What are the different types of pain medication options?
Different strokes for different folk… What pain medication works for one type of pain does not work for a different type of pain. Simple example: – Morphine does not relieve toothache or headaches….. It relieves bone pain.
Medicines can often help control chronic pain. Many different drugs, both prescription and non-prescription, are used to treat chronic pain. All these medicines can cause side effects and should be taken exactly as they are prescribed. In some cases, it may take several weeks before medicines work to reduce pain. To avoid dangerous drug interactions, tell your doctor all the medicines you are taking (including herbal and other complementary medicines).
Medication Choices
You will likely be given medicines that cause the fewest side effects first (such as acetaminophen) to treat chronic pain. The dose will be increased or the medicines will be changed as needed. Medicines used to treat chronic pain include the following:
Recommended Related to Pain Management
Other therapies that may be used to treat chronic pain include:
Vic’s pain medication as at 4.8.2012 (Transcribed from medication received from Pain Clinic
| TABLET | NO OF TABLETS | PER DAY |
| TRAMADOL 50MG | 4 | 3 TIMES PER DAY |
| AUSTRELL PARACETAMOL 500MG | 2 | 3 TIMES PER DAY |
| STILPAYNE | 2 | 3 TIMES PER DAY |
| CYMBALTA 60 | 2 | 1 TIMES PER DAY |
| NEURONTIN 100MG | 6 | 3 TIMES PER DAY |
| SRM RHOTARD 400MG (MORPHINE) | 2 TIMES PER DAY | |
| ELTROXIN .1MG | 1 | IN MORNING |
| BACTRIM | 1 | 3 X PER DAY |
| LOSEC 20MG | 1 | IN MORNING |
| STEMITIL 5MG | 1 | 2 TIMES PER DAY |
| MORPHINE SYRUP | 25MG/5ML | AS NEEDED |
| JURNISTA 4MG | 1 | 1 TIMES PER DAY |
| PANAFORTE | 1 | 2 TIMES PER DAY |
| DEGRONOL | 2 | 2 TIMES PER DAY |
This is scary. The amount of opioids Vic takes would certainly kill most people. Is Vic an addict? Certainly not!!
Opioids work by mimicking the body’s natural painkillers known as endorphins. They control pain by blocking pain messages to the brain. Because morphine is an opioid, some people worry about becoming addicted. When you take an opioid to control pain, it is unlikely that you will become addicted. The body uses the drug to control pain, not to give you a ‘high’ http://cancerhelp.cancerresearchuk.org/about-cancer/treatment/cancer-drugs/morphine
I read a heart rendering account of chronic pain and the fear of being treated as an addict written by Tracy Rydzy, a Licensed Social Worker. http://ohwhatapain.wordpress.com/being-treated-like-an-addict/ Tracy writes a heart rendering blog on chronic pain and prejudge that she faces every day. Tracy writes: “I may be on medication, but I am intelligent and I know what is going on. Please understand that I didn’t choose this for myself. I don’t want these damn pills, but I have no other choice right now as I have exhausted my other options for pain relief. Don’t hold my condition against me. I understand the pen is mightier than the sword, so I can’t even ask to change dosages, I can’t request anything different, I certainly can’t be rude in any way (regardless of how you treat me) and I can’t question you because you hold my ability to move and get out of bed in your little prescription pad.”
We are so fortunate that we have access to The Pain Clinic run by very sympathetic professionals. We do not have a problem getting a prescription for the medication. Our problem lies in the fact that from time to time the pharmacy of the Helen Joseph Clinic runs out of Morphine both in tablet or syrup form. Sometimes we are able to get a private script from the Pain Clinic and other times I have to go back the next day, sit in a queue again, get the script and then get it filled privately. Try and get 4.2 litres of morphine syrup from a pharmacy…. Sometimes I am busy and then find it easier to pay a doctor for an appointment to get a script. We may get a script for 1 litre….
Fortunately Vic’s eldest sister is a pharmacist and we are known to the staff at that particular pharmacy. The times we have tried to use other pharmacies (because they do not have morphine in stock) we are treated with suspicion.
