Opiate Withdrawals Are HELL

In the course of the last few weeks, my husband and I took a quick trip from home (Victoria, BC) to Calgary to visit family and friends. We did the 12-hour drive there in one day and I’ve realized I just can’t do that anymore. Even trying to sleep in the car was painful – front seat or lying in the back. We did lots of visiting, I rested as much as I could, and we did the drive home in one day as well.
When we got home, we bought a house.
We have been house hunting for a while now and I found a listing that we passed to our realtor, who set up a viewing for us. As soon as we saw it, we knew it was perfect. It’s a single level 2 bedroom, one bathroom with a garage. There’s a good size kitchen plus dining area, a large living room with fireplace, the bedrooms are both a good size and there are two patios, one in the front and one in the back. I have 4 different rose bushes in the front of the house, lining the sidewalk, and a hydrangea in the back garden – my two favourite flowers in the world. There’s also a planter for other flowers, and we back onto a green space. Conditions come off at the end of the month and we move in mid-October.
So…what does all this have to do with Opiate withdrawal? Well, simply put, I screwed up my timing for my doctor appointment to renew my prescriptions. I ran out of my prescription of my Oxycontin on Monday, and the earliest I can see my doctor is Friday. And so I’ve been getting by through the use of all the “leftover” meds I’ve hoarded when I’ve had extras after a prescription has been filled. Or when I’ve “skipped” a dose during the day, just to have some extras in case of a situation like this. My current dose is 40mg, 3x per day, plus all the other meds I take. I also have some leftover morphine from my husband when he was dealing with a back injury. I’m taking whatever drug cocktail I can come up with just to get through, as stupid as that may be.
Why don’t I go to the ER? Because despite the fact I have well documented chronic pain, and I only go to one pharmacy for my prescriptions, I still feel like I’m being treated like a drug addict when I go there presenting with pain. I would rather deal with it at home than risk being ostracized or embarrassed. Yes, you read that right. I would rather be in pain than risk being seen as a drug seeker. The saddest part of this is that I sit on two different medical committees as a Patient Advocate, and I’ve told them this, and even though the doctors and nurses on these committees have told me how much that hurts them to hear that, it still happens.
So…I am praying for Friday to get here because Opiate withdrawals are hell, and I don’t wish this on anyone.
but there is always hope.

Tips On Dealing With A Person In Pain

I thought I’d share some tips with you on dealing with a Person with Chronic Pain (PwCP).

1. A PwCP may seem unreliable to others (heck, we can’t even count on ourselves). When we’re feeling good, we plan and promise (and genuinely mean it); but when the pain hits, we compromise, adjust or even cancel, because we simply can’t manage through the pain.

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 and even harder to explain.

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. You may have to repeat a request or write things down for a PwCP. Don’t take it personally, or think that they are stupid.

4. The senses can overload for a PwCP. For example, noises that wouldn’t normally bother you can be overwhelming to us, especially if the sound is repetitious or high pitched. Certain sounds that bother me personally include metal against metal (i.e.: two forks stuck together), the smoothie maker, or repetitious sounds I can’t identify. 

5. We don’t have an abundance of patience when it comes to things like waiting in a long line or listening to a long drawn-out conversation. Our pain levels are usually fluctuating and we mostly want to get back to our “safe places”, such as the home. PwCP don’t want to be seen as rude, ever…but we may come across that way if we seem in a rush to get away.

6. PwCP need and value a support system, so this next point is really difficult. Please don’t ask “how are you” unless you are genuinely prepared to listen to the answer. Chances are, we’re only going to answer you with “fine” anyways, to save you from how we’re really feeling.

7. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like loading the dishwasher, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK. There’s no way of knowing when this will happen. We’re not being lazy when something doesn’t get done…we may just be trying to get over a hurdle.

8. Pain can come on fairly quickly and unexpectedly. Sometimes it lasts, and sometimes it abates after a short rest. A PwCP may appear perfectly fine one moment and look like they’re at death’s door the next. It doesn’t take much to wear us out – but often, when we’re in the middle of something fun and dear to our heart, we will continue on long past the point we should have stopped because it makes us feel normal

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 PwCP knows there is a refuge if needed. A PwCP may not want to go anywhere that has no refuge (e.g.no place to sit or lie down).

10. Small acts of kindness can seem like huge acts of mercy to a PwCP. 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.

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. Just know that when we say we hurt…we hurt. 

