Posted in Chronic Pain, Grief, Palliative Care, Terminal Illness, Uncategorized, Vicky Bruce

Sometimes the pain’s too strong to bare…and life gets so hard you just don’t care.


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http//www.scientificamerican.com

Today I read heart wrenching posts of bloggers who are in so much pain!  Katie Mitchell’s post filled me with a deep-seated sadness and a horrible, familiar feeling of helplessness.  I am so sad and angry for all the pain out there.

Katie blogs as follows:  Where do I even begin? I am hollow, at my lowest and very near the end of my rope. I’ve been in bone shattering pain now for a week and three days. Not my daily chronic pain, but a pain that is making me lose all faith in ever getting better, or ever surviving long enough to find out. I’m angry at the world and everyone in it, but most of all, I’m angry at a body that is failing me and falling apart.

I’m not suicidal, in fact it’s probably just the very opposite; I’m trying with all that’s left of my strength and going through hell just to live. When I have those thoughts; the ones where I do wish to no longer exist, it’s not because I want to die, it’s because I want need the pain to end.

I’ve been on a much higher dose of my pain meds then I care to be, but even with that I’m barely hanging on. If it weren’t for it though, I would’ve had no alternative but to check myself into the hospital and hope that they would help. I don’t even know if they would do anything for me. The experiences I’ve had with the hospital in relation to pain have never been pleasant or successful. At the most, you get a shot of pain killer and are sent on your way, no thought given to what happens when the medication wears off. Not to mention you’re often treated like a wussy or drug seeker.

My ribs slid back into place about a week ago only to subluxate once again not even 24 hours later. I still can’t bend, can’t breathe deep, dressing myself is a balancing act, showering is difficult and painful. And, I’m scared. Scared that this is a new stage in the progression of my disorder and the deterioration of everything holding my body together. I’m scared that they’re going to stay this way and that I’m going to have to learn to live with this new pain, a pain that made me wonder more than ever how I would ever survive to meet tomorrow. My tailbone is also dislocated or partially dislocated. It’s been doing this sporadically since I was about 10 or so but it’s also very painful none the less.

And then there’s my back. I almost get stuck in my bed everyday when I wake up. Between my ribs and the back pain I can’t sit up to get out of it. Half of the time I’ve been having to roll onto my hands and knees on the floor and struggle up from there. My toes and feet are constantly numb or tingling, my hips and legs are cramping and there’s a constant stabbing pain in my back. I have a doctor appointment on Thursday but I’m considering calling in today to see if they have an earlier opening. I don’t know what to do anymore, I can’t take it. It’s taken me four days of trying, to be able to write this. But I needed to unload and write out some of my thought and feelings. What else am I to do with them?

I’m sad. I’m tired. I have the desire and need to be comforted but am in too much pain to want to be touched. I’m uncomfortable with physical vulnerability but don’t have the energy or will to put on a brave face right now. And then, like I mentioned above; I’m angry and testy but don’t want to take out my pain on anyone that doesn’t deserve it. So, as much as it makes things worse I’ve still been isolating myself.

In the end, pain is a lonely thing.

http://connectivetissuedisorders.wordpress.com/2012/10/01/treading-water

I shivered when I read this post and for a while I was blinded by tears.  I do not cry easily. I reread the post…. How is it possible that one young person can suffer so much pain?

It is a basic human right for chronically ill patients to receive palliative care services while they are receiving life-prolonging or curative treatments…. Why is pain treated with so much disregard by the medical profession?  Is it because people on the other side of the prescription pad are inadequately trained or like me they have never experienced pain?

Doctors are taught that pain is a sign of illness.  In their quest to find and treat the cause, they often neglect to treat the pain.

Vic was treated by the pain clinic for the past five years.  The head of the department is a professor of Anesthesiology.  Vic’s surgeon has been operating on her for the past 10 years and performed at least 60 of her 80 operations.  He knows how little of her intestines are left….  So does the professor.  Yet both these doctors chose to ignore this important factor when managing Vic’s pain.

At best her absorption is extremely poor and we constantly battle malnutrition.  We fluctuate between mechanical obstructions and diarrhoea.  400mg of MST twice per day just accumulates above the heavy fecal loading or is literally being flushed from her system within a very short period of time.  Combine this with severe vomiting bouts…. Often we lose tablets, either end, which is still totally intact…. Maybe the Jurnista worked because it is a slow release tablet that absorbs differently to the MST.