“Many people confuse physical dependence, which is the occurrence of withdrawal when the drug is stopped, with addiction. Withdrawal is a physical phenomenon that means that the body has adapted to the drug in such a way that a “rebound” occurs when the drug is suddenly stopped. The kind of symptoms that occur include rapid pulse, sweating, nausea and vomiting, diarrhoea, runny nose, “gooseflesh,” and anxiety. All people who take opioids for a period of time can potentially have this withdrawal syndrome if the drug is stopped or the dose is suddenly lowered. This is not a problem as long as it is prevented by avoiding sudden reductions in the dose.
Physical dependence is entirely different from addiction. Addiction is defined by a loss of control over the drug, compulsive use of the drug, and continued use of the drug even if it is harming the person or others. People who become addicted often deny that they have a problem, even as they desperately try to maintain the supply of the drug.
Addiction is a “bio psychosocial” disease. This means that most people who become addicted to drugs are probably predisposed (it is in the genes) but only develop the problem if they have access to the drug and take it at a time and in a way that leaves them vulnerable. A very large experience in the treatment of patients with chronic pain indicates that the risk of addiction among people with no prior history of substance abuse who are given an opioid for pain is very low. The history of substance abuse doesn’t mean that a patient should never get an opioid for pain, but does suggest that the doctor must be very cautious when prescribing and monitoring this therapy.
People with chronic pain should understand the difference between physical dependence and addiction. Unreasonable fears about addiction should not be the reason that doctors refuse this therapy or patients refuse to take it.
Tolerance to opioid drugs occurs but is seldom a clinical problem. Tolerance means that taking the drug changes the body in such a way that the drug loses its effect over time. If the effect that is lost is a side effect, like sleepiness, tolerance is a good thing. If the effect is pain relief, tolerance is a problem. Fortunately, a very large experience indicates that most patients can reach a favorable balance between pain relief and side effects then stabilize at this dose for a long period of time. If doses need to be increased because pain returns, it is more commonly due to worsening of the painful disease than it is to tolerance. “
Vic is “embarrassed” the amount of medication she needs to take to control her pain. She is oversensitive to the point of being paranoid about being called an addict.
Is my child an addict? Hell no!! Does it worry me that she needs increasing amounts of medication to handle the pain associated with the deterioration of her little body? Hell no!! Whatever it takes for one pain-free moment in her little life! Tracy to you and all the other chronic pain sufferers out there – I wish you all a sympathetic doctor, nurse and pharmacist!
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.
We are seeing a GP tomorrow morning regarding Vic’s arm. Both her arm and hand are so swollen that I am concerned that she may actually lose her arm. It has now been more than a month from the day that she fractured her arm. When I bathed her tonight I removed part of the dressing that is protecting her arm. Her arm is still black and blue and horrifically swollen. I am convinced that she has pressure sores under the cast.
Today was a truly exciting day… (Relax, I am being facetious)
We phoned the Orthopod that treated Vic in hospital. Sorry, he (Dr Y) can only see Vic next week! We then phoned her original Orthopod (Dr V) with the permission of Dr Y. Dr V’s receptionist informs us that Dr V will only see Vic with the written consent of Dr Y. We tell her that Dr Y is too busy to write a letter but has advised us to get Dr V to phone him (Dr Y) if he needs to speak to him. “We will not even allow you into Dr’s rooms without a letter. Doctor V is too busy to phone. Get a letter if it is so urgent for you to see Doctor!”
Well!!! What the hell do you do? You cannot force a receptionist to allow you to see a doctor. Even if you force your way into the consulting rooms you cannot force a doctor to see you.
The fact that Vicky is terminal does not give any doctor permission to wash their hands off her. It is written into our Constitution that every citizen of this beautiful country has the right to medical care!! “In terms of South Africa’s constitution each person is entitled to human dignity, equality and freedom. This should also be the case when a patient receives medical treatment in the private and public sector.
The Government has an obligation to protect the life of every person in South Africa. The patient has the right to receive medical treatment.”
I promise anyone who cares to read this or hear me: if there is permanent damage to Vic’s arm, I will sue both doctors, regardless of her overall medical condition.
Tomorrow we will see Vic’s GP and hopefully she can get Vic into an Orthopod’s rooms! Why only tomorrow? She is too fully booked today to see us today…
Today I had a message from Dr Jaffer Hussain asking whether the Jurnista is working. Not only did he care enough but he asked whether I wanted him to ask Prof Froehlich to motivate Hospice?
I received a message from my brother today that read:- Often when we lose hope and think this is the end, GOD smiles from above and says, “Relax, it’s just a bend, not the end!”
