Linzi Sutton was just recovering from a decade in the throes of ME, also known as chronic fatigue syndrome, when she was diagnosed with fibromyalgia, an incurable condition which causes agonising pain, two years ago. Undaunted the 28-year-old from Woodhall Park is determined to reclaim her life and be the best mother she can to her children.

IMAGINE waking up tomorrow and not being able to work, move, do anything.

It’s happened to me – twice. The worst part is not being able to carry my son in my arms or even lift him. But you have to mourn your old self, your old life and find a way to manage.

It started when I was 14. I had been a witness to a sexual assault on the school bus and I had to give a statement to the police.

The following day, I started feeling unwell and having really bad stomach pain. I thought it was probably the shock. But it got worse and worse. I was so tired I couldn’t get out of bed.

I would cry, saying I couldn’t go to school. I didn’t have the energy. My parents didn’t understand how I could spend days in bed and still be tired.

It took a long time for doctors to understand what it could be. It’s an invisible illness and I don’t think they believed me at first. I was just a lazy teenager to them.

Eventually I was diagnosed with ME when I was 15. I was relieved to finally have a name for what I was feeling, an explanation. You sometimes question yourself; you think you must be going mad.

But then I was told that there was nothing they could do about it. Nothing is known about ME so I never got any advice as to how to cope or live with it.

Accepting that there was no help available was difficult. I was on anti-depressants for a while and pain killers for my stomach pain. It took seven years for the pain to be diagnosed as IBS – which is a symptom of ME.

I didn’t go to school a full week for a long time. But I tried hard. I got a job at TK Maxx at 16 and worked my way up to manager. I struggled but I did it. Sometimes it would flare up and I would be off work for three months and then I would be OK for a while.

It’s strange to say but even though there were a lot of ups and downs I didn’t make much of the ME.

Maybe I was young and optimistic: you always think that things are bound to get better. I had my own flat, I was independent. And I managed it; I gradually got over it. I had a good life.

When our son Alfie was born in 2013 things got worse again.

I thought the ME had come back. I was exhausted. We would go out for an afternoon walk and it would take me three days to recover.

I started getting muscle cramps in my legs. It felt like my muscles were being torn from the bone. It spread to my back, and there were times when I couldn’t lift my six-month-old baby.

My skin hurt when I touched him. But how can anybody believe you when you say your skin feels constantly bruised?

Even lying down on the mattress hurt. I felt like I was 90 years old.

Irealised it was too much - it couldn’t just be ME. I started Googling the symptoms. That’s when I found out about fibromyalgia.

It just made sense. But I got really scared reading about it. It’s a progressive condition and some people online were saying they ended up in wheelchairs.

I was diagnosed with fibromyalgia two years ago this month. I couldn’t help thinking I had finally got over ME and this happened.

I was told it was likely to get worse the older I got. I was referred to a physiotherapist straight away and put on painkillers. My anxiety levels were horrific. I was scared of going out and have a panic attack. I was worried about what would happen if I got stiff, if I suddenly couldn’t walk.

You have to go through the worst before it gets better and you have to accept that the small accomplishments are the biggest.

Two years ago I could barely pick Alfie up some days. I struggled to stand, walk, even hold a drink because my muscles seized up – all the things we take for granted. I haven’t been able to go to work since. Not being independent financially has been very hard to deal with. I worried I wouldn’t be able to have another child.

This illness had taken so much away from me already. I got to the point where I decided it was too much and I couldn’t give having a family up. Why shouldn’t I have what I wanted too?’

The doctor agreed there would be never be a good time to have a child. In a few years I could be worse and not able to handle the pregnancy.

Our daughter is due in January. I don’t know how I will cope when she’s here and I feel guilty about it but I have my partner Adam and we will just have to find a way to manage. But I think this will probably be it. I don’t think I could cope with another pregnancy now.

I try not to think too much about the future. I started making jewellery and it’s been a kind of therapy for me.

I sell it on Conscious Crafties on Facebook, which was started by four people with disabilities or chronic illnesses. When I lost my career, I felt like I had lost me and it’s given me a sense of self-worth back.

I know it’s not going to get better but I hope that at some point I will be able to manage anything the fibro throws at me. There are people in worse situations than me and I know I’m lucky to be here.

Linzi is a member of the Swindon ME & Fibromyalgia Support Group. To get in touch with the group or for advice call 0844 887 2357, email swindonmesupportgroup@hotmail.co.uk or visit swindonmesupportgroup.org.

Factfile

• Myalgic encephalomyelitis (ME), also referred to as chronic fatigue syndrome causes persistent exhaustion.

• It's estimated around 250,000 people in the UK have ME. It usually develops when people are in their early 20s to mid-40s. Children can also be affected, usually between the ages of 13 and 15.

• Symptoms include fatigue, muscular pain, severe headaches, poor short-term memory and concentration, stomach pain, sensitivity or intolerance to light, loud noise, alcohol and certain foods.

• The cause of ME is unknown. Some theories suggest it may appear as a result of a viral or bacterial infection, problems with the immune system, a hormonal imbalance or psychiatric problems, such as stress and emotional trauma.

FIBROMYALGIA

• Fibromyalgia is a long-term condition that causes pain all over the body. As well as widespread pain, people with fibromyalgia may also suffer from increased sensitivity to pain, fatigue, muscle stiffness, headaches and irritable bowel syndrome.

• The exact cause is unknown, but it's thought to be related to abnormal levels of certain chemicals in the brain and changes in the way the central nervous system (brain, spinal cord and nerves) processes pain messages carried around the body.

• In many cases, the condition appears to be triggered by a physically or emotionally stressful event, such as: an injury or infection, operation, the breakdown of a relationship or giving birth.

• Anyone can develop fibromyalgia, although it affects around seven times as many women as men. The condition typically develops between the ages of 30 and 50, but can occur in people of any age, including children and the elderly.

• It is believed nearly 1 in 20 people may be affected by fibromyalgia to some degree.

• Although there's currently no cure, a combination of medication – such as antidepressants and painkillers - counselling, exercise programmes and relaxation techniques can help people live with the condition.