Tag Archives: Mental health

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?

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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?

Solo trip to Struggletown

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Struggletown

Being an independent person is starting to feel like a problem. Being an independent person has got me used to relying on myself and used to not needing or asking anyone for help. I like being independent. Actually, it is all I know. This is a good trait, yes?

No. Because when you have a chronic illness your body makes it very difficult for you to stay independent. With an unlimited budget, you could do it. But the fact that illness leads to difficulty working means that money is not in abundance. Eventually there will be times when you will need help. With a caring and supportive spouse or family, you could do it. However, many people with chronic illnesses report that their families do not support them how they need, that their illnesses are not trusted as real or that they are spoken about behind their back and called names such as lazy.

Probably even worse is the position that single people with illnesses find themselves in. They need help but don’t know what to do about it. Probably don’t know what to ask for help with and possibly don’t even have anyone to ask.

Illness tends to drive people away. You cannot be relied on anymore, you’re always sleeping or sick or staying home to rest. You aren’t fun anymore, you stopped taking risks and staying out late and being energetic. Pain is a boring topic. A future with you started to look sad and boring and way too much hard work.

There is a cycle happening here. Before you know it you are ill, isolated, lonely and depressed. There’s no surprise then that the chronically ill account for a large percentage of suicides.

Some American stats to ponder, from invisibleillnessweek.com:

– The divorce rate among the chronically ill is over 75 percent.

– Depression is 15-20% higher for the chronically ill than for the average person.

– Physical illness or uncontrollable physical pain are major factors in up to 70% of suicides.

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

Testing times

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Currently I have been undergoing diagnostic tests to see if perhaps another illness could be added to my list of complaints. One might think this is a productive process as information will come from these tests which can be used by my rheumatologist, that can inform treatment. Yes, on paper tests seem like a good idea. But in reality, I think tests are becoming more and more a bad idea. For me anyways. Here are five reasons why:

Fibromyalgia brain1. I am hypersensitive to pain. That means that my body receives pain about five to ten times what most other people feel. Therefore, “You will feel a little sting” means nothing to me. With my body, there is no little sting, especially when you are prodding about trying to find my deeply hidden veins with a needle.

2. Tests take a while, results take a while, appointments take a while. Living in waiting mode negatively affects your mood, your mental state and your capacity to stay positive. Each appointment leaves me flat like a pancake and I can feel depression hanging there just waiting to get in.

3. Often tests don’t show any conclusive results anyways.  Unfortunately, just because it can’t be seen in testing doesn’t mean it’s not there. Possible waste of time, money, pain and effort. Did I mention that this is the third time in six years I have lined up at the rheumatologist for a diagnosis?

4. The doctors are lovely, the nurses are lovely, the staff are lovely, but there is not getting around it, doctor’s surgeries, pathology offices and hospitals are full of sick people.

This last point really hurt me today. I am very sensitive to others’ feelings, so even in my fatigued zombie state I did not miss two key signals today. The first hurt was when I was in the MRI waiting room, waiting my turn. The lady before me had gone in to be tested and had left behind two middle aged sons. After some random banter they started talking about Mum’s tests and the word inoperable came out. That word made me sad. Sad for the lady and sad that the world has this word.

The second signal came when I was redressing after my MRI was done. Which, by the way the testing lady said I stuffed up because my leg twitched and moved before the contrast went through. At multiple hundreds of dollars, this better not be true, especially with the amount of pain I was in today. The second signal was impossible to miss. Somewhere in the passageway in the pathology area a small boy (he sounded maybe seven or eight) was screaming. Screaming in pain and desperation begging for whoever was trying to do something to him to stop. “Stop it, stop it, don’t, leave me alone” type screaming with full volume and distress. That made me upset. I silently prayed that this boy’s discomfort is short lived and his illness is acute such as with an injury rather than chronic and/or possibly terminal. I am sensitive to others’ emotions and with this being a child, hearing his pain really hurt me inside.

5. Situations like this highlight the empty space beside me. Having a partner to support me in stressful times would be nice. Everyone else seems to bring someone with them in these places.

Perhaps it is third time lucky and all my symptoms get categories finally, and I don’t have to do this ever again. I can only hope.

MRI machine

What is normal?

