazing mother, daughter, sister and friend. I will miss you today, tomorrow and forever my Angle Child.
I want to thank one of the bravest young woman, I know, for nominating me for two awards – The Dragon’s Loyalty Award and the Blog of 2013 Award. These are wonderful awards to receive. The Dragon’s Loyalty Award is an award for the loyal fan/commenter, whether the recipient is a fellow blogger or just someone who follows and comments regularly” and the Blog of 2013 Award is exactly what the award name says…The most deserving blog of the year….
There are some rules that one must follow to fully accept The Dragon’s Loyalty Award and they are as follows:
1. Firstly, display the Awards on your site. You earned it and you deserve it!
2. Link back to the person who gave you the award in your acceptance post
3. Nominate 15 well deserving bloggers for the Award and let them know the wonderful news by sending them a message on their site
4. List 7 interesting facts about yourself
Seven facts about me:
I live in South Africa and am proudly South African
2. I always forget to wear lipstick…
3. For the first time in my life I am working with a lot of women. I have always worked in male dominated industries. I love my new Magnolia friends.
4. I hate my birthday – for no particular reason.
5. My 2014 resolution is to write Vic’s Memoirs 6. I have a very inquisitive mind. 7. I love taking close-up portrait photographs
My 15 nominees for both awards are:
Many thanks to my brave and amazingly talented blogger friend Katie Mitchell for nominating me for this award too! Katie Mitchell suffers debilitating pain yet this brave young woman has made it her mission in life to educate the world on Connective Tissue disorders. She is a very talented artist. Katie is truly amazing and I highly recommend stopping by her blog at http://tissuetales.com/2012/10/01/treading-water/.
Instructions for this Award are:
1. Select the blogs you think deserve the ‘Blog of The Year 2013 Award’. *See my 15 nominees above*
2. Write a blog post and tell us about the blog(s) you’ve chosen (There are no minimum or maximum number of blogs required), and present the blogs with their Award.
3. Let the blog(s) that you’ve chosen know that you’ve given them this Award and share the instructions with them. (Please, don’t alter the instructions or the badges!).
4. Come over and say hello to the originator of the ‘Blog of The Year 2013 Award’ via this link:http://thethoughtpalette.co.uk/blog-awards-2-/blog-of-the-year-2013-award/
5. You can now also join the Blog Of The Year Award Facebook Page Click the link here: https://www.facebook.com/groups/BlogoftheYear
6. And as a winner of the award – please add a link back to the blog that presented you with this award – and proudly display the award on your blog – and start collecting stars!
About my nominees:
I have had tremendous support over the past 19 months. These bloggers that I’ve chosen to nominate are the ones who are ever-present in my life online. They are the ones who read my posts, offer words of support and friendship, and help make blogging the amazing thing that it is for me. They have helped me survive the most difficult year of my life. And in turn, their posts, pictures and stories enrich my life on a daily basis. They teach me, make me smile, make me think, and consistently remind me how truly wonderful our community of bloggers is. I have received other awards and will award the rest of my loyal cyber friends. Many of my nominees suffer either debilitating illness, pain or grief. Some of them don’t accept awards. Regardless of this I am still making the award. Thank you for your love and support; all your words of advice and kindness.
You’re all wonderful and deserving of this recognition!
Please pop in there. Let’s all think about “kindness” and make it our goal to perform just one special act of kindness every day! It has to be a special act of kindness that actually takes an effort.
Vic was a kind and generous person. Her legacy is one of kindness and generosity. So I have come up with an award… The Rose of Kindness Award. I would like to add that we need to remember that our existence here is fragile, and we never have as much time with people as we think we do. If there is someone or someone’s out there that you love, don’t neglect that and don’t put off engaging with them because death waits for no-one… Be kind and gentle. Cherish your relationships remember to be kind…. Pay it forward!
Thank the person who nominated you and link back to their blog
Nominate 13 (my lucky number) bloggers whose kindness you have experienced
Post why you are nominating each of your nominees
Let the nominees know that you nominated them
Suggest one special act of kindness that the world may benefit from
So I have to nominate some kind people.
