Have your tool kit ready! Tough Time Survival!

The other day I awoke, took my first set of morning pills that have to be taken on an empty stomach (and then no food or drink for 30 minute after), and then did something very stupid.

I forgot to take my other medications, the ones that require food.

My dog decided to go ballistic over a new puppy next door, and I was busy dealing with his barking.  I then just went on with my day.

WHAT A DAY IT WAS!

I began to feel very weak and unwell.  This was not only physical, but also mental.  Now, those of us with a chronic illness deal with a lot of depression.  Pain demands a great deal of energy, both mental and physical. I am aware that one of the medications I take does not “build up” in the body and missing even one dose is dangerous.  I was about to find out how dangerous.

Somedays, you just know things are wrong. (photo by Mark Roberts)
Somedays, you just know things are wrong.

I had cramping, a blazing headache and started shaking.  What I was truly most frightened about was the depression and anxiety that set in quickly. Each hour brought more pain and more anxiety.  I felt I simply could not live with so much pain and depression.  While not suicidal, I was using all the tools and tricks I knew to keep myself somewhat calm.

I began monitoring my physical symptoms, making sure that they did not escalate to where I would need to go to the hospital.  I was ready to go in if needed, and knew it would be important not to drive myself.  I had the number of the local taxi service out, and also had texted my husband at work. Thankfully, before I got to that point, I figured out the problem.

Do you have a tool box full of tricks and treatments?  The time to “wing it” is not when you are in the middle of a crisis.

So what were the tools I use?  What’s helped me in the past deal with a sudden onslaught of pain and depression?  Here is the short and the long version!  WHAT TOOLS DO YOU USE?  PLEASE SHARE!  Because you can never have too many tools when dealing with chronic illness!

MY TOOLS

 Cliff Notes Version

1.Depression lies (thanks Bloggess)

2.Laugher is the best medicine

3.Distraction is important. (thanks youtube)

4.Have friends on stand by at all times.

5.Nature is good

6.Indulge.

7.Stop trying to do stuff, especially stuff you don’t want to do.

8.You have an illness, of course at times you will feel unwell!

9.Share you are having a rough time of it. (this includes sharing with your physician or go to the ER if things really escalate)

10.Don’t forget to take your medications correctly!  They can only work well if you follow directions on when and how to take them!

 

My Tool Box

1.Remember the Bloggess.  Jenny Lawson (aka the Bloggess) has blog posts that are helpful in two ways.  The first way is she writes about the important fact that DEPRESSION LIES.  My depression was lying to me saying “This pain is so horrible, I can’t live with this.  Obviously the medication is not working.  You’ll never be able to do anything other than suffer….”  I just kept remembering it was lying to me and just a few days ago I felt great, and I would feel good again soon.

2.Remember the Bloggess.  Again.  Because it’s important to DISTRACT YOURSELF.  That means avoiding anything depressing, like self help books about depression.  Or sad movies.  Or the news.  You have to laugh, and some of her blogs will make you laugh.  Think giant metal chicken, and you will survive. I also recommend the youtube bloggers Simon and Martina at Eatyourkimchi.  Martina suffers from a chronic illness.  She gets your pain, but she also shares the comedy aspects of life in South Korea.  You will laugh.

3.Think “Kitten Videos”.  My daughter called me from half a world away, where she lives, and told me “Watch kitten videos”.  Anything that makes you go “Awww” works well.  Also cats will make you laugh.  Avoid anything with Sarah McLaughlin, we want happy videos about animals. This cat site has calming videos of Persians. The most famous is India the kitten.  Also call your own pets over, nothing is more calming that our pets!

My grandkitteh Aladdin makes me smile.
My grandkitteh Aladdin makes me smile.

