So last Thursday I got a phone call at work. The message was incomplete but what was relayed to me was there had been a fire in my apartment complex and my apartment had been involved. So I broke a few laws speeding home imagining the worse only to find out that my apartment didn’t actually catch fire. It was the one beside me. Although my house was filled with smoke nothing was burned which was a huge relief. Even though my apartment was still standing it was filled with smoke to the point I had to sleep with the windows open in December! I had some cleaning to do to try and lessen the smokey smell but I was determined to make it to the Arthritis Foundation’s Jingle Bell Run.
It was everything I hopes it would be. It was a great boost to my spirits to see so many survivors of this horrible disease gather on a cold Saturday and defy the the beast by walking/jogging to raise awareness and monies to find a cure. I felt energized by the enthusiasm of the crowd and finished my 5k in 50 minutes. Next year I hope to come in at about 45 minutes.
And then I wrecked my car on Monday. So needless to say that the last week has been filled drama-some good and some bad. My RA has been behaving better than I expected. Sure I’ve been achy and had more pain than normal but I feel fortunate that I’ve not been pushed into a full blown flare.
English: A pill box with various medications in it. (Photo credit: Wikipedia)
I am finally going of vacation! It’s not a huge deal, but a friend I are spending the weekend shopping and eating great food. Nothing overly fancy but it’s a nice excuse to get out of the area and do something fun. I’m not too worried about navigating the big bad city for shopping. I’m not even worried about my feet and knees taking the punishment of going from store to store in search of a great pair of shoes. The thing that has given me pause is probably the silliest and most vain thing possible. I am kind of embarrassed at taking my meds with me on the trip.
I know that sounds completely shallow and it is. My medications allow me to function somewhat normally. I tend to downplay and discomfort that may be noticed by others and on those occasions when I cannot hide my disease I lock myself inside my apartment until I can. Very few people who know me think of me as having anything more than a limp from time to time. Yes, they may mention a RA drug commercial they see from time to time but I make an effort to let very few people into the private battle that I fight on the daily basis.
But spending time with my friend on vacation means that this shroud that I have placed around my daily fight with an autoimmune disease will be ripped away. I will take my MTX injection early and not split the dosage. So instead of bringing a syringe and bottle of chemo with me I will take the full dosage earlier in the week. But I still have to take my daily plaquenil along with the folic acid and Vitamin D. They will be in their normal Sunday-Saturday pill box. I will also be taking a new bottle of A.dvil. I have my rheumatologist’s permission to take an insane amount of the stuff to control pain and swelling which is a probability during this shopping excursion. There is a possibility that my swollen hands and toes will be on display. There is a chance that I will not be able to hide my chronic illness. My friend knows that I have RA-but she may really know after this trip. And for some reason this leaves me feeling exposed. Silly I know, but true.
For now I will focus on shopping which I love. I will eat great food-which I love. And I will enjoy this girls weekend with a friend of over 15 years. And I will hope and pray that the one thing I leave at home on this vacation is my chronic illness!
I haven’t been around this week. I haven’t been posting or reading. Unfortunately I have an upper respiratory infection that has taken a lot out of me. I’m also dealing with the unpleasant side effects of a high dose of antibiotics. No matter how well I care for my health the fact remains that I spend a good amount of money on drugs that suppress my immune system. Getting an infection is worse than it used to be. They seem to take hold faster, stay around longer, and I end up feeling wiped out for way longer than I used to.
So I just wanted to say that I’ve been away-but not because I wanted to. I am trying to get over this infection. I will be taking it easy this weekend. Hopefully I can be more present next week. Have a great weekend everyone!
English: A body pillow. (Photo credit: Wikipedia)
One thing that can really derail your journey to health is a lack of sleep. Adequate rest not only affects your attitude and cognitive abilities, but it can also make it harder to maintain a healthy weight. Studies have shown that those with chronic insomnia have higher rates of diabetes and have a harder time maintaining a normal body weight. Sleepless nights also impact our immune system and our body’s ability to heal itself. Lack of sleep can be a serious roadblock for anyone on a journey to health.
