I open my eyes and for a moment I am pain-free. But then I try to move and pain caused by fibromyalgia courses through my body.
I am stiff all over. Even the muscles in my fingers feel stiff and are painful to move. I slowly move out of bed. When the sole of my foot touches the floor, it hurts. I continue on my journey out of bed and start moving and trying to straighten out. A strong coffee and medication help to start the day.
I start getting ready for work. On good days, I can dress and go to work without too much pain. On bad days, I cannot dress due to the pain and I stay home and work from my dining table. On very bad days, I cannot get out of bed. My whole body is on fire with pain. I am unstable on my feet so my grown children have to help me to the toilet and, later in the day, to my recliner in my living room for a change of scenery.
But this was a good day. So, I went to work. I am the head of a primary school.
When I arrive, we start preparing to receive educators, children who attend breakfast club, children who use transport and later children who come to school with their caregivers. We are armoured with sanitiser and thermometers.
In between children, I have a chair in the reception area so that I can sit. My colleagues are fantastic and constantly offer to take over, but I feel that I have to do my part. I also need to be on the spot if we have any educators who cannot come to school or any other emergency that crops up. The telephone starts ringing too.
During the COVID-19 era, we do online assembly, so I do it sitting down at my desk. When things were “normal” we would have an assembly in the hall. I would be standing up, leading assembly, and trying not to show that I am in pain.
A school cannot be led from behind a desk. I am constantly on the go.
I am called to classrooms to see to the needs of educators and children. I also like to do a daily walkabout to get a feel of the school on the day. I go out to the yard several times to speak to staff and children during break.
Sometimes I need my cane to be able to move about as it gives me some support. There is only one staircase to go to the first floor. I am lucky that my school has only two floors. When I need to go up, I tell anyone around to go up before me as I go up very slowly. Going up staircases is extremely painful, but I have to go up to the first floor to give my support to the classrooms upstairs.
Again, my colleagues are extremely helpful and will do errands for me, to avoid having to go upstairs, but I do need to go upstairs at least once a day, many times, more. Going down the stairs is another problem. Fibromyalgia has affected my stability, so going downstairs I feel like I am falling forward. I have to hold on fast to the bannisters and go down one step at a time.
Another problem I face is fybrofog!
I cannot remember names, I cannot remember what I have left the office for or who I wanted to speak to. I make a phone call and cannot remember who I phoned by the time I connect. This is extremely frustrating but we have learnt to laugh about it.
The day rolls on and dismissal comes along. I stay in the corridor to say good afternoon to all educators and children and make sure that all children stay in their bubbles including children who use transport. I spend a good time standing up at that time, which is not good for my pain. When all children leave, I bid farewell to staff still at school and start my drive home.
Driving after a day’s work is painful. By now all my body from the neck down is in pain. My arms, my hands, my fingers, my back, my chest, my abdominal muscles, my hips, my legs, my feet and my toes.
Pressing the brake pedal is painful, as is changing gears and turning my head to park (I know, I’m supposed to only look through mirrors… but who does that?) I am also mentally exhausted. Fighting pain continuously IS mentally exhausting. This mental exhaustion does not allow me to listen to the radio on my way back home from work as I need silence.
If I park far from my home (parking is a problem where I live) I dread the walk especially if it is uphill. By now I’m a mess. I have to carry my laptop and various bags with me. Many times, I use the cane and walk slowly home. Sometimes I call my son to help me home or to carry my things.
I get home and flop on my recliner. I need at least an hour to be able to move again and to mentally be able to focus again. When I do I get up, I do the normal chores such as cooking and putting loads in the washing machine. I am very blessed to have a friend who comes to clean as I just cannot clean (when I tried, I end up in bed with pain).
Things that people take for granted are hurdles for me.
Shopping is the biggest one. Many times, I take my son with me to help me to push the trolley and carry. Yes, pushing the trolley and walking around the supermarket is painful.
If he can’t, I have to ask passerby to help me load and unload the shopping into and out of the car and up to my flat. Walking to the bank, the pharmacy, the post office and the stationery are painful, but it needs to be done. The cane and the blue badge are indispensable.
On good days, I can go for a walk and bake which are my favourite pastimes. I know that I will suffer pain afterwards but I still do it, for my sanity.
The night comes. In bed, the pain intensifies. Many times, it keeps me awake but with medication, it starts giving way to sleep. There are nights when nothing would calm the pain and the next day I am dizzy with tiredness.
Despite all these challenges, I will not let fibromyalgia take over my life. It is a fine balancing act. I do as much as I can when the pain, the instability, the mental exhaustion and the fybrofog allow it. I give in when I can’t and accept the situation.
I write to raise awareness of the plight of fibromyalgia sufferers. Not all conditions are visible, but that doesn’t mean they can’t be as debilitating. Nonetheless, we can’t give up.
If you or your loved ones suffer from fibromyalgia look up ‘Positive Fibromyalgia Support Group Malta ’ on Facebook, like our page and join the group.
I believe that keeping a positive outlook helps us deal with the condition and every little win is to be celebrated.
Josette Scerri is a headmistress of a primary school. She is one of the dozens of sufferers of fibromyalgia – a chronic and lifelong condition. It involves widespread pain in one’s muscles and bones, accompanied by fatigue, sleep, memory and mood issues.
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