I had an extremely positive appointment with Dr. Tompkins last night. I have been feeling good to very good for just over a week now so we have decided I can attempt some very minor "extra exercise" like a 5 min. bike ride or a 15 min. walk. It is not much, but it is very important to remember to take baby steps. Going too far too fast will only give me a set back so there is no sense pushing it.
Today I am going to blog about record keeping. I have been very guilty of calling myself lazy when I don't cook properly or do my homework I'm to do for my appointments with Dr. T, but last night Dr. Tompkins gave me a different view.
People who suffer from chronic pain are not actually lazy so much as they are suffering from a cognitive disability. This means that they have been so ill for so long that they literally are incapable of figuring out how to fit anything else in besides the pain. So something as simple as recording the days events or to figure out a quick meal to cook is just too much work and can be cognitively impossible. So I have to give myself (as well as all the other people I've called lazy) a bit of a break. Pain is very debilitating, and it doesn't just physically stop us; it can mentally and cognitively stop us. That is why you may hear fibromyalgia sufferers say they are suffering from brain fog.
So keeping in mind that we are cognitively disabled, it is pretty easy to understand how we can become forgetful, misinterpret things in our lives and lose our sense of time. This is why record keeping can be so important. Dr. Tompkins has developed various charts to help her patients keep track. It is also a very positive tool to look back upon to see just how far we've come.
Below you will find two charts, one is just empty, the other is one I had previously filled in. Dr. Tompkins calls these bubble charts. This is how her patients track their pain and the possible things that contribute to making them feel better or worse.
So it is pretty obvious how these are filled in. Some patients are in so much pain that their charts are a lot more detailed. They have to record their pain literally hour to hour. I pretty much split my charting in about 4 hour increments. The colouring is my own idea!! I use purple (my favourite colour) when I am feeling Very Good or Excellent, pink when I am Good or Fair and blue when I am Poor or Horrible. I have been filling these charts in since July 2011 and I am happy to say I have only had less than 3 months worth of Poor or Horrible... and most of that was recorded when I was going through my gall bladder problems.
When Dr. Tompkins looks at my charting she is looking for a couple of things. Most importantly, it tells her how I'm feeling but equally important is looking for consistency in pain. So she is mostly hoping to see levels consistently at good for a few weeks then consistently increasing to excellent. Patients who are constantly jumping around can usually pinpoint something that made them feel so good or so poor. Most times when I have dips, I can look back and see that life was particularly stressful, work was extremely busy or I had pushed myself too hard or too much. And sometimes I have fallen of my "plan" and have eaten what I shouldn't have or missed vitamins or haven't eaten enough protein.
You will also notice the circled numbers at the bottom of the charts. Those are my "active" hours in a day. This means time when I am not resting with my feet up! So even if I am sitting, like at my desk at work, it is usually considered "active" time. My goal is to be in excellent levels while having about 100 active hours a week or about 15 active hours a day.
I have never seen another patients logging (obviously) but I do know that I detail things for my own records to help me remember when I've done something such as the day I started taking my Folic Acid supplement or when I start my period (as that is usually something that puts me into poor or horrible). I have also been logging whether or not I take codeine. It is another goal of mine to be completely codeine free by 2013... and I am well on my way to reaching that goal!! I think these kind of records are important.
I learned the hard way just how cognitively disabled I was. Dr. Tompkins had asked me when I had started taking gabapentin (a nerve blocker) when I first started seeing her. I was positive I had only been on it for a few months, but when I checked with Dr. Lassila; she had first prescribed the gabapentin to me 8 months BEFORE I had started seeing Dr. Tompkins. So in order not to make this mistake again (especially now that I am taking supplements which have no prescription record) I have started recording when I start taking things.
I often go back in my records to see how things are working for me. Everytime I start something new, like sleeping with my heating blanket or taking a vitamin supplement I keep a close eye on it to see if I am noticing positive (or negative) results. I also look at it when I have a set back or am feeling particularly sorry for myself. It is very reassuring to realize I AM getting better and I AM noticing positive results with my rehab.
Dr. Tompkins was very encouraging last night about me continuing my blog as well. She does have plans to write a book about her findings and therapies but until that day comes, she can not encourage people enough to share their rehab. The general medical community are very quick to prescribe and ignore; doctors like Dr. Tompkins who are researching other ways to get well are hard to find. And she says there is no better time to be sharing like now when I am beginning to really notice some positive results and my cognitive abilities are much improved.
So that is all for tonight; the sun is shining, the birds are singing and I have a 15 minute walk to take. Stay well, stay positive and stay healthy!!
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