To all parents with a child who has M.E.…
Welcome to the middle. I call this time in my life, in my child's life, in my family's life, the middle, as in the long and unknown journey we are unwillingly taking. I feel that we have made our start but have not reached the end, so here we are, in the middle.
It was late 2013 when my daughter Ellise, who had just turned nine, began to show signs of something. I call it something as the initial symptoms were small, discrepancies in her everyday life. She had the odd bout of tears, and the occasional day off school, but nothing alarming. When she brought her school photo home we joked she looked asleep, her eyelids half shut, in contrast to the smiling face of the previous year.
Ellise was, before this, an interesting, rather unusual child, our wonderful little oddball, self-contained, easy going and different. She had one general mood, was quiet and happy, didn't get overly excited or ever upset and ate anything. Ellise was exceptionally clever, reading at two, spelling at two-and-a-half. She struggled socially, sitting reading books at the park whilst her friends played. Her photographic memory meant she was beyond reception class targets before she even started nursery. With an older brother, older sister and also younger sister, Ellise was happy and settled; a wonderfully individual child. She was shy and not overly affectionate, happy to sit on her own and entertain herself.
As the weeks moved by, we began to notice she was tired and pale; her eyes sometimes looked bruised they were so black beneath. She began to cry and not know why, which was very unlike her usual self. I started to wonder if she was approaching an early puberty; that maybe she would begin her periods, hence the tears and exhaustion. I decided to keep an eye on the dates to see if there was a pattern. After three months Ellise’s behaviour and random illnesses were more frequent, she was very tired and finding it hard to sleep. After a week of terrible headaches, I went to speak to her teacher. I had hardly got the words out, asking if she had any concerns about Ellise, when she began nodding. She told me Ellise had almost been asleep in class and looked pale and ill.
School began sending her home frequently, but after a while of resting she was fine; it was so confusing. She would cry and scream on a morning, saying she was ill, but a few hours later be recovered. At this point Ellise only had a couple of recorded illness days: when she was two and had a nasty bout of flu, and then chicken pox – she was never poorly or missed school.
The doctor suggested I keep a daily diary, something I did for eighteen months (and was thankful every day for), as it proved the symptoms every time I had to speak to doctors and consultants. The diary showed migraines, fluctuating exhaustion, the onset of sore throats and problems with the taste of certain foods. The child who remembered everything suddenly forgot whole conversations and what words meant, repeatedly asking the same questions as she couldn’t remember asking previously, or the answer given.
Upon returning to visit the doctor, he noticed Ellise’s drooping eyelids and waxy pallor, hence ordered full blood tests and an MRI scan. I began to think it was Leukaemia or a brain tumour, which was terrifying. It was a difficult time as sometimes Ellise looked fine, running around and seemingly well.
I had close friends who suggested she was over tired or hungry, that it was her hormones or due to the changing weather. The suggestions of simple answers as to why our child was changing before our eyes never seemed to end. So I felt I couldn't share my fears properly, except with my husband. I felt dramatic, as if I was labelling Ellise if I suggested what I was fearful of; and of course, for the children we had to say all was ok. It put a strain on us as a couple as I slept with Ellise on a night, and our extended family were all very concerned.
The blood tests came back clear. Relief. The MRI scan was a time of knots in my stomach and staring at the face of everybody who saw Ellise, trying to see if they knew something. The results would be three weeks.
After just three days, on a Thursday at ten past nine, I received a call from the GP’s surgery – the doctor wanted to see me the next day at eleven o’clock to discuss Ellise’s results. And so for over 24 hours we entertained the unrelenting thought that she had brain cancer. Google proved too compelling to resist, and I couldn't sleep or eat. The next day we were told her scan was clear. Relief. Overwhelming relief. But what next? The doctor referred Ellise to a neurologist.
I began to listen to the whispers and the looks I got when Ellise was having a good day, and they began to take their toll. She was now in a cycle of ‘good’ days and ‘bad’ days. We would take the good and fill them with as much as we could, never knowing when the bad would occur. We didn’t realise this was the wrong thing to do; we had no idea of pacing.