Unfortunately I possess 3 out of 4 risk factors for chronic insomnia. Shift work? Check. Being a woman? Check. Chronic pain? Check. The only risk factor I don’t have is a medical diagnosis such as sleep apnea that would interfere with my sleep pattern.
One of the worst parts of insomnia is the long night that stretches endlessly while my exhausted body and active mind are at war with each other. On the one hand my body is demanding sleep –on the other hand my mind is too active and alert to allow the body’s wish to be fulfilled. That is why the book Restful Insomnia by Sondra Kornblatt caught my attention.
While this book goes over the basic insomniac rules-sleep schedule even on the weekends, turning off your tv and cellphone, ect the author believes that those with insomnia can achieve a restful state even if they do not actually get more than a few hours of sleep. The author says that the focus of bedtime should be comfort and relaxation. She believes that whether we sleep or not a restful state can be achieved. She goes one step further in asserting that once we get used to achieving a wakeful rest at night we will find that we have fewer and fewer bouts of insomnia. A relaxed mind and body should ultimately lead to the sleep an insomniac so desperately craves.
While the book doesn’t pretend that there is an easy cure for insomnia it does offer hope. Even without sleep you can face the morning less exhausted than normal. I will be some of her techniques a shot for the next month. As she suggests I will be making sure that I prepared for a night of sleeplessness by having “nest” of comforts that will aid in my relaxation. I will use deep breathing and body awareness to turn off my mind in hopes of resting. According to Korblatt one you are able to achieve wakeful rest sleep is not far behind. And sleep is my ultimate goal. I don’t mind putting in the work if this method increases the number of nights that I wake up in the morning feeling rested. If anyone is interested in my progress I will be glad to write a follow-up post with how well this experiment worked.
I know that one of the biggest roadblocks on my journey to health is lack of sleep. Whether it is the fact that I work 1st, 2nd, and 3rd shifts on the routine basis, or the fact that rolling over on a tender joint wakes me in the early morning hours and prevents me from going back into a deep sleep, I am routinely sleep deprived. And like any other step on my journey to health conquering insomnia requires a lifestyle change, bumps in the road, and ultimately victory!
Exercise Area (Photo credit: VictoriaJZ)
Trust is a funny thing. If you trust in someone or something it is total and all encompassing. Your faith in them or that thing is a fact-unmoving and unyielding in the face of adversity. Doubt is quickly pushed aside in the face of trust. Belief defies knowledge and logic. Trust, once broken, can leave a gaping hole in what was once a deep and fulfilling relationship.
Whether we know it or not we have a deep and enduring trust with our bodies. We expect our bodies to obey our commands. Those simple reflexes such as breathing and our beating heart are not given a second thought. Our health is seen as a fact-unchanging and forever until it is not. When our trust in the strength of our body is broken, when our bodies betray us and fail to perform at the condition we are accustom to-if we live-our trust is broken.
That is what chronic illness does. Yes, we can vow to treasure our bodies once again. We can treat our bodies like the precise instrument they are. I know I have vowed to do just this. I now have a new appreciation for what my body does. One thing that RA has taught me is to treasure my body. I now focus on eating clean because I now understand that my body needs me to help it work at its optimum level. Before my body failed me I took my role in good health for granted.
But no matter how much I now appreciate what my body does for me the trust has been broken. I have been living in the fear of the next time my body would let me down. Wondering when I would once again be blindsided by my body’s inability to support me in the daily tasks of life.
But today something changed. Maybe it is the fact that I have been taking care of my body. Or perhaps I have finally begun to listen and read the signs my body has been giving me all along. Whatever the change is today I took the first steps in once again trusting that my body is strong, capable, and stronger than I give it credit for.
