Its been hard trying to come to terms with my Lupus diagnosis, its been doubly hard is trying to explain what the disease is to friends and family, especially to those that you can tell, are not really listening.
Now, it has come to the time that I have to explain to my 8yr old. It had been relatively easy to try, as much as possible, to hide the illness from my children. (I have 2 kids, an 8yr old daughter, and a 6yr old son) However, as we are on mid-term break, or better known is Scotland, ‘The Tattie Holiday’ its been quite difficult.
Normally, in the morning, I get the kids ready for school, when the go, I can make breakfast and take all my medications. Have a nap around 1pm, recharge the batteries enough for them to be home for 3pm. But now they are on holiday, my daughter in particular, is noticing that I have to do these little rituals. I did try to give up the nap, but I would be exhausted by tea-time and get a ‘Loopy Brain’ as I call it, others call it Brain Fog Usually I would become clumsy, or I would forget to do things.
Today I had to go to the chemist to pick up my repeat prescriptions. My dr has a great way of ordering new scripts….I re-order what I need online and I can pick it up from my local pharmacy. So I went today and noticed I had a larger packet than normal.
When I got home, I noticed that my Dr doubled my prescription of Tramadol (painkiller) last couple of orders have been 30 pills 1x every 4-6hrs. Today I had 3 boxes and its been up to 2x every 4-6hrs. I had recently been to see the Dr as my flares in my neck and shoulder has been pretty intense, so I think this is why the dr upped the dosage, anyway, my Daughter noticed.
Why do you need all these pills mummy? Arent drugs bad for you? Why do you need to take them ALL…THE…TIME?
Like any normal 8yr old child, especially a daughter, they follow a question with a question I also knew that ‘Mummy is a bit poorly’ was not going to cut it, but I just didn’t know how to explain what Lupus is to an 8yr old.
One thing about my Lupus is I don’t have the usual rash feature, and I do not react to the sun light. I do however have a pigmentation under my eye, some dimples on my face and when I itch, I come up in hives which takes a while for it to calm down. Apart from that, I am mainly in constant pain and very fatigued.
Thankfully, I knew my daughter just learnt about the human body in school, organs such as the heart, kidneys and blood cells. So I thought I would try to explain it as simple as I could. I asked her if she remember what she learnt in school about the red cells help to keep your organs nice and healthy, it comes from the heart and pumps around the body. She said yes, and that the white cells also keep your body healthy and if something goes wrong they are like little soldiers who will go into battle with things like the flu, or a cut and heal the body. I told her in my case, for some reason the little soldiers in my body have just got a little bit confused and will try to fight my body even though it’s already healthy.
I told her to imagine that the little white cells are sitting in a big room in my body, with little helmets on, at a table playing snap, and mummy is doing laundry…I sort out the laundry, I take the laundry to the washer, I transfer from the washer to the drier and then start ironing. Because mummy is busy moving her arms and legs, on her feet all the time, the white cells sitting playing snap think ‘uh oh, something is not right’ so they all rush to my elbow, or knees and start trying to fix it. I reminded her of the saying ‘If its not broke, don’t fix it’ Well, it’s what my cells need to hear, they will rush to my elbow to fix a problem, but is not broken, and when they try to fix it, they break it. Which is why mummy ends up sore and why I can’t raise my arm above my head.
Then she asked if the pills I was given was to make me better…this was the first time in my diagnosis I was made to accept that no, I am not going to get better, that I am on medication for the rest of my life. I told her that I am on the pills to help make me feel better, but it’s not going to stop the cells from fighting with me, some days I might feel good, other days I might feel bad but if I didn’t take the pills I would feel bad all the time and would get very sick without them.
I explained to her that no-one knows why Lupus happens to some people, she thinks since I broke my foot last year, my white cells worked hard at making it better that now they wont stop trying to fix things in my body, and I am fine with that, its her way of understanding.
I doubt very much that this will be the last conversation we will have on the matter, I know that she has been curious for some time, as the ‘grown ups’ have talked about it and she has heard the word Lupus been mentioned, she knows I get sore bones but doesn’t know why. Previously I have told her I am getting old, and she scolds me and tells me I am not old.
One thing I really tried to be conscious of was not using the word ‘disease’ Last year a family member developed Breast Cancer and had to undergo aggressive treatment which made that person very poorly. The word Cancer was never brought up with my daughter, however, the person it involved told her she had a very nasty disease, and will get better. She now looks at the word disease as a very bad illness, so I tried hard not to use that word, illness was what I substituted it too, she looks at illness like having a very bad cold. And I thought like a cold, some days/weeks I could feel great, then, like a cold, I could be in bed
As I said, I don’t think this is the last conversation we will have about it, but I am glad we have started the ball rolling and maybe now, I can start trying to figure out ways how to discuss this with the children and maybe allowing them to feel comfortable enough to talk to me about it.