Monday, October 8, 2012


Friday night I came out of denial about how poorly I'm doing physically. I realized that I'm not crashed but in a full blow relapse.

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.


  1. So sorry you are going thru such a rough time now. At least you have a kind neighbor - how nice of her to offer to help! I have found that most people just stay away.

    The only way out of one of these relapses is through - try to rest as much as you can - Dr. Lapp's advice sounded good to me. Take care of yourself and try to treat yourself to some things that you especially enjoy - maybe a favorite uplifting movie or some yummy take-out food or a favorite, comforting book.

    You are not alone.

    Things WILL get better!!

    Thinking of you -


  2. I agree with Sue....this will will get through it. Sadly, the only way out is through. Grieving is something I am familiar with. You are in my thoughts and prayers.

  3. sorry things have become so bad for you. Yes prolonged relapses make you feel like you are spiraling out of control ... I have been in a bad relapse for a while also. It's just horrendous, but it will pass in time and yours will too ... I hope you can manage to hang on to some hope in the meantime. xo

  4. Stress is number one reason that can make you relapse or at least make your condition worse.

    Looking at the big picture it can seem overwhelming but you have to focus on the NOW, what you can do today and map out each step in chunks instead of trying to figure it all out at once.

    With that said, it may be advisable to go on an anti- depressant Wellubtrin dopamine reuptake. Your lung congestion may be atypical pneumonia and is bacterial in nature.

    Apparently you have family, can they help you during this time period.

    Perhaps you can borrow money from someone to pay off the student loan and have the loan payments more flexible or start when you are well member perhaps?

    It's important not to spiral down further which can happen as you are changing your brain chemistry and developing different neruo pathways to process information.

    There are excellent research studies by Shawn Achor Harvard researcher who found that 90% of our well being is how we process the external world and only 10% of our well being is from the external world. There is more of his research on the internet.

    I know changing your thought patterns can change your brain chemistry.

    Is it the answer. No but it does build up the immune system. Hopefully in the very near future, science will find an answer for this.

    Social interaction and support system is very important at this stage.

  5. PS: There are no bio-markers for ME/CFS so one must be cautious on hearing anecdotal stories of patient recovery but this one story is truly amazing. I've been following her blog for some years now:

    Moderator MECFS Forums

    This person keeps a record of treatments he has tried over the years and their results:

    Hope these blogs help

  6. Dear Warrior, I am thinking of you and am so sorry it is like this for you now. x

  7. Hi, I'll be named as anonymous, but thats because I'm also in the throws of a relapse and trying to figure out how to leave a named comment is beyond my capacity at the minute.

    But I have a stratagy that helps me, it's developed from three sources, my neurophychologist, Mike,my art therapst, and my occupational therapst.

    Mike explained about situational depression, that means the situation aggrovats the mood,and as situations change so will my mood,this information makes me feel more forgiving towards myself especially when I acknoledge my mood will naturally change when the situation changes.

    My art therapist encouraged me to draw pictures to explain how I feel, and the one that helps most is the one that shows my life goes in cycles, so when in the depth of a relapse I look at it and see ups always follow downs.

    And my occupational therpist taught me sleep hygine, pacing, and the different energy requirements for different tasks.

    So my relapse stratagy is: acknowlegde there's a problem and that it has a pattern, be kind to myself, focus on sleep first, it's my key to improving, then add tasks that are the easiest for me,day dreaming is an activity I enjoy so I indulge in it when I'm to Kn******d to do anything else, and I can do other things when I'm well enough, that will come too.

    My wellness stratagy is keep up to date with things, housework,bills, etc, then when I need to drop the pace, I'm not looking about me seeing things that need to be done as a matter of priority.

    I hope your relapses become easier to accomodate, mine have,almost to the point I dont stress out over them, which is another little key to shortening it's control.

    Regards Sharon