Is there hope after all? I am cautiously optimistic!
Tomorrow afternoon we see the Urologist. Strangely I am at peace about Jared. God cannot be that cruel so I trust in a positive outcome!
JD (Jared’s Dog), is 15 years old and suffering from 3rd degree congenital heart failure. In human years JD is at least 105 dog years old. She has been such a healthy little dog but is now starting to battle. She coughs throughout the night and end up sitting upright to breathe easier. When I get home she is so excited that she has a coughing spell.
JD follows me where ever I go. If I step back I step on her. She sleeps in my room. JD and I have a system worked out. When I come out of the shower she is already waiting for me. When I go downstairs, with her in tow, her little tail is wagging and she is clearly very excited to see what little snack she is going to have. I know she is not supposed to have little snacks but heaven helps the person who tries to feed me hard, dry biscuits when I am 105 years old!
I do not want JD to suffer any further. Tomorrow morning she will go to the parlour one final time. In the afternoon she will have an injection at the vet and gently drift off to Doggie Heaven. Vic and Jared want to go with her.
I am a coward. I do not have the resilience and strength to take her.
It was with fear and trepidation that I gave Vic her medication last night. Esther, (Vic’s big sister and a pharmacist) asked me whether the Jurnista replaced the morphine and was just a little surprised that it was in addition to the Morphine, Neurontin, Degrenol and Stilpayne. My research really scared me yet strangely I was at peace.
By 24:00 Vic felt no difference and her pain was at a solid 9. By 02:00 her pain was a little easier. Vic had a fairly good night. But she is having a very good day!!! The Jurnista appears to be working! Vic rested well this morning and went out for coffee with Tracey! How absolutely amazing is that!
Last Sunday, Frik, a Christian colleague phoned me after church and asked me to give Vic a message. “Please tell Vicky that God wants me to tell her that He loves her”… She was too ill and I only told her on Tuesday. I missed the Tuesday Pain Clinic appointment… On Thursday the Pain Clinic doctor is a wonderful, compassionate, young Muslim man who showed mercy and compassion …
My faith has often wavered over the past ten years. Not in God but in a God of Mercy. The actions of the church, Christians, doctors, nursing staff, radiologists, Hospice, family and friends, mostly reflected a cold, loveless society that does not begin to understand what compassion means
When we first received Vic’s death sentence there was an absolute outpouring of love. But I suppose she did not die soon enough and people slowly and discreetly disappeared out of our lives. My blog is three months old and most of you too may get tired of the waiting game and stop reading it and disappear into cyberspace. Well, this time you cannot hurt us because you are faceless.
I am digressing. This week we were reminded that there are still angels around. A compassionate man who prays for pain relief of a young woman he has never met, a doctor who prescribes palliative care medication… The Jurnista could hasten Vic’s imminent demise but I don’t care. I would rather she spend one pain free day with her boys and family than a lifetime in the pain that she lives with.
Many people have left wonderful caring messages on my email, comments on the blog and Facebook. Thank you! It really does mean a lot to us. Vic does not read my blog neither do her boys. But Vic has truly appreciated the contact some of her old school friends have made. As I said before, dying is a lonely business!
But today we celebrate the wonderful new drug! I thank God for sending angels along our way. I thank God for His message through Frik, when I was at the lowest low in my life!! I thank God for Dr Jaffer Hussain! I thank God for your messages of encouragement and above all I thank God for Vic’s good day! Thank you, thank you, thank you God! Even if it is only one good day!
Some people take their time and linger. Some people get it over with quickly. For some dying is hard work. But all of us are heading towards the same destination. Passing through our physical stages of dying. Into death…
“Hope provides us with the psychological and emotional energy to accomplish what those without hope often considers the impossible.”
The journey of dying has many stages – I have heard it called check-in stations. I know that some people bypass some of the stages/stations. Some people take their time and linger. Some people die quickly and easily, like my beloved Dad and best friend Marlene.
My dad suffered with a terminal illness called Alzheimer’s. It was dreadful seeing that proud, dignified man’s brain slowly degenerate. He lived with us for the last 18 months of his life.
After a year we decided to employ a full-time caregiver to keep Dad company and to assist him with daily tasks such as showering etc. On the 28th of April we had a wonderful day with all the kids – our annual Easter Egg Hunt. Dad played with the little ones and at the end of the afternoon abruptly got up and walked off. We let him be – he got tired of people and confused after a while.
