Sometimes You Just Need a Fork….

Spoons

What is the obsession with chronic pain patients and spoons anyway?

Well…I can tell you…

Thank you to Christine Miserandino for finding a way to explain chronic pain conditions to others.

Here is just a little excerpt about the spoon theory taken from http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

(P.S. I full recommend reading the entire article to get the full impact of her story.)

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

 

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

 

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

 

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

 

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

 

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

 

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.”

 

While I think this theory is wonderful in its ability to bring an understanding to how chronic pain patients have to manage their days…and their lives for that matter, I have a feeling a lot of chronic pain patients are like me, and waste their spoons pretty quickly and then try not to spend the rest of the evening with guilt or regret.

I look at it this way…As long as I waste the spoon on something good I can forgive myself…

But I definitely need to stop wasting them on things like trying to be the perfect mother, trying to keep the house spotless every day, worrying about work when I’m not there, blah blah blah…all those things that don’t require my energy.

And when it comes down to it…

Sometimes you just need a fork…   Fork

Maybe the cost of a fork is three spoons.

Have you ever tried to eat a salad with a spoon?  I’m sure it would end with a lap full of lettuce and dressing stains.

Have you ever tried to keep up with a 10 month old while trying to conserve energy at the same time?

Would you ever try to get someone’s attention by poking them with a spoon?

I bet a fork would be way more effective to poke a Doctor who isn’t paying attention to your symptoms or is leading you in the wrong direction.

Sometimes you just need a knife…Knife

Maybe the cost of a knife is 5 spoons…

You can’t cut a steak with a spoon and let’s face it, steak is one of the most delicious, wonderful foods ever!

Spending the holidays traveling to see family and spend time with loved-ones is wonderful too…even if it costs me days-worth of spoons.

Have you ever tried to cut something with a spoon?

Have you ever tried to work out after, or during, a bad flare-where it feels like your body is being cut my knives?  It hurts, but you know you have to do it or you may not regenerate your spoons for the rest of the week.

*I don’t recommend poking your Doctor with a knife…reserve that only for a knife.  While Doctor’s are frustrating, having the wrong one isn’t worth the trade in for the cost of a knife.- and the fork will probably get you in a lot less trouble**

I think that chronic pain patients learn to appreciate the little things you do when you are ONLY given a spoon…

A big bowl of ice cream.

Ice cream

Help opening a jar when arthritis is too bad.

Jar-Spoon

Watching my son taste a flavor for the first time in his life on his little spoon.

baby spoon

Stirring the perfect flavor of creamer into the first cup of coffee for the day.

 coffee

It’s a constant trade in…and everyday has a different table setting.

Table Setting

Needles, Needles, Needles…

Working in a physical therapy clinic has educated me about chronic pain more than I imagined.  I’ve learned about, and been able to try treatments I never knew even existed for chronic pain.  Most recent of these treatments?

Functional dry needling…

Here is a brief description of the process and purpose of this treatment, from www.kinetacore.com

Dry Needling is a general term for a therapeutic treatment procedure that involves multiple advances of a filament needle into the muscle in the area of the body which produces pain and typically contains a trigger point. There is no injectable solution and typically the needle that is used is very thin. Most patients will not even feel the needle penetrate the skin, but once it advances into the muscle, the discomfort can vary from patient to patient. Usually a healthy muscle feels very little discomfort upon insertion of the needle; however, if the muscle is sensitive and shortened or contains active trigger points, the subject may feel a sensation much like a muscle cramp, often referred to as a ‘twitch response”.

The twitch response also has a biochemical characteristic to it which likely affects the reaction of the muscle, symptoms and response of the tissue. Along with the health of the tissue, the expertise of the practitioner can also attribute to the variation of discomfort and outcome. The patient may only feel the cramping sensation locally or they may feel a referral of pain or similar symptoms for which they are seeking treatment. A reproduction of their pain can be a helpful diagnostic indicator of the cause of the symptoms. Patients soon learn to recognize and even welcome this sensation, as it results in deactivating the trigger point, reducing pain and restoring normal length and function of the involved muscle. Typically, positive results are apparent within 2-4 treatment sessions but can vary depending on the cause and duration of the symptoms, overall health of the patient, and experience level of the practitioner.

Dry needling is an effective treatment for acute and chronic pain, rehabilitation from injury, and even pain and injury prevention, with very few side effects. This technique is unequaled in finding and eliminating neuromuscular dysfunction that leads to pain and functional deficits.”

Sound scary?  I agree!

Before I would even attempt this, I watched one of my co-workers go through the treatment.  I knew since I would more than likely be getting it done on my back or neck and wouldn’t be able to see, I wanted to see what was actually going on first to try to calm my nerves.  In hindsight, I should have just gone into it blind.

My co-worker was getting a place on his arm treated.  Basically it looks like this…

Gloves on…

Alcohol on…

Needle in…

Dig around with needle…

Dig around…

Watch my co-worker wiggle and flinch…

Electrical stimulation added to the needle to make it vibrate while it’s still in…

Co-worker says it feels good…

Needle out…

Done.

Of course, there is WAY more expertise, detail and navigation of the human anatomy that went into the treatment, but as far as what you can “see” that was pretty much it.

I was still nervous but did it anyway.  The PT started by giving me a background in dry needling and made sure to mention that, although the needles are the same as acupuncture, the treatment, evaluation and goals are all very different from acupuncture treatment.   She also stated I may be sore, like a deep ache, after the treatment.  I was only sore for an hour or so, and luckily had no soreness the next day.

I had built what I thought it would feel like in my head to the point where I actually got nervous enough for the PT to tell me to stop and breathe.

All in all…it really wasn’t that bad.  I got my shoulders and neck done (my trigger points).  Looking back on it, the intense ache I got during the treatment didn’t feel any worse than a flare, like during a strong weather change…and it only lasted a second or two.

Now to the most important part….

Did it work?

I was pain free in the treatment spots for almost one full week after only one treatment.  These are the spots where I have daily, nagging, never goes away, pain.  I just felt…normal.  I was able to turn my head in the car easier and didn’t feel my neck “stick” while reaching like I usually do.

I was extremely happy with the results and YES, I will do it again.

Our next attempt?  My sore hips from the psoriatic.

Next needle on my agenda?  Getting rid of the methotrexate!  My Rheumatologist Ok’d the switch from Methotrexate to a biologic because of the side effects I was having.  I am SO excited to have my Sunday’s back…and some of my hair back for that matter.

New needle to try?  Humira injections.

After weeks of working through to get my co-pay lowered ($8,000 a month without insurance, $100 copay with, and now $5 with copay assistance, thank goodness) the injection pens are sitting in my fridge waiting to be used.

Because of the potential side effects (nothing like methotrexate from what I’ve heard) I am choosing to wait until after the holidays to start the injections.  I don’t want to miss out on any of the holiday events, or have a possible bad reaction, etc.

While this is great, it’s also a double edged sword.  I’m swollen, sore and crack and pop every time I move.  Once the methotrexate started to leave my system, this all came pouring back unfortunately.

I have high hopes for Humira, as it seems to have helped quite a few psoriatic arthritis patients based off the reviews and the posts in my support group.

As usual…

Only time will tell.