My treasured friend, Sandra @ http://thedrsays.org/, who is terminally ill and yet has so much kindness in her heart that she still reaches out to me and other people. This brave and selfless woman has made a difference in my world. She worries about her loved ones that she will leave behind. Thank you dear friend for caring when you have so much to deal with! You are always in my thoughts and prayers!
http://behindthemaskofabuse.com is a heart wrenching blog about a woman’s life of abuse. She was raised by a narcissistic father, and a mother who rarely protected her from his verbal, mental, emotional and psychological abuse. She endured molestation, both inside and outside the family setting, raped at the tender age of 11 years old. This blog is written by an amazing person. A strong person battling recovery, anger and betrayal. She battles C-PTSD and BDD. Out of her pain two books were born and are published on Amazon “Buckwheatsrisk-Abuse Survival”, and a poetry book entitled “If I Could Write my Heart.” I salute you dear friend for your resilience and kindness. Out of your hardship a beautiful kind and caring human being was born. Thank you dear friend for the kindness you have shown!
http://idealisticrebel.wordpress.com/ – Rebel is amazing and takes on the world! A kind and brave blogger who fights to make the world a better place. Rebel is a kind and generous friend.
http://jmgoyder.com/ – My precious friend Julie who has so much pain and loss to work through. Julie writes about the love between her and her ailing husband. It is the most beautiful love story ever! Julie is kind and caring. Thank you for your loving kindness dear friend!
Judy is my dear friend who has guided me through this abyss of grief that I am walking…http://myjourneysinsight.com Judy reaches out to grieving parents. She offers guidance, advice and love. Thank you dearest Judy for your kindness and friendship.
Shirley @ http://justiceforraymond.wordpress.com is a true warrior, fighting for justice yet always ready to extend a hand of friendship and support. Shirley taken on the judicial world to bring justice to the unsolved and uncleared and uncared for deaths. Thank you dear Shirley for your words and actions of kindness.
Len @ http://myownheart.me is a precious friend who always has a kind word of support. Despite her pain after the tragic loss of her precious Klysta Len reaches out a hand of friendship with words of kindness. Thank you dear Len
This wonderful woman has 1077 followers and yet she has time to read my blog, comment and encourage. Her words of advice are filled with compassion and kindness. Thank you dear Diana http://talktodiana.wordpress.com/
Katie Mitchell who suffers debilitating pain yet this brave young woman has made it her mission in life to educate the world on Connective Tissue disorders. Vic suffered from Osteogenesis Imperfecta, a connective tissue disorder. Katie is a kind and gentle person –very worthy of this award. http://connectivetissuedisorders.wordpress.com/2012/10/01/treading-water
Shaun @ http://prayingforoneday.wordpress.com/ is a kind and cherished friend. I sometimes feel bad because I know I cause him pain because of my grief. He reaches out wanting to make my life better. Thank you dear, kind friend. I know you don’t accept awards anymore so I truly understand if you don’t accept.
http://kindnessblog.com/ I would be remiss to not award the blog that inspired this action. Thank you for the goodness you radiate in your blog. I could not find your name anywhere but I hope you will accept.
Terry @ http://terry1954.wordpress.com/ is a kind blogger who cares for her brother deeply and passionately. She is a shiny example of how we should treat our fellow human beings and family – with kindness!
An extra nomination – My beautiful, brave child who radiated goodness and kindness, this award is for you! You made the world a better place. I am proud to be your Mommy. This award photo is of the rose we planted at the front door…I love you angel child.
My suggested act of kindness: On Mother’s Day and Father’s Day, remember any friends who have lost a parent the previous year, and check in with them. Those will be tough days.
I am so honoured to receive this WordPress Family Award from not one bloggerbut two!! How blessed can I be?
