A story to help children of those with #ChronicIllness
My husband Tom is a member of the Royal Navy and we have two young daughters. In 2017, Tom completed a Land's End to John O'Groats bike ride - a distance of 1000 miles in just 5 days. Following this, Tom became extremely fatigued and bed bound unable to do much more than go to the bathroom. After months of tests, and 'ologist' appointments, a diagnosis of M.E/CFS was given. Our daughter, then 3, struggled to understand what had happened and became anxious. This prompted us to write a story which helped her understand and come to terms with her dad's condition which is called 'Supercharged Superhero' (now available on Amazon). It is really for any child who is coming to terms with a sudden change caused by #InvisibleIllnessTom is so fortunate to have received medical care from a RN Recovery Centre with an amazing #OccupationalTherapistOver two years he has worked with his medical team, beginning with his cognition and concentration, then later gently helping him to physically become stronger through pacing and careful monitoring. He’s recovered enough that he is able to access family life in a way that we thought he could never do again. Tom will be medically discharged from the Navy at some point this year but is hopeful that his chosen career path will enable flexible working which will make things manageable. He still has bad times, the crashes still come and he doesn't always manage his condition as well as he could but we are so incredibly proud of the steps he has made. We are incredibly grateful for the things he is able to do with us. To quote the book: "Things are just a bit different now, That doesn't mean I should be sad. Time together's more precious than ever, Slowing down's not really so bad. We get to enjoy the little things, The bits we used to miss. When we were always rushing round, Doing that and this!" A lesson there for the world right now as we are locked down and isolated.#MyalgicEncephalomyelitis #MECFS #pwme #Fibro #Lupus #Fatigue #POTS #LymeDisease