Why Mononucleosis / Glandular Fever Might Be The Cause of All My Problems
When I was sixteen, I got glandular fever. Some countries call this mononucleosis. Until then, I had been athletic, active, engaged and energetic about life. I was delirious for two weeks with a fever of 104°f (40°c). I was swetting so much that the sheets on my bed had to be changed twice a day. For months afterwards my body felt weak, diminished, deflated. No matter what I tried, I just didn’t seem to be able to recover the stamina and concentration levels I had once had. Not only that, I started to get migraines. Some were so bad that they lasted for days. They always made me violently sick.
As life moved on, I got used to the new normal. I adapted as best as I could to my new energy levels. I rolled with the punches as I found myself catching pretty much everything that was going around. This included numerous bouts of sickness, including bronchitis, swine flu, and shingles. Then, in early 2006 the bronchitis became pneumonia.
I was living in the US at the time and so dragged myself to the out of hours doctor who prescribed Levofloxacin. I did not know this at the time but I am highly allergic to it. It made me very ill indeed and I was rushed to hospital. I narrowly escaped with my life.
But once again, I just didn’t seem to recover from what turned out to be viral pneumonia. I was still sick a couple of months later. My primary care physician did some blood tests and then informed me that I had mono. Not again, surely? It turns out, yes, you can get glandular fever (mono) more than once. The Epstein Barr virus lies dormant in your bloodstream and the trauma my body had been through re-triggered it. So there I was battling pneumonia and mono at the same time.
The lasting effects were even greater than before. It is difficult to tell which symptoms have been caused by the viruses and which by the allergic reaction to the medication, but here is a list of what it is like during a flare up.
Stamina – greatly reduced, like a battery that never fully charges overnight and seems to drain more quickly, sometimes in huge jumps.
Sensory Overload – an inability to take in multiple pieces of information at once when in the past this was something I could do with ease. Light and sound sensitivity.
Concentration – Varying levels of compromised concentration.
Other Physical symptoms: Frequent feelings of swollen glands and sore throat and general achiness.
Weakness: Noticably diminished physical strength during flare ups.
Migraines and headaches: Sometimes resulting in nausia.
Muscle, joint and nerve pain: This is above and beyond any other conditions such as arthririts.
Immune System: Noticably compromised with a tendancy to catch things that are going around.
Digestive Problems: Such as Nausia, constipation and IBS
Sleep: Poor quality sleep, tossing and turning all night and find it hard to reach deep sleep.
I was eventually diagnosed with ME/CFS. I can tell you what didn’t work – graded exercise therapy or pacing. My body refused to cooperate on a neat gradual curve. It was much more boom and bust. The physio I received didn’t help and nor did the counselling. I was left feeling frustrated and guilty that my body would not comform to their expectations. My mind was willing but my flesh was weak. I would have flare ups and I would have days that were more bearable. The only way I could possibly cope with that was to find acceptance and work with what I had.
Then, in March 2020 I almost certainly had COVID. I had a fever, cough and breathlessness for twelve days. It was unfortunately in the time when there were not enough tests to take them at home. Only those being hospitalized were being tested. In the aftermath of this I developed a rash that would come on suddenly and affected my ears, scalp, hands, elbows and feet.
Then in April 2022 I definitely had COVID, with a positive COVID test. Symptoms started two days before the test was positive. It began with a sore throat, a blinding headache and fever, then the cough came on and with it the shortness of breath. I also lost my sense of smell and taste. I was sick for two weeks, but even now, a month later, I am still struggling. The rash is back, my stamina is through the floor, I get breathless with minimum exertion and I am basically back in the middle of another ME/CFS flare-up. Long COVID is basically the same as ME/CFS in my experience.
So this leads me back to the purpose of my writing this article – Epstein Barr. On numerous occasions over the years I have had blood tests and every time my lymphocytes have come back high, indicating that I am fighting an infection. Could it be that Epstein Barr is the source of so many problems that have followed? Could it be that ME/CFS and Long Covid are connected to the presence of the Epstein Barr virus in a person’s body? Has anyone asked this question before? If so, what can be done about it?
It is my hope that this article reaches patients and medical professionals alike and that it starts a conversation or finds its way into the midst of an existing conversation of which it can become a part. I am hungry for answers. What is the relationship between Epstein Barr, ME/CFS and Long COVID? What can you tell me?
Gretchin Williams clutched the Golden Globe in her hand as she looked out at the sea of familiar faces. The applause died down and she placed the statue on the lectern in front of her and began unfolding a piece of paper, her hands shaking as she did so. Squinting at the type, she cursed the fact that she had left her glasses on the bedside table. Taking a deep breath, she closed her eyes and screwed up the paper.
