N is so sick she can no longer get out of bed, she is having visual, olfactory and auditory hallucinations, intermittent paralysis of her legs and has nausea so badly that she can only eat overcooked plain boiled pasta or rice along with sips of water. When she does eat the food just goes straight through her and leaves her exhausted, clammy and scared.
What have my children done to deserve this from you?
My girls are only 15 and 14 years old - you first arrived almost 4 years ago and then visited again 2 years later, breathing your evil poison into their bodies and stagnating their lives. You have robbed them of their childhood and freedom to mix and socialise with their peers, to party, have an education and enjoy their youth. You have stripped away their confidence, ambition and readiness to burst into laughter. N thinks she must be dying, she doesn't believe that an illness like ME can make you feel so awful for so long. She see's her sister, T, who has ME for almost 4 years STILL suffering and limited and is wondering if anyone EVER improves or gets stronger from being this ill. She now thinks that the doctors have got it wrong - that she MUST have terminal cancer. Why else would she be feeling this ill for every minute of every day, for life to be such a struggle.
I want you gone, I want them better, to see the light shining bright and vibrant back in their eyes - for recovery, to be able to go out, to hear the sound of laughter ever present. Instead they are mostly housebound, N is mostly bed-bound or sofa-bound, relying on her wheelchair when we go out. T is able to walk for limited distances so long as she has multiple rest stops - each and every activity means careful pacing and days of rest both before and afterwards. I am just ever grateful for the internet and the invaluable link it provides the girls to the outside world and their peers - those precious few who have remained in touch.
More than anything though - I want answers. Help from a united medical profession in providing a cohesive and agreeable treatment plan. Somehow to find solutions to the unending pain, nausea, stomach upsets, hallucinations, sensory overloads - the list is endless and as yet untreatable.
I want for the general public to understand that this illness is as real and debilitating as cancers, HIV, Lupus, MS - to be acknowledged and supported. Not shunned, disbelieved and labelled as lazy, school avoiders and attention seekers. I DO NOT want to hear that we are enabling the girls to "believe" they are sick, that they just need to pull their socks up and just get themselves up, exercise and get on with their lives!!!!
Most of all I WANT treatments, something to improve their quality of life.
It makes me sad to my core to hear of so many families affected and that there is often more than one sufferer in a family, sometimes multiple members. It makes me question why - what is the trigger?
I feel deeply for each and every sufferer, for the ignorance they have to suffer every day. For the parents who have to tread a very find line in accepting help and negotiating on what that may be in order to avoid the worryingly dangerous GET (Gradual Exercise Therapy) which we have tried in the past with a negative impact causing a huge relapse. The fear is that if we, as parents, don't accept the offered treatment of GET and CBT that we could have the control over the care of our children taken away from us and treatment given without our consent. As adults, if you disagree with a treatment you can refuse to have it without fear of further repercussions - it is not the same for children. We are our childrens advocates, we do all we can to help them to regain the control over their lives and health - but we are cautious about what is offered and will not accept anything that may further damage their health.
I don't want you to go away with the thought that I am against all health care professionals - there are some fantastic, caring, supportive and forward thinking practitioners out there. Sadly though, it is a lottery as to whether or not you are lucky enough to be able to be treated by one. We have a fantastic CAMHS team to support the girls emotional health, who understand the psychological issues they suffer are due to the physiological problems they have and the impact that has upon their young lives. Our osteopath is second to none and provides vital lymph drainage and manipulations to help the girls on a regular basis - she has become a friend and confident for myself and the girls. In addition we have found a sympathetic and understanding Consultant, who sadly we have to see privately as he is out of our area. He liaises as best he can with our local Childrens hospitals where we see different doctors every 6 months, which is not helpful in providing continuity of care (and something we are trying to sort out). Our GP team are also kind and supportive and where possible provide help but are guided by the hospital and CAMHS teams as they are our main providers of care.
What we need is a cohesive treatment plan, recognised universally by all areas of the medical profession. To have it recognised as NOT being a psychological issue and being fed through that system for treatment - but as a very real, damaging and severe physiological one and the impact it has on the neurological, immune & cognitive pathways.
It would be fantastic if government and research funding was re-directed towards biomedical research and away from the psychological governing bodies.
But until that time I am frustrated, devastated and heartbroken - holding onto the hope that the hard-working and determined sufferers and their families, along with the Charities Invest in ME and Let's Do It for ME can raise their voices loud enough to be heard and succeed in finding the secret that will help our family and all other sufferers to receive treatments towards a better and healthier life in the future.