ME Support NI: May 2007

David first became ill in October 04, aged 11. Doctors thought he had Addisson’s disease, although he was diagnosed with a really rare skin condition called P.L.E.V.A.

In March 05 David started to become more ill, it was then put down to an unknown virus. Of note PLEVA can be caused by the Epstein Barr Virus which is also noted to be a possible cause of ME, although David was never diagnosed with this virus.

David never really picked up from then. He was a bright, articulate little boy and had completed and passed his 11+ and had commenced Grammar School. He did have a vaccination around this time. He loved Rock climbing, took the Irish National Champion Title in Jujitsu in 2002. He was a member of the boy scouts for years and loved Trampolining and going to the cinema with his friends.

From March 05, David started to find it increasingly difficult to manage in school. There was a repeated cycle of sending him to school and then the school would phone to say he was ill and I would have to go to the school to bring him home. He started to deteriorate from then and ended up in hospital for a few weeks, test after test and as usual everything came back clear. He was referred to a rheumatologist and she said he was fine and to send him to school. I was dismayed by this as me and my family could all see that David was a very physically ill little boy. I wish she could see him now!!

I can remember around May 05 David had started to complain of severe chest pain. The only way I can describe David’s pain was like someone having a heart attack on a nightly basis, his colour changed drastically going grey with white lips.

I remember bringing him to a locum doctor in the middle of the night and he practically told us there was nothing wrong with him.

The ignorance of so called proffessional medical staff is a disgrace.

In desperation my sister asked the consultant paediatrician she worked for to have a look at David and he was referred to a consultant anaesthetist. David was re-admitted to hospital for a nerve block into his chest, but the doctor was unable to do this as swelling had appeared on the right side of David’s chest. He had an urgent bone scan which again came back clear.

David was finally diagnosed with M.E in October 05. We thought we had struggled before, we were unaware that really David’s battle with ME had only just begun. He started to get all different symptons ; severe hallucinations, memory lost, concentration difficulties, aches and pains all over his body, unable to wash and dress himself, problems with his stomach, mouth ulcers, headaches, sleep disturbance. The list goes on and I am sure are well known to all his fellow sufferers.

Home tuition was put in place I think around the end of Feb 06, I was anxious that David did not miss out on his eductation. Initially this was three afternoons a week. In hindsight and with the knowledge I have now this was too much for David to cope with and therefore had to stop. His sleep pattern had completedly reversed, with him being up all night in pain and eventually getting to sleep at 7am and then sleeping most of the day.

Now April 2007, David has never recieved home tution again as he is physically not able.

David had his MRI of the swelling in his chest which came back clear as far as ME is concerned, although they say his sternum is growing over to the right side and pushing onto his ribs, but this would not be causing the pain David is in with his chest! So my question still is WHAT IS IT ???

Now the latest is psycology WHY??. Don’t get me wrong but at this present moment my main concern for my son is PAIN!!

My son David at present would not be physically able for psycology.

This is a boy who had everything going for him, now he’s left with NOTHING. Who justifies this?

David is totally isolated to the outside world, NO friends, NO idenity

NO Life. Does he choose to live like this? I definetly say NO!!

Know one knows unless they’re living with it 24/7. Medical Proffesionals only know the half of it.

No-one knows how hard it is to sit desperately by and watch your child in pain, and watch life pass him by!!

This illness changes your self image and your personality.

I truely believe I as a mum am greiving for the son I once had and has already metaphorically died.

I remember christmas 2005 thinking maybe David will recover and return to school. It is now April 2007 another year of loneliness isolation and Pain again.

As a family are lives have been turned upside down we no longer live we just exist. No planned days out, No planned holidays.

So to all you out there who still do not believe in this illness.

And people who think they are just lazy this is an insult to all those sufferers.

Remember ME doesn’t pick and choose who it comes to.

I hope and pray it NEVER comes knocking on your door.

Today things have not greatly improved. Pain is a constant in David’s life and a challenge for him, his struggle continues.

This story was written by David’s mum and dad, who continue to fundraise for ME Research.

Antoinette


	You're a threat to peace, The one that will cause a war. You're the one that has no mercy. You will steal his life from him. Waiting patiently in you're victim, You've been there since birth. Waiting patiently to strike him down, An unexpected time is best. You've forced you're victim into another world, It's cruel and unwelcoming. Time is not of the essence, Do you know how long you'll keep him there? Rally Round! Help! Fiercely raise you're finger. Give it to those who don’t believe. How can this be in someone's head? Are they blind? Or just brain dead? My brother, where art thou now? Living each day in a 'conscious coma', Disabling your right to live your life. Fight back my friend, fight back.