One day, a Monday, I decided it was my fault. I was pandering to her. I was feeding this problem. She needed tough love, and I would make it all be ok – so I sent her to school. She wasn't managing more than three or four half days, but that week I made her go every day, all day. By Wednesday I was dragging her from the car; by Friday she was pale and weak. However, she seemed happy by teatime and played outside, such is the fickle, unrelentingly fluctuating nature of this condition. We set off to take her to Cubs, but she began to have tummy ache. Over the 20-minute journey it progressed so badly that we had to stop at a local supermarket. She was in the toilet for almost an hour; her seven-year-old sister and I stood helplessly by as Ellise cried and screamed her tummy hurt. She was bloated and felt sick.
Over the weekend her tummy eased and I thought it was a bug, but it began again on Monday. The GP suggested Ellise be admitted to the children's ward to monitor her, but after a discussion with the registrar we agreed we would watch her at home. She ate a bit and seemed to improve – however, suddenly at six that evening she began to scream. Her stomach swelled and by eight we were at A&E. The pain was so severe that even breathing hurt, and she couldn't wear a top as the slightest touch was agony. The staff gave her morphine, and an ambulance transferred her with suspected appendicitis. I felt helpless as I tried to explain her recent history. I just had a half-tale of headaches and tiredness, nothing really that could link to this or seem relevant; but I knew it was. The guilt was terrible: I’d caused this, I sent her to school all week, so it was my fault.
After a reasonable night Ellise woke the next day sore, but better. The staff were confused, so sure had they been that this child in agony had appendicitis. She had an ultrasound and all the relevant checks, and I again stumbled over the many confusing symptoms she had been having, but the doctors were at a loss to give me an answer.
In four weeks we exceeded the expected visits to A&E a child is supposed to have in a year. Ellise, the child who was never ill, went for headaches, tummy pain, dizziness and imbalance, and two falls. The staff asked to check her doctor’s records. I was a childminder and aware of child protection laws, so of course agreed.
Eventually, due to an admin error, we were called back to the children's ward after that week. The staff had misconstrued a call from our GP and believed Ellise still had the abdominal pain. She was, however, really well, having had the week off school resting. She was sitting in bed, eating chips, looking the picture of health when the neurologist arrived to see her! It had become an uncomfortable pattern that I was always insisting Ellise was very ill, even though she looked fine at times, one that I have come to see as an everyday way of life now.
I explained the history of the previous few months, and although the neurologist seemed a little annoyed at this strange situation, he did the relevant tests and suggested she had a condition called M.E. I believe this saved her more pain and hospital visits, as he explained how to pace her and what to do on the good and bad days. We were given a printed sheet with the column next to ‘Diagnosis’ actually filled in at last. I was unaware what this was, what it meant, or what would follow.
I was so desperate for an answer – for something to say to people, to school, to doctors – that I was almost happy. A diagnosis meant help and we could begin to get her better, a cure. Naively relieved, we had a starting point, I rang my husband. His reaction was different: he had heard of this and recognised the seriousness before me. As the evening progressed and Google began to inform me, I started to realise it too. The neurologist had hopefully suggested six months until she would begin recovery, although the internet told a very different story. Both her grandfathers cried at the news.
The weeks plodded on. Ellise barely attended school now, and we just looked towards the consultant’s appointment. It came, and he was lovely, confirming the diagnosis and registering Ellise as a patient. More referrals followed, and months of waiting for funding to see specialists in Sheffield. There is a big modern clinic there especially for people under 18 with M.E., where all the services are in house: physiotherapy, dieticians and specialists. Living in Leeds, we are out of the area and cannot access it, so we received a trickle of appointments. A dietician explained Ellise’s cravings or dislike of certain food groups were linked to her body's energy levels and what it needs. A physiotherapist told us he couldn't do much as every muscle is affected, but was kind and understanding, and listened – suggesting staggered exercises. The specialists told us to see this as if Ellise had been in a terrible car crash, as her entire body and mind needed to rehabilitate slowly. They said it was a process that would probably take years.
