When illness strikes, knowing that it will be a temporary part of your life, helps to keep things in perspective whilst waiting for things to change and eventually pass - but sometimes the future is a little uncertain. Knowing that you won’t always feel the way you do, brings along with it as surety, like a tiny light of reassurance that shines at the end of a long dark tunnel. You firmly believe that at some point, you’ll get out the other end and all will be well.
But what happens when there is no light at the end of your tunnel? Or, it’s so far away that you can only see a tiny pinprick in the distance? In fact, you realise with horror that your illness turns out to be something you will have to live with for the rest of your life. This situation is like a close friend, who has stepped on and crushed your dreams under the giant heel of their massive shoe. Grinding each dream into the dirt, until there is no remnant of what you remembered about the life you lived before illness struck. Any hope that you had is swallowed up in the pain, sleeplessness, and mental exhaustion the illness produces as you slowly watch your dreams, hopes and relationships disappear.
When my diagnosis of Chronic illness was first brought to light, I was unusually blasé about the whole thing. I was previously told that I had a hereditary condition called Polycystic Kidney Disease. In time, it would interfere with the correct functioning of my kidneys and may result in me having to be put on dialysis in later life. I was in my early thirties at the time, and the most disruption to my life during this time was having to take the time off work to go to the Outpatient section of the Renal Unit at a local hospital once a year. Nothing dramatically changed. I carried on with life pretty much as normal.
However, years later I was diagnosed with another Chronic disease that completely left me so incapacitated, I was bed-bound for over a year. I could only emerge from my bed for a period of 10 minutes at a time, after which, I felt so unwell that the only way to get some relief was to go back to bed and lie down again. These were difficult times that currently feel like a distant memory. However, the impact that this condition had on my mental health will stay with me for the rest of my life. You see, my life had suddenly physically changed in a way that I would have never imagined. Before the condition, I was a very active person who would get involved in whatever was happening around me. I would exercise about 4-5 times a week by walking and jogging around the path of a local park area. I was very involved at work in a primary school as well as fostering. Whoooo! My life was busy! And I liked it that way because that was the way it has always been. The busier I became, the more secure I felt. I think at the time, I felt I was making the most out of life, whilst making it just as good for those around me.
But when ME (Myalgic Encephalomyelitis), otherwise known as Chronic Fatigue Syndrome hit me whilst I was in mid stride of running through my happy but hectic life, I was winded. It not only knocked the stuffing clean out of my physical health goals, but it seemed to totally ignore all the previous work I had tirelessly put into remaining healthy. All of a sudden, my life was filled with experiencing symptoms that I had never encountered before. I now had panic attacks on a daily basis, experienced breathlessness if I stood upright for more than 10 minutes, and suffered from dizziness and extremely high blood pressure. These symptoms were in themselves quite frightening to experience, but additionally the change that the condition brought to my mental health was equally as scary.
Those of you that have had your life altered considerably due to the effects of any illness, know exactly what I’m talking about. The symptoms the disease brought with it changed me so much that in order to survive mentally, I had to reinvent the way I saw and lived life. A simple sentence, right? But an extremely complex and very soul piercing experience.
Before my illness, I could only describe my life as one that sought superhuman status. Whatever was going on around me, I wanted to be involved in it to some capacity. I worked full time in a primary school, I was also involved in fostering new-born babies whilst bringing up a family of my own. In addition, I volunteered at church and still managed to earn myself a Bachelor of Arts Degree. My problem-solving skills in all of these areas were used extensively and I can admit looking back, I was quite proud of being able to do all of these things independently. But that all changed when I became ill with my body breaking down and my thinking becoming extremely confused and foggy.
Now, I was no longer the one who fixed the problems that came up in daily life. I was in fact someone who needed to be helped. The old independent me couldn’t logically fathom why I was the one who was asking family members for help to do basic tasks. In fact, at the beginning of my illness I had great difficulty allowing others to help me. So on the days I wasn’t prepared to listen or accept help, I actually ended up making my condition worse. I just couldn’t come to terms with my new way of life, and with this realisation came along with it; several months of depression, anxiety and chronic stress. I just didn’t want to re-evaluate my life. I was happy with the way things were. Why did they have to change? This was a question I asked myself daily, mostly in the middle of the night when I was unable to sleep.
I’d lost my sense of identity, as I realised that the things’ I did gave me purpose and direction. I felt cheated, as I had committed myself to maintaining my physical health from a very early age. I had always exercised and practised healthy eating. An attempt to avoid the sickness that seemed to follow members of my family around like a well-trained dog. In my darkest moments, thoughts of death became a welcome relief from the overwhelming feelings of depression, confusion, and uselessness I was experiencing. Looking back at that time, I realise I was grieving for the old me. The old me who believed that nothing was too much trouble. The me that made myself available day or night to those who needed me. The active, happy, laughing me. The person who I had known, and identified as me all my life, was gone.
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