4.Remember your friends.  I’ve recently moved to a new neighborhood, and I really don’t know anyone well enough yet to knock on their door and say “Can I just sit here for a bit, I’m scared.”  Instead I have a mental list of everyone I could text and call that would drop everything to be there for me.  Just to listen.  The list was topped by two great girlfriends, and they also have my husband’s phone number.  The point wasn’t that I talked to anyone, the point was I knew I could talk to someone if I needed them.

I would also like to especially thank my friends, who while I did not call them, are always there for me.  When you give someone with a chronic illness permission to call, you are doing a good deed.  Just the KNOWLEDGE that I could call my friends made me feel less anxiety and safe.  Want to be a hero?  Just give a friend permission to “call if needed” with no judgement- just support.  Even if they never call you, that knowledge “I can call” is a wonderful gift that will help your friend through tough times.

remember your cheering section, even just a few friend can be all you need to get you through a rough time.
remember your cheering section, even just a few friend can be all you need to get you through a rough time.

5.Go outside.  If this was a real depression, not a lack of drug reaction, this would have worked pretty well.  It was a beautiful day and the combination of sunshine and walking the dog would have lifted my spirits.  I felt anxiety so I took the dog for a walk in the wooded area behind my house, and nine of out ten times, this makes me feel better and that at the very least I made the dog happy!

6.Break the rules.  Dieting?  Eat something you like, and forget the calories.  Find a great book on Amazon, who cares about the budget!  Order that $15 book and munch away on buttered popcorn.  Indulge.  You are interested in getting through the NOW, and you do whatever it takes.  Probably a glass of chardonnay, or a bottle of chardonnay, or heck a barrel of chardonnay, is not a good choice. But for me, food and a book works very well.  Also know your body.  A glass of wine is very helpful for many friends with chronic illness.  If it works, and you feel comfortable with it, do what works.

7.Don’t try too hard.  This is the most difficult for me.  I  hate that when I am depressed or in pain I have a “Wasted day”.  NOTHING is going to get done.  I’m just going to deal with the illnesses all day!  So I keep trying.  I cleaned the litter box, and I was “There I did something!” But I was exhausted and felt guilty as that was all I had done.  I had to then assure myself “You have a serious illness, and taking care of yourself and dealing with this illness IS YOUR JOB.”  I assured myself I would feel better, and it was time to stop faking being well.

As long as you keep moving, you are in the race. Don't expect to keep up with everyone else.
As long as you keep moving, you are in the race. Don’t expect to keep up with everyone else.

8. Give yourself permission to feel unwell.  This ties into number 7, if they day is a write off it’s fine.  It’s not a write off if you are battling to keep sane and deal with waves of pain. That’s job enough, don’t try to throw making a huge dinner or cleaning all the bathrooms on top of it.  If you are not a positive Pollyanna type, accept it.  My neighbor with RA is very upbeat.  She is “In the past we’d be in wheelchairs!” (I have also hints she is on some wonderful meds I avoid!)  I’m not going to be upbeat all the time, and that’s fine.  We should not let others tell us how to deal with our personal chronic illnesses.  Grumpy cat types unite!

9. Make sure people know you are feeling unwell.  Ask them to check in with you.  I sent my husband a text, telling him how things were.  He called right after he got out of a meeting.  If you know someone is going to check on you, especially if you are alone, you’ll feel safer.  I even reached out to people in Facebook, just in a PM, “I’m feeling bad, I’m having a bad day.”  They checked back throughout the day.

10. CHECK TO MAKE SURE YOU DID NOT MESS UP YOUR MEDICATION!  When I felt myself getting worse, I thought, “I’m going to take my next dose of medication early, I can’t wait another 2 hours.”  As soon as I saw that pill container with the arthritis drug I felt instant relief.  I still felt like crap but I KNEW WHY.  Medicine timing is very important.  Read the instructions, and be clear with your doctors about WHEN is the best time for taking a medication.  My thyroid medication took almost 6 months to figure out. When I took it at night on an empty stomach, I suffered from insomnia!  The middle of the night, I awoke about half an hour later with insomnia.  First thing in the morning works best.  However, not if I forget half an hour later to take the other 3 medications I rely on.  Medication juggling is very difficult.  We have to be vigilant.

