ME sufferer

Diagnosed: 2000

I first crashed with ME in the year 2000. I didn't get a diagnosis at that time.

From the symptoms that I had read in books from the library it was quite clear that it was ME.

I am a recovering alcoholic/drug addict, when I came into recovery in 1995 I noticed that I was getting very tired, very quickly. Then, one day, I began to feel dizzy and feint.

A passer by noticed I was near to collapse and ministered first aid and got me back to the rehab. I thought nothing more of it but did carry sweet things just in case it would happen again.

During my time at the rehab I had a Hep B inoculation as I worked in a hostel for street people. I became very ill shortly after with what was a reaction to the injection.

In 2000 I came down with a heavy flu virus and not long after I crashed with ME.

After 6 months or so I was able (after careful management) to be more and more active, taking rest and eating good quality food. During the period of 2000 to 2005 , I met and married my wife.

Slowly over that time I began to notice a gradual onset of symptoms, getting very tired very quickly, recovering slowly after plenty of rest, brain fog and light/sound sensitivity and mixing up my words also memory loss and not being able to find the right word.

During this time I began to experience a number of annoying illnesses, I had migraine type headaches which nothing would shift, I began to get pains around my heart which began to miss beats which was very frightening.

In 2005 we sold our house to enable us buy a new house. With all the stresses and strains of buying/selling a property and the packing I fell ill with a flu like illness and by the third day I was in agony in bed and unable to walk because of the pains in my muscles and joints. My head felt like it was ready to explode. My speech was slurred and I was incredibly weepy, crying for what seemed to be no reason. I felt frightened and frustrated at being so ill. I had to remain in a darkened room in bed for nearly three months.

Slowly with the aid of a walker and wheelchair I began to be able to get about the house and spending very short periods out in the garden. I did, however, lose my job as a chef and had to give up on all my ministries at church - I was involved with running the mini bus, music group, church committee, old peoples luncheon group and choir. My marriage has also suffered greatly as a result of ME, sometimes getting very close to divorce as my wife at first found it difficult to accept that I had ME despite my GP confirming the diagnosis.

To date I still have severe pain in my muscles and joints and constant blinding headaches, insomnia, speech and word-finding difficulties, anxiety and depression accompanied by suicidal thoughts. My wife and I have almost constant rows as a result of the strain this horrible illness puts on us. Thankfully I do have an understanding GP and the internet forum groups have been a huge support for me and my wife.

Sadly though in my area (N. Wales UK) there is hardly any NHS support or help. I was assessed for one ME clinic but they said I was too disabled and that there were other issues that needed to be worked on. They also said that because I was confined to a wheelchair they thought that would be too upsetting for the other members of their group!