Fatigue is still with me, even after eight years, and it still sneaks into my daily life without warning.
It frustrates me but I have kind of accepted it is part of life now. I recognise the symptoms more easily but I'm quite stubborn so I don't give in as quickly as I could. It's hard to stop doing life. Fatigue isolates me.
To say I get tired is an understatement! Walking and thinking is so much harder... it's like my brain is in rebellion against me!
The biggest challenge is that other people don't always see it. If my leg was in plaster or if I had a wheelchair (like I did after surgery) then people might actually say less unhelpful comments
I'm not being lazy or just enjoying a sneaky day off... my body and brain are exhausted! I can't think or process much at all when I'm feeling that way.
My family are pretty good at telling when I'm fatigued and they're really supportive but before Christmas 2018 neither me or my family expected to see me back in hospital. I fell over in the bathroom at home. I couldn't speak or move. After 13 hours in hospital, I could walk and talk again... so I got sent home.
The bouts of fatigue have been a lot worse since then and my confidence has been knocked hard too. I think fatigue and loss of confidence go hand in hand for me. I want to do so many things, I want to become more independent but right now, I need support and understanding to live life one day at a time.