My Name is Louise…

My name is Louise Evelyn Parry. I’m 27 years old, I’ve been qualified as a nurse for five years and I have a career that I’m incredibly proud of. I’ve also been married for four years and have a wonderful husband who I love and beautiful little boy who was a year old in March.

I have also been ill for most of my adult life.

The illness isn’t life threatening and with effective medication and appropriate lifestyle changes it can be successfully managed but it cannot be cured. As with many conditions there is no magic formula that halts this illness in its tracks and then removes it from your life forever.

The best you can hope for is to minimise its impact and to live with it as best you can.

It is difficult this illness, affecting not just the person afflicted but everyone around them. It strikes at random; young and old, rich and poor, healthy and unhealthy, leaving people confused and bereft and asking ‘But why me?’

I clearly remember the day I received an official diagnosis of my condition and the way I felt as though I’d been punched in the stomach when the doctor confirmed my fears. I’d had my suspicions that something wasn’t right but it was still a huge shock to have it starkly set out in black and white.

I left the surgery with tears streaming down my face and a prescription in my hand, the first of many. I’m now on my seventh new medication while the specialist doctors and nurses struggle to find something that has a positive, lasting effect. Each time I trial a new medication I experience a whole new set of side effects; dry mouth, blurred vision, nausea and vomiting, diminished libido, night sweats, urine retention, altered taste and smell, the list goes on.

I will have to take medication for the rest of my life to give me the best chance of getting my symptoms under control and then keeping things that way. The thought that I will have to put chemicals in my body every day until the day that I die is an unnerving thought to say the least but I’ve made a promise to take them and I intend to keep it.

Initially my friends and family were positive and supportive, bolstering me with their belief that I was strong and capable of fighting; that I just needed to remain positive and I would find a way through this. To begin with I believed them; I celebrated the days when I found life that little bit easier and tried not to be consumed by the days when everything seemed dark and difficult.

But as the weeks and months went by the dark days became darker and lasted longer and I learned to hate the days of sunshine because I knew that they would go away as if they had never been. When it became apparent that I was showing no signs of improvement the majority of the support I’d been relying on waned and one by one their voices mostly felt silent.

I was no longer a fighter; I’d proven that in my failure to recover and instead my illness became my badge of defeat. Instead of asking how I was people began to skip that step, as though refusing to acknowledge that I was ill actually meant that it wasn’t happening.

This was made easier by the fact that usually my illness does not show any physical symptoms. I don’t use a wheelchair, I don’t wear a wig and I’m not entitled to a blue badge for my car or to use disabled parking spaces.

That isn’t to say that my illness does not affect my physically. I have attacks of shaking, nausea and vomiting than can last for several minutes at a time. I frequently have headaches, pain in my chest and back and at night I find it very difficult to get comfortable due to my restless limbs which are a side effect of my current medication.

There are days when I will seem pale and tired or I’m clumsy and uncoordinated; dropping things, tripping over and generally struggling with physical tasks where I didn’t before. If you’re particularly observant you may notice wound dressings on my arms but I try to keep them hidden as I find they prompt unwanted questions.

Slowly but surely I began to shut myself away from people and from the outside world with it’s pity and it’s judgments.

This illness has taken so many things from me.

I’ve forgotten what it’s like to be able to get up in the morning and want to face the day.

What it’s like to not be in pain.

What it’s like to not have to try and hide things from others for fear of their reaction.

In the last couple of weeks I’ve started to feel more and more desperate as I find it harder to hide from the fact that I am unlikely to get better. I’m tired of trying to manage and mask my symptoms whilst knowing that there is very little chance of a cure. For the last ten years I have fought as hard as I can; attending appointments, seeing specialists, taking my medication and battling onward so that I didn’t let my family and friends down by being weak and giving up.

There is not a single aspect of my life that has remained untouched by, or escaped unscathed from this illness.

My marriage, my ability to be a mother, my career, my ability to form relationships and to make the ones that I do have last; these are all things that have been affected by this debilitating illness.

There is no way out, nowhere to hide, nothing that brings more than a temporary respite before I am flung back into reality where nothing has improved and things have usually only changed for the worse.

It has now reached the point where I don’t want to fight anymore, selfish as that is. I’m not sure when I stopped trying for myself but it has become plain to me that the only thing stopping me from giving in is a promise to the Northern One that I’m finding harder and harder to keep.

My name is Louise.

I have depression.

4 thoughts on “My Name is Louise…

  1. purpleslobinrecovery says:

    I’m in the pits with you. I’ve been depressed since 1989.
    Lately I’ve started eating Gluten free, and sugar free. It is helping stabilize my moods.
    Of course, I am still on my meds!!
    Thank you fro blogging so openly about this once stigmatized subject.


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