Thank you dear Jane @ http://johannisthinking.com and Shaun @ http://prayingforoneday.wordpress.com/ Both Jane and |Shaun are great bloggers, and their follower figures reflect it. Jane has 375 followers and Shaun 696……I think the reason why they have such great stats is because they care!! They comment, email, care and share. Their blogs are filled with real-world life, happiness, sadness, pain, compassion and laughter… They share their joys and sorrows.
So this award is about being part of the Word press Family!
I started blogging almost a year ago. It was just after my BFF and Dad’s one year anniversary and Vic had made the decision to let nature take its course. It was a difficult time for the family. We were helplessly watching Vic die – little by little every day. Her pain was unbearable.
My blog started off cautiously focussing on Vic’s pain. Tracy @ http://ohwhatapain.wordpress.com/ opened my eyes Vic’s pain – I could “feel” Vic’s pain after I met Tracy; Katie Mitchell @http://connectivetissuedisorders.wordpress.com/ – an incredibly brave young woman who encouraged me when she is in so much pain of her own… I could “see” life through an ill person’s eyes…”feel” her pain through the eyes and words of other Chronic Pain Sufferers.
I grew more comfortable sharing and started blogging more about my fears and emotions… Ultimately about Vic’s death and our grief as a family.
Today I have 210 followers. Many of them have become my cyber family! They love and care for me, my family and my precious Vic. They offer hugs, love, compassion, sympathy and advise. They care unconditionally. They do not criticize my writing, punctuation, spelling or grammar…
I have found friendships and love in cyberspace that I did not know existed. It has also opened my eyes to the fact that there are good people in the world. People who care…. It enabled me to open my heart and life to real life friends too…
I love my blogging family! Love you guys.
I know there are slightly more than 10 nominations. I PRAY I did not omit a precious friend’s blog. If I did, please do not be offended. Blame it on the flu.
Now for a description of the award in the words of the Creator Of The Award:
This is an award for everyone who is part of the “WordPress Family” I started this award on the basis that the WordPress family has taken me in, and showed me love and a caring side only WordPress can show. The way people take a second to be nice, to answer a question and not make things a competition amazes me here. I know I have been given many awards, but I wanted to leave my own legacy on here by creating my own award, as many have done before. This represents “Family” we never meet, but are there for us as family. It is my honor to start this award.” from Shaun @ http://prayingforoneday.wordpress.com/
1. Display the award logo on your blog.
2. Link back to the person who nominated you.
3. Nominate 10 others you see as having an impact on your WordPress experience and family.
4. Let your 10 Family members know you have awarded them. There is a real problem here since this award spread like wildfire but I think I can find ten who should be recognized
5. That is it. Just please pick 10 people who have taken you as a friend, and spread the love.
Tracy has opened my eyes to the world of the chronic pain sufferer. Vic hides things from me because she tries to protect me. I am so healthy and do not know or understand pain. Tracy articulates pain and her journey beautifully and I am grateful to her for sharing her painful journey with the world. It is such a valuable source of information! It has given me an insight into the dark, fearsome world of pain. Thank you Tracy and all the people who I nominated. You and bloggers like Katie Mitchell – http://connectivetissuedisorders.wordpress.com, (who nominated Tracy), have made my world a better place. I thank you all.
The Rules for The Lovely Blog Award:
– Thank the person who nominated you and link to them in your post.
– Share seven unknown things about yourself.
– Nominate other bloggers and blogs that you like or admire.
– Contact the bloggers you nominate to let them know and to link them back to your post.
1. I cry in the shower 2. I only learnt to cook after I got married – the 2nd time! 3. My ultimate career would be to be a spy. 4. I want to be the oldest person to ever skydive 5. I read the eulogy section in the newspapers 6. I feel guilty because I am so healthy. 7. I am a loner.
I have nominated the following bloggers because I enjoy their blogs very much and have found their information and comments helpful:
Whoopee!!!! I have been nominated for a Sunshine Award by brave Katie Mitchell whose blog I follow slavishly! Katie suffers from a Connective Tissue Disorder, Marfan’s Disease. I have learned so much of this talented young person’s journey with pain and how it has affected her life. Katie’s mother also suffers from chronic pain so she knows both sides of the pain story… Thank you Katie for the nomination and for sharing your journey with us!
