Tag Archives: Coping

A feeling of peace

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Today is the first day of holidays for most teachers and students in Victoria, Australia.

I am sitting in my lounge room watching Bargain Hunt on television, feeling a little pain but a lot of peace.

It is a good time to bring my thoughts together in words. These are my thoughts:

The working year is finished. I don’t have to plan anything right now, but I will have to at some point in the next month.

As exhausted as I was I attended the staff Christmas social function. I dressed up but I’m not sure I looked ok, I think I looked fat and was boring. I was too tired to know.

My son graduated from his postgraduate study on the weekend and it was a great day. Strangely, I really enjoyed the graduation ceremony and the speeches. I am very proud to have a son who achieves highly academically and who cares a lot about others.

My family visitors have returned home and it was lovely to see them as I won’t see them on Christmas this year.  I hope they don’t think that I am becoming a sad, tired lump of a person.

My niece is the cutest little thing. I can’t wait for the next baby to arrive.

I have a short manageable to do list for the next few days. But right now I don’t want to move.

In six days I head to England for 3 weeks of adventure. I have no idea how this will go.

My coughing is gradually going away again and I have to feel well by Sunday, cross fingers.

Tea tastes wonderful on holidays.

Cheers to a restful day.

A work friend gave me this cute red teapot set, she said it just reminded her of me the moment she saw it.

A work friend gave me this cute red teapot set, she said it just reminded her of me the moment she saw it.

Worn down

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The Twelve Apostles, a group of limestone pillars off the south coast of Victoria. There are only eight pillars remaining.

The Twelve Apostles, a group of limestone pillars off the south coast of Victoria. There are only eight pillars remaining.

Chronic illness wears you down like a rock. Even when you have had good days and you start to think things may be looking better, things may be turning around… there it is again… the feeling of unwell. Drowning in pain and temperature and confusion. No one knows what it is like and the people looking at you can not even tell.

Like a rock, will you be worn down until you become smaller than a grain of sand, until you become nothing?

Stella Young TED talk

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Stella Young TED

Stella Young died unexpectedly last weekend at age 32.  She was a comedian, journalist and advocate for rights for disabled. Here is her TED talk from Sydney in April this year. Her speech provides much food for thought, enjoy.

 

A Quick Coping with Chronic Illness Quiz

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A Quick Coping with Chronic Illness Quiz

Question 1.

You have had a busy week, worked hard and kept up with life’s requirements and responsibilities. It is Saturday and your family is all out for the day, you are home alone. Do you:

a) Sleep in bed all day and have a shower just before anyone comes home

b) Write a list of all the jobs you need to do around the home and get as many done as possible

c) Get dressed in your favourite jeans and top and head to the local shopping centre for a days shopping, coffee and the beginnings of painful feet

d) Spend the day reading, sipping cool drinks and enjoying the peace and quiet

Question 2.

You have your bags and you are heading home after a busy day at work. Your body is telling you to sit down and your feet are starting to shuffle. A co-worker sees you walking past and calls out in a panic for your help with a cut and paste disaster on a Word document. Do you:

a) Tell them they will work it out, otherwise to redo it, and keep walking

b) Tell them that they will have to find someone else, that you’re leaving

c) Go over and manually help fix the document

d) Tell them the name of someone else who is good at that sort of thing

Question 3.

Christmas Day is approaching and your family, who live in another state, has been asking about whether you will be flying to be with them on Christmas Day. You haven’t been well and you have a long holiday trip planned for after Christmas, which you haven’t really saved properly for. Do you:

a) Tell them you are coming and then find the cheapest flights available

b) Tell them that your health has been bad and that you need to rest before your trip

c) Tell them that it is just one day and that you will ring them, that will be sufficient

d) Invite them to come to your place instead, knowing that they will never do that

Lotus flowers

Answers

Question 1.

All of these answers are acceptable, it just comes down to which option makes you feel most happy. All options have flow on effects, especially mental ones, such as the satisfaction of getting jobs done around the home or the feeling of restfulness and centredness after spending a day relaxing with a book, so remember to consider this as well. What will you get out of the action v’s what do you need right now. It is important not to keep thinking over the other options all day with guilt that you didn’t choose them. Choose your option and enjoy.

Question 2. 

The right thing to do here is c. This should be a quick fix to help someone and then you will be back on your way home. However, depending on how tired you are and how much pain you are in, the other options may slip out. Be careful to not let illness get in the way of you being the person you are without it. Checking your inner voice to make sure it isn’t driving negativity is very important and it can be hard to do that when in a lot of pain. If you do slip up, don’t forget you are human and you are in pain and sometimes you can’t be everything.

Question 3.

