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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7 thoughts on “Have your tool kit ready! Tough Time Survival!

  1. Mikki

    Thanks for sharing your illness & experiences. I don’t take meds for my blood sugar drops right now, but I’m pre-diabetic so your blog is helping me assess my situation. Many hugs and much love, Mikki 🙂

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    1. blargmaddie

      Mikki,

      I’ve had Type 1 Diabetes for 35 years. Hypoglycemia and I are old adversaries (or buddies.) Hell, at this point , who knows?

      Anyway, my diabetes tool kit consists of ALWAYS having something with me to bring up my blood sugar. I usually have gummy bears or something fun (since I can’t usually eat candy.) I count carbs, and they have the info right on there so I know how much to take to bring my back to even.

      Here are a couple of tips:

      Do not ignore the symptoms! When you suspect you are low, check it and do something about it. I have many times thought “Oh, I’ll just finish folding these clothes or driving to work or buying groceries THEN I’ll take care of it.” Those are usually the times I come to in an ambulance. Our bodies give us signals for a reason.

      Make sure friends and family know some signs in case you are unable to tell them that you’re not well. My closest friends can sometimes tell before I can. One of my “tells” is that I tend to shift from one leg to the other or clinch one butt cheek then the other over and over again. Don’t know why I do it, but when I catch myself doing it I know it’s time for action. It looks kinda like I’m doing the “pee pee dance” that kids do when they need to urinate. LOL

      I can’t feel the symptoms until I’m very low (40 or less.) I make sure that someone (even if I don’t know them very well) knows that I have diabetes, that I have an emergency shot in my purse, and how to tell that I’m not ok. I never completely lose consciousness so for my safety it’s important that people know that just because I look ok does not mean I’m ok. I can tell you my address, SSN, where I went to high school, my dog’s name. I won’t remember any of it. People who know me can tell something’s wrong. New folks just think I’m weird.

      I am, but the diabetes weirdness is transitory. 😝

      Like

      1. you so need to expand this a bit for a blog… advice to those with diabetes… or a diabetic tool box. IT’s practically written!!!! Really!!! I love this. I am pre diabetic because of some of the meds, and the doctors mess around trying to figure out if my experimental med trial would be messed up if I took a medication to help me. I’m not allowed to change my meds until we get through the trial. (That’s the one med I forgot and WHOA, which is a strike against it. People are very bad about taking their medications ALWAYS on time. To cause such a severe reaction so quickly was important to note!)

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  2. blargmaddie

    KittyNH – Thanks so much for this! Having “check you meds” on the checklist is an excellent idea.

    You and I have discussed how we are on so many meds that we sound like a rattlesnake when we walk. I forgot some of mine about six weeks ago. I ended up in a very bad, dark spiral. Now, I check my meds whenever I feel “off.”

    Finding something to make you smile or laugh is essential. At first, my friends were afraid to joke around me when I’m sick/depressed/having a flare. When I realized what was happening, I told them – TELL ME DICK JOKES!!! They were shocked. What???? I said, “You guys always joke and so do I. Just because I’m sick doesn’t mean that that stops. It means that it’s more important and appreciated than ever. Your dick jokes are precious to me.” Then we all laughed and got back to our regular bawdy selves.

    Friends can also help be a buffer between you and the cruel world. I was at a conference in DC with a few friends. We had to get from one building to another for meetings. I love the buildings and DC in general, but I was having my joint pain and fatigue. I knew that if I spent my energy reserves walking from place to place I would have nothing left for our afternoon sessions. My closer friends knew that I was having a hard time. When we started to change buildings, one of them said, “Let’s take a cab.” A third person that knows I have health issues, but doesn’t “see” them said, “It’s just a mile. Let’s walk. We could all use the exercise.” I would’ve loved nothing more than to walk around seeing people and experiencing the city. I was crushed. I told her that I wasn’t able to walk. “You folks go ahead. I’ll wait for a taxi.” She said, “But you’re younger than me.” My friends said, “We’re going to ride in the cab too so we can strategize how to handle the Senator that’s up next.” I loved them for that.

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    1. your friends rock!!! I was in St.Louis, and we were going to walk to the restaurant that was “just a couple of miles away!” A good friend with the group knew I had not yet learned to really SPEAK UP. She also got I was over due for meds and needed FOOD to take them. She was “TAXI TIME!” Now I’ve learned to speak up.

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  3. fighting back

    I set a timer. When the timer goes off, I check to make sure I’ve taken my meds. Interestingly, it’s usually the very busy morning that makes me miss my meds, so I’ve got a timer at noon, to make sure I check that I’ve taken them.

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