This weekend I travelled to celebrate my grandmother’s 90th birthday. It was a wonderful celebration and we all took turns to honour her and to celebrate her impact on our lives. I enjoy being together even though there is always tension, fighting and drama. We only come together on major celebrations or funerals. Mostly I love seeing my cousins – all of them crazy, fun and loving with their own special quirk to add to the occasion.
Of course many people asked about my illness. I’m generally an optimist so it’s awful to discuss something that is so long term and that improves so slowly. People don’t like to hear things like it’s a lifelong illness and I won’t ever be ‘better’ or that I’m not functioning well enough to work yet. I don’t like saying it and people don’t like hearing it. They want to hear that I’m so much better and that it’s all behind me.
But I do have to be honest. For years I have ignored my symptoms and put on a brave face as if everything is OK. But it’s not. And I can’t do that anymore. If I say that I’m completely well, they don’t understand why I can’t participate in the way I’d like to. All the cousins went outside to sit on the couches at a point in the dinner. The weather was pretty cold and wet and my immune system simply couldn’t handle that. So I sat inside with the old people and listened to their conversations. I do feel that I missed out because I would have loved to spend more time talking with my cousins and being part of their lives. But I just couldn’t do it. It was a strain enough to catch a flight and stay up late.
I often wonder if I’ve invented this illness or if it’s psychosomatic. And I’m sure there are people who think that too. Graves’ disease is quite an obscure illness and many people don’t really know what the thyroid is for. Isn’t it like a tonsil that you can just remove? Not at all. Hormones are responsible for the proper functioning of our bodies, male and female. We would die without hormones driving the various systems. Thyroid function affects metabolism, the digestive system, the reproductive system and most importantly our energy.
I don’t think people truly grasp what happens when you have constant fatigue. I am a seriously driven person and I continually ignore signals that I’m feeling tired. I can sustain a certain amount of activity but it does catch up with me. And it’s a constant worry whether I’m doing too much. I need to budget my energy to make sure I can care for my children and do the most basic of human activities. It will probably take about two years to return to ‘normal’.
I do take a lot of care of what I take into my body. I’ve cut out caffeine and alcohol and I’ve limited a range of other foods. There is so much sacrifice and I wonder what kind of a difference it really makes. People keep telling me that cutting out sugar will have a large impact on my energy levels. But is life really worth living without some indulgence? Chocolate is one of my few pleasures in life and I’m not ready to give it up.
Last week due to the training course, my energy was dramatically affected. I developed a cold and struggled through the week. Then this trip on the weekend. I’ve almost lost my voice and I’m constantly tired. It will take me another week or so to recover from a half day course of four days. I’m needing to take naps again in the afternoons as I can feel that I’m not getting enough sleep.
When I doubt myself, I try to remind myself that there are blood tests that show I’m ill. I’m not pretending, I’m not just being pathetic. The only path to recovery is to rest and to look after myself.
At least now that I’m listening to my body, I know when I’m taking strain. I know when to care for myself more and to limit the outings. I have days where I can’t listen to the radio or any music in my car because I’m so frazzled. I have days where I’m too tired to crochet in front of the TV – I need to just lie there. That is not imaginary and it is not me.
On a lighter note, I have established a wonderful space for myself at home. I call it the ‘sanctuary’. I have furnished it and decorated it with things that are meaningful for my recovery. I have a few small things to buy but it is operational. When I’m in my sanctuary I feel safe and happy and peaceful. It is my space, just for me to be creative. This is the space where I can heal and recover, and ultimately deliver some of my best writing I hope.
My family is full of extroverts. There is a lot of vying for attention, arguing and shouting each other down. I marvel at the chaos when attending these functions. Extroverts don’t like to talk about things that are deep like the meaning of life. I find it hard to cope with hours of small talk when there is so much to be discovered and shared. But family is family and I do enjoy each of them in a different way. I was so glad to make the effort to get there and it was well worth the strain I put on myself. I can now curl up in my lovely chair and enjoy the solitude of my sanctuary while I recover from the trip and the training course.