Category Archives: mental health

Chronic illness and a changing self

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chronic-illness-wisdom-title

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?

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Then there is guilt

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Guilt

I realised this morning that having illnesses in my life makes me feel guilty.  Guilty as in I have done something wrong to someone, not guilty as in I have done some crime.

I feel guilty that I am sick. I feel guilty that my life is this. I feel guilty that I have changed. I feel guilty that I inflict this version of me onto others. I feel guilty that my son has to witness this everyday. I feel guilty that I can no longer do the things I used to. I feel guilty that my moods are up and down and a lot down. I feel guilty that I come home from work, sit in a chair and then sleep two hours only to wake up in a grumpy mood. I feel guilty that I suddenly get angry sometimes. I feel guilty that I talk about illness and my symptoms. I feel guilty that I don’t feel a part of anything anymore. I feel guilty that I can’t walk further than a slow crawl around the block. I feel guilty that a shopping trip with me involves stopping and snappy answers. I feel guilty that my mind races all over the place and I jumble up what I am trying to say.

This could go on and on. Why, if I did not cause or ask for these illnesses to come to my body and into my life, do I feel guilty?

Mental fatigue

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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?

Girl thinking in bed

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.

Meditation

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.)

Women Work and Autoimmune Disease

Crazy brain moments

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Stone lady thinking

Some days I have a crazy frustrating circular fight going on in my head and I am sick of all the to-ing and fro-ing. A lot of these thoughts aren’t even that accurate, they are somehow twisted according to my mood or how stressed I feel or how fatigued I am or how much pain I am in. It might go like this:

There’s all these things to do.

I have to do something, now!

But, it’s such a lovely day to relax.

I need to relax for my health.

And there’s nice things to do like drawing.

But I have other things I should be doing.

Oh, I just noticed something else that needs doing.

So many things are being neglected.

I don’t like the way the things look.

I don’t have time to do them all.

Because I have to rest all the time so little gets done.

I hate that I feel like lead and that my body hurts as soon as I move to do something.

I shouldn’t do the lovely things I have waiting to do like drawing and reading and writing and art.

Because of all the things I have waiting to do that have to be done.

And I’m just sitting here debating what to do.

And doing nothing.

But I must have got some things done.

Because they are done and I have moved on to new things.

I ‘d better just decide what to do and start doing it.

I know, I’ll get a cup of tea and a chocolate biscuit.

Then I’ll start something.

Brain technical difficulties

Chronic illness and worrying

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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.

Mobility items for sale

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.

Worry birds

Is it ok to be sad?

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Eeyore under a cloud

Is it ok to be sad?

If you have had someone close to you die or you are having a relationship upheaval, then you are expected to be sad. Acceptable sad. You get lots of understanding and support with this sad.

What if, you just suddenly feel sad?

Maybe you are tired of life sad? Thinking about your life sad? Confusing situations sad? Woke up with sad? Those are worrying sads. Those sads are hard to understand, hard to support.  Those sads are risky so we fear them. What if one of those sads put you into a low so low that it became depression? Depression is disastrous.

The problem is, sad won’t be controlled. Maybe we should just accept sad and not fear it. That will take the wind out of its sails. Sad is just sad, that is all.

Challenges, Schmallenges

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Challenges, Schmallenges

We all have our life hurdles, challenges, issues.  I wonder why we call them negative names? Suppose they aren’t challenges, but instead they are experiences, events, characteristics of a life lived.

When we look at what is happening to us, it is important to not fall into the victim role. Yes, I have a chronic illness, but I have it, it doesn’t control me. I live with it present in my life. That’s my life. It’s a painful tiring existence, yes. And I think about it all the time. I’m trying hard to control it and pretty much cover it up every day, but that is what I choose to do about the situation I have. I keep living the best way I can.

No illness is going to stop me being, doing, going, experiencing, loving, risking, challenging.

Quirky pictures like this just make me smile. Have to be careful to not be too serious, chill.

Quirky pictures like this just make me smile. Have to be careful to not be too serious, chill.

We all have things in our lives. You know the sorts of things I mean… health problems, sick relatives, loss of jobs, extremely sad losses of parents and children, disappointments, tensions, unexpected bumps and spills, events that cause us to question who we are and what the hell we are doing.

It’s like a lucky dip and we are all in the draw.

What did you get?

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Doesn’t this pic just make you all excited inside? Those were the days…I won’t start on the issue of early gender expectations.