A ME sufferer from Harpenden is sharing her story to raise awareness.
Madeleine Gilbart, 57, of St James Road, is just one of the 250,000 men, women and children in the UK affected by the chronic, fluctuating condition Myalgic Encephalomyelitis (M.E.).
Mrs Gilbart said: "I was diagnosed in 2001.
"I had a very stressful responsible job which I left in 2002, and since then I have hardly worked."
By sharing her story for M.E. Awareness Month2 in May, Madeleine hopes to help others understand what it’s really like to live with M.E.
She added: "I was given retirement on grounds of ill health in 2004 and my husband has been my carer all along.
"It does sometimes affect our relationship but we have found a way through. I have a much reduced social life but most of my friends have stuck by me."
A key feature of M.E. is the body’s inability to recover after expending even small amounts of energy: this is called post-exertional malaise, and can leave patients shattered and struggling to function.
They may feel the impact straightaway but it can typically take anything from several hours to two days to kick in.
"M.E. has been the biggest change to my life," says Mrs Gilbart. "It is a huge shock to have to give up so much. Yet it is still very hard to get recognition or even belief in what has happened, and is still happening, to me."
Around a quarter of people with M.E. are so severely affected that they remain bed or housebound.
Mrs Gilbary copes with the symptoms of M.E. by balancing what energy she has with regular rest periods.
This approach, known as pacing, is reported by many people with M.E. as helpful in managing their symptoms. However, it is not a cure - there is no pharmacological cure for M.E.
"It has become second nature to pace myself, whatever I do," says Nrs Gilbart. "I need to rest every day and plan each day out as much as possible."
Comments: Our rules
We want our comments to be a lively and valuable part of our community - a place where readers can debate and engage with the most important local issues. The ability to comment on our stories is a privilege, not a right, however, and that privilege may be withdrawn if it is abused or misused.
Please report any comments that break our rules.
Read the rules here