It's true what they say-it's tough to experience this after a long period (for me) of having significant improvement.
Saturday was my birthday. It was a surprisingly difficult and lonely day. I was able to have a short visit with both my sisters as well as my niece and nephew. That was the highlight of my day.
Yesterday I continued to go downhill. In addition to the flu like symptoms I'm having an increase in muscle weakness-particularly in the front area of my ankles right below the distal tibia (lower shin bone). I can't walk around the block. I can walk a short distance, then I have to stop because of the muscle weakness. I'm also having some pain in my lungs (?) when I take a deep breath but only at night and its not daily. I don't have a cough. I'm also having bad cognitive problems, those fun me/cfs headaches, etc...
Last night I was so discouraged and scared that I broke down and sobbed. I couldn't stop it. There is so much grief. It's also scary to have a relapse like this living alone. I didn't prepare for it. I didn't expect it this soon.
This morning my neighbor knocked on my door. When I opened it she said "are you okay? what can I do for you?" I was confused as to why she was so worried. It turned out she overheard me crying through the walls.
I'm going to be offline for awhile. I'm not on facebook or anything. I have a phone appt with my me/cfs doctor on Friday. I can't afford it but I can't afford a prolonged relapse right now either.
Here's a link to a good article on relapse by Dr. Lapp. A paragraph people might find helpful if anyone else is experiencing one:
When relapses are prolonged, they become particularly onerous and discouraging. Since most relapses will start to improve with rest and extra self-care, one should look for triggers and perpetuating factors that might be prolonging the relapse. Perhaps the most common perpetuator is a lack of sleep. It is not unusual for sleep to deteriorate during a relapse, and attempts must be made to insure a regular, scheduled sleep. Eight to nine hours of sleep nightly are generally recommended, but it may be necessary to sleep longer during &down times”. Also, anxiety and depression always flare up during a relapse, and if untreated they may perpetuate the relapse by interfering with sleep, motivation, pain tolerance, and energy. It may be helpful to temporarily increase an antidepressant dose during such periods.Infections such as recurrent bronchitis or cystitis can both trigger and perpetuate “down times”, and in endemic areas persisting infections such as Lyme Disease can be the cause.
I'll post again after my doctor appointment if I can.