As A preface to this blog, I really wanted to post it on World Lupus Day but My body decided to celebrate the whole week leading up to said day to have a massive flare.
It’s been ten years since I was diagnosed with Lupus. You may think that sounds like hell, well it is. For the most part Lupus and everything that comes with it is awful, but there are times that I feel normal and sometimes even positive. So in honour of Lupus awareness month I’m going to try and give you a glimpse of both, starting with the negative of course, you should always end on a positive note.
To begin with there’s a loss of control. Suddenly you’re bombarded with appointments for blood tests, biopsies and scans. As you wait for the results you start to lose confidence, You realise that the rash on your face can only be dulled, the pain in your joints has no cure and not only your confidence but your independence begins to diminish. For most this is followed by a loss of mobility, cognitive function and with that, goes most of your friends.
It took me a long time to wrap my head around this illness, how can your own body want to destroy itself from the inside out?As I’d try to explain what’s going on, people would look back with a blank expression and ask. What can they do about it? To which the answer, as we all know, is absolutely bugger all. But then if someone would have told me 11 yrs ago that there was a disease that puts you in constant pain, that attacks joints and organs as well as there being no cure, I would myself be incredulous.
Well most people know what pain feels like. On a daily basis People get headaches, joint pain, Sore rashes and sensitive skin,muscle cramps, fatigue, water retention, mouth ulcers, high blood pressure the list could go on. But with Lupus we get it all at the same time, every single day. That doesn’t trump any pain that you have, its just my way of trying to explain the madness of it all.
This is a recurring thought that crosses my mind and others I suspect, especially when it comes to family. For instance I have spent the last week in bed due to a flare up and of course I feel useless. No matter how many times my husband reassures me that I’m not, it still crosses my mind, even more so when you get out of bed and see the large butt groove in the mattress. As well as pain, the fatigue is just punch in the gut. So when I am feeling okay to help in the house it doesn’t last for long and it just compounds the uselessness.
This is a state of strong desire for sleep, or sleeping for unusually long periods. There are several things that cause this from medication, fatigue or even just a vitamin deficiency. I have had this a many times since I was diagnosed, it has lead to me sleeping 16 hours, 24 hours and sometimes days. My husband would wake me up to use the toilet or take my medication and I’d go right back to bed, still uncontrollably tired.
Now I am going to attempt to tell you something positive, which is ironic because I’ve had a flare for over a week now and I am not feeling at my most positive. It’s taken me over a week to get to this point of the blog which would usually take me a day or two at most to write.