Wow, what a week! It has been super busy, super stressy and yet super rewarding as well. Where to even start?
I guess the most important news is that Charlotte finally got a diagnosis for all her symptoms over the past three years. My mum offered to pay for her to go and see a rheumatologist privately. I found one locally to us who diagnoses many diseases, but specifically mentioned ME and fibromyalgia. He was so lovely, and was the first doctor who took my concerns seriously. We’ve really struggled to get Charlotte anything in the way of support or treatment since she became ill at the age of fifteen. I knew that her original diagnosis wasn’t the whole story because she had so many other, non-ME symptoms. I thought perhaps it was fibromyalgia, as she ticked almost every box related to that, apart from depression.
He listened to her describe everything she’d been through for the past three years, frequently shaking his head. He wrote down every symptom (and there were lots, well over twenty) and seemed to be grouping the symptoms, with the vast majority of them creating a list down the right-hand side of his page. An odd one or two (the focal seizures for example) he wrote to the left. Just before he examined her, he told us that he was pretty certain he knew what she had, but that he needed to do a few most tests physically before he made his final diagnosis.
He chose certain parts of the body and put pressure on those and asked if they were painful. He explained that in a healthy patient these areas would not hurt. Most were painful, sometimes extremely painful as she flinched, and one area (her ankles) were not painful at all.
He emphatically diagnosed her with Fibromyalgia – he said it was so obvious to him that that was what she has. He is taking bloods, writing to the GP to ask for a referral to the fibromyalgia clinic and specifically to a cognitive behavioural therapist to try to get her pain under control. We will be going back at the beginning of next year to see him again.
We left and felt like we were waking on air. For THREE years we had fought to get any kind of help or support. The GPs did the best they could with strong pain killers and amitriptyline to try to control the pain, but their hands were tied. She was not depressed or suicidal enough to access our areas mental health in order to get an appointment with a cognitive therapist. She wasn’t old enough to go to an ME clinic. My daughter had been fading away from us all, and she wasn’t ill enough to get treatment because she wasn’t suicidal! Does this sound as ridiculous to you as it does to me? Surely it would make more sense to make sure a child gets the help they need before they want to kill themselves, thus perhaps preventing them from ever wanting to in the first place?
I believe passionately in our NHS and am a staunch supporter but I have to admit to feeling a little let down. If I didn’t know how to fight for Charlotte; if I didn’t have a mum who could afford to offer to pay for Charlotte to see someone privately; if I didn’t have a daughter who fights with every bone in her body to not let this cruel illness rob her of every dream she ever had for her life; if Charlotte didn’t have an incredible boyfriend who is steady in both his love and care for her; and if she didn’t have such a close, supportive family who bolster her at every opportunity…well, I wonder if perhaps I would still have a daughter left to fight for.
We still don’t know what the focal seizures are and what causes them, but we are hopeful that we will get an appointment to see a neurologist fairly soon.
The other big thing this week has been Ads preparing to sit his entrance exam to Oxford. He has been busy beavering away, taking past papers and watching loads of YouTube videos from students who have gone before. He took the exam on Thursday, and was so nervous. But he needn’t have been. He is a highly intelligent, thoughtful young man, and came out of his exam radiating peace, confident that he had done his best.
I have found it very interesting watching my two younger girls working hard to meet their lock-down goals. Becca wanted to learn about Vincent Van Gogh and spent a good few hours reading a book about him all by herself and then writing an essay about him, again all by herself and without me even asking her to. She was so motivated, and so interested by his life and the events leading up to his death…she kept running to me and sharing all she was learning.
And Abs researched shortcrust pastry, found a recipe, wrote it in her book, made the recipe into jam tarts, which we had for dinner. Then she asked everyone to critique them and wrote down everybody’s views so she could improve next time. Again, she was so motivated and had absolutely no help at all.
Sometimes I wonder if I do enough homeschooling my clan, especially with someone as well educated and intelligent as Ads now living in the house. But I try to remind myself that each of my children is doing fine at life. Home school is not about educating them as if they were at school. For me, it is far more about teaching them to be hardworking, contributing members of society; it is about giving them the freedom and time to encompass all their strengths and passions. It is not school at home. It is living, breathing learning at their own pace, in their own environment, cultivating their own passions. And really, the two methods of education are and should remain incomparable.