Month: June 2017

Travel and Stress Fatigue

Here it is two weeks afer my trip to Chicago and I am still exhausted.  No matter how much I sleep or nap.  I just don’t feel energetic.  It also doesn’t help that the last three weeks have been the end of school, my trip and closing of my office along with hearty dose of roaches and bed bugs.  Nothing like a good stew of stress to make you feel sicker than ever.  The first three stressors I knew about and I had a plan of attack to keep them from causing a flare up.  As for the bed bugs, well, they happen and are difficult to kill.

Well…I believe that this is a flare up of my conditions. Whether it is the Lupus, RA or Sjogren’s acting up, it is difficult to tell.  I am more inclined to say the Lupus since it is more stress sensitive.  Also, I have had a rash magically appear this week with no known cause other than RA or the Lupus.  My chest has felt heavier this week.

My suggestion for dealing with known traveling or stressful situations.

  • Do take your vitamins and medications every day.
  • Do take a nap if needed.
  • Do stick to regular exercise or even ramp it up a little (very little).  Endorphins help make you feel better.
  • Stay connected to your social groups.  Church, volunteering, etc.
  • Eat healthy.  (I have found myself drawn to fresh raw vegetables and beef.)
  • If you are on oxygen, allow yourself a day in bed on the oxygen playing games, watching movies, knitting, etc.  (I did that yesterday and I feel a little better today.)  I have been taking my portable oxygen everywhere.  It has been used frequently.
  • Stay connected to God.  I have found impromptu prayer to lift me in times of dire exhaustion when I know I can’t rest any time soon.  My morning devotional time helps keep me in a positive frame of mind.
  • Try alternative medicine.  I have found a reflexology massage to easy my symptoms for up to two weeks.   I am currently exploring Reiki.  I have had two treatments after stressful days.  Both times I slept better that night and my muscles in my back were looser.
  • Pamper yourself.  Get your nails done.  I love having a pedicure once a month.  There is something about having my feet soak while sitting in a massage chair that is uplifting.  I am learning to schedule these pamperings during my lunch hour during stressful weeks.  I come back with a nicer attitude and able to handle the rest of the day.
  • Understand that this is a flare up.  It will end after it has run its course and you have healed.

I am going to watch my symptoms very carefully.  I am not due to see the doctors until the first week of August.  If the exhaustion does not start to abate this next week, I will contact them.

I have various other doctor appointments and labs all summer long.  I will be keeping you updated.

Now, here is my disclaimer.  I am not in any way a medical professional.  I research, read and investigate on my own.  I am documenting my travels through this medical condition so others can see what may (and I say may) help them.  I do have my herbology certificate.  I do have a BS in Business Administration.  I will be attending a Reiki training this summer.

The  April and May editions  of the magazine by Sjogren’s Foundation have incredible articles.  They help you understand Sjogren’s and RA much better.  April’s had the results of a survey that they did.  It was very interesting about how much this affects your life, relationships and finances.  You may or may not have Sjogren’s, but it is worth the annual fee just for the magazine with latest in medical and alternative methods for treating.  Just so you know, almost every person with this condition has up to 5 other medical conditions associated with the diagnosis.  I am one.  Here is the link https://www.sjogrens.org/files/articles/SSFLivingwithSjogrens.pdf

Enjoy the article.  Here is the link to the foundation  https://www.sjogrens.org/

I will admit the biggest comfort is stopping and realizing that God knows what is going on.  The bigger picture is beyond my human vision capacity.    I figure God is telling me it is time to enjoy my summer break.

 

Traveling with MCTD

It is with great joy that I was able to spend the weekend in another city to receive the acknowledgement of finishing my degree.  But, that is neither here nor there.  I am writing to let you know about how my physical traveling went with being as ill as I am.

I have to first give credit to those who helped me get the POC (personal oxygen concentrator).  I would not have been able to venture beyond the confines of Miami without it.

Here are some of the things I noticed….

I started having extra coughing attacks about two weeks before the trip.  I am assuming that the increased anxiety about the trip caused a flare up of my symptoms.

Of course, the day before leaving, I had the nervous stomach and my period started.  Don’t you just love stress.

It took a little longer to get through the ticket counter.  This is due to the fact that not all airline agents are familiar with the new portable systems.

