Yesterday I wrote a rant about being only days away from my CFS diagnosis anniversary. Today I feel much brighter about things, but I thought I'd share it anyway to give people an insight into how I felt and how I'm likely to feel again at times over the next few days:
It hurts. It really hurts. I'm not sure I can even begin to describe how it feels to know that you've spent 3 years knowing what you're battling and yet still feel no further toward recovery than you were then. My chance of a full recovery actually reduces with each passing year of illness, and I'm certainly showing no signs of moving in that direction at the moment. I'm scared that I'll never not feel exhasted again but also scared I'll never experience normal tiredness again. I'm scared that the pain, tingling and numbness I'm developing is due to permanent damage to the nerves, and my face will never get normal sensation back.
It's difficult to know that a chronic illness has messed up what are meant to be some of the best years of your life..
A lot of my friends have only ever known me sick, which is scary and horrifying and totally breaks my heart. The fact they've accepted me for who I am now is amazing, but I wish they'd got to meet me when I could have run around and messed around carefree with them. I wish they'd known me when my smile was always genuine rather than often just being a brave face. I wish they'd known me when our lives were far more comparable and we had the same worries at the forefront of our minds.
I feel far from acceptance at the moment; I feel upset, frustrated and cheated. I can't move on properly with my life until I have accepted a 'new normal' but I can't accept that this is how life is going to be from now on. I'm desperate to get better, to be able to do everything I want to do, when I want to, to the best of my ability, and why shouldn't I cling to that when no-one can say for sure that it won't happen?
I'm tired of going to every medical appointment with that glimmer of an expectation that they will make things significantly better, that they will find something they can treat, that they actually do have that magic wand hidden that they've claimed not to have for the last few years.
I'm sick of taking at least 70 tablets and 28 inhalations every week and am scared I'll never get off them all. I'm sick of medical people talking about my distant future as if this condition will still be with me. I'm sick of constantly worrying about everyone else worrying about me. I'm sick of worrying about whether worrying will make me sicker. I'm sick of thinking about what I want people to know and what I'd rather they didn't. I'm sick of trying to look healthy in front of people to avoid them asking questions. I'm sick of people feeling awkward around me because they don't know whether it's ok to ask about my illness or because they don't know what to say or how to say it. I'm sick of feeling different. I'm sick of constantly needing help with things. I'm sick of always having a to-do list so long that just reading it exhausts me too much to be able to achieve any of it. I'm sick of always having my phone with me because I'm worried I'll be taken ill. I'm sick of constantly planning everything in advance. I'm sick of spending more time at medical appointments than having fun with friends. I'm sick of having people constantly watch over me but they can't help and I don't always know whether they're on my side. I'm sick of feeling like people are missing out because of me or that I'm letting people down. I'm sick of worrying about my next relapse- when it will be and how severe. I'm sick of constantly having to choose between what I want to do and what I need to do. But most of all I'm just sick and tired of being sick and tired.
3 and a half years of illness seems like a very long time. I'm glad I didn't fully appreciate the meaning of 'chronic' when I was diagnosed.. I was 17 when I first got ill- I was naïve and I'm glad I was. I thought I'd be fully well in a few months at the most. I never could have imagined this.
Yes my MEversary is just a date- but it does prompt you to look at the bigger picture, and with things the way they are at the moment, I don't really like what I see.
So yes, this is a rant from beginning to end, and no I don't apologise for that. I know there are people FAR worse off than me in the world, but right now my little world is far from how I'd like it to be, so I'll have a rant and a moan if I want to have a rant and a moan because this blog is mine and is to do exactly that. And I'm sure there are CFS'ers out there can relate to some of that..!
Any CFS'ers out there- I'd be really interested to hear how you deal with your diagnosis anniversaries..? Do you find them difficult?
So yes, they were my thoughts and feelings yesterday- soo happy and positive ;) Today I'm actually feeling alright about things. Physically I'm not feeling too great today- I'm in a lot of pain and have got a mild sinus infection (fingers crossed it stays mild...!!) and just feel exhausted and run-down, but I feel hopeful and have lost the haunted-by-my-diagnosis feeling that I had yesterday. I know this week is going to be challenging but today is not the anniversary so there's no point it spilling over into other days if I can help it, so today I'm going to look after my physical health and try to prevent a relapse from this infection and will be trying to stay positive :)