Another Friday has been and gone in Miss M.E (12)'s world. Another day too ill for even the half-hour visit from her home tutor who comes twice a week. Children with chronic debilitating illnesses have a lot to ponder. They do not have the activity and excitement of healthy children, the distractions of school, and depending of the nature of the illness (e.g. M.E), the ability to walk around the block or to ring a friend for a chat.
Lately it has been playing on Miss M.E (12)'s mind about what is ahead for her in her future. It is nearing the end of the school year here, and it's been a year when she has done the equivalent of about five full days of school. She spent a whole term getting dressed in her school uniform, and the energy required for that along with a shower the night before (or that day) was enough to debilitate her too much from attending school. This is no basic fatigue. This is bonecrushing, nauseating, head-spinning, brain-fogging, co-ordination and speech-effecting, fatigue that is constantly there but hits even worse out of the blue from time to time. It is hard to watch a child hurting herself constantly doing the most basic activities like walking through a door, never being able to find the right words to hold a conversation, and frequently unable to finish her sentences.. or follow her own train of thought... her brain just gives up. She is mostly housebound, and any outing no matter how small is considered a huge achievement - but comes with payback of days of increased illness afterwards. Her world is very, very small. This is the child who a couple of years ago had already been showing the early signs of M.E (there is a genetic pre-disposition if a parent also has it), but who was still able to do one hour of hip-hop a week which she loved dearly, able to visit friends or go to the movies if she felt well enough, and was mostly attending school full-time which she also thoroughly enjoyed. She excelled in all her subjects and was always rated as a friendly and compassionate class member.
Today she asks if she will ever be well. If she will ever be able to go away on holiday again (car-trips exhaust her). She is looking forward to the Christmas holidays because she won't have 'the stress' of feeling she should be at school - even though she has not really been at school all year.... She doesn't talk of Christmas... the stress and adrenalin of Christmas is not necessarily a good thing for those struggling with M.E. We will be making it as low-key as possible, while still trying to make it seem somewhat festive and special to her....
Yet Miss M.E. (12) is by no means alone, nor is she one of the most severely-affected child/teen/young adult. Many are unable to eat and have feeding tubes, unable to stand the stimulation of light or sound so remain constantly in a darkened room with limited interaction, nauseous at every slight movement and in awful bone-aching pain for huge lengths of time on end.
Today I am reminded of Karina Hansen, a young Danish woman ... who is today spending her 25th birthday in a Danish hospital, held against the will of her and her parents... She has been kept there 8 months, forced to do treatments that are detrimental to her ongoing health, with archaic believe systems around M.E as a psychiatric illness... when there is strong medical evidence that it is a neurological auto-immune disorder. My heart breaks for her and her family and the dreadful ordeals they have been through and are continuing to go through. Best wishes and birthday blessings can be sent to her via this facebook page: https://www.facebook.com/JusticeForKarinaHansenand messages to add your support to her and her family. I encourage you all strongly to join the page. A more complete explanation can be found there, and also ways to donate towards M.E. research, for a better future.
Sending you all much love and blessings
xxoxx The M.E. Mum