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Black Sheep

I think society is too concerned with being “normal”.  This is my opinion and you may not agree with it.  I will tell you what led me to think this.

Presently my health has been spiralling in and out of fatigue in an uncontrolled and erratic way.  I am not sure what to blame, whether it is being busy, being stressed, not getting enough sleep, erratic weather, or perhaps it is just bound to happen periodically no matter what I try.  I am feeling very abnormal at the moment, like I cannot keep up with my peers and live my life like others.  For example, tonight I drove home from work and parked in the carport only to have zero energy left to actually get out of the car, unlock the door and go inside.  When I finally went inside every second focused on me getting into bed for a nap. I don’t think my peers are sleeping at 6.30 pm because they almost crashed asleep in their carport.

It happened that before I came home tonight I was sitting in the car briefly listening to the radio. There was a lady on the radio (possibly an expert, but I didn’t hear her name), talking about depression and offering advice as to how to help a friend regain a normal life after being depressed.  I kind of got angry inside when I heard this lady use the word “normal”.  I thought, “what is normal lady, maybe this is normal for this person?” I think this was a regrettable choice of word. To tell a person that they must aim to “get back to normal” is to dismiss the struggle, to ignore the effort on the days where depression was experienced and survived, to categorise and ostracise the individual that this person is. Trying to gain “normality” may equate to setting this person up for failure. Trying to gain a more positive outlook might be more appropriate.  Or trying to regain constant work life, that might be what the person needs. Being told he or she is living an abnormal life, that is not needed.  What happens next time the illness becomes bad again? Does this person feel like he or she failed because they have to admit they are unwell again? Is the illness hidden on subsequent episodes? Does this person begin to hate who they have become?

What is normal? The dictionary says normal is ‘conforming to a standard’, or ‘the usual, typical, or expected state or condition’ (Google).

If I wish I was “normal’ I’m not sure what I am wishing for.  It would be much clearer for me to say I wish I didn’t have a chronic illness. Everyone leads different lives with different issues, challenges and problems.  The variety of personalities, experiences and lifestyles of people means that normal is a fallacy.  For some people, having a chronic illness has become their normal, their life.  Because if you start to think you are abnormal then it is like the illness is taking control and the true person is lost.  It does not matter if you are in a situation where you could be classed as “abnormal”, you continue to be a valued individual- you continue to be you.

Unfortunately, having a chronic illness is normal life for many, many people.  I read a paper that said 26.1% of people in my age bracket, 25-44 years old, reported having at least one chronic illness in Australia in 2004-2005.  Ten years on, I am sure this is even greater today, as reporting is more common and diagnosis and treatment for illness more accessible nowadays. This survey also found that 53.1% of 45-64 year olds and 79.6% of those 65 and over reported having one or more chronic illnesses.  As the two older age groups had over 50% with chronic illnesses, does then mean that chronic illness is in fact normal for over 45s? Hahaha. That isn’t true is it? But statistics show that chronic illness is the expected state of older citizens.  Perhaps I am just a few years ahead of time?

The concept of normality has a judgemental element to it.  It is like organising individuals into “OK” and “not OK” categories. Everyone stands around pointing fingers at each other saying you aren’t normal, when in fact, variety, as seen in everyone as a society, is normal. Is it normal to not be normal? That would make a lot more sense.  Coming with the judgemental concept of normality is stigma.  The stigma towards being abnormal is what is to blame for self image and self esteem problems, mental health issues, hiding the truth, staying in the closet, etc.

If we instead considered that what is normal for one person is not the same as what is normal for another person, much of the stigma disappears. Perhaps, the idea of normal is also fluid throughout one’s life.  This type of normal does not fit the Google definition given earlier.  I am sure sociology academics would find all sorts of explanations for the concept of normal and how it assists society with self-regulation.  However, it seems that the actual definition of the word normal does not work in reality. Enacting the idea of normal is impossible and likely to lead to feelings of inferiority and rejection.  The hiding and disgrace that occurs when a person thinks them self abnormal does not need to happen in a world where all types of normal exist. In this type of world, there is no abnormal.  There is unusual and unlikely and not common, but no abnormal.

I have a chronic illness, struggle with that illness on and off, but I also want to be considered as normal. I am a normal person who has an uncommon illness. My illness does not make me abnormal.  It means I have a chronic illness.

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.