Although I have chronic diseases that will be talked about I will also blog about the lighter side of life and anything I fine odd, amusing or strange. I am aiming for this blog to be positive and uplifting for me and maybe others.
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 shouldalwaysend 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.
If you are lucky enough to have people around you that love you then you’ll know why I’m smiling as I write this. I read stories of people whose support has fallen by the wayside. I suppose other people work all week, have there own families with a need to socialise and depressurise. unfortunately with a disease like Lupus it doesn’t work that way. We can’t decide to go out on the weekend our body dictates that. I could be in bed all weekend and then get an urge to jet to Ibiza on a Wednesday lunchtime. My counsellor once told me to ‘remember that I am in charge of my body and what I have done to it’ (Just to clarify she meant medical procedures not a boob job.) I had to disagree, I have not been in control of my body for 11 years and now I feel like I’m losing my mind too. The people around me, my husband and children don’t just help when I’m stuck in bed, they let me know that they understand that it is necessary. Everything they are and do means the world to me and more.
There are those days and sometimes even a few weeks where I find a state of peace and contentment. Often there doesn’t seem to be a rhyme or reason, obviously on a sunny day when your family are all at home and your pain is minimal all helps. Although they may be few and far between, these are the moments that can pull you out of a slump and remembering that these moments still happen makes me want to do what I can to aide my body in trying to fight the disease.
If you find something that works for your mood or your pain, stick with it. Oh, what an easy thing it is to say whilst knowing just how hard it can be. Recently I have been having an issue with a mild depression, My Dr. doubled my anti depression medication but also said it might be a good idea to try some light yoga, just some small movements and breathing exercises. It was a good idea, I felt like a yoga master until my husband informed me I was barely moving and in fact, thought I’d fallen to sleep. Unfortunately Yoga is what stated my flare of Costochondritis , which I do get occasionally and the pain takes your breath away. With that said, after my flare has passed I will be persevering with yoga but focus on a meditative type, even though there is a great chance I will end up asleep, oh well.
Anyone who has Lupus or knows someone with it will know that it gives you no mercy. Often when your down it puts the boot in , It’s the disease that just keeps on giving. So today and every other day I’m going to say Fuck You to Lupus, Fuck you to Kidney disease, Fuck you to Chronic Fatigue Syndrome, Fuck you to my mental issues and everything that comes with this nasty disease. After 10 years of having to put up with my illness’s my husband’s love has never diminished, he dotes on me just as he did 21 yrs ago. I was lucky to have my children when I was young, my boys have had to grow up with this disease and see how it’s ravaged my body. Never once have I felt them resent me for it, their love for me has never diminish and my love, appreciation and gratitude for everything each one of the does for me, will never diminish.
S. Set your own pace.
This has been the best advice I have been given and if you’re lucky enough to have a good support system, is the most important piece of advice. Unfortunately my mobility is very limited now but for those who can clean the whole house or have to, don’t wait until you’re red in the face and breathing hard to take a rest or even stop. If there are people in your life that would judge you because your house hasn’t been dusted or vacuumed. Then tell them to pick up a duster or piss off. I learned the hard way years ago, I didn’t recognise my limit and my blood pressure went so high I was throwing up. So remember, go at your own pace, prioritise and live your life. Don’t just go through the motions.