The summer holidays were a struggle. As a childminder, my remit was to wear the kids out. We had a busy plan, wellie walks and parks trips, picnics and days out. Ellise spent difficult days crying in parks, and at home, as the noise and business was distressing and exhausting for her. She spent days at grandmas’ when I took children on lovely days out that she would have, and should have, loved. I was consumed with guilt leaving her and often had to rush to pick her up – as now, the child who was previously unaffectionate and self-contained, needed me there all the time; she had regressed greatly, carried her teddy and called me Mummy again. The family holiday was hard, but we made the best of the situation. Ellise struggled, and had to be carried some places and have full rest days. We began a pattern we are used to now, where my husband took the three other children out, and I stayed with Ellise.
After a nightmare, total and utter nightmare, few months dealing with school – their plain ignorance and unexplainable reluctance to research this illness and listen to me – I finally began to try to adjust. The attendance officer wanted me to home-school her. The school wanted her to attend more than the carefully planned three mornings I had structured to fit in with Ellise’s energy patterns, and the boom and bust, good day / bad day effects M.E. has on a person. Desperate to help her, I got copies of the curriculum, and tried to teach Ellise in the local library on the mornings she wasn't at school. She was too exhausted, and so was I. Trying to childmind and look after my three other children, and have a child who was changing before my eyes, was devastating. The school pressured me again and again; I attended meetings with seven or eight professionals all telling me the same thing. So at the end of November I reluctantly agreed Ellise could attend every morning. The effect was catastrophic.
Ellise was poorly every day, she screamed from two till ten, having tantrums and being verbally abusive, making my job difficult, and the other children to choose to stay in their rooms rather than deal with her. She began to hit me and harm herself – once having missed a bun sale at school, she was so upset she head-butted the front door. She refused to get in and out of the car, cried all the time – life was a constant battle. After three weeks I went into school and told them it was over, Ellise would be going back to the three mornings. They were unimpressed.
I wrote to them explaining how Ellise was affected by extra time at school – how she had begun to wet herself, become so exhausted she couldn't stand up, get dressed or get in and out of the bath. She was hungry but felt too sick to eat, tired but couldn't sleep. The school replied, suggesting they understood but they wanted to up her hours to 24 per week. That was it. I was done.
Ellise stayed at home, too poorly for Christmas parties and discos. A previously talented swimmer and a member of clubs, she now did nothing – could do nothing. The school received a 12-page letter from me; I queried their disability and inclusion policies, told them not to ring me, not to send letters home with Ellise or her sister, and only to contact me through the post. The extra school time took such a toll on Ellise that it took three months for her to recover. She went back to the three alternate mornings, and rested on the days in between. On weekends she was exhausted. No more busy, bustling weekends that we were used to, long walks in woods and streams, play gyms or parks. Her younger sister stopped asking to go.
I slowly began a tentative approach to school, and after a few weeks agreed to a meeting – opening up the lines of communication again. It was different, they were different and so was I, as was everything.
So there we were; the beginning was done, and the end never near – the middle. We had arrived in the no-man’s-land that is the middle. Now we are a year on and still in the middle. But it is OK.
It is now January 2015 and Ellise is much better, but I am convinced this is partly due to the fact she is better managed now. We understand pacing and so does she, whereas before she would think, "I’m going to-run down that hill because I always could," even if she was tired. Rather than becoming ill and frustrated, she will now decide herself if she is able to manage certain activities. This is due to her being a little older, and also down to the fact she can’t remember life before she became ill. She is a different child.
