It was January 2016, a year after I was hit by this horrible debilitating illness that is ME.
My son at that time was aged 13 and after Christmas felt unwell. We didn’t think too much of it, he was probably tired from all the Christmas fun and the winter months always bring out those dastardly bugs!
He would attend school for a couple of weeks then be completely knocked out for a couple. We attended doctors appointments and each time were told that it was that age old answer – a virus, it would pass!
He was so tired all the time and just generally felt unwell. He would sleep for hours and not the “I’m a teenager, I can’t be bothered to get out of bed” tired. This was different.
However, alarm bells did not ring in my head as we thought the same as the doctors, it was a virus, he would get better.
You know what’s coming right?!
We asked for him to be referred to see a Paediatrician as his school attendance was being affected. Unfortunately we received a letter from the hospital saying that a Paediatrician would not see him under the NHS until his attendance percentage dropped to a certain percent but they suspected that it maybe Chronic Fatigue Syndrome.
I felt as if my world rocked at that point. How on earth could this be happening? It was bad enough that I was suffering but not my son too surely? Had I given this to him? What about my daughter? Would she get it? As a Mum I felt totally responsible and the guilt hit like a truck.
As with myself, we paid privately to have my son seen by a Paediatrician who on 23rd May 2016 confirmed that he too had Chronic Fatigue Syndrome/M.E. We were also told that it was common for a child to have it if the mother had it (which I had never been told before) BUT that it was not my fault, I could not have given this to him.
As a Mum that still wasn’t enough and to this day somewhere in my brain I still feel responsible. You want to protect your children and I just felt like I was in a dream world and this really could not be happening.
We then learned that :-
• Children and young people (defined as being of school age) do get and are profoundly affected by CFS/ME, contrary to some professional and public perceptions.
• In children, the commonest age of onset is 13-15, but cases can occur as young as 5.
• A diagnosis in the young must be especially prompt, accurate and authoritative, and second opinions are needed if doubt exists.
Overall, there is wide variation in the duration of the illness, with some people recovering in less than two years, while others remain ill after several decades.
Since 1997 it has been known that ME constitutes the biggest cause of long term sickness
absence from school, in both staff and pupils.
A whole new scenario was now playing out. People would think – “okay, well you have it so it will be easier for you to handle” – NO..that is not how it works.
As I have said before M.E./CFS affects everyone differently. My son’s symptoms were and are different to mine. His system reacts differently to mine but we do share the common factor of debilitating fatigue.
We have been and still are on this journey as a family. Due to the sensitive nature of the details of suffering my son has been subjected to physically and mentally I will not go into too much here but will probably do another blog explaining how we fought the education system which resulted in this year us having to remove our son from school. He does not want or need to have all the details of his situation for all to see, that’s his choice to share as and when he wishes.
If you wish to learn more about children with M.E. then I would point you towards a website for The Tymes Trust (The Young ME Sufferers Trust). These volunteers saved us and helped us when times were really tough. They have a wealth of knowledge and advice. They have first hand experience of children with ME and without them we would not be as knowledgeable as we are today.
Their website is http://www.tymestrust.org
All I will say is I admire, respect and am forever grateful to my husband who through all this is standing strong beside us.
There have been moments, dark moments, where we just didn’t know how to cope with everything but we are a strong unit and his strength keeps us together.
He is our fighter when we do not have the strength, he is our advocate fighting the institutions that seem to want nothing more than to break us down.
Our journey continues but I live in hope that my son recovers. Adults are less likely to but there is hope for children. I want nothing more than for him to have his life back. To be able to do what he wants when he wants and not be held back.
Gentle Hugs, Faith, Trust & Pixie Dust x