It all started for me in 1992, when I was 29. I got pneumonia and pleurisy, was in bed for a month and there began my nightmare. I developed skin rashes and inflammation in my ribs, spreading all over. I was diagnosed with Lupus. A year later I was suffering attacks of muscle pain, fevers and then suddenly one time, I couldn’t walk for a short time after. The attacks got worse and each time lasted longer. My body felt so heavy and eventually, over months, I couldn’t lift my head and I had feelings of falling through the bed.
I was taken to Birch Hill Hospital eventually and put on the heart ward as I was suffering with bad palpitations and terrible vertigo too by then. I remember being put into a chair and left away from the bed so that I couldn’t ring the bell, I was holding on to the chair as I felt like I was going to fall out of it, was in tears and the other patients were calling for the staff to come. And, more importantly, I had no idea what was happening to me and I thought I was going to die, I felt so bad.
They started me on steroids and I was able to sit up a little. I was then put on the stroke ward. I had to attend a meeting of doctors and occupational therapist. My mum wheeled me in and the doctor said, ‘why have you got your mum waiting on you, you should be walking yourself, you’re not a baby’. We went back to the ward in shock. I then had a visit from an occupational therapist who said she thought I had fibromyalgia. I then had to see the psychologist who asked me why I was there and said that it was ridiculous that I couldn’t walk myself and that I should be going to work, unless my fever was over 100 degrees.
I went home in a wheelchair a month later. I could cry now when I remember that time. I discharged myself.
With the help of anti-inflammatory medication and steroids I began to improve to a degree. But my breathing wasn’t good and I couldn’t lie flat to sleep. After I had been awake almost two weeks (if I fell asleep I stopped breathing), I was taken to North Manchester Hospital. I was so weak and scared. The lady doctor said that I probably just felt tired from being poorly before. Nothing wrong they said and sent me home.
Two weeks later I received a letter of apology because I actually had developed a left bundle branch block, the inflammation causing the signal to have to redirect.
I had one more very unpleasant hospital experience and discharged myself again after the occupational therapist advised it, telling me that they wouldn’t be able to help me. They had wanted to put me into a rehab unit there. They wouldn’t even let me use a chair to get me to the car, but then one nurse took pity on us and took me down.
I was then suffering with anxiety, that I might have to go to a hospital again one day and was terrified at the thought. My GP wrote to Dr Smith, the rheumatologist, saying that, unless they could help me, I wouldn’t be going back.
Over the years I would be a lot improved but then have a relapse. My GP would come and try other medications and I would improve again. I stayed ‘under the radar’, I couldn’t go back to a hospital.
I’ve since had an ablation for SVT, have a functional problem with my heart, and double pneumonia.
Then my body had a severe collapse three years ago, following a general deterioration in my mobility. I fell out of my wheelchair and have been more or less bed bound since. Just this last couple of months though, I’ve been able to sit up a little longer instead of being sunken into the bed day and night. So maybe it isn’t quite the end for me yet.
I wrote a poem about me and my life a few weeks back, here it is and I hope you like it.
If you could really see into me, and wholeheartedly so,
That the years I’ve had taken from me,
Can never come back you know.
At 56, I’ve lost half my life,
The sadness inside me stays near.
But I’ve lived and been present during good times and bad,
I cherish these times so dear.
Now lately, I’m grieving for the silliest things,
For example, my hair needs a blonde tinge.
But maybe I’m really grieving for my lost health,
It has fallen over that cliff and into the depths of hell.
There’s always hope though, people do say,
That I’ll stand up one day and walk away.
So, despite the worst of my ME and so much more,
I’ll keep breathing and keep dreaming of that day all the more.
And during this pandemic, just try to remember,
That your lives are little moments,
To be cherished and treasured.
‘Lost Years’ by Alison Love