“It is never too late,” she began. She looked directly at the camera. “If you are sitting there at home right now thinkinging your life is over, it’s not. A year ago I was sat where you are right now, abandoned by the world, nothing to look forward to, all hope gone. But you are not alone. I see you. I am you. And tonight I am handing the batton on to you. It’s your time. You’ve got this. I believe in you!
Whatever that tiny glimmer of an idea is that is percolating in the darkest recesses of your mind right now, let it out, and let is shine! Give it wings. Let it fly! Just do the next right thing, keep it in the day and your tomorrow will be like mine – beyond your wildest dreams!
Thank you all. God bless you. Goodnight.”
The room errupted in thunderous applause as everyone stood and cheered. Job done, Gretchin turned and left the stage.
In a pokey living room in Hertfordshire, England, Sophie grabbed a tissue, wiped her eyes and blew her nose then padded through to the dining room where a small, rickety desk stood in the corner. She picked up a pen and began to write…
I was in a conversation with a group of people earlier today in which we discussed the concept of reasonable limits. We asked ourselves what it might look like for us to set reasonable limits in various areas of our lives. I smiled ruefully when this topic came up because I know that in my world reasonable limits simply do not exist. I am utterly incapable of setting reasonable limits on anything. For example, I cannot set reasonable limits on how much I volunteer. Left to my own devices, my hand shoots in the air as soon as someone else utters the words, “would anyone be willing,” often before I have even heard what I am being asked to do. Thankfully, so far, no one has asked me to jump out of a plane or work in the reptile house at London Zoo, but regardless of where my compulsive volunteering takes me, one thing it inevitably leads to is overload.
This is true in terms of my food intake, the hours I work, the amount I spend, and the number of people I try to stay in touch with. Piece by piece I overload my literal and proverbial plate to the point where it is impossible for me to hold it together. My bank balance suffers, my body starts to break down, my mind starts to crack up and my spirit starts to isolate. It is a collective recipe of toxicity and drama that can lead to ruin.
So, what’s the solution to all of this? I can tell you what it’s not. I cannot just pull myself together and get on with it. I am completely powerless over any attempts to moderate my life. That doesn’t mean I have no will-power. I have a very strong will indeed. It’s just that it doesn’t work when battling my compulsivity. I have found that the only way to find any kind of balance in my life is to rely entirely on the God of my understanding and have God set the reasonable limits in my life. It’s not for me to decide what I put on my plate, which volunteer positions I put myself forward for, how I spend my time and my money. Rather, I need to discern what God knows to be good for me. Sometimes, this means I need to cut things out completely. For example, I have largely cut out sugar from life. Sometimes it means I need to build in a pause button that forces me to wait before doing something. I now never say yes to volunteering for something immediately. I always pray it through with God first.
How do I hear God? Through readings, prayer, meditation and conversations with friends. How do I know it is God’s voice I am hearing? If it increases the fruit of God’s Spirit in my life – love, joy, peace, patience, kindness, goodness, gentleness, faithfulness and self-control then it is likely to be from God. If it robs me of any of those things, then it is quite possibly not from God and not good for me.
Without God, there are no reasonable limits in my life. With God I can find moderation, abstinence, clarity and hope and above all peace, knowing that even though I am completely powerless, his power is made perfect in my weakness.
I’ve recently been reading James Scott Bell’s excellent book, “Plot and Structure.” Each chapter includes some exercises at the end. Having completed one, I thought I would share the results with you all here, in the hope that it might inspire your creative writing efforts today.
When readers read my novels, I want them to feel elated and inspired at the end. That’s because, to me, novels are an opportunity to be transformed by immersing ourselves in another world where we can walk a mile in another person’s shoes, experience the drama and danger, the ups and the downs of that person’s experiences without ever leaving the confines of our own beds.
In a novel, we get to play, to experiment and to imagine what we would do if we ever found ourselves in a similar situation, so that when we come to face life’s dramas we are better equipped to do so than we would have been if we were relying solely on our own experiences. Novels broaden our horizons, they help us to imagine the unimaginable and ultimately they remind us of the universality of the human condition and that we are never fully alone.
Novels help us connect with the human race, join hands with the myriad of other intrepid explorers and travel through distant lands that are beyond our wildest dreams. When we return from the novel, it is like coming home from a long trip, back to the comfortable and familiar, yet knowing that we have been indelibly changed by the experience and that life will somehow never be the same again.
I always used to say, “don’t come to me with a problem unless you are prepared to be a part of the solution.” It doesn’t mean that you need to have all the answers, it just means you need to be willing to contribute. It’s easy to point out the problems and deficiencies of this world, it’s much more difficult to be prepared to get down in the mud and mire and help one another dig ourselves out of a hole.
