Recently I have been like a bear with a sore head, I am constantly angry, I can be fine one minute and then just explode th next, for what might seem to be over nothing. The reason behind all this is simple I am a Mother.
When we have a child we make that promise that we will protect them, we will make things better, we will take away the pain, do whatever we need to do to make them happy. This is my problem I can not do this, I am failing my Daughter daily and there is nothing I can do about it, and it is breaking my heart.
Since C became will with ME, I have realised that having a chronic illness is one of the most forgotten about illnesses, there is a lot of ignorance from the medical professionals who should be helping, there is a lot of ignorance all over, and most of the time you are left to struggle on day by day on your own with no support.
Our current daily situation is that C is bedbound as she has 24/7 migraine headaches (on top of the usual ME and Fibroymalgia symptoms that she suffers), I know what needs to be done, as she needs one of her medications increased slightly. This is not as simple as you would think, as our GP surgery only a few Dr’s actually know how to treat ME or have an understanding of it, I have been to see our GP and told that children do not get this illness. So we need to speak to one of the GP’s who understands, which is when I will put a letter in as it is much easier than trying to get to speak to them in person. Yesterday, I put another letter into our GP addressing this and so far all I have had is we can give you an appointment next Tuesday, I got quite emotional and now have to wait until later this afternoon to hopefully get the go ahead to increase her medication, which will help her with her head pain. Surely she has suffered enough with being like this since the beginning of January
We see a great consultant, but when not seeing the consultant we are under the GP care, so they need to deal with anything that should arise. This is where we get the problem as the GP will not do anything without the Consultants authority, but you can not get hold of the Consultant to speak to the GP.
This is a common theme across the country, not just our personal circumstances. Only yesterday I was reading about a child younger than C crying they have had enough.
Unlike a lot of other illnesses ME is one of those illnesses that you get no support and you have to knock down brick wall after brick wall to get anything.
C desperately needs counselling, we are told to go through our GP surgery to arrange this, CAHMS in the only thing they offer, but we have seen CAHMS before who have said they do not deal with ME and know nothing about it. But there is no provision for children to have counselling.
My Daughter is 14 years old, she has no life anymore, she has lost contact with friends so has no social life, even if it is just chatting to her friends.
It is time that the professionals started to realise that this is an actual illness, and where symptoms vary from sufferer to sufferer, they are all linked in some way. If my daughter or other child suffering with ME, had a different illness there would be so much support and understanding. Instead of being left to struggle alone.
My Daughters life at the moment is lying in a dark bedroom because her head is so bad, she is shuffling in her walking and unsteady on her feet. She desperately wants to go to school, but just getting in the car and walking into the building for her tutor lesson, is too much for her.
I have tried to speak to our local MP and so has a friend of mine who also has a child that suffers with ME and lives in the same borough. But again he is far too busy.
I am asking that you j take five minutes to read this post, and share to make others and hopefully the professionals aware that this is a problem and needs addressing, so that my Daughter and the many other children suffering do start to get the help and support they need.
To those of you who know me, when I put that smile on my face and say I am fine, look into my eyes, if I seem to be snappy or argumentative I am just letting things out. If I look like I have been crying I have been.