Let me start by stating quite simply, writing an article with this as a title is damned ballsy of me. To look at me or interact with me you probably wouldn’t believe that I live with Chronic Pain. However, by the time I’m done, I hope to not only to explain the horror of living with {en:Chronic pain|Chronic Pain}, but then explain how my experience is nothing compared to the woman I love being the one who lives IN Chronic Pain.
Did the preposition throw you? I am basically a physically healthy 42-year-old, Caucasian, male. I have a son who is creeping up on the age of 3½. This of course means he has no boundaries, no patience, no strong sense of right and wrong, and most importantly, no real sense of when to back off.
Then there is my wife. A woman who succeeded in my life after an endless string of failed relationships to be the one who I would trust with my life and sharing the responsibility of raising children. Nearly two years ago while taking on that responsibility by driving to pick up our son from day care, while stopped at a traffic light, she was rear ended by a 19-year-old that was speeding. The details beyond that are inappropriate for further discussion beyond that; we are still working with a lawyer to try to get fair recompense from the driver’s insurance.
The result was that she was injured. And much like childhood mental abuse the damage does not leave visible scarring. At first we thought it was mild whiplash. But, for some reason, no matter what the doctors told us at first, it kept getting worse. After 4 or 5 doctors an MRI showed us the permanent spinal damage. This is the kind of spinal damage that causes endless pain, doesn’t go away, and really has no cure; contrary to the impression that the medical industry gives you.
Now, let me explain what it’s like to watch someone you love in chronic pain. Imagine stubbing your toe really badly. The pain from that proceeds in several distinct phases: the Impact, the Blammo, the Wash, and the Recovery.
The impact. Usually it hurts immediately, but not always. When it does hurt, it’s like a blast from your body realizing what’s going on. This is the Blammo. This is when you are grunting, hollering, or expending a rather large and noticeable interjection (more often than naught unacceptable for school children).
After the Blammo we move right into the Wash. Whether the pain subsides or gets worse can determine how serious the problem is (did you stub your toe or cut it off?). The Wash is the recovery phase where the brain says, “Hey that was pain and I need to expend your daily energy supply to get you through the shock.” Typically you signify this by not responding to worried questions from bystanders. You are too busy dealing with the pain to really be able to do anything else. This is the part the sucks the most for a loved one, because the person who is hurt is suffering but really not consolable and now is not the time to offer assistance. The wash subsides and then we laugh about clumsiness. The toe may be sore for a little while after – that is the Recovery.
But hey, that’s a stubbed toe. The whole episode is maybe 2-5 minutes. Chronic Pain? From my point of view we make two very specific changes. First, The “Blammo” is sometimes incredibly subtle to onlookers. Is it any less painful? Not that I can tell. So, why should the sufferer choose to be subtle about it? Well, let’s look at the other change. Let’s pretend that the Blammo could last for 15 minutes to 6 hours. Let’s pretend that the wash lasts for 4 hours, 8 hours, maybe 4 days. And let’s pretend that the Recovery (and the exhaustion it causes) lasts for about 2-4 hours until the next Blammo. What if the Pain and the Wash basically become indistinguishable? What if one Wash caused another Blammo? What if reacting to one Blammo caused another Blammo? Do the Washes combine, overlap, or increase? What if the phases were about as clear and definable as mud?
In the case of many Chronic Pain sufferers you may also likely deal with the complication of {en:Fibromyalgia}; a short-circuiting of the touch sensors that sometimes can make the lightest touch set off a “Blammo.”
When you ache or suffer post pain wash, you are expending energy. So things like making people worry and hang over you for the hours that there’s nothing they can do about it… that’s just more annoyance that’s exhausting. And for the person watching it? It’s just the person you love suffering for most of the waking day and there’s pretty much NOTHING you can do.
As caregiver, your job is to not waste more of the precious good energy that a chronic pain sufferer has. Communication where appropriate to learn the subtle differences between “I hurt, go away” and “I hurt, be here.” While it seems that there shouldn’t be a subtle level of difference here, you have to accept that there will be because it will occur typically when the person is in the most pain. They are too busy trying to minimise uncontrollable pain and transition into a wash that won’t cause more pain.
This is a frustrating job. And it’s most frustrating because this situation typically is not the fault of the suffering person. You can find yourself frustrated at the situation but NOT the person.
At any time in this have you considered what could be going on in the mind of the person suffering? This is a person who lives with the things that they may no longer be able to do anymore. By helping them accomplish things you are taking the burden off them while at the same time parading in front of them the things they can’t do.
