It very easy, when I am stood in front of you, to forget that once upon a time, I couldn’t hardly even walk a step. That I struggled to string sentences together, and hold a conversation. I couldn’t think properly, remember properly. That I would often stand up, then instantly fall down. That I sent 2 years of my life, mostly bedridden. That I had to use a mobility scooter to get about, 2 walking sticks, and a stair lift to get upstairs.
I was diagnosed with Brain damage in my memory centre, and also brain damage where my balance centre communicates with my brain, hence why I kept falling over. I couldn’t even look at patterned floors without my poor brain getting confused, and getting horrendous vertigo.
Being told I have M.E almost seemed wrong, but that the diagnosis the neurologist gave me. They don’t know what caused the inflammatory damage in my brain, but its still there, there is no cure. So I had to learn to manage.
I fought really hard to come back from this, I had specialist physiotherapy, and still have to fight every single day. I am literally covered in bruises where I constantly lose my balance and smack into things. My memory is horrendous.
I do ok with a bit of help from gadgets to remember to do things, but it’s a bit of a running joke with my hubby, and best mate, about my lack of memory…
I am in constant pain, its hard to imagine that, when you look at me, and I am smiling, or laughing, or having a joke, I have become great at hiding it. When you see me hobbling, thats because its so bad I can’t hide it. Some days every step can be pure agony. I was eventually additionally diagnosed with Fibro as well, just to add insult to injury.
My mum got me a pony and it was my pony that became my therapy pony, he saved me from becoming too depressed and gave me a reason to keep fighting, and then eventually led to Spirit my wonder horse.
Spirit helps me fight every day, and now he has laminitis and is sick himself, I fight for him. I have to do it at my own pace but I fight for him. It’s frustrating when people don’t understand why I can’t do this, or can’t do that, but its not because I don’t want to, its because some days I just physically can’t do it. To have to explain constantly that I can’t do it because I have physical
restrictions, is tiring, especially when I am sometimes met with disbelief or told, why do I have a horse, or some other such thing, which people have said to me in the past.
People get exasperated with me because I have forgotten something for the umpteenth time, and when I try to explain and say sorry, its my ME/Fibro, and they think I am just making excuses.
I actually had someone say that to me today ‘stop using your M.E as an excuse’. They just can’t see how far I have come. The fact that I am even standing in front of them, trying to explain anything, is actually a small miracle in itself.
But it does hurt! People say things without thinking or understanding, and it really hurts. I get really upset…I got really upset. This person made me cry. I spent all morning really upset about it. Then I have to remind myself, of how far I have come. Sometimes I think people who react negatively just don’t understand or comprehend how hurtful they are being.
I always do my best, and try my hardest.
We all cope differently, to our own challenges in life. We are individuals and we all do things in our own way.
All I ask is that people try to understand, and try to not get frustrated with me, I can’t help it, I don’t do it on purpose, I am not doing it to annoy you. Try to see how far I HAVE come. I am pretty proud of me to be honest.