 Remember, if things get too wacky, it may be your MEDS not you. Check to see if you have taken them correctly and contact your doctor.
Remember, if things get too wacky, it may be your MEDS not you. Check to see if you have taken them correctly and contact your doctor.

Medication mix ups can also be very dangerous.  I was getting ready to call my physician right before I discovered what had happened.  I knew that I was getting worse instead of better, and that my “tools” that usually work well were failing me.

…..also you don’t have to have a chronic illness (or two of three) to share your TOOLS that get you through the tough times.  I would love to hear more ways people have of making it through the tough times.

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Ten Reasons Why I Am Your Toxic Friend

My Facebook feed is full of various links to the delightful articles entitled:

“TEN TOXIC FRENDS YOU SHOUD DROP RIGHT NOW AND LAUGH AND DANCE ON THEIR GRAVES AFTER THEY COMMIT SUICIDE BECAUSE YOU REJECTED THEM!”

or…

“TEN TOXIC FRIENDS THAT WILL MAKE YOU TOXIC IF YOU DON’T HARDEN YOUR HEART AND DRIVE THEM OUT OF YOUR LIFE INTO A WINTER SNOWSTORM WHERE THOSE LOSERS CAN DIE!”

or….

“TEN TOXIC FRIENDS THAT YOU SHOULD DROP AS YOU ARE OF COURSE PERFECT AND SHOULD NOT HANG WITH LOSERS!”

The first thing I thought on reading one of these articles was “Wow, there are people that have so many friends they can get rid of up to TEN of them?  They even have ten friends? Who has TEN FRIENDS?”

After reading this articles I discovered that I am indeed YOUR TOXIC FRIEND.  In fact, almost anyone with a chronic illness is YOUR TOXIC FRIEND. The below is inspired by all my wonderfully brave and strong chronic illness toxic friends.

I'm a little complicated and different....(photo by Andrew Merritt)
I’m a little complicated and different….(photo by Andrew Merritt)

TEN REASONS I AM YOUR TOXIC FRIEND

Chronic Pain Edition

  1. I will whine and complain a lot.  I may not be very positive.  I may not find much to be positive about.  I probably have just come from my specialist (one of several) who is “In trials this drug helped 80% feel 20% better, however there is a chance you will may catch Ebola.  It’s just a side effect though, don’t worry about it.”  It’s hard to be your happy positive friend all the time.

    Chronic illness is not glamorous, but we adore our glamorous friends. Share you life with us!
    Chronic illness is not glamorous, but we adore our glamorous friends. Share you life with us!
  2.    I may not be supportive.  This is not because I am not supportive of your exciting successful life.  If I am honest,  I am jealous.  I do want to hear about your trip to Madagascar to feed orphan lemurs, and hang with Brad Pitt.  Tell me, but part of my heart is breaking that I also can’t feed baby lemurs.  (Brad Pitt you can have).  So if I’m not cheering about your fantastic life it isn’t that I’m not happy for you.  I am.  Just give me a few moments to warm up to it.  I want to feel part of your life.  I just need to mourn the part of my life that is over first. Bear with me, and keep sharing.  Remember this is my problem not yours.

    I might be a little busy trying to just hang on at times. But I still need your friendship.
    I might be a little busy trying to just hang on at times. But I still need your friendship.
  3. . Money.  I will be your cheap friend.  I won’t be first to reach for the tab.  You send me beautiful holiday gifts and in return I send you a home made book mark.  I wish truly that I could buy you everything deserve for putting up with me.  I wish I could gift you with the knowledge of what your friendship means to me, because I honestly can’t afford to buy you a nice present.  Medical bills, especially in the United States, are very high.  Co payments for the insured often eat up expendable income.  Sometimes money goes for a thumb brace, or a wheelchair, or even just something to make my life easier.  I spend too much on books, because I find reading such a wonderful escape.  I am cheap as I am broke.