When I started my blog is was because I needed an outlet for all my pent-up emotions. It is difficult for me to articulate my emotions because I am scared that if I started crying I would not stop. It also bears my soul to the world so it was difficult at first. Every time, before I linked my post to FB, I would sit for a long time and wonder if I should allow family, friends and acquaintances to see my soul or whether I should remain anonymous in WordPress…. I am now comfortable with my FB link as it that I have received the most amazing support from old school friends, family and strangers. I have a new network of people, that care, that surrounds me.
I no longer feel embarrassed about posting – people have the choice to read my blog or ignore it. Thank you for your caring and support! This blog has become a dear friend and confidant!
But allow me to be brutally honest – I am thrilled about this nomination. I don’t know how it works but I mailed Katie and she gave me instructions…Thank you again brave Katie!
So according to Katie – here are the rules:
If you are nominated you must include the link in a blog, linking to the person/blog that nominated you.
You must answer some questions and nominate 10 fellow bloggers and link their blogs in your post.
Let the people you have nominated know that you have nominated them!
Here are the questions:
1. Who is your favorite philosopher?
Confucius without a shadow of a doubt!
2. What is your favorite number?
9 – I believe in the science of numerology the qualities of the number 9 are those of leadership, the ability to see clearly, integration, personal integrity, unity, truth, perfection and concord.
9 represents wisdom and responsibility, and the ultimate goal of the number 9 is to serve humanity.
9 represents human’s ‘earthly lesson’, which is ‘forgiveness’. Number 9 learns selflessness and compassion. People with the 9 energy work without motive. Their purpose is for the greatest good of all. They have a protective energy and they have great power and love in their soul. They will grow and learn throughout their lifetime tolerance, compassion, selflessness and generosity. There is a great strength of character within the 9 person, as well as wisdom, intuition and high idealism. There is also a great deal of warmth of feeling and love of home, family and friends.
3. What is your favorite animal?
Did you know that an eagle knows when a storm is approaching long before it breaks?
The eagle will fly to some high spot and wait for the winds to come. When the storm hits, the eagle sets its wings so that the wind will pick it up and lift it above the storm. While the storm rages below, the eagle is soaring above it.
The eagle does not escape the storm. It simply uses the storm to lift it higher. It rises on the winds that bring the storm.
We are all faced with the winds of the storm that bring sickness, tragedy, failure, and disappointment in our lives. It is not the burdens of life that weigh us down, it is how we handle them.
The Bible says: “Those who hope in the Lord will renew their strength. They will soar on wings like eagles.” Isaiah 40;31.
It became crystal clear to me when Vic yelled at me in the ICU that she had deep-seated anger issues with me and where she was in her journey. Dying is unknown territory and none of us have walked this road. Yet we are all morbidly curious about dying. Everybody has some shadows of uncertainty.
According to Hospice there are FIVE stages of dying.
1. DENIAL: “I’m too young to die. I’m not ready to die (is anyone ever really ready?)” It became clear to me that despite the fact that Vic was sentenced ten years ago she is still in denial. Even after Brendan had informed her that nothing more could be done for her she still clings to her lifelong defiance of death. The prediction from one’s physician of imminent death can do several things. It can give you time to prepare, take care of business, close doors, make amends. The shock begins to ebb as you come to grips with approaching death. Vic has some doors to still close. Her business is in order. She has written letters to her loved ones, bought major birthday gifts and cards for the boys
2. ANGER: Suddenly the terminally ill person is no longer in control of their life. They have no choice any more – the die is cast….. They are going to die. This is really where Vic is now. She has lost control of her life. At the age of 37 she is living in her mother’s home, decisions are made for her she has become a child again. Her anger on Sunday morning was directed at me. Her profuse sense of helplessness and loss of control is however not a new feeling. Vicky has endured a long, debilitating illness. Doctor error has robbed her of a life. Illness has robbed her of her dignity. She is angry with God for allowing this to happen to her. She is angry for God not taking her. On Monday afternoon she said “Mommy, God does not even want me…”She has been robbed the opportunity to see her sons complete school, university, get engaged and eventually marry…… Many people die too early but at 37 it is mainly due to misfortune, wrong place wrong time, an accident….. At the age of 27 Vicky was sentenced to death…..