It was a simple decision but for me it was an act of faith. I went to the gym. My mind told me that it was too much. The fatigue told me that once again 8 hours of work were all that I was capable of. Stiffness threatened to keep me at home. But today I trusted my body. I have been eating for nourishment. I have also gone back on my medication. I made the choice to believe that my body was capable of more than I gave it credit for. That it was able to take care of me like I was not taking care of it. Even though I didn’t think I could complete an exercise routine on any level I had faith that my body would rise to the occasion. And it did. Even through the stiffness and persistent pain my body supported my goal of movement.
I can’t say that I will ever have the blind trust in my body ever again. There will be days that no matter how much both my will and body want to accomplish a task chronic illness will win. I accept that. But I also relish the relationship I am forming with my body. I am learning that it is strong and capable of fighting for quality of life with me. And that goes a long way toward restoring trust.
I decided to go back to my gym today. The game plan was to kick up my exercise routine by starting Couch to 5K on the elliptical. I figured the structure of the program would give me goals to reach while at the same time allow me to go at my own pace-something I wouldn’t be able to do in a group class. I was actually pretty excited at the idea of returning to the gym. Even though my walks around my neighborhood are a form of exercise I always feel like working out in a gym setting has its own energy-which I love.
I was excited until I woke up skating on the edge of real pain. Like many patients that have chronic pain I have my own personal pain scale that takes into account some pain is “normal” for me. But this was the kind of pain that registered on my adjusted scale as abnormal. Not unmanageable but the kind of pain that would make everything difficult today. Suddenly my dreams of a triumphant return to working out seemed to fade. I knew that the picture I had in my mind of working up a sweat and burning tons of calories was not realistic anymore. The dream of giving my best at the gym seemed to be crushed until I remembered something my mother always says.
My Mom has always told me from the time I was a child that I should always do my best, but that my best effort would not always give the same results. Giving my all will result in different outcomes each and every time. The best you can do with 8 hours of sleep and the best that you can do with 3 hours of sleep are two different things. The best you can do on a project with 3 weeks’ notice and 5 days’ notice is not the same. She always told me that as long it was the best I could do, no matter what the outcome, I could always be proud that I had given it my all.
It was this thought that prompted me to get dressed and go to the gym. I had seriously considered postponing the Couch to 5K thing until I felt better. But instead I purposed in my mind to not compare my current performance at the gym to any of my previous efforts. I decided to go for my best today and nothing else.
I would love to report that once the workout began something miraculous happened and I was able to have that workout I had dreamed about. But that’s not the truth. I averaged a less than stellar 16 minute mile. But I didn’t care. I was moving. I was doing something good for my body. I found out that once again my body was capable of doing more than I thought it could. And best of all I once again told the RA beast that while you affect my life you do not control it!
For years it seemed that RA was the one in control of my life. If I was stiff and swollen in the morning that meant that it would be a bad day. Bad days meant that my body had somehow betrayed me. And my body’s betrayal meant that slowly but surely I stopped taking care of myself. I began thinking of my body as permanently broken. A broken body, in my depressed state, didn’t deserve care and attention. It wasn’t a conscious decision but eventually I stopped making decisions that would encourage a healthy lifestyle, mind, and body. I began to believe that my body was doomed and it was a waste of time fighting the inevitable.
What changed was a simple statement I made while giving my medical history to a new physician. As I kept answering negative to the long list of health issues I joked with the nurse taking my history that I was pretty healthy-except for, you know, the RA thing. As soon as I said it I could feel the control I lost that day I was diagnosed return to me. My body had been good to me with one exception. It had still cared for me and my health when I had turned my back against it. Even though I had filled that body with junk foods, packed on the pounds, and stopped exercising my body had protected me from the repercussions of my bad lifestyle choices. My cholesterol was good, my blood sugars were normal, and my heart was still strong. While my body had failed me on one level it had risen to the occasion and protected me in my moment of poor judgment and self-pity.
So now I am on a journey to rectify my past mistakes regarding my health. I cannot continue to abuse my body and think it is going to continue to protect me. So now my focus is on creating and maintaining a lifestyle that will support my health. RA doesn’t prevent me from being healthy. If anything it means that my health is more important for me than ever.