The problem with this question is that you probably want to jump on a plane and go be with your family for Christmas. However, life with illness means that you have to plan your energy use very carefully. Your body doesn’t care if it’s Christmas Day, your birthday, graduation day, the day you are presenting a proposal to your bosses, your children’s school concert day, the day you leave for a trip overseas, etc. Your body needs rest constantly, in order just to get through a normal day. Be very careful with planning big events and trips. Sometimes you will have to say no to some things in order to say yes to others. Don’t fight it, it is just the way you have to live with chronic illness.

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It doesn’t matter. Be kind to yourself.

Acceptance of a Chronic Illness

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I thought I might feel better after three and a half days rest but no I don’t. It is sinking in what I am dealing with here. I have two illnesses, both of them awful in their own right. Neither will kill me, good, but both will make my life extremely difficult. Today I heated up and flared up and slept and then felt worse. Now, it is 2.30am and I am just feeling ok. I should be asleep now. I have plans in the morning. Fatigue and pain are tag teaming and sending me desperately crazy. How am I to continue like this? How am I to work like this? Where is that bloody book I ordered with all the answers (or so I hope)?

I am going to think about the stages of acceptance of an illness and how I am going to rise above all this illness and disease. I had already gone through this with my fibromyalgia diagnosis two years ago. Now I am back doing it all over again with the diagnosis of inflammatory arthritis that is most likely more specifically psoriatic arthritis if you ask Dr Me. This diagnosis has occurred right in the middle of a fibro/arthritis flare, a flare that is not appreciating my new medication, otherwise known as miracle drug. So here are the stages. Reflection time.

Stages of Acceptance of a Chronic Illness

Stages of Acceptance of a Chronic Illness

A medicated life

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Hand with pillsIt is concerning that medication is the thing that keeps me getting up and participating in life. I would say I have a love/hate relationship with it right now. Medication that is.

The reason I love my medication is that it does positive things to my body that I cannot do myself, like keep my blood pressure down, dull the throbbing pain I feel in my feet and hands and stop the nerve pain all over my body that drives me crazy. Because of it’s help, I can go to work and do things in my life other than lay in bed or sit on the couch.

The reason I hate my medication is that it doesn’t fix my pain completely and it gives me all sorts of random side effects, one of which is to make the pain worse (yes I know, that is ridiculous) and make me fatigued and foggy. So, sometimes I still do end up in bed or on the couch feeling very useless.

When I feel like that I wonder if there is any point in taking my medication at all. However, if I think constructively I know that the extremity of the pain and fatigue without medication is much worse than when on it. In other words, my medication has a positive effect overall. Plus, this new medication, the one I am currently referring to as the miracle drug in other posts, should have a lot more impact in a positive way, in a few weeks time. Hopefully.

Sometimes I need to take more and more pain killers to get me going and keep me going throughout the day. This is not a good habit to start. So I’m stopping with that.Glass of pills

However, can it be seen that all this taking medication is not only a reliance on medication, but a slow slide into becoming addicted, physically and mentally? If you have to take a medication, and are not allowed to stop it abruptly due to the side effects, then are you not already addicted anyway?

Let’s explore…

Medical definition of addiction:

Compulsive physiological need for and use of a habit-forming substance (as heroin, nicotine, or alcohol) characterized by tolerance and by well-defined physiological symptoms upon withdrawal;

broadly : persistent compulsive use of a substance known by the user to be physically, psychologically, or socially harmful—compare habituation

Medical definition of habituation:

1. The act or process of making habitual or accustomed
2a. Tolerance to the effects of a drug acquired through continued use
2b. Psychological dependence on a drug after a period of use—compare addiction
3. A form of nonassociative learning characterized by a decrease in responsiveness upon repeated exposure to a stimulus

Thank you Merriam-Webster, it appears I had the wrong word. I am not becoming addicted, that only relates to harmful drugs (hmmm, that is subjective). I am becoming habituated, as definitions 1 and 2b above explain.

Right now I am 41, will I have to keep this up forever? Probably yes. When I was last at the rheumatologist, he said that I would be visiting him for ever. Thats like 30 to 40 years or more. That’s ominous. And, that’s a lot of money.

I guess I can’t think about whether I like this new reliance or habituation of medication or not.

It just is. Move on.

Learnt behaviours

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I know that I was taught to work hard.

I know that I was taught to persist.

I know that I was taught to be tough.

I know that I was taught to strive for success.

but

I am not sure if I was taught to find enjoyment just for enjoyment’s sake.

I am not sure if I was taught to seek happiness.

and

I know I was not taught how to deal with obstacles that mess with your mind and your life.

Please enjoy your only life