“In simple mechanical obstruction, blockage occurs without vascular compromise. Ingested fluid and food, digestive secretions, and gas accumulate above the obstruction. The proximal bowel distends, and the distal segment collapses. The normal secretory and absorptive functions of the mucosa are depressed, and the bowel wall becomes edematous and congested. Severe intestinal distention is self-perpetuating and progressive, intensifying the peristaltic and secretory derangements and increasing the risks of dehydration and progression to strangulating obstruction.” http://www.merckmanuals.com/professional/gastrointestinal_disorders/acute_abdomen_and_surgical_gastroenterology/

intestinal_obstruction.html#v890928

Now with Hospice the team has realized that her tissue is too poor for subcutaneous morphine, tablets don’t absorb, morphine patches cause skin irritation….Now I administer morphine injections into the skin.  At least the Hospice team is looking for a solution and we have had more good days in two weeks than we had in six months!

In my book every single person is entitled to proper pain management.  In the past, management of chronic pain has often produced unsatisfactory results. For approximately 80% of the world’s population, pain relief when needed, is a right yet to be realized.  One of the chief reasons for this stems from misunderstandings about the pharmacological characteristics of morphine and other opiates.  Furthermore, in an attempt to limit the opium trade, barriers were put into place, to prevent people from accessing pain medications.

Morphine is an opioid.  A psychoactive chemical which has been used for centuries to treat acute pain….

A number of medical schools no longer teach opioid prescribing. Doctors inexperienced in the use of opioids do not know how to initiate, titrate, and withdraw the medication. Faced with undesirable outcomes in patients (e.g., respiratory depression after a rapid increase in dose), physicians have become reluctant to prescribe these medicines. Recent studies have proved conclusively that as long as the patient is in pain they would not develop a psychological dependence on the drug.  It is encouraging that the recent increased interest in the clinical pharmacology of symptom control has demonstrated that it is possible to use morphine safely and effectively, even in patients with advanced disease.

I have seen with Vic that freedom from pain actually prolongs life and allows the body to heal or recuperate.  It is virtually impossible for Vic to die of a morphine overdose even if the dosage is increased substantially.

The human suffering due to lack of pain relief is an affront to human dignity!

In South Africa a large portion of our population is HIV positive.  They live in rural areas where there are no doctors or pharmacies.  If they are lucky there may be a clinic with a nurse….  A doctor’s prescription is needed for morphine.  No doctor = no morphine = painful death.  In syrup form it is cheap!

What a cruel world we live in! When a young girl is fearful of seeking medical help in a first-world country it is truly a disgrace.   “I would’ve had no alternative but to check myself into the hospital and hope that they would help. I don’t even know if they would do anything for me. The experiences I’ve had with the hospital in relation to pain have never been pleasant or successful. At the most, you get a shot of pain killer and are sent on your way, no thought given to what happens when the medication wears off. Not to mention you’re often treated like a wussy or drug seeker.”

I am grateful to the Hospice team!  I am grateful that Vic has been spared further suffering.  We cannot prevent death only unnecessary suffering!

“Sometimes the pain’s too strong to bare…and life gets so hard you just don’t care.  You feel so alone you just sit and cry…every second you wish you could die.  Then you start thinking who would care…if one day they woke up-and you weren’t there.”   Unknown

I would like to list some of the wonderful blogs on pain that I follow slavishly.

http://fullcircledme.wordpress.com/2012/09/20/myths-about-pain-meds-vs-addiction-or-dependence

http://now.tufts.edu/articles/world-hurt-pain

http://ohwhatapain.wordpress.com/being-treated-like-an-addict

http://ohwhatapain.wordpress.com/2012/09/26/flares

http://walkingthroughpain.wordpress.com/2012/09/28/ahhhhhhh/

http://connectivetissuedisorders.wordpress.com/

Posted in Chronic Pain, Family Life, Grief, Palliative Care, Terminal Illness, Uncategorized, Vicky Bruce

Hospice Day 11


 

Last night was an absolute night out of hell.

The subcutaneous syringe driver was halted as Vic’s tissue is so bad.  Vic is now on 100mg Durogesic patches and morphine syrup.  Initially it appeared to be an okay solution.  Then the nausea started…. The pain steadily increased to absolute intolerable levels by last night.

Yesterday morning Vic was great!  She obviously still has some of the intravenous morphine in her system.  (I also gave her extra morphine syrup as a precaution).  She went to breakfast with her friend Angela and had a wonderful time.  She glowed when she got back.  Gill, my BFF, popped in for a cup of tea and was amazed (once again) at how well Vic was looking.  Madam was even wearing a shoe with a little heel (which we made her take off).

