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In the Beginning…
It started small. A pain in her writing hand. Some pain in her feet. I brushed it aside. She was taking exams, of course her hand hurt! And her feet? Well, she has had flat feet (and all the associated problems) her entire life. I honestly didn’t think anything of it. When Charlotte, my then fifteen-year old younger twin, started to get pain throughout her whole body, I began to be concerned. But when she’d come down in the morning, her face grey with pain, crying because she had been unable to get to sleep due to hip pain, I knew something was seriously wrong. My usually vibrant, over-the-top, vivacious child was becoming lost under the strain of being in constant pain throughout her whole body.
Another Day, Another Doctor, Another Diagnosis
Of course, I did what any mother would and took her to see the GP. Three doctors later, and we had three different diagnoses. None of them were correct. I knew this with the certainty only a parent who had spent every day with her child could know. Charlotte was becoming increasingly distressed. Not just because she was feeling rubbish, but also because she felt no doctor was taking her seriously. That was when the mother bear in me took over, as I frog marched her into the doctors’ surgery, demanding that I see a doctor who would be willing to get to the bottom of Charlotte’s ill health.
A Shadow of her Former Self
At this point Charlotte was on pain relief 24 hours a day, and yet was still in pain, and she had begun falling asleep: at the table whilst doing her school work, on the sofa whilst watching a video, and most tellingly, on the chair when she was reading one of her beloved books. If anything told me she was seriously ill, it was that. This is the girl, who at five, used to read under her bed covers at night. At thirteen had read Les Miserables and War & Peace. Books were everything to her. Now they were tossed aside in favour of sleeping.
This was Charlotte. A shadow of her former self. With an increasingly alarming expression of fear and hopelessness on her face. My girl who loved life and was excited by everyone and everything, now spent her days alternating between crying and writhing in pain, to sleeping flat out, sometimes for four or more hours at a time
To say I was worried would be an understatement of titanic proportions.
An Accurate Diagnosis at Last!
After traipsing around GPs, physiotherapists, sonographers and out of hours doctors and A & E, we were tired, and not just because of the illness. We were tired of dragging Charlotte this way and that. And Charlotte was exhausted by it all.
Demanding that one GP saw us through to the end was the best thing I did. Charlotte could not be palmed off any more. And this doctor finally took us seriously. He ordered every blood test under the sun and referred us to every doctor he could think of who might be able to help us with a diagnosis.
This was one step towards recovery. At last we would have an answer.
It was when we saw a children’s rheumatics consultant that we finally got to the bottom of Charlotte’s illness. He took a very thorough history and examined her. Putting together the fact that our family had been floored by some infection (Glandular Fever) the winter before (around the time her symptoms began), and her exhaustion and generalized pain, he finally diagnosed her with chronic fatigue, or post-viral fatigue, otherwise known as ME.
At last we knew what we were fighting. And this mama bear was primed for battle!
Let the Battle Commence
Research, research, research, my whole day was taken up with learning more about this illness which had devoured my daughter. I got my hands on anything I could find, especially other people’s experiences with ME.
ME, it seemed, could last a life-time. It was controllable, but not guarantee-ably curable. Teens had the best chances of getting better. In that moment, I decided that I would only talk in terms of Charlotte achieving full health once more. This was to be one of the most important choices I could have made.
One of our friends is a nutritionist, and very kindly offered to do a consultation for her. We made many changes to Charlotte’s diet, but the one which made the biggest improvement to her pain levels was cutting out dairy. This was huge for Charlotte because almost every food she enjoyed the most had some sort of dairy in it. However, within days of being dairy free, her pain levels subsided to a manageable level. She has not eaten any kind of dairy since – no cheese, no milk, no butter, no chocolate…
Charlotte also drank litres of fresh juice each day. This helped give her the energy she needed just to function. Steph (the nutritionist) had recommended turmeric and ginger which we were able to find fresh and could add to the juices we made. If we didn’t have time to make one, we bought them in. These seemed to be just as helpful in terms of Charlotte’s energy levels.
Sometimes parents must make tough decisions for the sake of their children, and one decision Gary and I made was to work hard at keeping the evenings free of any kind of stress. Because Charlotte and her friends are teens, there is always something emotional going on! I discussed with both Charlotte and Lillie about putting their phones away at eight every night and finding a series to watch on Netflix which they would find entertaining and relaxing.
Bedtime was 9pm every night, and Lillie was so great at supporting us in this so Charlotte didn’t feel like she was alone in going to bed early. Over time we began to see an improvement in her sleep, which meant that she was not quite as exhausted during the day.
This, I think, would be tough for any parent. Charlotte needed some sort of pain medication throughout every day. In the main, we followed the doctor’s advice. She took paracetamol every four hours. On her worst days she also took Ibuprofen every four hours but two hours later than the paracetamol. Very occasionally (maybe three times in total), after nights of not sleeping due to pain, I would give her Ibuprofen with codeine. Each Friday and Saturday night, when she was working at the take-away, she took paracetamol with caffeine. She doesn’t drink hot drinks, so coffee was not an option. This seemed to work well.
I hated the fact that she was taking so much medication, but actually once we had got the pain under control, we found we could reduce the medicine to just the paracetamol every four hours. And, I think for Charlotte the medicine was an indication we were taking her pain seriously. It allowed her to keep doing things that without pain relief she would have been hard-pressed to do.
Tackling the Sleep Problem
At her worst, Charlotte was in pain throughout her whole body. Her bedroom at the time was under the eaves of the roof of our 200-year-old cottage. She had to bend to get to her bed. It was also in the coldest area of the house, being in the corner with two outside walls and directly under an old, uninsulated roof. It also had only a tiny window, so there was not much natural light.
