One Mother's Story
Lorraine & Louise, Ibiza, 1980s
It was over Christmas 1992, when Louise had just turned 14 years old, that she came down with flu for the first time. Louise went back to school after the holidays but she felt unwell, yet not enough to stay at home. However, she seemed to go downhill rapidly and, eventually, she was home more than she was at school.
The family doctor said it was nothing to worry about and to get her back to school. It did get worse though, and the ever-increasing symptoms led to more visits to the doctor. He seemed to have a very negative attitude and, if he was not telling me that she just did not want to go to school, he was saying I was an overprotective mother!
The doctor eventually sent Louise to hospital for scans and numerous other tests. We would see consultants to rule out certain conditions, even cancer at one point. The consultants had the same negative attitude as our doctor though, and they simply referred Louise on just to get rid of us! When I visited our doctor during all these hospital visits, he sat there with a smug look on his face as if to say, “I told you that there is nothing wrong with your daughter!” When you get to this point you wonder where to go next. You lose faith in the entire medical profession.
I admit that I doubted Louise’s ill health in the beginning; she had always hated school and would do literally anything to get out of going! However, I could see how this usually healthy little girl was changing in front of my eyes, and it felt as if everyone else was blind not to see what I was seeing.
During a visit to Louise’s school, I spoke to one of her teachers about the problems we were having with our doctor. She mentioned M.E., something I had never heard of, but I gave it little thought. The school was eager to dismiss Louise. They agreed with our doctor that Louise just did not want to go to school. They were also in agreement with the many consultants that she should see a psychiatrist. I agreed to this, as I had got to the point where I did not know what else to do.
We went to see Dr Chang, a child psychiatrist, and he was like a ray of hope. After nine months of being told she was not ill, the psychiatrist took just twenty minutes to make a diagnosis. He diagnosed Louise with Myalgic Encephalomyelitis. We instantly went to the library and read as much as we could about the illness.
I remember the first book we brought home to read, which seemed as though it had been written about Louise. Nearly everyone had had the same problems as we were having with doctors, hospitals and so-called ‘specialists’. It was quite scary realising that this was an illness so many people had, and now my daughter had it. Checking the symptoms, Louise seemed to have most of them. We started a daily health diary, along with a list of questions, which we took to her next appointment.
Dr Chang assessed Louise and started her on a programme, allocating her limited activities with plenty of rest. He referred us to specialists for help, even writing to doctors in other parts of the country, although the outcomes were all too familiar. Dr Chang agreed to help Louise, often working beyond the remit of psychological services, and provided me with a great deal of support. Louise had to be discharged from his care when she turned 16, although he remained in touch until his retirement.
My husband and my other daughter (two years older than Louise) did not accept it as an illness but gradually, as Louise became worse, they realised that she was, in fact, ill, yet they did not seem to want to learn about it. I also had a 5-year-old son and ran a business from home so, obviously, it was a very hectic time. I carried on regardless as she was my daughter and becoming worse each day; it was up to me to be there for her twenty-four hours a day.
When Louise became bedridden it was the hardest time of all. She needed help walking to the bathroom - the dozen or so steps took forever. I gently bathed Louise, and carefully washed and combed her hair. I needed to change her bed every morning, for obvious reasons, which made her very upset. I had to help her feed herself but, eventually, she could not stomach food. She would lie in a darkened room all day and slept for unbelievably long hours. She was like a baby again.
My son was devoted to Louise, taking care of her in his own little way, and helping me around the house. I had been able to get him into primary school early, which was a great help, although he hated leaving her. Her sister was going out living life, which made Louise think about the things she was missing and, for the first time, she asked, “Why me?”
Also at this time, my mother-in-law was diagnosed with cancer and later passed away. With her death, looking after Louise and my son, along with everything else, I became ill with shingles. This was the first time I had become ill since it had started. People were telling me to slow down and rest but how could I? My husband worked away so he could not help me care for Louise.
After being bedridden and housebound for nearly three years she started to improve, only very slightly but it was something. Even though Louise was improving, she still needed my help with everyday tasks. After a while we decided a break would do us the world of good. I was concerned as to how she would cope, how tired she would get and if it would prove too much for her. However, she managed it, with the aid of a wheelchair, and I felt it helped her at that point in her illness. I thoroughly enjoyed the change of scene and even managed to relax a little!
As time went on Louise became withdrawn and depressed. She was having a lot of emotional problems so her doctor prescribed antidepressants to help. When she got to her lowest point and felt sick of her life, she attempted suicide. I cried so much and felt totally useless. I felt that I should have seen it coming. When I spoke to the consultant at the hospital all my emotions came out and I broke down. It is alright talking to family and friends but sometimes it helps talking to someone outside of your environment.
Louise changed her doctor and stopped all her medication. She looked at life differently and had more faith in managing the M.E. herself. She tried to get some part-time jobs at the times she felt reasonably well, but they did not last long due to her ill health and due to prejudice. She started to meet other sufferers and decided to launch this M.E. Support site to help them.
Even after all these years, the M.E. is still hard to deal with. I do wish that I could wave a wand and it would go away as quickly as it came. Not knowing if Louise will have to live like this for the rest of her life, or if she will get well enough to live a normal life, is hard.
Louise has good days and bad days, and relapses can last for several months. Please take a moment to read Louise’s own article M.E. My Story. We live together (I am now separated from her father) and I continue to care for Louise, although her brother remains a constant support. I know she is scared that she will become bedridden again, and I hope and pray that it does not happen. I will always be here for her; we have a very close and strong relationship. I love all of my children the same, but Louise and I have a different understanding.
I think the worst time was seeing my beautiful daughter disappearing in front of me. She was so thin and white (she was always so brown, even through winter) and she became someone I did not know. I kept wondering what was happening to my little girl - she was gone. When she tried to take her life I was afraid, and so angry with her, but I also blamed myself. Maybe I blame myself for her being ill. It is silly to think that, but it is amazing what goes through your mind when trying to understand WHY? Even though it is not known where it comes from, at the end of the day I gave birth to her and I feel responsible in some way. Maybe, if the reason for her having M.E. was known, I could better accept it.
I just wish someone could find a cure for this condition. I would not wish this underrated illness on anyone. Every morning I hope that she will get up and say that she is feeling better, and every day thereafter. It is so unfair for a young person to go through this. Maybe I should not say this, but at least someone who becomes ill later in life has already had a life. Louise has not had that and it is not fair. She is a beautiful and clever young lady and I love her heaps!
If you are a carer who is looking for support, please visit the Carers Trust (incorporating Young Carers) and Carers UK. The M.E. Organisations page also provides information for carers and family members. I am always pleased to hear from other parents and carers; you can contact me via the link at the top of this page.