Autoimmune Fatigue: Reaching The Tipping Point

While the details are different, this is probably a story familiar to other readers.  I've been officially diagnosed with AI disease for a few years now and you might think that I would not let an increase in my energy levels lead me to overdo it.  But it is an inexact science to gauge my tipping point or that magic cut off between feeling good to having overwhelming  fatigue.

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At the beginning of the week, I had energy.  I was a very excited to welcome this old friend  that makes rare appearances back into my life. I was able to walk the city streets at the same pace as others. Dare I say there might have even been a bounce to my step. My future seemed to  have a few more possibilities than usual--would working if even part-time be an option?  Maybe  I would be able to get to some of those house projects that have been piling up?

My feeling good also corresponded to an upcoming work event that my husband had to attend. I wasn't initially planning to go, but I decided why not attend now that I was feeling  up to it.  I realized that I hadn't been out in so long that I needed to go shopping for something to wear.  But I soon found that going to stores and the actual act of trying on clothes is extremely tiring.  That creeping fatigue and pain started to set in the day before the dinner.

I rested beforehand as has become my routine whenever I have  plans.  Still I wasn't sure if I could make it though the evening, but I was determined to be there.  I had made a decision and I wanted to stick to it!  Yes, some have called me stubborn before.  In the end,  I managed to attend and was proud of myself for just getting there.  I even made  it through the evening and although my energy had started to seriously dwindle before I arrived,  I was buoyed in the moment by socializing and meeting new people.  I rose to the occasion.

Now, the next day was certainly a different story. I had pushed myself too far.  My fatigue was complete and overwhelming and my entire body ached.  My neurological symptoms were also  rearing their ugly head. I had crossed the tipping point of overdoing it and I crashed.  It took me a two day couch-rest to recover and begin to recoup some of my energy. 

Was it  worth it? Most definitely. I won't make a habit of overdoing it and using my energy sparingly  is critical, but there are occasions when the benefits outweigh the after effects.  The  trick is choosing these rare occasions very wisely and not too close together.  I do wish there were a monitor that would alert me each time a rest is needed before the fatigue sets in.

Eye Drop News for Sjoggies

One of my fabulous readers let me know that Refresh Optive Advanced Sensitive is now available in a preservative free version.  I've been mourning the loss of Refresh Endura since Allergan took it off the US market almost three years ago.  

I haven't been able to find as perfect an eye drop match since then.  There are so many on the market and believe me I've gone through boxes of different brands trying to find something that made my dry eyes feel better.  As those with Sjogren's and dry eye conditions know, finding an eye drop that works is a very individual choice and what provides relief for one person might not for another. There is lots of trial and error involved.

Last year, I had tried the Refresh Optive Advanced Sensitive as I wrote about here.  While I initially liked how they felt, because they were not preservative free my eyes burned.  I eventually had to stop using them.  So when I heard the news about these new drops, I had to go to the drugstore to see if I could find these artificial tears. Lo and behold, there they were and I've been testing them for the last week.  They come in a box of 30 individual vials as pictured above. 

I've had much more luck with the preservative free version.  No burning and my eyes are definitely getting more relief than from some of the other artificial tears on the market. The drops are basically a combination of Allergan's Refresh Endura and Refresh Optive since they contain glycerin,  polysorbate 80, and carboxymethylcellulose sodium as active ingredients. These might just become my go to drops.

Which artificial tears do you find to be the most helpful?

Living with Autoimmune Disease: Post-Cold Brain Fog

I am now over my cold, but there were some minor hassles along the way as is often the case when you have autoimmune disease.

The good news is that I am physically better.  Yes, my internist made me come in to make sure that it was nothing bacterial and all my tests were negative.  I got over the cold much faster than usual. It didn't take multiple weeks this time. Instead, I felt better after a week of resting and babying myself.  Maybe I can attribute this to the homemade ginger tea with honey bought directly from a local farm that I drank daily. The cold also did not cause a flare, which was a huge relief.

One side effect that has lingered is brain fog.  I can't say for certain that the virus caused the fog, but the timing makes it seem likely.  The fog is worse in the mornings and it takes me until mid-day if at all to get my brain going.  Things that would usually come naturally to me cognitively are a challenge and my mental capacity feels like it has temporarily diminished.  Things take longer.  For me, each episode of brain fog is slightly different.  It's never fun, but I try to get through it with some tips I keep in mind.

1) Keeping myself engaged.  I am reading and now returning to write.  While it can be frustrating, keeping my mind somewhat active in short segments seems to help.

 2) Light non-strenuous exercise improves my concentration and focus.  I have been taking walks or a short bike ride and feel a bit less foggy afterward.

 3) Coffee. Yes, I know many say to stay away from caffeine during brain fog.  But for me, one cup the morning does seem to help.

 4) Keep my calendar up to date. This is one of those times were trying to remember what appointments I have during the week is not going to work.  I will end up at the wrong location at the wrong time. Yes, that has happened before.

 5) Socializing. Brain Fog does not mean you have to hide yourself from the world. Having to interact with others both distracts me from thinking about the fog, but also forces my brain to work and get rolling.  If I don't feel well enough to meet someone, talking on the phone to friends or family is another good option.

 6) Realistic expectations. This is true for living with autoimmune disease generally.  I am putting things aside that I know that I can't handle right now. Trying to read a dense history book or figure out a complicated health insurance issue might just have to wait another few days.

 7) Focus on the basics.  I ask myself what is completely necessary to get done today.  If I am able to handle more that is great, but if not tomorrow is a new day.  And there is a chance the fog will have lifted by then.

I am certainly annoyed by this no good fogginess, but I am relieved it doesn't seem to coincide with feeling worse physically.  Just excuse any typos or commas out of place for now.  How do you get through foggy periods?

Something Not Autoimmune: It's A Cold

Just What the Doctor Ordered

I have come down with a cold. It is something that happens to everyone.  But in in a way it is weird to be what I will call "regular sick".  There is something nice about knowing that a cold usually gets better over a period of a week or two and that it will pass.  That resting and drinking lots of fluid are all that I can do.

What is odd is that while i have gotten colds and viruses my whole life, I am now more accustomed to the unpredictable rhythms of autoimmune disease living.  The new symptoms that appear out of nowhere that often require last minute doctors visits.  The experimenting with different treatments and therapies and the unknown of how much better they will make you.  The crucial question as to whether the doctors can come up with a strategy that will reign in an unbridled and out of whack immune system.

Now I know that getting sick is more risky for those of us with autoimmune disease.  Having a cold or the flu does activate the immune system and has the potential to cause an autoimmune disease flare.  There are also the added complications of not not being able to fight a virus or bacteria if you are on immunosuppressants, as many of us are with autoimmune disease.

But at the moment, there is really no benefit to worrying about all of this.  I am putting that "flare" word out of my head and am just taking it very easy -- watching movies, reading, and drinking homemade hot ginger tea seem quite appropriate. Yes, I might still be annoying and complain to my husband and family about my sore throat, cough, and runny nose.  But a cold is something that I think I can handle and in a way it is nice to feel kind of normal or as normal as I will ever be. 

I've included a the homemade ginger tea recipe below courtesy of a tweet from Pauline Miller (@PaulineMHealth).  She sent it to me when I was looking for something to help my autoimmune digestion problems.  It is also quite soothing for colds and sore throats. 

Ginger Tea Recipe
Pauline Miller

1) Boil Water

2) Peal 2 inches of Fresh Ginger and Cut into Pieces

3) Simmer Ginger in Water for 15 minutes

4) Strain into cup 

I like to add honey for some additional sweetness.