To be willing to be a part of the solution, we must first face that fact that we are part of the problem. How easy it is to point the finger of blame at everyone besides ourselves with a cry of “injustice” and how “life isn’t fair.” I for one am afraid to concede my foibles and failings because I am terrified that if I admit them then people will discover that I am the worst person in the world and will want to help me to focus on said foibles and failings. If I give up that ground, how can I possibly ever believe that they will give up theirs?
Yet the reality is that our personal shortcomings have nothing to do with those of others. What is on our side of the street is firmly intrenched there. Whether or not other people decide to look in the mirror is actually irrelevant. We can only keep our side clean. We can only live one life well. If we spend too much time taking up residence in other people’s heads, or if we invite them into our own heads to take up space, then we are losing perspective on our own lives, we are prone to assumptions, false expectations and a mountain of resentments.
But looking in the mirror isn’t about self flagellation and hatred. It isn’t about low self esteem and self neglect or self abuse, it is actually about kindness, love and humility. It’s about knowing who we are, whose we are, and where we stand in relation to the rest of humanity, in the whole of creation, and before our creator. We are not bad people. But we do sometimes do bad things. The good news is that we can do something about it. With the help of our Creator, we can put things right, we can tidy up our side of the street, we can weed the gardens of our souls, we can finally go to bed with a clear conscience and we can know peace.
I don’t know about you, but my life is a bit of a mess right now. Paperwork has been neglected, I have hardly unpacked from the last trip I went on, my mind is scrambled, and my body feels like it has been pummelled into a million pieces. I want to be part of the solution. One step at a time, one day at a time. What about you?
Hasn’t it been a horrible year? That’s certainly how I felt about it when I recently started to reflect on the last twelve months. I lost friends to the pandemic, I nearly lost my mum after a fall, I’ve been stuck at home for months, and I have nothing to look forward to. I feel like I’ve had a lot of failures in the last year but nothing much to write home about.
Wait a minute, surely there has to have been something positive to have come out of 2020???
Yup. I wrote a book. Last May I had a flash of inspiration to write Writing for Wellness: Surviving Lockdown one word at a Time. It is an anecdotal story of the Writing for Wellness group I have lead every week for the past year. How easily my mind blocks out the light and focuses on the dark. But writing and publishing a book is a massive achievement that countless people put on their bucket lists. It’s definitely been on mine. Tick!
That brings me to another positive. I led a Writing for Wellness group throughout lockdown. Writing for Wellness groups after a safe space in which you can explore your creativity, and get things out of your head and on to the page. The members have all shared with me that this group kept them sane during lockdown and that they wouldn’t have survived without it. A definite tick goes next to that achievement. Tick!
I produced a podcast throughout lockdown. Letters in Lockdown has evolved during the different lockdowns. It started as a Staycastion Podcast in the first lockdown in which I was determined to focus on the positive aspects of staying at home. As we moved on throughout the year I recorded the good days and the bad, the challenges and the successes, the thoughts and reflections I went through in the past year. A humble contribution to the voices of lockdown. That’s something I can be proud of.
I started to read more. I’d got out of the habit of doing this before lockdown. The digital age with its 24/7 temptations meant that I would often turn to the latest show to binge-watch rather than pick up a book. The slower pace of lockdown life has made me excited to pick up a book and lose myself in another world for hours. I’ve recently been reading The Woman in White by Wilkie Collins. Talk about gripping! So yes, a big fat tick again for reading more.
I became more in tune with nature. Every morning I go out to my little studio in my garden to work I am greeted by the dawn chorus. I’ve listened to the proud blackbird singing over his family’s nest, watched the robin take a bath in the sundial on our lawn, and rescued an exhausted bee with some sugar water. I’ve helped plant out a new flower bed, nurtured a window-full of orchids and gone for some amazing walks. This renewed connection to something so much bigger than myself is a definite positive. Yes!
I wrote more letters. I love writing letters but I rarely gave myself time before lockdown. Hand-letter-writing is one of the exercises we do in Writing for Wellness. What a joy it has been to receive a hand-written missive through the post during those dark days. An absolute positive and one I am determined to continue beyond the pandemic.
I learned to value the people right in front of me. Oh how easy it is to take people for granted! Yet when faced with a situation where the company of others was in short supply I learned how value human connection can be. I always remember an interview with Mother Theresa in which, when surrounded by thousands of people in the slums of Calcutta she was asked how she coped. She smiled and said, “the person in front of me is the most important person in the world to me in that moment.” What a gift! I feel like I’ve caught an inkling of that during lockdown and I am really grateful for it. A definite positive!
