Writing from Scotland

A stunning rainbow. February 2012.

Regular readers will know that my teenage daughter, the Dafter, was diagnosed with ME/CFS in February 2012 and has been battling to recover ever since.  By mid-April of this year, she was able to leave the house every other day, was beginning to be able to read or do art a few times a month.

And then, she began to get worse again.  By the end of May she was hardly able to leave the house, much less get dressed and downstairs before the afternoon.  She was experiencing breathlessness, terrible itching, and awful leg cramps.  Last week she was hardly able to cross the landing to the bathroom without collapsing.  She was very, very frightened.  She is well aware that there are some people, including children younger than herself, who have such bad ME/CFS that they are tube-fed (see the Association of Young People with ME’s Functional Ability Scale).

Last Wednesday she was admitted to hospital for tests, as she hadn’t had bloods done in a year.  By the evening, the senior doctor told the Dafter that they could find nothing obviously wrong with her, and suggested she try Cognitive Behavioural Therapy again as “you need to train the mind to control the muscles”.   The doctor then decided the Dafter should go home.  It staggered me that a doctor who had just seen for herself that the Dafter could barely take three steps from her wheelchair, clearly gave no thought whatsoever to the Everest-like task that getting her home and up two flights of stairs represented.

We did indeed make it back inside in before 9 pm, in a state of some depression.  The Dafter was really scared to go to sleep, fearing she would hardly be able to talk in the morning.  Thursday we were both subdued, trying to reconcile ourselves to the situation.  And then at 5:30 pm, there came a phone call from the GP surgery:  please come pick up a prescription for iron tablets, 630 mg per day.  The Dafter was severely anemic!

The morning after she took the first iron tablet, she woke up at 7:30 and came downstairs under her own power for breakfast.  It was like a resurrection.  She has been simply amazed by the mental clarity and physical energy (relatively, of course) she’s gained.  We know that this is not going to bring about a complete cure, but it certainly explains a lot.  Instead of feeling as if she is going to sink into a coma and never get well again, the Dafter is singing to herself, so happy at the thought that she can eventually regain the ground she’s lost, and keep on going from there with her recovery.

From my perspective, I am profoundly thankful that the GP (who took the decision to admit her for tests) listened to the Dafter’s conviction that there was something new, very wrong, and worsening all the time.  I can see now that one of the dangers for those diagnosed with a chronic illness is that any health problem will be ascribed to it.  The Dafter was absolutely right, and I am so pleased that she now knows that she was listening to her body correctly.  Of course, we’re also delighted that this problem is something that is easily treatable.

And on we go!  So very, very grateful for small and large mercies.