The Black Dog &ME

Black dog

The black dog is of course a metaphor that was used by Winston Churchill to describe his depression. Although it is believed this expression is much older than that.

I don’t like standing near the edge of a platform when an express train is passing through. I like to stand right back and if possible get a pillar between me and the train. I don’t like to stand by the side of a ship and look down into the water. A second’s action would end everything. A few drops of desperation.” – Winston Churchill (1874-1965)

I have carried out this small piece of research due to a blunder I recently made. When thinking about the link between depression and Chronic illness I decided to write a blog and was going to call it The Black Cat and Me….yes indeed I have many a moment like that. I describe it as part of my ‘Brain fog’ a term many people with CI will understand. My partner says it is called a ‘Malapropism’ I’m not sure about that but he is the clever one so we shall leave that there (quickly google the term and it actually means when you use a word in place of a word that sounds the same) So there….

Anyway the point of this blog is to briefly describe my life with ME which in itself can cause depression, anxiety and the likes. It’s not a call for sympathy it is intended to reach out and relate to those who may feel alone in their illness.

At 22 with two small children I had a severe bout of tonsillitis that put me to bed for 2 weeks. I never returned to ‘normal’ again.

I found myself without energy and aching joints for no good reason. Yes I was busy with life but so was everyone else and they didn’t seem to struggle like me. Did I have cancer?  Am I dying? would be the questions in my mind every day.

Many visits to the doctors resulted in unhelpful comments such as ” You are going to be tired, you have 2 children” “back ache and pelvic pain can come from picking your children up too much” “You need to rest and take paracetamol”. This of course made me feel worse.

Why was everyone else coping with life and not me? Why am I tired as soon as I wake up? Why does my body ache all the time? I got up every day and did everything and more to prove I could be everything to everyone, on a huge supply of painkillers I battled on.

Struggling to sleep at night I felt like a zombie but I still managed to host parties, sleepovers, fun nights out, accommodate pets in all shapes and sizes and be the life and soul of the party. It is obvious now that of course I was overcompensating and trying not to show my weakness.

Still I knew something was wrong and when I was alone and it was quiet the black dog came a barking. I had terrible thoughts of inadequacies, anxiety and fear of death. I felt alone and different and unsure how I would ever make sense of how I was feeling.

By the age of 26 and years of tests the experts concluded I had ME and Fibromyalgia, still being researched to this day and still no cure. So what do I do now? not much really apart from go away and find a way to manage.

Getting a diagnosis was a bitter sweet pill to swallow, I know what  I have now but still not much of an idea what to do.

It took me a long time to accept the label for my condition and thought it was some kind of made up term for ‘we have no idea what’s wrong with you’ or ‘you’re slightly mad’ so we call it this. For this reason I never really told that many people, it was just too difficult and tiring to try and explain  something that doctors couldn’t really explain. The people I did tell found it difficult to believe as I was working, exercising, and looked pretty normal on the outside. People often expect you to be laid up in your bed and to have lost the will to live to actually believe you are sick. Of course I had days like that but no-one ever saw them.

I chose a career that allowed me to work for myself so bad days could be disguised a ‘working from home’ don’t get me wrong I did work but sometimes from my bed with regular naps.

As the years have passed I have learned how to live beside my illness and have never let it define me. I know my limitations and some days I push them other days  I surrender to them. My illness hasn’t changed but my thinking has and I no longer resent it. I have had to fight hard not to give into it and it has now just become part of who I am. Just as I have to wear sun cream on a hot day to avoid getting burnt, fastening my seat belt and brush my teeth. I have to manage my illness, it doesn’t manage me. It has brought with it a deep understanding and empathy of people, I believe success comes in all shapes and sizes and without a struggle would it really feel like success? I’m not sure because it is all that I know.

I’m no expert on ME but I am an expert on me, the person.

I have learnt 10 important things from my illness and I would like to share them with you:

  1. Live side by side in the moment with your illness and don’t let it define you
  2. Be honest with yourself and those that you love
  3. Be kind to yourself and others of course
  4. Know your limitations but remember they change, so do test them
  5.  Don’t listen to negative people, eliminate them from your life where possible
  6.  Eat well and live healthy most of the time. Do allow yourself a bit of what you fancy from time to time
  7. Take naps whenever you can
  1. Exercise- Probably my biggest friend in all this- even when I’m on my knees I get my body moving- it helps calm my mind
  2. Don’t expect others to understand, its difficult, especially if you look well. You are the only one who really needs to understand you. If you do however mange to find someone who understands then that’s a bonus
  3. Embrace the simple things- Love, family, friends and laughter. After all what else is there that really matters anyway?

I don’t like uneven numbers but I have to talk about number 11. #writing. This helps me even if I write something that is dark, once it is on the paper and out of my head I feel better, lighter and free for a while.

I wrote this following the death of my mother, yes it’s dark and yes it’s sad. It’s how I felt in that moment and it is just that ‘a moment’. I do have very happy moments too and I must learn to write about them:

Saturday 6th August – 11:30 pm

Do you want me to ask me how I feel? (I ask you then answer)

No you don’t because it’s too difficult for you to hear and you wouldn’t know how to fix it, so you don’t bother asking.

Followed by me trying to explain anyway and getting my words, thoughts and feelings mixed up because that is what I’m feeling ‘mixed up’

So instead I try to explain it to myself whilst looking distant and disappointed with the evening you arranged for me.

Trying to get up every day with positive thoughts and overcoming the darkness has in itself become my full time job.

Painting my face, brushing my hair and dressing in clothes is now classed as an achievement.

Answering “Hello” takes every effort but mainly I just reject the call until it suits me.

Then comes the guilt of not being what I need to be to all those I love. So I fake it in their company and that makes me feel better (temporarily)

The insane thoughts of how I would be best on my own are so strong I start to push people away and become distant.

The black dog is the only friend I can bare to be with as he feeds on my self indulgent pity and most of all enjoys the company of my ridiculously, critical self.

I go to bed tired and wake up exhausted. I put my mask on and live side by side with The black dog, what else can I do?

Sunday 7th August 10 am

Read what I wrote last night. Well yes I have moments like that but I have great moments too. I feel better for writing it. I get dressed for the day ahead.

Just a last thought, as I brush my teeth. I must ask my children about their experience of growing up with a mother who has a chronic illness. Maybe that could be my next blog?

For all of those who so often feel alone, you are not. Live in the moment even if the moment is bad, it will pass and there will be better moments ahead.

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11 thoughts on “The Black Dog &ME

  1. That is the most honest and beautiful thing I’ve read in so long! As a young mother with health problems, minor compared to yours, but also who struggles with depression and anxiety I was crying reading it towards the end. I have the best support network in my amazing friends and family but as you say it’s such a struggle some days and then comes the guilt. Amazing, I can’t wait to read more!

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  2. Wow. So so true. I haven’t got ME but have a daughter that has and totally understand the ups, downs, despair and pain with this illness. You go girly. inspiration to those that have it. My daughter got rid of all the negative friends. One saying “you’re so skinny it’s not fair” Yes she was skinny because she couldn’t eat!!! You should do talks with people who have been diagnosed and don’t know where to turn or how to accept it. Xxx

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  3. This is beautiful! I personally gravitate towards the darker honest stuff so I really love what you wrote after your mom passed. And I love the idea of living side by side with our illnesses. I too have good days and bad days but I’m trying to be more honest about the bad days instead of just covering them up with positive thinking. That’s really where the idea for my blog started. Looking forward to reading what comes next!

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