Coping with glandular fever - what helped me recover

Hi everyone,

I've been part of the glandular fever club for about 4 months, I've recently started to feel much better so now I have more energy I wanted to post my story and about what has helped me over this time in case it helps anyone else. Thanks to others who have posted and helped reassure me my experience was normal!

My story:

I had two bad fever episodes about two weeks apart, and I just never seemed to recover from the second one. I felt AWFUL. I had a low grade fever for 6 weeks and just continued to slow down. I was still going into work, not that I was much use (!) which obviously didn't help. I then had a positive EBV test and was signed off work and basically slept for 2 weeks. Any effort was exhausting and resulted in splitting headaches, constant brain fog, zero energy, no appetite. I had the zig-zag pattern of the odd good day where I could read or watch TV, then bad days where I couldn't do much at all. The good days gave me hope it would end, and the bad days were so frustrating after having a taste of freedom! At one point I had about 2 weeks of bad days and that was really hard.

My EBV test was still inconclusive, they couldn't say if it was a current or past infection as it took me a month to get tested. This resulted in a lot of hospital tests to ensure my swollen glands weren't indicating something worse which was obviously anxiety provoking and exhausting. That was all clear thankfully. After this was all done I had probably my worst week yet and then seemingly overnight I felt OK! And I stayed feeling OK. I wonder if the stress and anxiety of the tests being gone helped. I went back to work last week on a phased return, it's been very tiring and I get the odd headache at which point I slow way down. Fingers crossed I don't crash but so far I have a new lease of life!

What helped:

My friends - I know its not easy to ask for help for a lot of people, I hate it, but this really taught me how to. Asking people to come over to see me, sometimes cook me dinner, or just watch a movie, really got me through the week and they always wanted to help.

My work - I felt so guilty having time off but I was very lucky to have a supportive team and to have sick leave, my friends in the USA couldn't have had that. In a way this helped me accept my situation for what it was and that it could always be worse.

Structure - it felt like a neverending groundhog day! I can't imagine what its like for those of you dealing with it for longer. I found having things I did each week helped time go by and like I was working towards something. So Wednesdays I did a hair mask, face mask and bubblebath with music.

Tasks - It was hard going from a busy job to nothing, so I thought of tasks I always wished I had time to do. One was think of good Christmas and birthday presents, as I always leave this to the last minute. Another was put all of my friends and family birthdays, their children's birthdays, anniversaries etc into my online calendar so I'm on top of sending cards and not reliant on Facebook. Create playlists. Create lists of books/movies/places to see. Obviously these require your brain to be working a little bit.

REST - Easier said than done. I should have rested at the very beginning instead of working with a fever for 6 weeks but we live and learn. The first time I had a good day I caned it and did lots and then crashed hard the next week. Don't do that, stay still even if you're desperate to get out!

Don't rest - At the same time, for me it was totally juggling my mental and physical health. Yes I shouldn't go out if I'm poorly, but I'll feel way more depressed if I miss out on big things or don't see people for a week. So sometimes I went out to a party when I felt terrible and paid the price physically for a few days, but I had good memories and some social contact. That's absolutely not medical advice just what I found helped!

Ready made soups - these were a godsend. I had no energy to cook and no appetite so the only thing I wanted was takeout which obviously isnt great for the hardworking body. Soups are packed with good stuff and easy to heat. I also cut out caffeine because I was feeling anxious about the medical stuff/whether it would end, and I think this helped.

That's all I can think of, I hope you can take something from that. Thinking of you all dealing with this, remember it does end and you'll appreciate your health in a whole new way after! I'm booking myself on a snowboarding holiday if I stay well because I'm done lying down!

Love,

Sally

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