Chronic illness and a changing self

Chronic illness eventually changes the way you think about life.  This seems to happen bit by bit every day. The speed of this change would depend on the illness severity and the personality of the person.  I actually think I can feel my thought patterns changing. Not only has my body slowed down, but my thinking and decision making has become a lot more controlled.  I am becoming a lot more wary of tension and emotional build up. Some people may look at this and think I am not excited or passionate or involved. I am those things, it is just a slow, paced excitement, if you get what I mean. I also make decisions based on something other than head or heart, but I am not entirely sure what it is. Maybe I have started making decisions based on intuition about what I need?

Here are some thought patterns that become the mainstay of those who manage illness over a long period of time:

– Treasure the small things.

– Treasure special times with family.

– Evaluate what is really important.

– Make the most of every opportunity.

– Make the most of the life you have been given.

– Only I understand what I am going through.

– I have to prioritise my needs over what other people expect of me.

People with chronic illnesses only have limited energy, limited patience, limited effort. Anything too draining emotionally or physically has to be cleansed from your life. Deciding what and who is important and what/who needs to drop by the way side is important.  You have to choose quality over quantity in many things, including relationships. It just isn’t worth it to have negative and toxic people suck the life out of you, literally.

Every day can be a different challenge and this never stops. You try to plan around your individual needs, but this doesn’t necessarily go to plan. Every day is a new day and we never know how that day will go.

Can you feel your inner self changing? What is new? What have you left behind?

Mental fatigue

There are days when my mental health seems to be slipping from my grip. These are mostly days when my body and my mind are exhausted. The roller coaster of feeling good and feeling bad of feeling capable and of feeling useless wears me down. Some days I forget that there are good days, I forget what they feel like and I dismiss the possibility of ever having one again. On weak days I envisage a life become worthless with no way to improve. On weak days I wonder who will be there for me when I cannot be there for myself?

Every day is different. Yesterday I felt as if I was falling victim to a virus, but I suspect it was my immune system flaring at me. I needed rest. Today I am on a rest day. I don’t feel rested yet. I still feel sick actually. I wish the day had nothing in it and I could sleep and wander and draw and read and I might feel rested. Instead, I have jobs waiting for me that I carry around like a dead weight. I don’t know why I feel like that but it is probably making my health even worse to be thinking that way. The “normal” me is passionate and inspired and an ideas person. The “tired” me dislikes any commitment or any call to do anything.

I’m still not sure what is troubling me right now, fibromyalgia, arthritis, medication, tiredness, pain, sore throat, mouth ulcers, blocked sinuses, not being able to walk properly, the thing that isn’t right in my eye, real sickness, chronic sickness, being sad, having to work? How can I keep my sanity with all these issues that never go away?

All of this madness in my mind needs calm and rest.

Last night I ordered a book, Women Work and Autoimmune Disease. The book may help me work out how to control my health better. The problem is, every time I get my life at a good pace and my symptoms under control, something rattles it all and I am spiralling out of control again. I suspect I need to work it out for myself. Maybe I should work it all out and then write my own book. (Not like anyone ever did that before.)

Chronic illness and worrying

Every now and then my mind takes me to an inner place that I don’t want to face. These thoughts are fleeting but when it happens, my inner worries are revealed clear as a bell and as very real issues.

You see, I meet most situations with humour or funny dismissing statements. Humour is my primary coping mechanism. Humour keeps my mood up and my mind positive. Here are three examples of my behaviour and today that illustrate this:

The Dr finally got a cannula in my hand after a nurse had collapsed my veins twice, so I made a reference to the Derby day races on today and told him that he had just got a winner in the first race.

I was at the local shopping centre and eyed off these mobility aids and even took a photo thinking I might Facebook something about it later.

I came home and joked about the nurse’s failure to use my veins today, calling the bruising and blood pools on my arms exhibit 1 and exhibit 2, and the Dr’s perfect effort, which is barely visible on my hand, as exhibit 3.

I know that these silly ways of thinking and referring to my illness issues are masking the serious side of illness and the things that I think and feel deep inside. Deep inside I’m worried.

I used to be quite a worrier about all sorts of things. I believe that lately I don’t worry so much about money, bills, holiday plans etc. I have somewhat relaxed about some things probably because I have different things to worry about now. Even though I spend a lot of energy trying to cover these worries I know they are there.

The worries relate to how I feel when my symptoms are bad. Chronic pain and constant severe fatigue messes my head around, it confuses me as to what I have to deal with. When I have bad symptoms my body loses strength and my mind loses confidence in my ability to stay in control of my life. I worry about things like:

– I may be 41 but how old do I look and act, shuffling along so slowly with a limp?

– am I kidding myself trying to ignore the pain I am in?

– what actually is this illness, are there more diagnoses to come and what could they be?

– how are all these medical issues and tests affecting my mental health?

– will I be able to keep working?

– will I be able to keep my house and what happens if I can’t?

– how devastated will I be if I eventually have to use mobility aids?

– who will be there for me if I do get worse?

– will I be able to lead the life I want?

– have I become pathetic shadow of my former self?

So today, I went into the pharmacy to collect my prescription meds. $91 worth today.

And I thought:

Other people my age don’t usually have to spend all this cash on a bag full of heart and pain meds. How sad for me that this is what my life has become.

It was about two seconds of thought, then I immediately moved my mind on to the pretty things in the pharmacy gift section as I walked out the door, then got in my car and drove home.

I know my worries will come out sometimes but they don’t deserve a lot of time and attention, that isn’t helpful to me at all. (Except I just went through it all again to write this post, but it is probably helpful to get it written down anyway).

I do better mentally if I use all my interests, hobbies, work and a fascination in life, to distract me and take up my mental energy and imagination. Plus humour. A humorous perspective on life is helpful too. That is how I cope.