3. BARGAINING: I do not know what bargaining Vic has done with her God. I know that I have made lots of bargains with my God. Just one more Christmas….. Just one more birthday…..
4. DEPRESSION: Knowing that you are dying must be depressing! This must be a normal part of the process of preparing to die. Vic is depressed about her inability to deal with her responsibilities. Vic is too ill to get away from the symptoms of her illness ….. She waits for death every day. Vic is depressed about the pain that her illness is causing her sons, friends and family. Vic is depressed because she feels that she has failed her sons. Vic is depressed because she is lingering…. Vic is depressed about the loss of love that she has suffered. Vic is depressed period! But with good reason. Antidepressant’s are part of the pain control regime. If it is helping for her pain that is great. I hate to think what her mental condition would have been if she had not been on antidepressants.
5. ACCEPTANCE: Vic is not at this stage yet. This is one of the main reasons why we need Hospice. Brendan (her Gastroenterologist) referred her to a councillor last year to guide her into this phase of her journey. Vic went a couple of times and then it became a matter of budget – medication or counselling. Medication won. Hospice defines acceptance as follows…”Acceptance is NOT: doing nothing, defeat, resignation or submission. Acceptance IS: coming to terms with reality. It is accepting that the world will still go on without you. Death is after all, just a part of LIFE.”
I see absolutely no peace in Vic. She is still kicking and fighting. At times she may fool herself into thinking or believing that she has accepted her situation but it is crystal clear to me that it is not the case.
We met as a family on Tuesday evening to discuss all our frustrations. It becomes difficult to handle one’s day to day frustrations as we have different agenda’s. A while back Vic asked my permission to give up. She spoke to the boys. We cried and gave her “permission”.
The family immediately went into palliative mode. No demands or expectations for any normal functionality from us to Vic….. Therein lies the issue. We became an “Us” and “Her”… “Us” became the protectors and “Her” became the invalid. We tippy toed around Vic. The boys stop bothering her with everyday issues like “Can we go to the movies”; “please pick me up at 16:00”; “Do I have to go to extra lessons?” When we walked into her room and she was sleeping we would turn around and walk out. We would show no concern for the amount of pain medication Vic was on.
It is so easy to slip into a “mode”. I took all responsibilities out of Vicky’s hands, we as a family organized our lives around her pain levels and energy (or lack thereof) levels, we stopped laughing and living in our house. We were all dying!
When she lashed out at me in ICU I realized that we had serious problems. Vic was not ready for Stage 5. She started kicking against death – again. Her fight is back.
It is however a difficult and delicate balance between pain-free and functional….. Vic said that she wanted to reduce her pain medication as maybe she would not be so tired all the time. By Monday evening she was in so much pain that she was vomiting. She could not keep tablets down….. It took two days to get her pain under control again.
I have also read Katie Mitchells Blog on Chronic Pain and the way that brave lady articulates her battle with pain truly opened my eyes. I realize now that I cannot take living away from Vic whilst she is still breathing. I have to let go. I cannot protect her against pain. I cannot protect her against death. I have to try to look at her through her pain filled eyes as I don’t understand pain or her frustration. I am active and busy. Today I joined a gym so I can train with the boys. I do the things with her sons that Vic would LOVE to do! A couple of weeks ago Vic said “You are the fun person in the family. You do all the fun things with the boys” Obviously there must be resentment and anger (Stage 1).
But we live in a civilized home. We don’t scream, shout or curse. We bury things under the carpet. We walk away from conflict so we don’t know what the other is thinking or feeling. We only see the veneer..… How terribly sad!! We have lost our ability to function properly.
