Did you ever watch the Movie “Clean and Sober” with Michael Keaton? If not you should. It’s an incredible story of a man coming to terms with his addictions. I don’t think I would describe my use of drugs as an addiction but I could easily say it was a misguided dependency.
So in an unplanned incident of forgetting to take my last drug, Cymbalta, a week ago today, I finally got to the point of being drugless. At least drugless for the drugs that I was using to treat the chronic pain, fatigue and other symptoms of Fibromyalgia. If I am struggling with sinus problems caused by seasonal allergies, I’ll still take sinus medicine and tylenol.
The basis for de-drugging my life is that I now have different tools to manage pain and the over sensitization of my central nervous system. These tools are describe in the articles I wrote about my adventure in the Pain Management Program at the University of Nebraska.
In this de-drugging process, I also decided to challenge my CPAP. One of the questions I had was “What was the affect of Ambien on my sleep”? Did that drug exasperate my sleep problem.
During this week, I have really started feeling the benefits of regular stretching and exercise with regard to my sleep and activity level. The last few nights I have found sleep that is starting to become refreshing. I can still feel the sore throat in the morning that makes me wonder about my sleep apnea. Without a sleep study I may not be able to determine the severity of my sleep apnea events. So I am basing the improvement of my sleep simply on the way that I feel when I wake up and through the day.
My head is clearer. I have started a contract job where I am a Project Manager for a organization that is migrating from Microsoft Exchange to Google Apps. I am jumping in at the end of the project and filling a role during a critical time of the project. I have felt that I can think clearly and my ability to stick with it through the day has been good.
I have felt that I am back to the point I was at 3 or 4 years ago when Fibromyalgia was a key factor in the deterioration of my ability to perform at work and home. But the difference is that then I was looking for passive solutions to the problem. I thought a doctor or drug could fix me. Now I know that I am in control and I can make improvements. Instead of spiraling downward in to greater depths of pain and fatigue I am on a path of improvement.
What a great feeling that is.I know that I’m performing much better than I had been in the last year. Yet not as good as I am capable of. The neat thing though is I am on a path of improvement and am in control.
Icing while in the pain program was really easy. First there was an ice machine. I didn’t have to burn up the food processor twice a day. Then there’s the massage tables and hospital linen. I used a room that was all set up for icing. When I was done I just dumped the wet linen in a bin and someone else took care of it.
That’s not the case at home. I already mentioned the food processor problem. Then there’s the linens. I was hanging my towel on the deck and reusing it to try to keep the laundry down. And then there’s the massage table. We don’t have one. So I was trying to come up with a place to lay down on the ice without creating a big mess.
My first try at a solution came with the garden variety reusable ice pack. Throw it in the fridge and it’s ready to go. The instructions say not to use them without a towel but I find that they are more like the ice and wet towel technique if I laid directly on them. The only problem is that these type of packs dont stay cold as long as they need to. But they are nice in that I can just flop it down on the couch and lay right on it. No mess. When I was done, I just threw it back in the freezer. Easy.
I found the next solution at Walmart. It’s called CryoMax. The first evening I tried it. I had it in the freezer for only an hour or so. The instructions say not to use it without the supplied cloth but knowing what I’ve experienced with the wet towels and other ice packs I used it with no cloth. And it worked really well. 15 minutes and it was still very cold. I thought I had a winner.
Last night I woke up in pain and decided to ice. I went to the freezer and got out my two different ice packs. The regular one I used on my shoulders and the CryoMax I used on my lower back. As I lay on the couch I could really feel the CryoMax. I thought it felt more like the intensity of the wet towels and ice. It soon numbed and after 15 minutes I got up. Then I noticed that my lower back was frozen. Frostbite type frozen. This morning when I got up it was still bright red and had hardened clumps of skin. So I figured that using the CryoMAX without a cloth is not a good thing.
