I am writing this on my 30th birthday (when I say my, I mean our) as a reminder of the journey we've taken and of things I hope to have changed, Learnt and accepted by the time I read this again!
Tonight I feel rotten, I know I won't have forgotten what it feels like to always feel ill, something I won't have changed by my 40th. I hope that I have accepted the things that I miss by now, if I haven't please work on this before I'm fifty!
How is the lupus now? Still alive and kicking as they say (or maybe they don't say that in 2024). Although you will read this and still be fighting, maybe even worse than it is right this second, remember how far we have come already!
There was the teenage angst years, when the unexplained aches, fatigue and issues with allergies sprung up out of nowhere! They weren't helped by the fact that I was such a gothic recluse. Or helped by the fact that everyone put it down to our hormones...so frustrating!
Then there was the uncertain 20's where we struggled to survive in a world where no one appeared to listen! Not just with the lupus, there were relationships, university, changing careers and of course the progression to full blown adulthood! Don't forget that you stood strong during this...especially if you are falling now... Because you really did do your 20's with integrity.
I can't tell you what our 30's were like, they are only just beginning but there are some promises that I can make to you...
Be kinder to ourself!
Remember how we beat ourself up constantly in our 20's, well I am starting my 30's rectifying this for us. I am not going to let the hospitals, doctors, friends, strangers or anything else get me angry anymore. We deserve that.
There have been too many days spent in fear of being ill and alone. We are not now, nor will we ever be alone. By the time I read this life could have evolved again with it's twists and turns, but I hope I have learnt to be gentler on myself and more forgiving of my shortcomings...like my brain fog! I can't help it and if others don't understand - that is not my fault!
Offer others as much help and support as I can give!
How am I doing this now? Is it a happier world out there? I hope so. I hope that there is more understanding of the disease and all invisible illnesses, but even if there isn't, I hope I am still pushing for this.
Have I started a support group? That was beginning to happen at the start of my 30's and with 10 years gone I hope it's worked out. If not then please remember to always offer our hand to others, even when we feel too weak to.
Learning to let go...
I hope by the time I read this again I have also learnt to let go. Oh god I spent so much of our 20's holding on to crap I didn't need...please tell me this has changed.
I hope I can say to myself that it is ok to stay in and rest. It's ok to let people down sometimes when I am too ill. It's ok to live our life in a happier way because we deserve it! If nothing has changed then let's make it so in 2024! Enough is enough!
Anyway, wherever I am reading this back to myself, I know I will be ok, because I have already been fighting for so long that I have earned my warrior stripes!
Keep smiling,
Love Cass in 2014
