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Danielle’s Story

It’s taken me a few attempts to even start writing. I’ve never written about my feelings towards M.E. but I feel it would be beneficial for people to know how it feels, as opposed to a list of symptoms to really appreciate what it’s like. Having M.E. is a crippling,  Illness that destructed my family’s life and stole my childhood. If you are lucky enough to make any kind of recovery, you’ll be left grieving for the
life you could have had, and guilty for the toll you took on your family’s
life. It doesn’t just impact the sufferer; it affects your whole family and
anyone you have any kind of meaningful relationship with. You gauge small moments of joy like walking to the end of the garden and back in the sun, but these don’t last long, because, you know that if you even push one step too far, you’ll lie in a dark room for a week. My two most vivid memories between 7 and 15 still haunt me. Knowing that my little brother thought I was going to die and sitting at the table with family around, unable to swallow, food falling back out of my mouth. I can’t remember how old I was but I knew it felt humiliating.I remember catching the eye of a relative, a mix of pity, horror and sadness
was all I could feel. Not so much a memory but a flash back not similar to how it felt at the time. An outsider looking in on your own life, like  you’ve died and no one really knows your there. I’m 27 now, I’ve fully  recovered but I am one of the lucky ones. Many people don’t. I’ve travelled the world, I’ve lived in different countries, I have a good job and great life but M.E. is still a big cloud in my life. I am eternally grateful to my parents for everything they did for me, I could not have had more support but I feel so much guilt for turning their lives upside down, along with terrifying my little brothers and being the reason that no one really had a normal life while I was ill. If I’m really honest, one of the reasons I don’t want children is because of M.E., I know it wasn’t my fault but I saw first-hand the effects of this illness on everyone around me, including myself and I wouldn’t wish it on anyone. My experience of the aftermath of M.E. may seem stark, but it’s the reality and I
feel the only way to really stress the gravity of this illness.

Tanya’s Story

Twenty years ago this year, my daughter, Danielle was diagnosed with M.E. It was the most devastating thing to happen to our family. Danielle went from a normal girl, to bedridden, suffering severe pain, bizarre symptoms, too ill to access education and unable to take part in all the normal things that a child should do. The impact and strain on the rest of the family was immense. Danielle has two younger brothers who struggled to cope and we found it exceedingly difficult to give them a normal life. I became the main carer and couldn’t work during that
time. As John was the main earner he worked, but we tried to make sure the boys were given as much normality as possible. How our marriage survived is  anyone's guess!! Recovery was a long process and involved one step forward, two steps back and much counselling and physiotherapy. After four years, we thought we had beaten it, only for it to return as Danielle went to secondary school. Then it was another  three years to full recovery. The stress of holding myself together for those years and subsequently a teaching job I loved becoming too stressful, eventually led to me become unwell with Chronic Fatigue in 2013. End of career, rock bottom again, we made the decision to move to Argyll from Surrey for a simpler life, and three years later I was more or less back to full health. I’ve surprised myself with my sporting activities now, and after not being able to do much for some time, I’m getting on with it! I cycle seriously and a couple of years ago took up running. I am running in the Edinburgh Marathon in May, and it is a pleasure to raise some funds for an illness that is so still little understood even now.

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