This morning after doing my stretches I iced. Using the regular ice packs on my shoulders without a cloth and the CryoMAX just below using the supplied cloth and it was almost perfect. So I think I have a good solution to ice without the mess and work of wet towels and chipped ice. Once I get healed up I’ll give it a good try!
Saturday night I forgot to take my Cymbalta. The last of the 3 primary drugs I was on for Fibromyalgia. Sunday while driving to my parents I felt a little dizzy. But otherwise the day wasn’t too bad. I know… You’re thinking… “Dizzy” “Driving”? I let my wife drive home.
Then Sunday night as I was going to bed, I thought “Today wasn’t too bad, let’s try another”! So I skipped the Cymbalta. Well it has been 4 days and I can honestly say it was no big deal to go off of the Cymbalta. And now I’m clean and sober!
I am still struggling with sleep. I wake up often and I can’t stand the CPAP. I am stepping up the exercise and working on my sleep hygiene. I think I’ll start taking warm baths in the evening before bed rather than my shower in the morning. Denise thinks I have bad hair days when I do that but it’s better than bad sleep nights!
So now that I’m completely off the drugs. I think overall I feel better. I am definately thinking more clearly. But my life is definately different. I don’t try to be a 20 year old any more. I live within my ability as it has been restricted by the Fibro. Which means I pace. I exercise. And I just say no.
We’ve decided that it’s really time to upset the apple cart. The last few months have helped us figure out that we want to do something really different for the next few years. We know that it doesn’t include owning a house. It may be sizing down to an apartment and looking for jobs that better fit our new life plans or really going wild and buying an RV. It all depends on how God leads us.
So the press is on. We’ve listed the house and now we have to get it ready. There are so many projects and I have a pacing plan. I know it doesn’t make sense but I have troubles with pacing up and down at the same time.
This morning we started off well with breakfast, stretching and ice. Then I mowed. Since it only takes 40 or 45 minutes I used that as a substitution for my 30 minute walk. After lunch I started on cleaning 8 sets of combination windows and the aluminum storms. Half way through my back was on fire so I iced. When I finished up I drew a warm Epsom salt bath.
Since I pushed it so hard on the chores, I skipped the stairs today. I feel pretty good about the balance of my activities. I had 3 really good periods of activity where I didn’t let the pain control me. Using the desensitization techniques proved very effective at controlling it. I have 8 more sets of windows, 2 picture windows and 2 doors to do tomorrow. Hopefully I’ll get it all done before the house gets showed in the evening.
The planter and steps on our front porch has been suffering from water damage. A couple of weeks ago I worked on the steps and got them looking better but this planter was still needing some attention.
I got out a little 5 pound hammer and starting whacking away at it. Soon figuring out that I was going to need something bigger. So out came the sledge hammer. Denise had come out to help me. She loaded bricks and shoveled dirt while I broke it up and carried the bricks to the truck.
I was working on my new pacing for pain management techniques and thought I was on a roll. We had dirt and bricks everywhere. I was busy busting it up and Denise was telling me it was time to start cleaning up. As you can see we had only made a little progress. But I was planning on getting at least half of it done in the couple of hours that I had allocated for the activity.
So listening to my wife’s advice (as I always do). I finished loading up the bricks and cleaned up the mess. We took a little break and then hauled the cement and bricks out to a place we could dump them.
It wasn’t until this morning that I realized how much I was going to pay for my 45 minutes of work. WOW! I guess this is going to be a project over the next few days. Am I ever thankful for my new skills of stretching and icing to desensitize my nerves! So to say the least I wasn’t a ball of fire at church this morning. Afterwards, we went on a 30 minute walk and I think I’m pretty recovered. I think tomorrow, I’ll not try to do quite so much!
To Be Continued…
This is a milestone in a journey where there is no destination. It’s about enjoying, learning and growing through each moment. There are no failures only tomorrows.
