Earlier this week I was told by a VA person that during a flare up I should just sit back and relax; luckily I don’t listen very well. Monday I had a nice treadmill run, Tuesday I did a short stint on the treadmill followed by a spin class. Wednesday – I took the day off (had to much homework to do). Thursday three miles on the elliptical machine; Friday another nice treadmill run; Saturday, even though it was cold, I had a fabulous run with the BRC FIT. Today after dropping my boys off with my dad I snuck off to the pool. My goal was to do one mile. I didn’t care how long it took me but damn it I was going to do a mile! I did a nice 100 m warm up, stretched out (my shoulder got mad at me last time so I wanted to make sure it was nice and stretched). I figured I would break my remaining laps into 500 meters. The first 500 was freestyle-breaststroke-freestyle-back stroke-freestyle. Set number two was kicking-stroke-kicking-stroke-kicking (usually I do it the other way, but trying to be nice to my shoulder). The final set was another freestyle-breaststroke-freestyle-back stroke-freestyle. I kept it gentle enough that my shoulder did not get upset, I also had to be gentle on my knee. By the time I got out of the pool I felt wonderful! Of course I had to make a side trip to the hot tub.My whole point of this rambling is the fact that I could have thrown in the towel and decided I was to “ill” to live MY life. I realize there are days when my body tells me there are no ifs and or buts about it I have to take a day or two (or more) off. I just don’t understand how anyone with any knowledge about lupus or any other autoimmune disease would have the audacity to encourage someone is a flare to do nothing. I am not saying that during a flare up extra down time isn’t needed because, trust me, it is!!!! But if you can get out even for a little bit it is so worth it. I am tired after my workouts, but then again I am tired before them so what is the difference?! I am so much more relaxed and I am a lot nicer to live with!
Treatment of SLE
The treatment of SLE is as varied as its course. Although there is no cure for lupus and it is difficult to predict which treatment will be most effective for each patient, there have been significant gains in treating patients, and there is general consensus on several treatments.
A conservative regimen of physical and emotional rest, protection from direct sunlight, a healthful diet, prompt treatment of infections, and avoidance of aggravating factors are the mainstays of lupus therapy. In addition, for female patients, pregnancy must be planned for times when the disease is under control, and the patient is on allowable medications.
This basic component of everyone’s good health is essential for the person with lupus. The fatigue of lupus is not sleepiness or tiredness from physical exertion, but rather a frequent, persistent complaint often described as a “bone-tired feeling” or a “paralyzing fatigue.” Normal rest often does not refresh the patient or eliminate the tiredness due to lupus, and fatigue may persist despite normal laboratory test results. The patient and family need instruction on how to use this tiredness as a guide for scheduling activity and rest. It must be reinforced that this need for rest is not laziness. Eight to 10 hours a night of restful sleep, naps, and “timeouts” during the day are basic guidelines. Physical activity should be encouraged as the patient can tolerate it.
However, in some patients, the fatigue is more related to fibromyalgia than to the activity of their lupus. An individualized exercise routine may promote wellbeing, especially in a patient with fibromyalgia. Some scientists believe that the incidence of fibromyalgia is increased in patients with lupus. They do not know why, but one hypothesis is that inflammation from lupus may lead to the rewiring of the pain pathways in the central nervous system.
A patient’s emotional stressors should be carefully assessed, because they may play a role in triggering a flare. The patient should be instructed on how to avoid these stressful situations. However, the physical manifestations of lupus must be treated as they present themselves while the emotional stresses are explored. Discussions with family members on this issue are essential for providing them with information and obtaining their support. Counseling for both the patient and the family may be an option. Chapter 6, Psychosocial Aspects of Lupus, explores these issues in further detail.
~If you hear that someone is speaking ill of you, instead of trying to defend yourself you should say: "He obviously does not know me very well, since there are so many other faults he could have mentioned"~