It’s been a funny old week. The weather has certainly turned and winter is now upon us. Our fire has been lit most nights and we’ve been gathered around trying to keep warm. I can’t complain too much mind, through the day it’s still 19 – 22 ish inside the house. Today it’s so cold outside, with driving rain showers, yet it’s 19 degrees inside, no heating and I’m sat writing this in a short sleeved dress. As they say, “mustn’t grumble.”

I also had a scare this week with my Parkinson’s decline. Blimey, just writing that looks incredibly depressing. I always try to be honest though. It’s true that I preach positivity, happiness and all the good stuff, but the science and facts should never be forgotten. I still remember that what I’m doing is holding back the storm. I may be able to lean on the door, but the storm is still raging outside and pushes hard. It seeps through any gaps, and where it finds a way, is unrelenting in its fury. Yet the door must stay shut. If I ever just relax, even for a moment, the storm beats harder, whips cold around the gap I left, and tries to bring the maelstrom inside my little safe space.

I need my safe space. I need to remember that I’m nine years in. I’m actually doing really well. Part of me is very sad that I now take more medication, must work harder and my medication is now rather time dependant. The other side tells me off for being so despondent. I’m doing really well considering the time I’ve had this, and my progression is still slow.

That word though. Progression. It’s such an unknown. How long? Nobody knows. How bad? No clue. Why me? Ha haha ha ha haaaaa. Suck it up, sweetheart, this is a lifelong deal.

This week I stumbled across a candle I had received as a gift for my birthday. It was a significant one, birthday that is. I discovered the ‘go to’ gift for a 50 year old woman was clearly scented candles. I finished the day with around five or six of them. Hey, I’m not complaining, I’m a sucker for a pretty scented lump of wax. You may find this surprising. If you know anything about Parkinson’s you will know that one of the more common early signs of the disease is loss of sense of smell. I have never suffered this. I know not why, but I’m not going to complain about it.

So. I have this candle and I’ve been lighting it in my office, or sometimes in the living room on the coffee table in the evening. I picked it up as my children were going to school and I remarked, “it doesn’t really smell of much though.” My daughter took it from me and said, “Lemons, Mum. It smells of lemons.” I took it back. I sniffed hard. “Does it?” She sniffed it again. “It’s not really strong, but yeah.” I stuck my nose back into the candle. I couldn’t detect lemon. Could I? Was that my imagination? Why couldn’t I smell it? I felt a rising panic. “You’ve not been very well Mum, that’ll be why you can’t smell it.” “I’ve not been very well for nine years” I remarked darkly. “Maybe it’s… ” I trailed off. I felt my eyes pricking. Oh no! My daughter looked at me and was concerned. “Oh Mummy, don’t get upset! I’m sure it’s not that!” She stood and hugged me, which of course made me start crying properly. I pulled myself together and assured her and her brother I was fine. They went to school.

I was not fine.

I fumed all day. Silently angry and sad that my sense of smell may have been stolen by Parkinson’s. I should have expected it, I shouldn’t be surprised. I should be happy that it took nine years before I noticed. I was angry and sad. I spent the day sniffing things and asking people for a second opinion. I think I drove everyone a little mad.

The next day I realised I could smell citrus-like lemon… from the candle. Faint, but definitely there. I went to the kitchen, and sniffed the tea bags (sorry if you’re visiting my house, I’ve sniffed them all) and the pot of apple tea. I detected… smells. I picked up a bottle of Southern Comfort – it had a strong aroma.

I felt relief. And sadness. Sadness because I fear my sense will be taken from me. Relief that my senses have not yet been destroyed. The door is still shut against the storm, but I don’t know how long I’ll be able to keep it closed. I have no choice.

Here I must stay, leaning against Parkinson’s, fighting what some may say is inevitable, yet I say it’s only maybe. So light a pretty candle and enjoy the scent. And keep believing you can. Maybe then, you will.

Until next time.