Well, it is Monday Morning again, and very early as well. I hope that you had a restful and enjoyable weekend and that you are ready for all this week has in store for you. I had about ten hours sleep last night so for me that is like a month all at once, and now have woken with all this extra energy and my brain on overdrive. I am a walking medical nightmare at the moment and I find it isn’t always easy to put into words the pain I feel every day, I have many reasons for this and today I am going to share some of them with you, mainly so you can see that not all illness can be seen or noticed.
You saw me from the outside but have no way of looking in, so it’s unnoticeable, it’s invisible, I am used to making it ordinary, it’s nothing for you to muse over because I have made it appear neither directly or a problem to those I know or deal with. Sadly my relativity is not this veiw…it’s waking up exhausted, then attempting to continue my daily routine, going to bed knowing I can’t sleep for the malaise, knowing that exhaustion knows me by my first name…I have no control over how I feel. I question whether the mask I hide behind really is the answer, should I stop with the “yes, I’m fine, thank you, how are you?” as I am smiling and trying to ignore the demons gnawing away at every part of my body.
I am never sure if I am amazed or offended when I have those who know me try to explain to outsiders why their ‘healthy looking friend’ cannot function as anything more than an illusion unable to answer for herself. I hate it as my friends explain away how I “am just not having a good day” and being told this is how I feel. I really do not have any fight left in you to tell them that they’re wrong. It can not be seen therefore it must not be real. I had a doctor tell me that is mainly middle aged women who are seeking attention and this is how they are doing it.
No, it is not…it is dealing with ignorance, a misinformed perception, destroying relationships, it is you having to cancel your plans, it is that sense of utter relief you get upon reaching home and turning off the false happy face, allowing yourself the freedom to stop pretending and crumble in the only space you feel secure.
I live with an emptiness on the inside that is constantly smashing the exterior into something I can not control and do not recognise, with that there is the vivid emotion, the sadness, the isolation, the worry, the misery, the anger, the guilt, the paranoia, the lack of normality, forgetting how I used to identify, my confidence and sense of self-worth. I can no longer remember what it was like to be pain-free. I am still not certain if this is a life deciding condition or simply one that restricts you. I live for those exhilarating breaths of fresh air as my pains drop below a five and I have that brief relief before the ‘force returns’
This is my reality, the physical pain, the emotional conflict that it creates, and then I have the games my demons love to play. I struggle with each day and yes, there are days I would give anything to have what is view as ‘normal’ but then I think about how many of my 55 years I have been hiding this from the world? Ten years ago I meet a doctor that I trusted enough to be honest with and started on this road to recovery and hopefully some repair, before then I did everything I could to pretend I was ‘normal’. I guess the reason for me sharing this is to ask you to never assume that your friends or family are coping, ask them if they are okay, do not be scared to ask for help! Please never suffer in silence there is always someone out there who will listen and more importantly understand.