In the afternoon Vic started looking grim.  She was nauseous and suffering from abdominal cramping.  Her tummy was distending.

By 10pm last night Vicky was sobbing with pain.  By 11pm she was vomiting uncontrollably.  She has severe intestinal pain and I believe she fractured a vertebra with the vomiting.

This morning I had an early meeting.  Half an hour into the meeting Vic phoned sobbing uncontrollably.  I was unable to hear what she was saying through her sobs.  I just said “Baby, I am on my way…”

When I arrived at home Sr Ciza from Hospice was here.  She had given Vic a morphine injection and an additional 25mg Durogesic patch.  Vic was already looking so much better.  Ciza encouraged me to get a night nurse to assist me… She had written a motivational letter to the medical aid without my knowledge.  I don’t think I am ready for that yet.

Whilst she was vomiting last night I thought of how quickly she “crashes” and how the good times have almost disappeared.  Yesterday morning Angela actually looked at me with a question mark in her eyes when Vic said she wanted to go out for breakfast.  I nodded my “consent”.  You see I had just read a comment from an incredible brave lady.

my husband has expressed the same concerns you have over your daughter pushing too hard when she does feel better. it is so important to me when i do have a good day to get out or make dinner, even doing laundry makes me happy. it is a reminder that i am still me. while i see your point and his, i know how vic feels and know that for me it is worth the price i pay afterward to have that time where i feel like the old me. the me before.  My heart goes out to you all and say a little prayer for your continued wisdom and love. http://thedrsays.org/” 

Today I would also like to quote my “mentor into the world of pain” Tracy Rydzy   http://ohwhatapain.wordpress.com/author/ohwhatapain

The concept of illness as a way of telling you to slow down is frustrating, as I have always lived life in the proverbial fast lane.  Since my first surgery, my life has basically come to a screeching halt.  Any living I do is now in the slow lane, sometimes I never even make it off the shoulder.  I think one of the most difficult aspects of pain, especially during a flare, is the comorbid (I have to use my expensive Master’s Degree vocabulary sometimes) depression and mood swings. 

It’s hard to deal with the slow down.  I mean, generally, this is something that comes with age and is a natural part of life, but when it happens at 33, how the heck do you reconcile that?  Before “all this” I felt so strong.  I felt like I could take on the world.  I used to be busy everyday, all day and the craziness of my schedule was like a high.  Now, I have maybe a quarter of that activity, some days, I have none.  The worst part about slowing down is that the pain slows down my body, but not my mind (thankfully), so in my head I still feel like the woman who can go all day, do it all, run around all day and still have energy left to cook dinner and clean the house.  Nowadays I get up at 1030am on a good day, workout and do maybe one chore, and by the time I am done I want to cry from pain and exhaustion.  But I am still me.  I refuse to let the pain change who I am.

I still feel like I can do it all, but I can’t. The constant drive to push and do more is, at times, a gift and a curse.  I still push  myself to do more, even if it comes with the cost of a day in bed.  When it comes to physical therapy (and the accompanying weight loss), I know that I push myself too far, too often.  That part of my brain that refuses to accept this “new normal” can’t give up certain things.  One thing I can do is physical therapy, so I will do it as hard as I can and push myself, regardless of the cost to my body.  A couple of weeks ago I hurt my back (more) while driving and the surgical nurse, who knows me well by this point, actually said, “I tell most patients to slow down for a little while, but I won’t bother telling you that, I know you won’t.”

Sometimes the slow down causes resentment.  I get angry that those around me have a life and are busy and that adds to the mood swings and depression.  The weekends are the hardest because I want to do so much more than I realistically can, yet I watch friends and family run from event to event with no need to stop and rest.  For me, a trip to Wal-mart requires a rest.

Flares do bring up an interesting realization, though.  Until things get as bad as they are right now, I didn’t realize that I was in less pain before.  So, in essence, flares tell your body to slow down and take it easy, but at the same time, for me at least, it takes something bad to make me realize that before this, I was feeling a little better, at least by comparison.  Now if only I could return to feeling like crap instead of complete crap…

So, the bottom line is, what do you do when life slows you down?  http://ohwhatapain.wordpress.com/2012/09/26/flares

I wish I had understood Vic’s pain-filled world earlier.  I am so sorry for getting angry with her for trying to live.  I wish we had more time.