So from now when I am frustrated with Vicky attempts at doing things for herself or the boys I will leave her be!! PLEASE God help me!!!! I am such a control freak!!! I will endeavor to not stop her from going for a cup of coffee with one of her friends. I will just pick up the pieces afterwards.
I have to stop being selfish. I realize that I was trying to keep Vicky pain-free as it is easier for me to handle!! Pain free means medication on the strict regime, no strenuous activities, protected and wrapped up in cotton wool. Vic must make her own painful decisions. If she wants to take the boys to school who am I to stop her? Of course she must but not on 400 mg of morphine!
The problem is that I look at Vic and all I see is that fragile little toddler…… And she is sick. Very sick! I want to protect her, breathe for her, die for her. Vicky is my baby.
“Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.” Leo Buscaglia
I am disgustingly healthy! I do not get headaches, toe-aches, tummy aches, ear aches or any aches or pains. Every five years or so I get the flu and am totally unable to deal with the discomfort or pain of flu…I will stay in bed and when I hear Danie walking up the stairs to our room I will actually start groaning. It is involuntary. I am a ninny. My family joke with my non-existant pain threshold. Yet I see the doctor once a year for an annual check-up as I did last week.
Liver, lungs, kidneys perfect according to my blood tests. Slightly elevated cholesterol count. Doctor says I am in near perfect health. So how do I understand my child’s pain and discomfort? I don’t! If you were born blind how could you ever understand or appreciate color?
There is a very brave young lady called Katie Mitchell, who suffers from Marfan’s Syndrome. http://connectivetissuedisorders.wordpress.com Katie gives me an insight into pain… She articulates her feelings beautifully. Katie lives, breathes and understands pain… Katie has become my window into Vic’s painful journey…Katie re-posted a blog on pain and I found it so enlightening. I will actually print the document and discuss it with the family.
Katie writes in red and my comments are in black:
Tips for dealing with people in pain:
1.People with chronic pain seem unreliable (we can’t count on ourselves). When feeling better we promise things (and mean it); when in serious pain, we may not even show up.Vic is always trying to go to breakfast with Angela, lunch with Mrs Cramp and coffee with Tracey. Vic very seldom is able to stick to a commitment. It fills her with remorse. She desperately wants some normality in her life. Some semblance of a social life. Pain and ill-health prevent it!
2.An action or situation may result in pain several hours later, or even the next day. Delayed pain is confusing to people who have never experienced it.Oh this I truly relate to…Vic sitting in the sun and crashing later, Vic trying to participate in a family barbecue and spending a week in bed to recover… Every action has a painful consequence! As a family we dread Vic’s brave (but stupid as far as we are concerned) attempts of participating in life. As a family we become angry, frustrated and scared when Vic tries to “live”!
3.Pain can inhibit listening and other communication skills. It’s like having someone shouting at you, or trying to talk with a fire alarm going off in the room. The effect of pain on the mind can seem like attention deficit disorder. So you may have to repeat a request, or write things down for a person with chronic pain. Don’t take it personally, or think that they are stupid. I never realized or appreciated this aspect of pain. I often thought to myself Vic must be doped up, disinterested… As a family we were not aware of this aspect of pain. Vic at times seems totally disinterested in the boys, the family, in life…
4.The senses can overload while in pain. For example, noises that wouldn’t normally bother you, seem too much.Vic battles with too much movement or noise. She becomes very irritated.
5.Patience may seem short. We can’t wait in a long line; can’t wait for a long drawn out conversation.Absolutely!! If Vic wants something she wants it now!
6.Don’t always ask “how are you” unless you are genuinely prepared to listen it just points attention inward.Sometimes I am too scared to ask. Some day’s I say “Oh, you are looking so great today” and Vic will reply “Oh good…” and I know that she is thinking “Tell my body! I am feeling like death”
7.Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like hanging out the laundry, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. It is sane to be depressed occasionally when you hurt.Tonight Vic could not rub the hand cream into her little hands. She could not pull a brush through her hair…
8.Pain can come on fairly quickly and unexpectedly. Pain sometimes abates after a short rest. Chronic pain people appear to arrive and fade unpredictably to others. I think Vic is past this stage. Her pain is debilitating relentless and never-ending!