After a period of, I believe, almost grieving for the child she was, the child we lost, we have now adapted to who she is now. Ellise is very different, clingy and emotional, and very young for her age; she has memory problems, and still has issues with bladder control as her muscles are weak. She is easily upset and, although she doesn’t get violent, can become mean and upset when tired. Her older siblings are teenagers and have their own lives to be involved in, but her younger sister is only nine and has had to grow up fast. She needs reassuring that I don't love Ellise more, is jealous Ellise gets to have days off school, and has to put up with the moods. However, they are close, and as Ellise has regressed slightly, they have similar interests and ability. She doesn't know the days out and trips and things she has missed; but I know, and it makes me feel terribly guilty. However, we try other things: we play board games, do jigsaws and watch films instead. We now have two dogs we all adore, and wouldn't have them if Ellise wasn't ill. I was ready to train to be a nurse as Ellise became poorly, so wouldn't have had the time for pets; but it wasn't to be.
We are currently, nervously, trying to increase Ellise’s school hours. She received a tutor for seven weeks, one morning a week, and loved her – but it was only temporary. Ellise’s academia means that although she has dropped two sub-levels, she still maintains average grades, even on a 14-hour timetable; so certain services are unavailable as she doesn't meet the criteria. She begins high school in September, a prospect that is terrifying. She has also had to go through the ordeal of being an early developer, while still being a little girl emotionally. I am trying to get her into a school where the SENCO (Special Educational Needs Co-ordinator) department is good, but it isn't in our catchment area – so fingers crossed.
We are OK, we are happy, and Ellise is doing well. I am still battling with school: after the headteacher and I reached a tentative understanding and things improved, they came crashing down again at a recent meeting. I met Ellise’s new form tutor, in effect her primary carer at school, and he queried why Ellise can’t do Physical Education as it would probably make her feel better – he suggested she was fine, and just playing up for me. I almost don't have the words!! I don't have the energy to go back to square one, so I’m not even arguing with this teacher. I met with the headteacher and learnt that several members of staff still don't understand the condition, or why Ellise doesn't come to school more. I told her to educate her staff and asked if Ellise had a visual illness like Cancer, would their attitude be different? I’m furious and disgusted, but am tougher now; I’m neither intimidated nor swayed by the school. I will make sure they will do what I feel is best for my child. I left it by saying that if she is made to do P.E., she will leave the school.
Ellise now receives Disability Living Allowance and has a blue badge for the car, which has made our lives so much better; we can go places and know the car is only a moment away. There is good with the bad.
So, welcome to the middle. We have spent a long time here, and changed in a lot of ways. Ellise may be different, but in some ways the changes are good. Ellise and I have a close bond which I don't think we would have had, as she is now a combination of young child and pre-teen. I have changed my job, and work a couple of hours before the school run and late nights on a weekend, so I can be there all week when the house is quieter and less chaotic. This is really good for us all. We adapt and adjust every day, as do many families. I am a member of M.E./CFS Parents who understand and help so much. Ellise is at the moment lucky; some children suffer much more, are bed-bound and tube-fed. So we have lots to be thankful for.
The Ellise we have now is wonderful and loving; and if this has brought us anything, it’s a child who is still interesting, clever and slightly off beat, but who possesses other qualities she didn't before and has other challenges to face. I sometimes find it difficult looking at old photos pre-illness and trying not to wonder who that version of herself would have become. However, she is still her, albeit a little lost. She is here, and ours, and we love her more than ever.
So while you are in the middle, try not to be sad – use this time to grow strong and become an advocate for this condition, and your child. Educate yourself and everyone you speak to, and live and love – for this is now and life is happening.
As we tentatively begin to peek out into the light of the next step, I feel scared and apprehensive, but also empowered and strong. I am aware of a slight race against time to try get her strength up before the teenage years hit her with all the complications they bring.
We are hoping for three full days by September, but are also aware this tends to be one step forward and three steps back, although even frustratingly slow progress is still a move forward. Maybe we will leave the middle for a while, maybe forever, as I am hopeful we are, at last, moving slowly and eventually forward – and if not, if it goes wrong, if Ellise is too ill and tired and can’t manage, then we will retreat back to the middle. Not sadly or in despair, but with the knowledge we have each other and a way to cope. We will try again another day and, of course, we know that we are never, and never will be, alone here. We will fight Ellise’s corner whatever comes our way.