I am running the Royal Parks half marathon in October to raise awareness and funding for Invest in M.E. as my daughter has this illness.
Many people don't understand the life changing affects CFS/M.E. brings upon day to day life, such as not being able to do the basic tasks that many of us take for granted. There are no tests to diagnose CFS/ME and there is no current cure. Some people recover totally, and some people have to live with it for many years and never recover. An extremely simplified ability scale can be seen as shown below, at her worst Annabel was moderate to severe.
Mild - able to work, but must 'manage' symptoms
Moderate - can't work, predominantly house bound
Severe - bed bound, requires home care
Invest in M.E. don't have any government funding like other charities so I would like to ask everyone to donate what they can afford as every penny will get us one step closer to finding a cure.
My daughter had shingles in 2014, and never fully recovered, she suffered ongoing exhaustion, lethargy, constant nausea, post exertion malaise (PEM) weakness, stomach pain, food intolerances, skin rashes, poor concentration (brain fog), memory loss, headaches and anxiety. After many doctors visits and blood tests she was initially diagnosed with post viral fatigue, and then chronic fatigue syndrome / myalgic encephalomyelitis CFS/ ME.
Annabel became so poorly that she was unable to attend school, she was housebound and only left the house for doctors appointments, which impacted her hugely and made her increasingly unwell. Fortunately toward the end of the summer term of 2017 Annabel started to receive home tuition, when she was well enough, in maths and English for 40 minutes in each subject. She gradually increased this to 1 hour of maths and English each week, enabling her to take her maths and english GCSE this term. She also took art GCSE.
Annabel has to ensure that she plans (paces) all her activities every day, including basics such as showering and washing her hair, in order to be well enough for her lessons, or any other activities. All activities use up valuable energy. Doing too many activities in a day will cause Post Exertion Malaise (PEM), which is often delayed and occurs 24-72 hours after the activity.
We have seen some improvement in Annabel recently, perhaps down to her regular acupuncture, supplements and a change in diet recommended for the illness. She has a place at the local 6th form college where she is hoping to attend and take 2 A levels.