The Pain Management Program at University of Nebraska is complete for me. Now starts the journey of managing chronic pain for ‘maybe’ the rest of my life. Many thanks to the PMP team for all of their hard work and compassion. And thanks to my pal Amy for showing me courage and giving me friendship. This series of blog entries is complete. I have ideas for future updates and some tools that I want to share when I have them more fully developed. I hope to share them in the next few weeks.
Learn to appreciate your pain
What! Are you crazy? Not as much as I used to be!
We were challenged today to consider ways that our life has been made better because of our pain. Actually this isn’t a new concept to me. I knew for some time that I was addicted to high stress and demanding work environments. I knew it wasn’t healthy for me but I couldn’t get out of it myself. That is where I am thankful for the pain. It wasn’t a pleasant experience. It was like ripping my heart out. But as time went by and I started unwinding this overwound body, I appreciated the path I am on and the pain that made it possible.
The other aspect that we learned about is the attachment we have to our pain. During a lesson on Thai Chi we were practicing focusing on our breathing. The focus was supposed to be solely on our breathing. We shouldn’t let our mind wander but when it did we should simply return our attention to the breathing. After the exercise we were asked about the thing that we were thinking about when we lost our focus. Mine was the pain in my shoulder. The goal is to set the object that would take your attention away and set it aside so you could focus on the breathing. This act of returning focus on the desired object is the goal of the exercise and it can be a way for us to learn to divert our attention away from pain and toward other activities that are more desired. I think it goes along very well with mindfulness where we keep our focus on the moment.
Today we set our non-physical therapy goals for the next month. I’m excited that the program is about over and I’ll get to start applying the techniques that I have learned in broader areas of my life. I have already started having discussion with Denise about what some of our mutual goals are and how I will pace myself on a day to day basis. I think she is going to be a great teammate as I get accustomed to my new life plan.
Living well with pain.
The theme for the last couple of days is the idea of preparing us to manage our own pain program after we leave the four week program. Today one of our classes was “Living Well with Pain”. We looked at how all aspects of our lives are involved in successfully managing pain. As always exercise was the main course but we also looked at diet, nature, relationships, recreation, relaxation and stress management, religious and spiritual involvement, and contribution and service. All of these make up therapeutic lifestyle choices. Having a well-balanced life is an important part of managing pain.
This brought to my mind a thought that I have been working on for a couple of weeks. I have been trying to picture what my life will be like as I pick the amount of each of the categories above to balance my life. Of course for me a main consideration is making a living but as I look at the other categories I want to make sure that I include an appropriate amount of each of these.
There are some rules that I want to try to follow.
- Meals should happen at regular times.
- Go to sleep and get up at the same time every day.
- Limit the total chore and work activity
- Include free time with no purpose
- Include categories that I don’t readily understand
I had a picture in my head of a weekly schedule with tasks planned for the whole week and they would be color coded with the type of activity they were. I could schedule things like stretching, walking and stairs throughout the day and maybe give them a color of green for exercise. I could do similar things for chores and work, and maybe put fun and social activities together. Then the complete project should have the effect of a rainbow with no one color getting priority. Having a good balance across the week and on each day.
Today was another milestone in exercise for me as I reached my maximum for walking. So where I had got up to 28 minutes twice a day, tomorrow it will be 30 minutes once a day. The way I see this is that I can move the saved time to another “active” category like chores or work. It could be recreation. Either way it would be something other than relaxation. I have gained a level of activity that I don’t want to lose.
A big day.
Today was a really full day for me. My schedule was completely full plus I still had to get my exercises done. My walk is up to 26 minutes and I’m up to 5 flights of stairs. Both twice a day. Then I also have 20 minutes on the bike. By the end of the day I was beat. I came back to my room and basically collapsed. This is the type of day I don’t want to have in the next few weeks so I’ll plan so that I’ll only do the activities that will also give adequate time to do exercise and relaxation.
