"What the hell is wrong?" when Amy first got a continuous migraine that went on for weeks, following what we thought was glandular fever. "Why is she not getting better?" we couldn't open the curtains, she couldn't get up, or hardly sit up, she was in so much pain.
You're relieved when serious illnesses are ruled out (like a brain tumor), chronic fatigue syndrome is suspected and a referral made to the specialist CFS/ME clinic. 6 months later and still so ill not managing even an hour or two at school, CFS/ME diagnosed. At last, you think, she will finally be looked after properly and will start to get better. "This could be long term" doctors say to you, and for at least the first year, you're a bit in denial. "Yeah, for some people this goes on for ages, but not for Amy, that's not us, she will get better soon" is what you think. Only after 2 and a half years do you, can you, start to appreciate what 'long term' means. It means feeling ill, every day (yes, every day) for two and a half years. And no one, not even the specialists can help you. Then you start to accept it, and realise you are not alone, there are so many others in the same boat, some a bit better & some a bit worse, and this is your new normal.
There are literally millions of lives stolen by this horrid, horrid illness. It is so not just a bit tired. When you watch it happen to someone you love, it breaks your heart.
You try to focus on the positive things, your life changes from what is was, you get a dog! You get out when you can and do whatever you can to stay hopeful that one day, either there will be a cure, or things will get better. The Government, Doctors, Medical schools, and everyone need to know how bad this is. Please join me, or just share our story and show your support, even for just one day. It would mean so much to us, like we are DOING something, when the rest of the time we feel so helpless. May 12th is ME awareness day. Thank you.
ME/CFS is drastically underfunded and millions of patients are left to suffer in silence. The #MillionsMissing protests are happening in major cities all around the world, in a huge effort to make peoples' voices heard, to bring about ME health equality, increase government funding for research, clinical trials, medical education and public awareness.
ME/CFS Sufferers and their families really are left in the dark; with your help and support we can change this and get this serious, long-term and debilitating illness the attention and recognition it deserves, and provide a better future for everyone. One of the worst things about this illness is no one knows what to do to make it better, but we do know that over exertion does make sufferers worse; being stuck with a battery that will only charge to 5% every day is a good analogy, & no amount of sleep or rest seems to help. But it's not only that, it's also feeling ill every day, and trying to do more causes patients to 'crash' which brings on horrible and scary symptoms that can take days even weeks/months to get back to being relatively stable. So many people are stuck in their beds, housebound, for a very long time. Your donation no matter how big or small is so very gratefully received, Thank you so much for supporting us!
If you want to know more about the reality of ME/CFS, I urge you to watch the award winning film Unrest by Jennifer Brea https://www.unrest.film
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.