Sinking…

I’m not myself at the moment. It doesn’t take a genius to see that. I’m sinking. Sinking under the weight of worsening symptoms, stress, anxiety and a frustrating delay in getting my perceived miracle cure. I have a progressive, degenerative disease, I know that. By its very nature, it is going to get worse. I know that. By the point of diagnosis, around 50% of the dopamine-producing cells have already been destroyed. I know that too. It’s only a matter of time until more symptoms become evident. I read that 3 – 7 years after the onset of symptoms is when most people notice a worsening of symptoms and progression of the disease. And that’s where I am… 3 years from the onset of symptoms. So why am I surprised? Why have I been thrown into this downward spiral of depression, when I knew it all along? 9 months since diagnosis. 8 months since the start of treatment. It should’ve been longer. I wanted more time. I wanted to be as good as I could be for so much longer. I’m devastated. And angry. It has hit me so hard that things are never going to be better than this. I think, as ridiculous as it sounds, I am grieving for the life I had and the life I will never have again. So I apologise for not being myself. I’m not even sure who that is any more… I apologise for the tears, unwanted and futile. But I don’t apologise for anything else. I am struggling so much. My life has changed so much. And I can’t remember when it happened. Subtle changes, creeping in almost imperceptibly but when you examine the bigger picture, their impact has been huge. I worry so much about the irreversibility of these changes. I’m starting another drug. Hopeful that this will be my miracle. I have so much planned for ‘when I can’, and now I’m truly fearful that that day will never come… And the NHS being what it is, I probably won’t even start this drug for another couple of weeks – I have it on good authority that the letter to my GP has been dictated but it will take 3 weeks for it to be typed and posted, and then I have to wait for the prescription to be issued. But that’s OK because I’m not struggling or anything… First thing in the morning, I literally cannot walk now, the pain and stiffness is like nothing I’ve ever experienced before. The past few mornings have really scared me. But the new drug will sort that out, won’t it? So please bear with me. And please be patient with me. I am fragile and scared. And I’m doing my best, my very best, and I’m acutely aware that often that is not good enough. If I’m slow it’s because I literally can’t go any faster. If I’m miserable it’s because my life is being snatched away from me and replaced with a battle I can never win.

And yet, I refuse to be beaten. I can’t walk in the morning, the pain is unbearable, the fatigue is dangerously ridiculous, my symptoms are spreading to my left side and I can’t even do all of my physio now… I wonder which category comes after ‘Elderly frail’??!! Give me the drugs and the supplements and the weird, wonderful and crazy ideas… I’ll try them all. Anything to give me even just a semblance of normality. If I could walk to the bathroom when I get out of bed, that would do. Or if I could stay awake for more than an hour when I get home from work, that would do too. Or if I could cook a meal without dropping a boiling pan or flinging ingredients all over the floor, I’d take that. I’ll take anything that is an improvement on what I have now. I’ll even take the mostly unwanted side effects, the compulsive behaviour an hallucinations. That’s got to be better than this…

But when you see me, those symptoms will be hidden. Temporarily masked with drugs and determination. I have to be alright. Miserable but alright.

I was going to apologise for moaning after my recent vow to focus on the positive, but I’m not sorry. I hope this will be a cathartic exercise for me, writing it all down and admitting to myself all of the things I had been hiding and denying. Recognising that I can’t go on like this any more. And if it isn’t, at least there is gin!!