Ever since that hideous brown envelope plopped on to my doormat, life is, well, sludgy brown.
It’s remarkable just how much an ‘invitation’ (lol) from the Department of Work and Pensions, to move from DLA to PIP can suck the life out of you.
The days since Envelope Day are passing in a blur of those twin enemies, Fatigue and Fear.
Instead of moving forward in life, I feel I’m now stuck, analysing every symptom, everything I do and everything I cannot do.
It’s like having one of those harsh interrogation spotlights suddenly shining in my face, where I have to prove every single thing, without seeing beyond that light, to who’s sitting behind, making decisions which will affect my life for years to come.
I’ve lost interest in everything I normally love. I go to work (because I have to, otherwise I wouldn’t), I come home, I lie on the sofa and stare at the not-very-interesting splodge on the ceiling. I don’t cook any more. Laundry is building up. I can’t read, so I watch terrible tv. I sleep. A lot.
In work yesterday, I was hit by a wave of the most hideous fatigue, so overwhelming it was painful. I went to the van and fell asleep, my whole body wracked with nerve pain. My hands have stopped working properly and are tingling and numb every day. I can’t think properly. When The Boss dropped me off, I curled up on my sofa and slept for three hours straight.
I’m trying really, really hard to stay positive and to keep hold of a sense of who I am and the person I have become since being diagnosed with MS, but this experience is pushing me to my limits of endurance. Do you ever get that feeling you just want to lie down and say, ‘ok, ok, I give up, I tried, but I’m so tired of this, you win’?
I’m edging backwards to the terrible and soul-destroying Pity Party for One I held shortly after my diagnosis and I can’t seem to stop it. Going forward is not an option at the moment.
I’m clinging on to my old life by the skin of my teeth. I can live on very little money and still be happy. I’m inventive, a Womble, and quite happily make do with charity shop clothes and second-hand books.
When even that is under threat, what’s next?