I have been reading a lot of other peoples concerns, questions ad Lupus stories recently. There are many parts that make our fights personal to us, but there are some common themes - the one that seems to stand out the most is what it is like to have Lupus.
So today I am going to try and answer this....if my brain will let me. I will try and provide an overview and a brief look at the daily battle between life and Lupus.
What is it like in general?
In general Lupus gives us something different on a daily basis - well at at least it's kind enough to not leave us bored. Some days I will have swollen joints, some days my brain wont work, others I can have itchy skin from head to foot and feel constantly sick. No two days are the same, but there are some constants for me.
Everyday for me feels like I have the flu, that is the one constant, resounding feeling. You know the achy, tired and slightly sick feeling you get with a flu - it's not pleasant but it's manageable. I just don't feel well and this feeling will usually get worse throughout the day, so by 10PM I am wiped out, knowing that once I have slept I will have to get up and do it all again. Another constant for me is pain in the soles of my feet, the kind that in the morning it makes me feel like I am walking on broken glass ad by the evening it hurts to put any weight on them at all.
After this, my Lupus becomes a bit of an enigma and extremely hard to pin down. Sometimes I will have a bad stomach, sometimes I will have migraine type headaches and other days I will have swollen lymph glands the size of apples (slight exaggeration here). The reality of Lupus is that it can take on so many forms, you can never quite get to grips with one before another rears it's ugly head.
What is it like to have a flare up?
Flare Ups are one thing that all Lupus fighters will have become accustomed too. What I described above is just an average day in my life, flare ups are an entirely different entity and if you don't recognize the sign that one is coming they can floor you with a single punch.
A flare up is the point in time when your disease has become "active", meaning that your immune system is actively working to destroy your soft tissue and mind. For me, flare ups are just unmanageable; I cannot function at all - take this Saturday as an example - woke up, stood up and thought "God no I cannot move" - Literally I couldn't function on any level at all. I did manage to get dressed, but my clothes were all inside out and back to front. I had zero appetite because I felt so sick, my head was throbbing like there was a pressure cooker inside it and my hands felt like they were constantly in a vice.
These are the times when you need to ask for help and support. It may be physical support, like help with cooking or cleaning, or mental support which is what I generally need. Just to plow through, keep my head held high and keep smiling.
What is it like to fight all the time?
Honest answer? Exhausting. I am so exhausted that I could sleep for a month quite happily, but I would miss my life and I will not let Lupus ruin a second of my time - well if I can help it. There are times when my fight feels fruitless, there are times I want to give up, but most of the time I don't consider it. I get up, I get dressed, I go to work and I go to the gym. I am no different to anyone else, we all fight through stress, work, life in general. I am no different to you, I just do things in a different way.