9.Knowing where a refuge is, such as a couch, a bed, or comfortable chair, is as important as knowing where a bathroom is. A visit is much more enjoyable if the chronic pain person knows there is a refuge if needed. A person with chronic pain may not want to go anywhere that has no refuge (e.g. no place to sit or lie down). We are past the visiting stage.
10.Small acts of kindness can seem like huge acts of mercy to a person in pain. Your offer of a pillow or a cup of tea can be a really big thing to a person who is feeling temporarily helpless in the face of encroaching pain.Every small action elicits a “Thank you Mommy” Reuben actually remarked that in the past Vic took everything that I did for her for granted. At this stage of her life Vic drives me absolutely mad with all the “Thank-You’s”
11.Not all pain is easy to locate or describe. Sometimes there is a body-wide feeling of discomfort, with hard to describe pains in the entire back, or in both legs, but not in one particular spot you can point to. Our vocabulary for pain is very limited, compared to the body’s ability to feel varieties of discomfort. Vic’s pain is well-defined but at times she has referred pain.
12.We may not have a good “reason” for the pain. Medical science is still limited in its understanding of pain. Many people have pain that is not yet classified by doctors as an officially recognized “disease”. That does not reduce the pain, – it only reduces our ability to give it a label, and to have you believe us.We do not understand pain. I never have pain. I cannot imagine not being able to walk, run, work, function, drive, live due to debilitating pain. I groan from flu-pain…I don’t know how it feels to have a frozen abdomen, fractured vertebrae, migraines from skeletal collapse, chronic and unrelenting tissue pain…. There are times that I think surely it cannot be that bad? I don’t understand Vic screaming with pain but I KNOW her pain is real!!!
In addition to the above I would like to add some of my own observations…
13. Pain makes people emotionally over-sensitive. Vic often misinterprets what we say. She takes things very personally! She is almost jealous of the boys and my relationship. She feels excluded from so many aspects of our lives. Last week Vic said “You are the fun-Oumie. I don’t make my boys laugh”… She is very sensitive as to who the boys ask permission to do things or go places… It is okay because she is scared of losing everything that is precious and dear to her.
14. Pain makes people selfish. This is a harsh statement. When your body is engulfed in pain it must be very difficult to see reason and to wait. It must be difficult not to lash out at the world. To not stop and think of the effect that your illness has on your family and friends.
15. Chronic pain and depression are closely linked. Chronic pain almost always leads to depression: Why? Just imagine a life consisting of dreadful, mind-blowing, unrelenting pain? Imagine not having anything to look forward to… We try to set little goals for Vic.
16. Fatigue is a definite factor.
Whether it is the pain medication or the emotional strain of coping with the pain, Vic is chronically and permanently tired. We leave her to sleep. We are far happier seeing her in bed than seeing her battle to walk, sit or participate…It stresses us that she gets up when she is so tired. Vic falls asleep in a chair, the bath, the car, on her feet… We are at loggerheads with Vic in this regard… We want what is best for her…
17. Addiction:- “Patients often fear addiction. Patients with chronic pain do not and cannot get addicted to morphine. This is proved clinically by seeing patients whose pain is abolished (with a nerve block, for example) when even high doses of morphine used for several months can be stopped immediately with no withdrawal effects. Patients who are terminally ill still often fear that they may become addicted to morphine. They and their families can be reassured. This cannot happen when morphine is correctly used to control their pain. http://www.hospiceworld.org/book/morphine.htm“
The amount of medication that Vic takes is a source of great embarrassment to her. Her biggest fear is that people will think of her as a “drug addict”. This often prevents her from taking adequate medication. Do not even jokingly call someone who is chronically ill a drug addict…You have no idea what you are talking about! Quite frankly I don’t care whether Vic is an addict or not…as long as she has some quality of breathing or life as she now knows it.
I wish I could research exotic vacation spots rather than “Tip’s for dealing with people with pain” But this is part of our journey…