I have been struggling through a nasty flare up the past few days and as with any flare up it has raised some issues within my everyday life. Don't get me wrong, I am not going to moan about it, it's just made me think about how I live differently.
The main issue I have right now is trying to make others understand what a flare up means. That this is not a period of time where I can live my normal everyday life and I have to make tough decisions every day.
So this post is all about how I will live differently until the flare is over and more importantly...WHY I have to love differently.
I will have to make some decisions that will let down others.
One of the hardest things about a flare up is that I know in my heart if I do to much I will prolong it. Unlike an infection or the flu, a flare up is lupus at it's most pure! It's probably the only time you feel the disease and it's a reminder of just how ill you are....it makes you appreciate the good times a lot more.
However during the period of the flare...especially for me when the rash is here...I have to do things in a very specific way. You may want me to stick to all the plans I've made, but some of them I simply can't. I need to consider times of the day, staying fairly close to the doctors/hospital and at certain times of the day my body will simply stop functioning.
So please understand that if I tell you I'm too ill I do it with a heavy heart and sadness in my eyes. I will have calculated the risk to my health and the flare and come to the decision to stay home or sleep. It's never personal.
Sometimes the only way to understand a flare is to see it!
When I have a flare I get the rash....the dreaded rash that brings the pain and the swelling! You would think this would help people to see you are ill, trouble is I hide mine like many of us do. So during this flare I am going to break the cycle and say "this is why I am off work, this is why I can't move properly and why I am a little bit of a hermit right now!"
Also I apologize for the image but this is the reality!
Spending time with others in the daytime.
During a flare I need night time rest! My body needs to come back to a point of normality and I need to give it a break. Due to this I want to get out and be around friends (if I can) during the daytime.
I understand that many can't do this because they are working or busy and I don't mind that. All I ask is that if you fancy a coffee, chat or simply to say hi please do. This disease is isolating when it flares and I don't want to be alone 100% of the time.
Finally long term plans
This is where I have to be brutally honest, long term plans more than a day in advance, may well have to be changed or cancelled. I am sorry for this, I neither want it or can change it.
There are two things to remember. Firstly I will make sure that is plans change I will make them with everyone in mind. Not just me. Maybe I will come to a party for a shorter time or I will meet up with friends once I am well.
Secondly I have to consider the very real fact that flares can lead to serious complications. Very serious complications. So I need to put the lupus first right now. I don't like to and I am still a positive person but the ugly beast needs my attention right now.
All in all flares can be a lonely ride, but they are part of my life so I just have to smile, try and get up and remember it won't last forever.
