At the beginning of being ‘sick’, it is easy to be guided by your naivety or that sense of hope and determination to ‘battle through’. You tend to get carried away in your dignity and stubborness to remain the person who had always known… this was me five years ago.
At that time, I knew I felt dreadful, like I had never felt before, as if something almost supernatural, had come along and sucked all the life from within me.
However, my idea was to keep pushing – to really stretch what my body was capable of. There were days when I crawled around on my hands and knees; if I tried to stand up, my legs would give way from underneath me, not being able to take the strain, of what felt like, the weight of an elephant baring down on my limbs.
A friend at work would walk passed and find me there, stuck, frozen into a crumpled wreck. My limbs so stiff that I was not able to move on my own. Looking back, I honestly could not explain what I was trying to prove to myself. Other than I was bonkers for carrying on that way.
The medical professionals advised me that this was it. The end of the beginning of my career as a college tutor. I had been given the diagnosis of myalgic encephalomyelitis or ‘M.E’ for short. ‘They’ wanted me to give it all up there and then. I had only been working within the profession for 2 and a half years.
There was absolutely no way on this earth, that I was going to give up everything I had worked so hard for. One of my greatest concerns was how I would cope financially; I had only been with my partner a short time, I couldn’t share than sort of burden with him – certainly not so early on. The compromise was made that my hours at work were going to be amended. My five day week went to four, then to three. I had arranged an assessment at work and I sourced a mobility scooter and other aids to help me cope. I survived like this for a short time.
Before long, my pain and fatigue levels were through the roof. I was working and then sleeping from when I got in. I slept all through my days off and the entire weekends. My routine was not working, no matter how hard I ‘fought’, my health was declining. More diagnosis’ were being given and I felt worse then I ever had.
This year arrived, my attendance at work between January and April was awful. I struggled to manage my working hours and my hours were cut again after periods of sick.
By May, I was off sick again and I have not returned. Unfortunately, nor will I. My health this year has been appalling, as each month of rest has gone by, I’ve felt worse. More pain and mire fatigue. More discoveries have been made in relation to other conditions and further tests and investigations are underway.
It is so important that when you are advised to stop whilst you are ahead, then to listen. The effects of pushing myself to beyond my limitations have had severe, adverse and non reversible effects. I’m still in relapse and every time I feel a bit brighter, my body crashes again.
Due to this, I am housebound. The only choice that I currently have is to rest and do nothing. To try and regain some sort of life. At the moment, I feel a long, long way off and for the first time, I will admit it has finally got to me. I am finding my isolated existance lonely, boring and depressing.
The danger in my situation, is that I have a lot of time to think. To compare how I am doing. It especially doesn’t help when people suggest a ‘routine’. Unfortunately, for me, the best thing is to ‘ sit tight’ and ‘hang on in there’. Anything stressful or even the slightest bit energy-consuming, at the wrong moment, can be more damaging than it is worth.
My goals are still in existance, I wilI continue to hope – I still have ambitions and there are lots of aims that I have for myself. No matter what, each day I dig down deep to find that slice of hope that I had from the beginning. Without that hope, life is lonely. Plus it has got me this far. My life is limited. I will never know how long I have – not many people do. Each day, I will take as a step towards doing something fun, exciting and new. This is my chance to start again from the beginning, to use my flaws, not as limitations, but as tools to work with in order to provide support for others.
No matter what your situation, another human being just ‘gets it’. Don’t be scared to reach out or to go looking for answers. You never know where your journey will take you. I’m still discovering my path. Hopefully, you will walk some of my path with me.
Keep smiling. X