You are a cheerleader. You are there to make them feel as much themselves as you can. You have to be prepared to let them burn some energy in the few good hours despite the massive dip it may occur because it is the rare sense of normalcy that makes it all endurable.
The hardest part is the communication. When a person lives in pain; finding the middle ground over something as amorphous and unpredictable as pain can be maddening. Further, trying to talk reasonably about it can be just as mentally painful for everyone as the sufferers physical pain is. (But it truthfully probably isn’t)
Because, as much as you sympathise, living with someone IN Chronic Pain, you cannot understand what it feels like. I had a strained muscle in my shoulder that was not getting taken down by OTC pain meds. It lasted for days and I felt like hell. And I still have no idea what it’d be like to have something even 10 times worse that just never goes away.
Personally, I think that any Doctor that’s going to deal in pain management should be put into Chronic Pain for a month. During that time they should have to fight their own bureaucracy and paperwork, spend hours in uncomfortable waiting rooms, be subjected to the repeat humiliation of feeling like they have no idea what they are talking about, and be given false hope at every turn.
As a caregiver I also get to interact with the medical industry. There are no cures for Fibromyalgia. There are no cures for {en:Syringomyelia}. And most of the Pain Clinics don’t know how to deal with neuropathic pain; this is pain that comes from problems in the spinal chord communicating with the brain. Pain clinics understand muscular pain. Shove a needle in your back filled with cortisone and come back in x weeks.
What’s even more fascinating at this level of the medical industry is how severely the system doesn’t work. Your primary physician is not really qualified to manage chronic pain. They ‘refer’ you to a pain clinic. Typically this is the Clinic that the hospital they are aligned with suggests. You then contact the pain clinic. The pain clinic then tells you the following:
Have the doctor contact us and send us all your medical history and your insurance. In some cases if you’re dealing with a lawyer they won’t talk to you. (There’s a fear that they may have to testify in court and risk being torn apart by an insurance lawyer who’s purpose is to discredit them rather than actually listen to their testimony). Once the medical admins on both sides (People reallllly invested in your care… okay… really invested that they’ll be able to get your co-pay and bill your insurance) have exchanged the necessary paperwork, now you wait.
You are waiting for your stack of papers to climb to the top of the doctor’s stack for evaluation of your case. This can take a month. They will tell you it should be a week… but doctors “get busy.” Interestingly, if they forget to get back to you it’s possibly because they were given the wrong number (which really should make you worry that if they can’t get that piece of information transmitted correctly, do you really trust the quality of medical records being transferred.) Maybe it was the admin who forgot to call you back. (Similar to how they may forget to call in your prescriptions when you run out of painkiller). Interestingly, if you follow up and find out why there’s been a delay that often does little more than move your file lower in the stack. I remember because I called one and asked why it’d been three weeks and they said my wife’s file was the next one up after the current one. The following week I was told it was in the top 5.
After a month of wait with two separate Pain Clinics I was told that the Doctor wasn’t going to take the case. The reason was that he didn’t handle her specific type of spinal damage. I was tempted to fire on all chambers because one actually listed her specific type of spinal damage on his web site. The excuse I got was, “That information isn’t current.”
I strongly recommend the paper to doctors called, “How Not to be a Dumbass” by the blogger Jenny Ryan also known as “Cranky Fibro Girl” who has eloquently written what dealing with these issues is like. Please read her blog.
Writing a posting like this is not easy. Because I go back to a comment above, “By helping them accomplish things you are taking the burden off them while at the same time parading in front of them the things they can’t do.”
People often ask me how life is. People often ask how my wife is. For me… this topic is my Wash. I don’t want to answer it. I don’t want to think about it. I don’t like talking about it. Especially in front of the woman I absolutely love who has to live with it.
In my opinion the world and my life would be much more hollow and empty without her in it. And that is the thought I’d rather have than to have to linger on the pain that she has to live with.
My original goal of this post (okay, rant) was the hopes to communicate that no matter how hard we try to sympathise… the pain someone caring for a Chronic Pain sufferer is unbelievable… and it is still very small compared with the pain the sufferer is living with.
As much as I can not comprehend what someone living IN Chronic Pain feels like, most people also will not comprehend what someone living WITH Chronic Pain feels like. I guess I can find my relief in the knowledge that I may have a community of people in similar situations who do get it.
And that is just a smidge of what it’s like to live with Chronic Pain.