What about you? What positive things can you look back on in 2020?
This hasn’t been the easiest of blog posts to write. I would have been much more comfortable focusing on what I haven’t done or on what I did in the years prior to lockdown. But it’s only when we find the subtle nuances in the midst of the darkest of nights that we find our way to turn on the light. It’s only when we accentuate the positive that we can allow ourselves to say goodbye to the year that has gone and look forward to what the year ahead will bring us.
I’ll leave you with the song that has been playing in the background as I’ve written this post. Accentuate the Positive by the Puppini Sisters. Enjoy!
We’re hearing from experts in the field of psychology and mental health who are warning us of an epidemic that is on the horizon. This isn’t the pandemic. This isn’t an impending third, fourth or even fifth wave. This is a global mental health crisis on a level that we have never seen before, and almost everyone is feeling it.
As someone who is no stranger to mental health issues, I entered the first lockdown in March of last year in a surprisingly calm state of mind. I embraced the quiet and the solitude. I sought to find the beauty all around me, to treasure every moment, and to take advantage of the world standing still. My head became so clear that I was able to write a book in just under six weeks, something which up until that point I had struggled to accomplish in a little over a decade of trying.
Of course, it helped that the weather was absolutely gorgeous and the whole of nature seemed to come out to play with a greater exuberance than I had seen in a very long time. Or was it just that my world was previously too noisy and too cluttered for me to notice? Anyway, I had my encounter with a Queen Bee, I went for walks in the stunning countryside that surrounds my home, I sat in the shade of my garden studio while the waterfall bubbled into the pond and the bees buzzed from bloom to bloom and felt quite content.
But then came the somewhat messy and hesitant emergence from those first three months. I’d lost three friends in the beginning of the pandemic and countless others that I knew had lost family members. I didn’t realise how sheltered I had become, and how for many others life had just carried on. From a social perspective I had been left behind. So much so, that on my first day out of my cocoon I had a massive panic attack and wondered if I would ever step out in confidence again.
But within the new limits of social distancing, I soon learned what I could cope with and what I could not. For example, I wasn’t ready to go swimming again, but providing the restaurant was spacious enough, I was happy to have dinner with a friend. I was even fortunate enough to get to go for a short holiday in September. The weather was amazing and I even took a trip to Highclere Castle for all your Downton Abbey fans.
But then came the headlines, “Christmas cancelled,” and with them the hopes and plans of millions. That was a low blow for the nation. Some reacted in despair, others in anger, while some, like me, girded our loins and kept calm while we carried on, preparing to take one for the team in order to provide for the common good.
January brought with it dark days and cold nights. For myself personally, it also brought me close to losing my mum after a bad fall from a ladder and catching COVID in hospital. Where was the honey bee now, where the bubbling waterfall, where the clear headed writing? This sucks. Sod keeping calm and carrying on, sod showing the British resilience akin to the forbearance of those caught in the Blitz, this is really really hard.
As I emerge from yet another lockdown, as I go out into the world, I will confess to having a small amount more confidence than I did last summer. I’ve had one dose of the vaccine and should have the second in the next few weeks. There is that thin veil of protection, that increase in probability that if I caught COVID now I might yet live.
You would have thought that would make this emergence thing easy. But in reality it is still really hard. Everything I once knew to be true has shifted. I can’t remember the last time I had my five a day, and my body is really suffering because of it. I don’t mean fruit and veg. I mean hugs. Will the word tactile cease to exist in this new world? Where will affection find its way? Am I the only one who is feeling more isolated than I ever have before now that we are coming out of lockdown? Am I the only one who is struggling, whose anxiety is through the roof?
And in the midst of so much uncertainty, in the midst of so much grief, it’s easy to look at the horizon and feel like we are all at sea. It’s easy to feel that there is nothing out there which is permanent, reliable, and built on rock. The shifting sands of our current existence lead us to being anxious about everthing, fearful about much, and struggling to look forward.
Yet that’s all I have left. Hope. To dream of a time when we will be able to hug one another in greeting again. To dream of a time when the smile on the face of an old man as he takes his wife round the supermarket will touch my soul and cause it to sing, when we’ll be able to plan freely and look forward, and dream up a world in which we can live that is better, kinder, freer, and more joyful than the one we face now.
In the mean time, as trite as it is to think that misery loves company, we do share in a common struggle. So long as we keep it real, listen to one another, and be patient and kind, we will remember that we’re all struggling, that this is hard for everybody, and it’s in our pain that we receive our five a day and we find our common ground and know that we may be isolated, but we most definitely are not alone.