I'm still battling this flare up, which seems to want to try and take me out at each and every turn.....Bring it on Lupus, give it your best shot!
One thing that I have found the hardest thing to fight is not the pain, the dizziness or the complete lack of memory! It's the isolation in my own mind. Yes I don't mean physical isolation, this is all mental.....Litteraly.
What is mental isolation?
Now, what I mean by mental isolation is the feeling of being completly alone in the battle, having no one around that truly understands what's going on. This maybe because I am not in work, not around as many people as normal and not distracted. Whatever the cause it's almost as upsetting as the disease itself.
I have caught myself watching my phone to see who wants to chat. When I catch myself I have to say "what are you doing?" But when you just want to make someone see what's happening to you it is an almost inconsolable feeling.
What am I going to do to change it?
Now I know that not everyone is going to understand my battle. Unless you have to do it you don't get it. I also understand that this flare up doesn't just affect me...no my loved ones, co workers etc will all be feeling the effects. So I have to remind myself that there are people around that are.
Next I have to make sure that I don't isolate myself physically. If I can get out I will, maybe have a friend over for a coffee or similar. As long as I am around supportive people then I am ok.
Then I am going to write. I have noticed that the people who I thought would text or ring haven't. This has upset me and I know many people who found the same. So I need to stop being upset about this and start being open, start letting the people who do contact me know that I am upset and bringing them into my life in a bigger way.
Slowly I am beginning to build up a support network of people who do really care and understand as well as they can. This is something to celebrate because it means that I am not alone in this. Now that the blog is going I hope that I can also offer this to others who maybe feel as lost as I do right now.
Finally, if you don't know how to say hi to someone with a chronic illness, remember they are just like you...no different. So say hi today.....