    Yes, we can difficult to understand at times. (photo by Eric Vicaria)
    Yes, we can difficult to understand at times. (photo by Eric Vicaria)
  4. I will not be on time or be reliable.  That is because I don’t know what each day will bring.  Will I have an arthritis flare?  Others don’t know if they will have a killer migraine.  Perhaps they will just feel sad, and need a day in bed.  Whatever our long term medical issue, the one thing we all have in common is unpredictability.  We have no clue if we’ll be able to make that lunch date or not.  We may spend time getting ready to go out, to find we are exhausted.  We are not to be relied upon, and we know it.  Don’t count on me.  But know I count on you and your friendship.

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    We’re not always ourselves. Let us know our fight to manage our health is appreciated by you.
  5. I will focus on ME!  This means it takes a strong person to be the friend of a person with a chronic illness, because of this we have few true friends.  So we will take any opportunity to just dump on you all our miseries, fears and hopes.   It is also helpful to talk to someone that is not a close family member or medical professional. Consider listening to someone with a chronic illness a gift to their husband, wife or children. They take the burden of this, and any break is a wonderful gift only you can give them.  It is important that I remember to ask about you and your life, and indeed remind me or just butt in with updates about your life.  It’s good for me!  Also by talking about yourself, and your problems and happiness, takes the focus away from ME, and toward someone else.  I can be a good listener also.

    You may bring the gift of a break from my constant whining to my family! (photo by Eric Vicaria)
    You may bring the gift of a break from my constant whining to my family! (photo by Eric Vicaria)
  6.  I will talk about inappropriate topics.  These will include medical stuff you probably don’t want to hear about while eating.   I will probably talk about bowel movements and migraines from hell and funny rashes during dinner parties.  This is because this is the reality of my life.  I’ve had to overcome any respectful distance I had between my body functions and my mouth.  I talk with doctors galore about the most intimate and disgusting things, until I become a little too comfortable with it.  A gentle reminder that this is gross is welcome, but also, you may just have to put up with my TMI mouth.

    We all need friends, or minions to do our bidding. Whatever! (photo by Andrew Merritt)
    We all need friends, or minions to do our bidding. Whatever! (photo by Andrew Merritt)
  7. You may feel our relationship is one sided. You may not feel comfortable talking about your life and your problems.  You may feel your problems are nothing compared to mine, so why would I be interested?  This is a common fallacy.  I am very interested in the lives of my friends, and while I have to admit I feel overwhelmed at times by my health, I am not overwhelmed by yours.  I want to listen.  It’s a sign of respect when you are honest and open with me.  You will find I have incredible empathy, and if anyone with a chronic illness says to you “Well that’s NOTHING, listen to how awful my life is!” you have every right to drop them as a friend.  That person truly is toxic.  Most people with a chronic illness do not feel that way.  We are indeed happy and glad for our healthy friends.  We would never ever wish illness or pain on anyone else.

    Sometimes it's hard to smell the flowers. Your friendship helps. (photo by E.Vicaria)
    Sometimes it’s hard to smell the flowers. Your friendship helps. (photo by E.Vicaria)
  8. I probably won’t listen to your well intentioned medical advice.  You have something wonderful to share with me.  Scientists have found a cure for whatever I have…. IN MICE.  My own doctor jokes with me that every article about a scientific breakthrough should be ignored if anywhere in the article it says “IN MICE”.   Also, I know you have a friend that found acupuncture so helpful, or an article proving drinking apple cider vinegar cures arthritis. I am sorry if I am not respectful of your advice and caring.  I understand it’s because you do care that you share, but if I ignore you advice please don’t be angry.  I have a good medical team, and medical science is not able to cure a WHOLE LOT OF STUFF.  In fact, it’s shocking how often doctors say “Well, we can manage that, to the best of our ability, but we can’t cure it.”  Major illnesses like most arthritis disease and almost all inflammatory illnesses are without cures.  Even managing these illnesses is hit or miss.  It is depressing, for both patient and doctor.  In fact, neurology and rheumatology are the least picked of specialties for new physicians.  It’s just too darn depressing to have patient after patient that will only get worse, not better.

