10 months ago our 14-year-old daughter Rosie became ill…
She came downstairs on the first day back after the Christmas holidays and I knew straight away that something was wrong; she looked awful, She had a temperature, flu type symptoms and was just generally unwell. I sent her back to bed and phoned her school to tell them that she wouldn’t be in that day……
I’ve been phoning her school every morning since that day to tell them that she won’t be in…
Rosie has M.E.
It didn’t begin as M.E. or chronic fatigue, it was flu, but not the kind that goes after a week and leaves you feeling crumby for a while after. No this was a ravaging flu. Headaches that no tablets would touch. A burning in her body that wouldn’t stop even with cold towels, less bedding or lighter pyjamas. Talking to her made the burning worse, she would scream at me to leave her alone, she had an unbearable aversion to the light, so spent day upon day sitting in the dark with her curtains pulled.
Noise, of any kind, or the touch of a human hand was nauseating. She felt constantly sick, she didn’t want to eat and drank glass after glass of water. Two weeks passed and she was still no better, I took her to the doctors and we saw the nurse who diagnosed ‘ Australian flu’ it was in the news every day and seems to be the latest killer strain for the flu season. Plenty of rest, fluid and it’ll take time she advised. We left and Rosie went back to bed; in the dark.
I sat every evening googling Australian flu; what were the symptoms? how long does it last? How many people have died from it? hoping it was something else, something less severe. I read every story available to me, people who had had it and how long it took to get better. “It’s got to go soon” I kept on telling myself. Light relief came when her best friend also caught something similar and then myself and my son did too, “oh it is just the flu, it’ll be gone soon, she just had a nasty strain, maybe she had two types together”.
But we all got better; Rosie didn’t.
Two weeks then became three.
My 40th birthday was looming, I’d wanted to go away or do something extravagant, plans had to be shelved or altered. Lunch out on the day had to be quick and not too far away as we couldn’t leave her for long. My poor husband’s birthday a week before mine was a complete washout, but he was only 39. I felt stupid feeling silly and upset about my birthday, I kept on seeing other people celebrating their big birthdays on social media and felt jealous. I also felt incredibly frustrated and angry, “why the hell isn’t she getting better?”, “What’s going to happen about school?”
It got to the point where the attendance office must have recognised my voice, they must also be wondering what on earth was wrong with her. My husband heard a couple of boys walking back from the school run one day say to each other. “ Do you know that Rosie Kean? Do you think she’s dead!”
Richard, my husband, wasn’t sure whether to feel amused or angry, but he just kept on walking.
Three weeks became four and we decided to take her back to the doctors, every instinct in my body screamed that this was no longer the flu and we were dealing with something else. I had a niggling feeling at the back of my mind as to what it was, but I kept it pushed far back, telling it to go away because it wasn’t that and some medicine would sort her out and she’d be fine again soon.
“Rosie you are using too many pillows that’s why you’ve got neckache and a headache, you must go back to school!” That was the advice the doctor Richard saw gave to her. We were both furious, how dare they, we felt fobbed off, Rosie was devastated, she felt like a fraud, she sobbed in my arms “mummy why wouldn’t she help me?”
I waited till I was away from her, but I sobbed too.
Like a mummy bear in attack mode, I phoned the doctor and demanded to see someone else. This time I took her, no holds barred, I laid it to him on the line. This cannot go on, what is wrong with her? Please help us.
This time luckily he took me and Rosie very seriously, ordered blood tests and had a suspicion that it was post viral fatigue. My mind whirred. Post viral fatigue? Isn’t that linked to Chronic fatigue, could my niggling thought be right?
So that Friday we went to have the first lot of blood taken, maybe it’s just your B12 I remember telling her, that can be fixed with an injection. Or maybe it’s your thyroid, again that can be helped with medication. I actually prayed for the result to come back with something that can be fixed with a pill…….
They all came back clear.
Suddenly we were in the middle of February, six weeks had passed. Half term, she’s got to be better by half term, I had said to Rich, I could see little flickers of her reappearing. She was coming out of her room a bit more, sitting with the light on occasionally. Once or twice eating downstairs with us, rather than using a tray. We had rebooked a ski experience that I’d had to rearrange for Richards birthday to half term. Tobogganing at the snow dome in Birmingham. I remember saying to Rosie, please try and come, I can’t leave you here on your own, we’ll be gone all day. You can just sit and watch. We hadn’t, as a family, spent any time with her in six weeks. She came and it was fantastic, she was exhilarated, up and down on the ski escalator and whizzing down the fake mountain. She then begged us to go ice skating. I hadn’t seen her this animated for weeks. She spent an hour on the ice, a huge grin on her face. I could see that she was getting tired, but I was secretly hoping that this was the turning point, the virus was finally leaving her body and she was getting back to normal.
But actually, unbeknown to us, that was the start of her first crash…………
I had hoped that she would be able to start going into school again once half term was over, the week following the ski experience she was bed bound, it was as if the flu had returned. The headaches were more vengeful than before. The light seemed to blind her. She entered a world filled with vampires and my husband joked that she was turning into one. She would re-watch the vampire diaries over and over again. We didn’t know at the time, but people with M.E. find it hard to watch new programmes or films as the cognitive process is as exhausting to them as running a marathon would be to someone healthy. The pit of my stomach churned all that week. Questions fuddling my already woozy mind. “Why is she ill again?”, “how can I help her?”, “Who can help her?”.
I was on every available website and forum looking for advice, and the one stark reality that kept on rearing its ugly head were those two dreaded words M.E. I felt myself sinking, I would cry a lot, always on the edge of tears, usually alone, or down the WhatsApp voice message thingy to my mum and sisters.
“You need to try and go into school Rosie”, I remember having the conversation with her, I think I could see that she wasn’t well enough, but every instinct that you have as a parent is that they should not miss too much school. I felt sick at the thought of what she would have to catch up with. “Ok mum I’ll try” she responded.
Her tutor sent her home after 10 minutes. We didn’t force it after that. I had to keep batting away that parental devil sitting on my shoulder and do what was right for my child. A friend said, “let her rest, she won’t get better unless she rests, she can catch up with school, it’s not the end of the world”. Wise words and they stuck with me, I use them as my mantra when she says to me, “mum I can’t manage today”.
She managed sporadic lessons, every other day for an hour or two and even that was too much. By the end of March, I had had enough, I needed answers or a diagnosis, was it M.E?
We saw a fantastic doctor, she listened to me and agreed with my fears, but needed to get it confirmed by the powers that be. We were referred to Gloucester Royal to see a paediatrician. Yet more blood needed to be taken, “why?” screamed Rosie. She’s not a fan of blood, or needles, surprising for a wannabe vampire. But her first experience at the hands of a trainee nurse had mentally scarred her. She still to this day has more to say about the vials of blood, all 15 of them, than her actual symptoms.
Once again I prayed for an easy fix, something that could be cured by a course of medicine or an injection. I think I knew deep down that it was never going to be that easy. We went for her blood tests results in April. They were all clear, ruling everything else out first is the only way to diagnose M.E
“I think its pretty conclusive and I’m 100% sure that Rosie has chronic fatigue or M.E” I heard the doctor say.
How did I feel?
Relief in a sense, I know Rosie did and I’ve heard other sufferers say the same. A reassurance that they weren’t making it up or imagining feeling that unwell.
I came home, let my family know and then I cried.
A Guest Post from Clare Kean
Clare Keane is a local mum to ME sufferer Rosie. She has started blogging about her experience at Rosie and Me.