Charlotte was spending more and more time in her room because she felt so rough. She needed sunlight, warmth and no bending!
A Change of Bedroom
Lillie, bless her, offered Charlotte her room which was larger and warmer, with a lot more natural light. At this point, Charlotte was almost a year into the ME and I could see was beginning to lose hope that she would ever feel normal and well again. Our whole family pitched in to ‘bolster Charlotte up’. Thomas stepped up to his big brother status, and encouraged, hugged and basically did anything we required of him. Lillie gave up her bedroom and with it her much adored art studio. She did so willingly and with such a great attitude, wanting to do anything which might help her twin.
I used this as an opportunity to take Charlotte’s mind off how she was feeling. Together we plotted and planned her ‘new’ bedroom. The first thing I did was research the best bed for her. Figuring, if I could help her to be more comfortable at night, she might sleep better, and then start to feel a bit better. I chose an orthopaedic bed with layers of memory foam which would support her body no matter how she lay. I also changed her duvet to a very lightweight, but warmer tog, one which I hoped would be kind to her joints.
Gary built wall-to-ceiling shelves for her to keep her ever-growing collection of precious books. Granny donated an upright, extremely comfortable chair and foot stool. This was placed by the window so Charlotte would be near to natural sunlight as much as possible.
Something Special from her Mummy
Charlotte and I are very close. I knew I wanted to get her a little something just from me, which would show her how much I loved her, and how much I was willing her to get better.
So, I searched and searched for a perfect, huge patchwork quilt to throw over her comfy chair. What I wanted her to have was something soft, warming and homey so that when she was feeling down, she could wrap it around herself and imagine I was giving her a cuddle. I found the perfect one on Etsy. It was hand stitched, pastel coloured and over 150 years old. She loved it!
Words are very important to Charlotte and were my way of fighting this invisible illness. I talked daily in terms of her healing, and how God was teaching her valuable lessons through this. The whole family used words of positive affirmation, reassuring her that God had this. I encouraged her to pray, to use this time to grow closer to God. Anytime she was near, I would extol how brave she was being, and how proud I was of her incredible attitude towards her illness.
We also chose and hung art work consisting of encouraging Bible verses, life statements and uplifting quotes. I surrounded her with beauty. She woke up to it in the morning and went to bed with it at night.
Keeping Things as Normal as Possible
Something the GP had specifically said was to make sure Charlotte didn’t just lie on the sofa doing nothing. Depression was a very real risk with ME, especially in teens. So Charlotte got up when the rest of the family got up. She did chores just like everyone else, although we did give her the easiest chores.
I also insisted that she do some school. Between us we chose Classics as the subject she focused on. I researched ways to deliver this which did not include writing. At this stage, Charlotte was unable to write at all due to the pain in her joints. I had her read books, watch YouTube videos and different films. I was led by her with regards to how much school she did, but I insisted she did some.
One afternoon, I found Charlotte sobbing her heart out. I pulled her onto my lap and we snuggled as I tried to calm her down. Charlotte, a writer through and through (she has already written three books) was missing writing as much as she would miss her arm if it had been cut off. Writing had always been such an important way for her to gain mastery over her ever-strong emotions and to make sense of the teenage world around her.
For Charlotte, writing was as vital to her as breathing. Gary and I chose to invest in a lap top and bought the best voice activation software we could afford. This allowed her to write using her voice rather than her hands, and kept that all important flow of words, expressing how she was feeling. This was so important to Charlotte.
Another thing I added to her daily routine was a bath after lunch, followed by quiet time – during which she snuggled into bed and slept if she needed to, or listened to her music if not. More often than not she fell asleep. I left her to sleep for as long as she needed to.
Whilst I became stricter as to when she saw friends, I encouraged her to see some friends daily, if she felt up to it. I found this got her ‘out of her own head’ which was so important. She was always more visibly relaxed after spending time with those she loved. However, she only saw them in the afternoon before dinner. This worked well because it meant we could still keep an eye on what she was eating, ensuring as much nutrition as possible, and it also gave her some down time with the family before going to bed.
Sticking at her Job
I encouraged Charlotte to maintain as much of her normal life as she could. I knew that would help her stay mentally strong and would keep her fighting the illness rather than giving in to it.
Charlotte works at the take away at the bottom of our road. It is a two-minute walk away and is run by a lovely Chinese family, who have taken in Charlotte as if she were one of their own. She works three hours on a Friday night and three hours on a Saturday night. This is an ideal job for her as she can sit down for the majority of it, and each shift is only three hours.
I was very mindful of what went on during the day on a Friday and a Saturday. We would keep school work to a minimum and I always encouraged Charlotte to have a sleep during the afternoon before her shift started. She also had a fresh juice just before she started, which always boosted her energy levels.
All’s Well that Ends Well
When ME hit my younger twin fifteen months ago, it affected our whole family. Life as we knew it changed. The focus was on Charlotte. Our family needed to come together and work as a team; the other four children had to understand that Charlotte needed to come first during this season of ill health; and each and every member of our family needed to make sacrifices. As a family unit we have become even closer, as we have worked together to enable Charlotte to have the best possible chance of recovering from the ME.
Today Charlotte is completely better. After fifteen months of hellish pain and fatigue, she is pain free and today does not take any medication at all. We took a year out of homeschooling full-time to focus all our energies on getting her well. This was a year well spent.
I now have my energetic, loud and opinionated girl back again. Life has suddenly become much noisier.
And I couldn’t be happier.