    I may not always take your advice, but thank you for caring.
    I may not always take your advice, but thank you for caring.
  9.  I am grumpy sometimes.  I may not want to talk.  I may withdraw.  This is far from the time to pull away.  It’s the time to remind me you are still my friend.  I could be feeling depressed. Depression is the often deadly companion of any chronic illness.  Want to be a hero? Stick with me through the rough times and you could be saving a life.  I will be that moody friend.  When I disappear for a bit, it’s worth finding me.

    I'm still a better friend than an insurance salesperson. (Photo by E.Vicaria)
    I’m still a better friend than an insurance salesperson. (Photo by E.Vicaria)
  10.  I will not be an equal partner in this friendship.  I will ask of you far more than you can possibly ask of me.  But, your friendship is a gift that makes me feel needed and wanted.  It gives meaning to a life of pain and answers that question “Why should I go on?”  I should go on as I would be missed by my friends.  Plus, you’ll never get empathy and gratitude from anyone like you will from me!  Your friendship isn’t just for fun with a person with chronic illness, it may be one of the things that gets them up in the morning.  Friendship becomes something so much more than you ever imagined. It’s not always easy, but take pride in how important you are to another person.  Your life becomes more important and meaningful through friendship with a person with a chronic illness.

Yes, I am that toxic friend.

But, friendship has an importance to me that it doesn’t to other “normal” people that never make those toxic lists.  You will never be more appreciated ,or indeed loved and needed, than by your toxic chronically ill friend.

 

 

 

 

 

 

 

 

 

 

My Door is Always Open…. Sometimes….

My Door is Always Open… Sometimes…

The title of this post comes from the old children’s TV show “Duck Tails”.  The bad guy was a fox, and I would laugh because he would tell his crew ,in an attempt to be a good boss, “My door is always open, sometimes.”

This is the tale of my life.

Sometimes I am healthy enough for people to come over! (photo by Eric Vicaria)
Sometimes I am healthy enough for people to come over! (photo by Eric Vicaria)
Sometimes I'm not...(Photo by E.Vicaria)
Sometimes I’m not…(Photo by E.Vicaria)

It’s very lonely to have a chronic disease. I often want to have someone visit.  In fact, while I may stress about it before hand, I always find I do better after having someone visit.  Talking to a real live person, especially a friend, is very important.

The main problem is the unpredictability of any of these chronic illnesses. I have good friends that suffer from migraines.  I have only had two real migraines in my life, both sent me to the ER as I had no clue what was happening.  I can not imagine having to live with several of those a month. One friend lives with several a week.  Her life is one of cancelled appointments.  A migraine not treated early can incapacitate her for days.  She must cancel everything and take medication and rest.  This had not made her popular with her hairdresser.  Lunch with friends is only planned with fingers crossed.  If she wants to go on vacation, she plans in a few migraine days.  She told me “If I want to see and do a certain number of things on vacation, I know I’ll miss at least one day to migraine.  So I take an extra day of vacation to make up for it.

Her life is one of excellent health, 95% of the time.  It’s that 5% that means she can plan ahead, but the migraine can cancel plans at any time.

My own life is based around “How do I feel this morning?”  Timing is everything.  If I am having a bad flare, I have to cancel things.  Having my husband around helps.  He can entertain company and if I need to rest I do so.

I really want to have my good friend Chip come visit.  I always enjoy his company.  He’s even giving me one of his grandfathers paintings, and I”m really honored.  He knows I love REAL ART in my home as it gives such warmth to any decor.  Something made by hand reflects the personality of the maker.  I’m ready of have some of Chip’s family in the home I share with my family.

