Action for ME
TOTAL RAISED: £127,662
Mandy Foulds, 47, from Leicestershire explains why the work of Action for M.E. is so important to her family
- ME. is the most common cause of long-term absence among school children.
- One in four children and adults with M.E. are severely affected, unable to leave the house or care for themselves independently.
- Action for M.E.’s online, telephone and email support services help children, families and adults with M.E. to cope with the impact of the condition, and feel less isolated.
- The charity’s experienced Children’s Services Team supports young people and their families to access appropriate education, health and social care services that best meets their needs.
- For more information, visit actionforme.org.uk
When my son Lewis, now 11, caught a bug he seemed unable to shake off in 2016, his symptoms seemed worryingly familiar. Although I tried to convince myself he would soon be back to normal, part of me recognised the signs he may be suffering from ME (Myalgic Encephalomyelitis) – a chronic condition that causes severe and debilitating fatigue, and which I had also been diagnosed with a year and a half earlier.
My own struggles with my health began as a child, when I would experience painful, swollen joints and severe migraines. I learned to cope with the migraines over the years. However in 2012, I noticed they were getting a lot worse and I was having to take quite a bit of time off work. I was also getting palpitations and had a cough that wouldn’t go away.
Eventually, I visited my GP and was put on antibiotics for a suspected chest infection, then I had an operation at the beginning of 2013 to insert a grommet in my right ear, which felt like it had water stuck inside it. For the next six months, I also visited several doctors about my palpitations as I had become very unwell and blacked out one day while sat on the sofa with Lewis. However, they were repeatedly dismissed as symptoms of stress or anxiety.
Eventually, in July 2013, I saw a wonderful GP who ordered blood tests straight away – the first I had been given. The results showed I was severely anaemic and my thyroid had pretty much stopped working. I was put on thyroid medication and iron tablets and by November 2013 my thyroid was reading at a normal level. However, I was so exhausted I couldn’t even pick Lewis up from school – literally around the corner from our home – and just getting out of a chair caused unbearable pain in my legs.
I looked online and discovered women who have thyroid problems often end up with ME – a neurological condition which, alongside fatigue, can cause flu-like symptoms, pain, problems with memory and concentration, poor balance, digestive problems and anxiety. This sounded like me and at the beginning of 2015 my GP confirmed this. Part of me had hoped I had something I could take a pill for and feel better, so the diagnosis was devastating.
I was also diagnosed with a vestibular disorder – which affects the inner ear, causing balance problems and issues with hand-eye coordination – and fibromyalgia, which causes pain in my legs so I can’t stand for longer than ten minutes at a time and struggle to walk. I also experience anxiety, panic attacks and cluster migraines.
In 2014 I realised I had to stop fighting, accept my condition and try to live my life differently. I had to give up my job, which was very upsetting. I now manage my symptoms by going to bed in the middle of the day every day, so I have energy to spend time with my husband, Craig, and Lewis in the evenings, but my quality of life has been massively reduced.
Devastatingly, last year Lewis was also diagnosed with ME after experiencing symptoms of a stomach bug, migraines, fatigue and panic attacks for just over a year. Although I was initially in denial about his symptoms, another mum at his school mentioned it sounded like Lewis had Chronic Fatigue and I realised I had to take action and try to get Lewis a diagnosis and some support.
I knew it would be a battle because of the lack of understanding surrounding ME, and I couldn’t have been more right. My GP – who has been treating me for the past two years and understands the illness – was struggling to know where to send Lewis because he didn’t want to send us to someone who didn’t understand the condition, and it took a year before we were referred to a paediatrician.
The worst part was the stigma Lewis faced at school, where he would receive nasty comments from pupils and teachers who thought he just didn’t want to be there – which couldn’t be further from the truth. Eventually, we had to elect to take Lewis out of school, and then had a battle to convince the local authorities to provide home tutors for him. I felt like we had just been abandoned and left to get on with it by everyone, and we were struggling to cope.
At this incredibly difficult time I got in touch with Action for M.E. I’d used their website in the past, but I was desperate to talk to someone who understood what we were going through – and I picked the right people.
When I speak to Mary-Jane Willows, the charity’s Head of Children’s Services she almost finishes my sentences because she knows exactly what I’m going through. The information the charity provides is wonderful and they validate everything you are experiencing. After Lewis’s paediatrician claimed he was well enough to be back at school – despite the fact he was in bed every afternoon – we almost lost his home tuition, but Action for M.E were there with support and advice to get us through that.
Without their support I honestly don’t know where I would be. When your energy is limited it’s a battle just to get through the day, and knowing I can pick up the phone and talk to somebody who understands during times of crisis is what gets me through. They’re my voice of reason when I am too overloaded to think clearly myself, and are there when I need someone to talk me around and know that everything is going to be ok.
The Candis Big Give
The money raised will go towards supporting those affected by M.E. by funding a telephone support service, support services for children with M.E. and their families, and the development and maintenance of an Online M.E. Centre. It will also help the charity to continue to increase understanding of the condition in health and education professionals and policy makers.