I had a session with my PT today. It amazes me how she starts the evaluation with very soft touch at the top of the head, on the shoulders and down the sides of the chest. It’s as if she was hardly touching me. For the life of me I don’t get how she can tell anything. But I know she can. I can tell by the way my body has responded in the last 3 weeks. I have flexibility in the hips and lower back and my shoulders slide back and forth easily. I am still having problems with raising my arms over my head. She says it’s due to chronic stiffness around my sternum and ribs. She has given me more stretches to specifically work that area but indicated that these may be areas that will always be tough for me to get moving.
Later in the day we had a lesson on exercising at home. We discussed the different types of people that are available to help us with exercise, their expertise/certification and what some of the deficiencies there may be in their knowledge or experience. Especially around the area of chronic pain and activity pacing. It is far more likely that medical doctors are trained to use intervening methods such as medicines or surgery. Personal trainers may know muscles and how to work them or they can teach us how to use the equipment. Both of these professions have their place but people with chronic pain need different types of support. The thing we need to focus on is that we now have the tools to make our life better. First we look at exercising for flexibility, then endurance, coordination and finally strength. The elasticity and length of our muscles is the first best defense against our pain. Then follows the rest. We will be our own best advocate, we can get input from our physical therapist and others who are in our life but in the end it will be our responsibility.
At the start of the four weeks we completed a video tape session that took us through a series of activities including walking around a mat, sitting in a chair, standing on one leg and stretching exercises. I know from the graduation of the last class that this video is compared to one at the end of the program to show and make a record of our progress. So we finished our day today with our discharge video. One of the things I laughed at myself on today was the standing on one leg. Over the last three weeks I’ve actually become very bad at it. I think with all my joints getting loosened up, my body doesn’t quite know how to handle it.
So there’s three more days to go. I’ve really enjoyed this but I’m ready to go.
Just because it’s such a big part of pain management, I want to reflect a bit more on pacing.
Saturday morning when I got up, we had the pressure of the garage sale starting so I skipped breakfast. That threw my day off right from the start. Even though my activity and rest was alternated fairly well. Missing breakfast, messed up my stomach and then lunch was delayed. Consistency is important especially in the daily meals.
I really felt bad that I was setting myself up for a poor Monday.
Then Sunday night, I wasn’t paying attention and forgot to take my Ambien and Cymbalta. I had a fitful night of sleep. I woke about 2:00 and ate a small breakfast, watched a little TV and started feeling like I could sleep at about 3:00. That’s when it hit me about the medicine. No wonder I couldn’t sleep. It was too late to take the Ambien but I took the Cymbalta. Then I had four more hours of restlessness. I really felt bad that I was setting myself up for a poor Monday. So the moral of the story is that there is more than exercise and relaxation to consider in pacing.
Today, we had a good lesson on Exercise and the brain. There was a lot of good information about how exercise creates chemicals that make you think and feel better. The most compelling information was that compared to Cognitive Behavior Therapy or Medicine, exercise is equal in its results. With no side effects!
I’ll have to be careful to not fall into the same patterns of workaholic-ism that exacerbates the pain, fatigue and all of the other symptoms of fibromyalgia
The second lesson for the day was about affecting change and resisting relapse. One of the issues I’ve been dealing with is that I am addicted to stress. Working my way back into the workforce, I’ll have to be careful to not fall into the same patterns of workaholic-ism that exacerbates the pain, fatigue and all of the other symptoms of fibromyalgia. I’m hoping that by the end of the week I have a much more clear plan on what I’ll be doing for the next few weeks as I take the plan into life.
Monday’s end up with a session in the Therapy pool and relaxation. I was really happy that today I completed a stretch where I stand against the side of the pool and lift one leg toward the opposite hand. I was able to make my foot touch my hands on both sides fairly easily. I’m not sure how that happened. I had felt stiff and sore all day from the poor night of sleep. I need to remember that pain is not equal to flexibility.