So, the past week has been tough. I’m still recovering from the wedding but I still feel that it was totally worth it. So when I’m feeling a bit down I just remind myself of how amazing it was to be there.
Today though I had to get up and get myself downstairs because I had an appointment – the O.T. was coming round to assess me and our house. Truth be told I was a bit nervous about this, not least because I had to talk to someone new, but because I had to be open and honest too. That’s something I’ve been working on, dropping the front and telling people just how hard things can be. This is all thanks to my appointments with my psychologist. I was also worried about what she would say – would she think we need help or would she think we were wasting her time?
Well I’m pleased to say that it went really well. She was lovely and understood when my words were muddled or when I could only climb a few of the stairs. She left with a list of things that she is going to order to help me, help us.
Oh crap I just started crying! It’s hard to describe why though. I think it’s a feeling of relief. Relief that the authorities are helping, that they aren’t just disregarding M.E., that we are actually being helped without having to fight, battle, exhaust ourselves to gain a victory.
At the same time though there’s this little bit in the back of my head saying “Rhoda, you are 28, you shouldn’t (that is an evil word which I am trying to eradicate from my vocabulary!) need a stool for the shower or a frame for the toilet”. I’m quite annoyed with that bit of my brain…you see I’m learning to accept my life as it is. I’m trying not to compare my life now to my life before…or the life of my friends. Part of that is accepting help, accepting that our lives have limitations and embracing that. Does that make sense?
So yes I might be 28, walk with a stick, use a wheelchair and potentially require a stairlift, but that is just me. That’s who I am. Things might change, they might not. But right here, right now that is what I need, what we need, to operate, to get the most from the life that we have right now and the majority of my brain now accepts that.
So I’m sitting here now thinking about how lucky I am. For three years I’ve known how it is to feel alone, like no-one cares or wants to help. Now though I have a support team that isn’t just my family and friends. I have an O.T. who is there to support me and I have a truly amazing clinical psychologist who is determined to help me.
I truly feel that going to see the psychologist was the best thing I’ve done in these “M.E. years”. Living with a chronic condition requires a new mindset, I might not quite be there yet but I’m certainly a million miles better than I was….and I aim to improve.
Life is changing, my health might not be but I no longer feel like I’m free-falling. I fell like there are more people there to catch me and stop me from falling too far.
“Understanding is the first step to acceptance, and only with acceptance can there be recovery.” – J.K. Rowling