  • Do request wheelchair assistance at all phases of your traveling.  This can be done after purchasing your airline ticket.  You will get a phone call a week before explaining the limitations of the use of the particular machine you are using.  I happened to have a unit that has no limitations during the flight.
  • Do get to the airport early (2 hours) as suggested.  Some airports provide a wheelchair immediately, others make you wait in a designated area.
  • Do dress comfortably with easy slide on shoes, yoga type pants and a sweater.
  • Do have your medications in the top of your carry on in their prescription bottles in a zip lock.
  • If traveling with a POC, make sure all batteries are at a 100%.  Pack all batteries and chargers.  I packed an additional nasal canula hose in case there was problems.  The POC does not count as a carry on.
  • If you have dietary problems, pack snacks in your personal carry on (purse) near the top for inspection.  The airline I chose did not have gluten-free snacks.  I was grateful I packed my own.
  • If you are staying at a hotel, at time of making the reservation, ask for a room with at least a refrigerator and foam pillows.  If you are in a wheelchair or using mobility equipment, you may want to ask for a handicap room.  This reservation should be made well in advance and any specifications (refrigerator, pillows, etc) should be reiterated in the comments field.  Call the day before and confirm reservation and check in times.
  • Pills, eye drops and the other medications.  Take two-day extra supply.  With using restasis, the prescription label is on the outside of a fairly cumbersome box.  I was able to tape my supply to the lid and use that as the prescription instead of carting a whole box.  I did not need my extra days of supplies, but it was nice to have them.
  • Stock up on baby aspirin.  I had three little bottles of  baby aspirin in my personal item.  I was not questioned, where I saw others with bigger bottles of pain killers were examined.
  • Do expect to have extra body aches if suffering a related condition.  Aspirin and I were best buddies during the trip.

The one thing I did find I had a hard time with was staying hydrated.  Once in the wheelchair, you are taken straight to the gate.  So, bathroom break and getting any drinks is out of the question.  Upon arrival on the other side of your destination, you are taken directly to arrivals section to be picked up by your chauffeur.  I was fortunate that I had a friend who met me at my destination and took me grocery shopping to get snacks and water for my room.

I did take advantage at the restaurants of any free refills.  I also used the coffee maker in my room for tea and coffee.  Be advised that the water in other cities may taste different.  I found brushing my teeth unusually ucky at my destination due to the different mineral composition.

Eating can be a challenge.  Of all the places I ate at, only one waiter announced that he would be more than willing to help with selections for food allergies.  I was impressed.  It was an upscale setting though.  Most others, you just have to read the menu carefully and ask if you are unsure.  I did not have to starve through anything.   Five Roses PubGraduation At the Green Burger without the bun and fresh made fries.

As you can see, I wore my POC for the event I was in and during all outings. Sometimes I needed it when eating, sometimes not.  Most times I had the oxygen going anyway.  It just made talking all that much easier.  I did have a couple of coughing attacks.  But nothing like I have in the past.

Also, I did find myself feeling light headed at about 30,000 feet when the plane levels off.  I checked my hands and lips, they were normal color.  I put the oxygen on and the light headedness went away.  So, feel free to oxygen up as needed.

When we were in a park area, I actually saw someone else with a POC.  It is nice to see people allowing themselves to not be contained by the limitations of the 25 foot cord to a machine.

I will admit that after two days my back was spasming something awful.  But, I am not used to wearing it almost all day for days in a row.  I guess I will have to work on that this summer. (So, I look like a mini tank.  At least people will get out of my way.)

I only had two people ask me about my need for the oxygen.  I explained that I had a condition  that affected my lungs from working properly.  They were fine about it.  They then congratulated on me being mobile and taking on the world.

I even met a gentleman getting his doctorate after suffering a brain aneurism two years ago.  He was told he would never talk, walk or eat alone again.  He walked to get his doctorate and plans on getting another one soon.  He even has plans to start something to help people like him and me to continue our education even despite our physical limitations.  Also crossing the stage was a woman with a walker and a gentleman in a scooter getting their master drapes for their bachelor’s.

What is the bottom line…..plan head accordingly for travel.  Be prepared to be a little dehydrated.  Try to have a connection at the destination to help with dietary and hydration needs.  Don’t be surprised if your hormones and conditions flare up before the event.  Do pack light.  (I wish now I had used a slightly larger carry on and put my purse in it to make things a little less cumbersome.)

Most of all, thank God that He has allowed you the opportunity to travel.