Being chronically ill it’s hard to have the energy to get through the essentials of day to day life.  Organization can fall by the wayside. But staying organized is one of the most important things I’ve done to help myself cope with my chronic illness.  Getting organized about my illness has helped me make my illness more manageable and even helped me get more out of my doctor’s appointments.  Over the years I’ve developed an essential tool set.

1. If you suffer from brainfog like me, it is crucial to write everything down.  And I mean everything.
2. If you have an important phone call to make take notes both before hand of what you are going to say and during/after of what was said.
3. Keep a symptom and pain diary, so when you doctor asks when symptoms started and how often they occur you have a concrete answer.
4. Keep a calendar of all your doctor’s appointments.  Schedule them as early as possible to get the best from your doctor.  When your doctor isn’t running late and still has energy in the beginning of the day he will spend more and quality time with you.
5. Doctor’s appointments can be stressful and it can be hard to remember what you were going to say and what was said.
   • Prepare for your doctor’s appointment by making a list of recent symptoms and questions for your doctor.  Make a copy to give to the doctor so he or she can follow along.
   • Bring a list of medications to give to your doctor.  You can use the one I made at the end of this post or make your own.
   • Keep copies of all of your medical records and bring them with you when you go to a new doctor.  This can save you from getting tests twice and help you get diagnosed if something was missed by another doctor.
   • Make sure you bring a notebook and pen to take notes of what your doctor is telling you at the appointment itself, so you won’t get confused or forget something important afterward.  (To take notes you can get a good old fashion notebook to dedicate to your health.  There’s computer software you can use to take notes.)
6. Make to-do lists as you think of things you need to do.  Whether its schedule a doctor’s appointment or refilling a prescription write it down when you think of it.  And then feel the sense of accomplishment when you cross it off your list.
7. If you have a lot of medications it can be hard to keep track of when to take what and even if you took them yet at all.  Make a schedule of your medications and check them off.  You can even get weekly pill cases and do them all in advance.  Try using my medication schedule at the end of this post if you don’t want to make your own.
8. Making lists of things you need to do or when you need to take your medication is great, but it’s useless if you don’t remember to check your lists.  The solution?  Set reminders.  Set alarms on your phone or a watch with multiple alarms or on your computer.
9. Be prepared for emergencies.  If you have a condition that requires you carry Emergency medical information on you at all times make sure it is kept up to date.  Keep an up to date medicine list on you at all times.
10. Ask for help!  When your sick you can’t do it all alone.  Ask your friends and family to help you when you need it.

Do you have your own tips to add?  Please leave them in the comments!

Files

Allergies and Medication List

Word File

Pages File

GoogleDocs

Medication Schedule

Excel File

Numbers File

GoogleDocs

Sometimes things come crashing down emotionally.  I didn’t realize what an emotional toll being so ill in the hospital with a double kidney infection had until yesterday.  I didn’t let myself feel it in the midst of the crisis.  I guess I was in survival mode.  Literally.

But yesterday gave me a chance to reflect on it.  I was at my regular monthly appointment with my psychiatrist (who I absolutely adore), and he was asking me the normal questions about my physical health as it affects my mental health and everything just sort of hit me.  And I started to cry.  All the stress I had been burrying so I could make it through the hosptial stay and infection and 10 days of at home IV antibiotics came bubbling up to the surface.  I didn’t shed many tears because my illness, Sjogren’s Syndrome, damages my tear production… among other things.  And that made me cry harder.

And then finally dealing with my immediate past made me think about my immediate and not so immediate future.  And I cried because the future is so unknown and that is just plain scary.  This round of IV immunospupressants – Rituxan – doesn’t seem to have worked.  That is enough to make me cry in itself.  It is just so disappointing.  I am unsure what I should do next?  Should I risk suppressing my immune system further and more potentially dangerous infections like the one I’m just recovering from and get another round?  Will it even work?  Should I try something even stronger?  Or should I not take the risk and learn to accept my life as it is.  Is my new “normal” getting around in a wheelchair and being in pain and exhausted all the time with dibilitating and life threatening symptoms?  Is that how I’m going to be forever?  If this is how I am at 25, what will my life be like at 50?  Will I ever be independent again?  Will I need a caregiver forever?  And the scariest of all… how long is forever if I continue to be this sick?  Will I die from my autoimmune diseases and not with it?

But after crying this out of my system I realized I need a “new look” on many levels.  I can’t LIVE my life if I’m thinking this way all the time, so I don’t.  But I did need to get it out of my system once and a while.  The rest of the time I am thankful for what I still do have.  I am usually happy.  I have a wonderful caregiver in whom I’ve found a great friend as well.  I have the most wonderful and supportive community of online friends a girl could ask for.  I have a sister who does everything she’s able to support me.  A dog who loves give me cuddle therapy.  My writing, creativity, faith in myself, and most importantly HOPE!

I also got myself a “new look” in a more literal sense.  A new haircut and a new outfit.

In an effort to stay constantly busy and stave off boredom (every Novel Patient’s ultimate enemy), I tend to take on a lot of projects.  And lately I think I may have taken on a few too many.  I tend to have a hard time finding that balance between bored and too busy.  Lately I’ve been tipping the scales towards the too busy side.  And then comes the stress which isn’t good for me.  Stress can make my diseases worse.  And I definitely don’t want that.

But being bored is a much worse evil.  My body may be sick but my brain doesn’t have to atrophy.  Nothing makes me more depressed than feeling like my mind is turning to mush.  That I am wasting my life.

So I’ve found ways to do something with my life despite being sick in bed most of the time.  The computer is a god send.

But my constant question is: how to find that balance and be just busy enough?