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 doesn’t reduce the pain, – it only reduces our ability to give it a label. Having you believe us is still the most important thing that we need to feel validated.

I hope this helps a bit to give some understanding of how PwCP work. If you have questions or comments, I’m happy to reply. Thanks for reading and as always…

there is always hope

the first post…

Well, here it is. The first post on my new blog “there is always hope”. I’ve decided to start a blog to share my experiences with having an invisible illness (or in my case, illnesses), as well as to document my journey through having a Total Hip Replacement. Thanks for joining me!

My name is Pamela. I’m 54 years old, living in Victoria, BC (Canada) and married to the most amazing hubby a gal could ask for. Ray has been by my side since we first connected in 1994, through a telephone dating service, back before the internet was even a thing. We hit it off immediately and after chatting for 6 weeks, finally arranged to meet in person. He cooked an amazing dinner, I made a fabulous dessert, that first date lasted for 3 days and the rest, as they say, is history.  😉

Cruise002
I have 2 children from a previous relationship. They are now adults – Troy is 34 and lives in Calgary and Ashley is 33 and lives in Vancouver. Ray and I are also grandparents to three cool boys – Eric (17), Jeddy (15) and Calen (11).

For as long as I can remember, I have always had some type of pain in my life, generally in my hips. Even back in my elementary school days, taking part in Phys Ed was tough – a lot of the stuff we did left me hurting so bad for days afterward, I just knew it wasn’t “normal”. I saw doctors, who basically said it was growing pains, but when you top out at 5’2″ as an adult, I tend to think that might not be the right answer.

Something else we checked into related to a condition I was born with, called Brachydactyly. I have bone missing in my ring fingers and corresponding toes, which makes them much shorter than they should be, and there’s improper knuckle formation as well. But, no…that didn’t seem to add up either, so basically, doctors had no answers and I was left to deal with it.

I learned to cope with it – it wasn’t agonizing or ruining my life, it was just different than what everyone else seemed to experience. Now of course, when I look back on it, I can see that I likely had Fibromyalgia as a pre-teen/teenager and may have been developing osteoarthritis at an early age as well.

Fast forward to adulthood though and the health issues are a lot more complex than “growing pains”. The list is long, but it’s all a part of who I am:

  • Fibromyalgia
  • Osteoarthritis in most of my major joints
  • Myofascial Pain
  • Trigeminal Neuralgia
  • Diffuse Idiopathic Skeletal Hyperostosis
  • Chronic Pain
  • Chronic Fatigue Syndrome
  • Raynaud’s Disease
  • Internal Adhesions/Scar Tissue/Chronic Pelvic Pain

  • Diabetes Type 2 (on insulin)
  • Bipolar Disorder

I haven’t had a pain free day in so many years, I don’t think I can even remember back that far. In 2004, I had surgery for severe Gastric Reflux disease, which led to some nerve damage around the sternum area. Over the following few years, I have several other surgeries and hospitalizations, including having my left ovary removed after a cyst burst (2006). Then my gallbladder had to be removed in an emergency surgery (2007) and 2 months after that, my right ovary was removed, again in emergency surgery (2007).

Those last three surgeries all happened within 6 months….my body was completely overwhelmed and I went into a major Fibromyalgia flare up that I don’t think has ever completely gone away. My daily pain is generally a 4-5 on the pain scale – and that’s with me taking various pain medications and other drugs, and using pain management techniques.

I don’t know if you’ve seen the various pain scales out there that doctors use to judge the level of pain you’re experiencing, but let me introduce you. This is the standard doctor’s chart:
Standard-Pain-Scale
This is the chart that people who suffer from chronic pain prefer to use:
ABetterPainChart
Thanks to Allie Brosh from Hyperbole and a Half for this – here’s the link to the post it originated from: Pain Scale

So, this is the first post of what I hope will be many, to share my journey of living with Chronic Pain and Chronic Fatigue. It’s about living with Invisible Illness and often having to prove that yes, there’s a reason you use a handicap parking pass. And it will become a journey of having a Total Hip Replacement at a relatively young age (haha!), because I couldn’t find a whole lot of personal experiences when I searched Google. I’m the curious sort – I like to know how other people’s experiences have been. I know the clinical stuff…what I want to know is the real-life stuff that patients experience. I’m passionate about that, and I’ll tell you more about that and why in another post. Until then…thanks for reading, and remember…

there is always hope