But, I keep delaying the visit.

First off, we are just moving into a new home.  This home was purchased because of my arthritis.  It’s one floor, but it’s from the 1970’s. Everything, and I mean everything, is just old enough to need replacing!  Also, my health is reflecting the stress of the move.  Boxes everywhere, and I’m trying to do a bit too much and paying for it.  Then there is health care.  To deal with the move I put off a lot of appointments and blood work and even starting physical therapy.  The focus was the move.

Now i am playing catch up.

I can handle a crowd sometimes....(photo by E.Vicaria)
I can handle a crowd sometimes….(photo by E.Vicaria)
Not so much others.... though I know company is very good for my mental health! (photo by E.Vicaria)
Not so much others…. though I know company is very good for my mental health! (photo by E.Vicaria)

However, I keep reminding myself, Chip is one of those friends that won’t care.  I care, in that I want to give him a good visit.  I want to enjoy his visit.  I would enjoy his visit no matter what, but I really would rather be having a good day!

I also have wool weekend coming up, which I haven’t even planned.  This is a long weekend of wool and yarn shopping in New Hampshire. It’s where I stock up for yarn for the winter, and also wool to do my felted creatures.  I have friends that will come and NOT mind if I decide to stay in bed, or I am up at 3 am because I am in too much pain to sleep.  The problem is I MIND.

Pity is the worst feeling ever.  If someone comes over during a really bad flare and they don’t feel pity for me they are cold hearted.  But, people with chronic but invisible illnesses tend to hide our pain.  We don’t want people seeing the time spent with tears and in the fetal position desperate for some relief.

I’ve written before about the curse of these illnesses.

People like to say “I am not afraid of dying, I’m afraid of being in pain.”

We’re in pain.  No one asked us “So, think you can handle this pain?”

Seriously, this is the nightmare people fear more than death.

It doesn’t matter we often say “I can’t handle this.”  You do.  You just do.  At one point I think each of us asks “So, I have no choice with this?  I just handle it?  Because I am bad at handling this.  Really life?  This is what I get?” (Life just laughs)

A chronic illness often means life has chosen a lonely road for you. You have to find those willing to put up with your inability to plan your days. The illness rules, we adapt, our friends do also. (Photo by Andrew Merritt)
A chronic illness often means life has chosen a lonely road for you. You have to find those willing to put up with your inability to plan your days. The illness rules, we adapt, our friends do also. (Photo by Andrew Merritt)

That “Everything is OK” image is something we even try to preserve for ourselves.  I often fail myself when I mistakenly think “This isn’t that serious, I can keep going, I feel pretty good now.”  Then I collapse into a flare brought on by my own over confidence.  My doctors have clearly pointed out that I have to STOP doing things before I start to feel tired.  I have to quit while I feel pretty good.  This is very difficult.  “I feel good, I can go to the grocery store also!”  (NO NO NO NO)

This is alas very Un American.  We’re supposed to push ourselves and run marathons and travel the worlds and crap.  Right.  It’s like the 100 year olds they write stories about that go cliff diving in Mexico. This is just a false “feel good” story.  It’s amazing how many “feel good” stories make people feel terrible.  Not running a marathon or cliff diving.  No one writes artless about people with chronic illness that are normal.

I’m going to unpack some more, catch up a little with the doctor side of things… and hope to have Chip down for some fun in October.  Also Wool Weekend will happen.  I’m going to pace myself, and focus on getting the wool I really need for projects.  I may not eat out. I can rest while others enjoy going to “Just one more stop”.  Also I have good friends that drive for me, which means I can enjoy myself even more.  Driving is painful, I can do it, but I do much better NOT doing it.  If my friend Natalie drives it means I can enjoy the fun part, the shopping.  It’s a gift she gives me.

I need to learn to trust that my friends won’t judge me and won’t be upset if I have to cancel or say “I just need to rest now, thank you.”