May is ME Awareness month, and today is ME Awareness week. Where we highlight and share about this awful chronic illness, that affects thousands of people young and old.
I wrote an awareness post last week, which you can read here, and I will be writing the next awareness post over the weekend.
I am going to write about our story and explain just how much this illness has affect all our lives.
My Daughter was 12 years old when she became ill with this horrible illness. She had gone away on holiday with my parents on a Cruise (something my parents did with her every year). When She came home and was really ill with what we thought was a virus. She recovered and started her first year in Secondary school. She loved it, she settled in very well, had a lovely circle of friends and had started to enjoy a little bit of freedom. From going to school and back on her own by bus, and out shopping in town with her friends.
Sadly, and looking back now, she never really recovered from returning home from holiday with her illness. She was not 100%. She would ring me or text me to ask me to pick her up after school as she felt unwell, or was too tired. We just put it down to her age, and settling in to her new school. She also got lectured about bedtime. We have always been strict on school nights and we just thought she was chatting to friends after lights out.
The big crash
However, at 11.45 on 31st December 2015, our lives changed forever. We were at our friends house enjoying a little party to celebrate new year. When C came over to me looking awful, said her legs hurt and were shaky and she did not feel well. I got her to sit on the settee and thought she was just tired. She never recovered.
The next few months were just horrible, constant trips to the Dr, and hospital for blood tests, even trips to A&E when her legs gave way. Eventually she was diagnosed with ME/CFS. She had caught it from having Glandular Fever which is what she came home from her holiday with.
School were amazing, I have to say I am one of the lucky parents. A few have had such bad experiences with their childs school. C’s school have been very supportive. We have tried various things to get her into school, but she could not cope with lessons. One of her (many) things she suffers with is 24/7 migraine type pain, and concentration. Eventually after many meetings, it was agreed that she would have 1-1 tuition in school 1 hour a day, 3 days a week. Her tutor, is lovely, C got on great with her.
Although she did not understand the illness fully, she did understand C and her needs. She would pick up if she was struggling. This worked great until January this year, when C went into a major crash. She could not cope with going into school. Eventually we arranged home tuition but sadly she just had one lesson and has been too ill since. She has since been diagnosed as having severe ME.
Unfortunately, she also has a couple of other conditions, which I believe is also down to the ME. One is a jaw problem which is causing her constant pain, and me constant frustration as she can not eat properly.
A typical day in our house goes like this
- Wake Up – see if C is awake (leave her if not as depends on what her night has been like). Once she is awake we have a little chat and see how she is. Then the task of what she can eat for breakfast. Usually is soft fruit, maybe yoghurt, banana smoothie or jelly (yes she has had jelly for breakfast)
- Morning – depending on her jaw and how she is feeling. I will sit in with her or leave her alone and just pop in to see if she wants or needs anything.
- Lunch – Another long list of questions as to what she can manage to eat, lately it is ice cream
- Afternoon – pretty much the same as the morning
- Dinner – this has to be my most stressful time. She has hardly eaten all day and trying to find something she can eat for dinner is a nightmare. Most nights she will try something but will end up with soft fruit.
She also needs someone at home 24/7 as she is very wobbly with her walking. She needs a wheelchair when we go out, but sadly these days she just goes out for hospital appointments, and this takes it out on her.
This is just a very small glimpse of how this awful illness has affected our lives, I often say to C, if I could swap places and have the illness instead, I would in a heartbeat, so she could live her life.
I hope our story has given you a little more understanding on how this illness affects the life of a sufferer.