An hour and a half later we walked one of the kids to their car and found Dad on the little bridge outside his flat. He had fallen and was unable to get up by himself. I remember thinking that I would have to move the bridge. Obviously my Dad’s balance was deteriorating. I also remember thinking that it was such a pity about the bridge – it was such a pretty feature in the garden…
On the 2nd of May 2011 Dad’s eyes are clouded over and he slept all day. He recognized no-one and his legs no longer received the walk commands… Every time he got out of bed he would fall. I was sleeping on the second bed in his room so I could hear him get up. I would put my arm across his chest so I would wake up when he moved.
On the 4th of May 2011 Vic was admitted to hospital for operation number 80. On the 6th of May Vic spent 6.5 hours in theatre with her colostomy reversal. The first time ever Brendon Bebington did not use the dreaded words – “I am cautiously optimistic” However in true Vic form Vic went back into theatre on the 7th of May for another 3 .5 hour procedure. Richard, the anesthetist, inserted the needle into the wrong vein when they mainlined her… Vic had asked him to try and avoid getting her hair all elastoplasted. Even the pain of the Elastoplast in her neck is too much post-op. Apparently it is not a common error but it happens. With Vic’s blood clotting problems is was a dangerous little exercise getting the needle out of the artery…
By the 9th of May I was absolutely exhausted. I had been unable to spend any time with the boys. And they really needed me. Between Vic/hospital/work/ Dad and the boys I was absolutely torn.
That night I did not hear my Dad get up during the night. He fell again. We managed to get my Dad back into bed but at 12:30 the next day Dad fell again and this time he was hurt badly. Dad was admitted to hospital and due to the need for 24/7 care was admitted to ICU. Whilst Dad was being admitted I had a phone call from my best friend Marlene’s mother saying that she found Marlene in her room, she thought Marlene was dead. Thank God Danie was with me and he stayed with Dad when I rushed off to Marlene’s.
My dearest friend was dead. She had simply had a heart attack and died! I had tried to phone her from the hospital to tell her about my Dad whilst she was dying herself!
The next day I met with the medical team. Dad appeared to be in a coma. The physician said that Dad had pneumonia. The Neurologist confirmed that Dad was in the Severe advanced stage of Alzheimers. The Specialist surgeon wanted to operate on my Dad’s aneurysm.
I made the heart wrenching decision that there would be no aggressive treatment of the pneumonia. There would be no operation. The Physician agreed with my decision.
On the 13th it was my dearest Marlene’s funeral. The next day I discharged my Dad from the hospital and brought him home. We had received the Hospice bed and Hospice had evaluated and accepted dad as a case. On the 16th Dad had a lucid visit with Ester and Yuri and Hospice started administering Morphine, Dormicum and Serenace subcutaneously. Dad battled to swallow and I was pretty distressed about his liquid and food intake. Dad’s core body temp had dropped to 34.5 degrees C. Hospice said that Dad’s body had started shutting down and not to worry about his food or liquid intake. On the 17th my beautiful father cried during a lucid moment because he could not articulate his thoughts and he was mumbling …
I played his favorite classical music and tried to keep him comfortable. I treasured every moment that I sat and listened to his labored breathing but I was at peace. There was nothing unsaid between the two of us. Yet I was so sad…I did not expect it to happen that soon.
On the 20th of May my Dad lost his battle against Alzheimers when he forgot how to breathe. Twenty three days after his first fall…
Why the detailed timeline in this post?
Some people take their time and linger. Some people get it over with quickly. For some dying is hard work. But all of us are heading towards the same destination. Passing through our physical stages of dying. Into death…
For a long time Marlene wanted to die. She did her best and yet only when it was her time did she go. Not on her timing, terms or conditions. But when her time came it was quick and hopefully not too painful. Marlene wasn’t ill. She was sick of life!
If I could ask my dad I think he would have been surprised at how quickly he died. Do I regret my decision to not allow aggressive treatment? No! I hope that if ever I am in the situation that my Dad was in someone would afford me the mercy to allow nature to take it course!
Vic has lingered for 10 years… It is really hard work for her…
“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!!!
Author Unknown” http://connectivetissuedisorders.wordpress.com/2011/05/20/tips-for-dealing-with-people-in-pain/
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…
Vic's Final Journey 