Smell the Roses
I know talking about roses is a touch trite but I have been thinking about them a lot. Roses seem to be everywhere at the moment and I just love seeing the colours. So let’s start with a picture of one of our own roses.
Obviously that is plain yellow but there are so many gorgeous colours around. It really is worth stopping to smell the roses. Admittedly it looks a bit weird if they are in other people’s gardens so those may be best avoided unless you know the people. I also know it is a well worn phrase to suggest slowing down and smelling the roses but I just love the idea of taking time to appreciate the beauty around. Not just roses but everything. There is a lot of loveliness to be found when you look for it.
I know I have been quiet for a month but that doesn’t mean I haven’t stopped to appreciate roses along the way. It does mean I have been rushing around and some of it has been due to more MND stuff creeping into my life. I spent one night in hospital to have my breathing checked. This was a very strange experience. Good bits included the fact I got a single room. Yippee. It meant I could decide when to go to bed.
The test involves a clip on your ear overnight. I was told you don’t notice. Not true! But I know I wiggle in my sleep a fair bit so that could be why. Well, that and a problem with the machine. It kept suddenly beeping tragically until I pressed the buzzer and someone came and recalibrated it. It finally accepted that it would work at 3am. Hurrah. Then I was woken at 6:30 for an arterial blood test from my wrist. This is not something I had ever experienced before. I always take normal blood tests in my stride but the nurse telling me it would be a slight prick was not accurate. Oww. Not that I said at the time. Well, I can’t speak anyway, but I could have used my app to moan.
I don’t really believe in moaning if I can help it. Hence my desire to think of beautiful things like roses. It really is far more fun than feeling sorry for yourself. OK, so I bounce around finding positives all over the place. Each professional I see asks me how I am feeling but I really am fine. I know I am dying but it doesn’t feel it yet. Oh yes, my overnight breathing test. The nurses were really lovely and coped admirably with my use of my app. When someone rolled up to collect the machine that had been recording my breathing and I told her it had beeped a lot overnight. She knowledgably said it could be when my oxygen levels dropped. I wrote that it was just a dodgy machine but I don’t think she believed me.
Not long after I was told my tests were all fine. Hurrah. The perfect result. No hint of low oxygen levels yet. No wonder I pranced off happily and admired all the roses I saw.
Next MND experience was to see a physio. That was fun. Well, I sulked a bit when I had to lie on a bed to be assessed but I did try to hide it. Apparently my elbows are fine! I already knew about my weak hand and shoulder so that was quite exciting. I am easily pleased. And I have some new toys to play with. I love the shoulder pulley to go over the door and I have an interesting squeezy thing for my hands too. I told you it was fun.
Yesterday I saw an Occupational therapist for the first time. All sorts of professionals are cropping up in my life. I really liked the Occupational Therapist. She looked round the house. Whoops. I should have cleaned before she came.
It is slightly daunting thinking about things I don’t need yet but will in time but I know it is worth doing. So, first things are going to be a second banister on the stairs so that there is one on each side, and a bar in the shower for when I need to hang on to it to get in. I don’t need either yet but I am told it takes a bit to get anything so it is worth getting in good time. Oooh, and I forgot about a ramp up to the front door for when I need a wheelchair in the future. I told you it was planning ahead time. And there is a lot more than that in the pipeline. Definitely time to make the most of all I can do and enjoy it while I can, roses to smell and everything.
Now, time for a deep breath. In a couple of weeks I will get a feeding tube into my stomach. This is a very clear sign something is wrong. I can’t speak but I actually look healthy. Well, I still will. The tube will be hidden most of the time. Not many people see my naked tummy! This is very good news for all the people who don’t. I expect to be slightly shocked by a tube edging out of my stomach, but it is worth doing before I lose the ability to swallow. I will lose the ability to swallow at some point so the tube will be ready for when I do. Let’s think about perkier stuff now.
I have seen lots of friends lately and several more are coming up in the next month. It is wonderful. They all know I can’t talk. Everyone just gets on with it and copes with my app. I have to get more adept with it. And remembering my glasses will help. I can walk without falling over so I have a lovely time getting out and about. Muscles are going to give up as time goes on so it is a case of seizing opportunities while I can. This is the perfect opportunity to introduce the song that inspired this blog. It probably isn’t what you expect.
How can you go wrong with a song from Chitty Chitty Bang Bang? The message in the song is great. Who cares if you make a mistake? Learn from it and keep trying. What a fantastic thought. Don’t give up when something goes wrong. Keep trying. I have to adapt a lot just now and it is great. I can do far more left handed than I ever imagined. So, my neurons are dying and muscles are stopping working but that is no reason to think the world is against me, or that life is unfair. It isn’t. Things like this just happen so please make the most of your life and have as much fun as you can. I know that is easy to say but no one knows what is round the corner.
I didn’t know MND was on the horizon but it definitely isn’t a reason to roll over and give up. Three weeks ago we got ourselves a cat. We headed off to the nearest SSPCA centre. OK, so we had nosed around there a couple of weeks before but this time our new kitchen was ready and we were all set to choose a cat.
All four of us headed off to look. We had keenly browsed the website in advance and were ready. We had just got out of our car when another family arrived. They wanted a cat too so we arrived at the cat enclosure at almost exactly the same time. Most of the cats were snoozing but one was really selling himself. He approached the glass, played, and did his best to look adorable.
The other family were smitten too. Tricky. My husband sneaked off and asked if we could have a closer look at the adorable cat. And reserved him. This was a wise move. Charlie still busily sold himself on release from his rather lovely living space. We loved him. So did the other family. But we had reserved him so he was ours. It was a shock to discover we could have him that day. We rushed off to buy cat related products. He is a really sweet cat. So you get to see a gratuitous photo of him on my lap.
Remember to appreciate beauty where you see it. I love roses so admire them at every opportunity. Remember that all sorts of things can crop up out of the blue too so take them in your stride and enjoy your life as much as you can. I intend to seize pleasure where I can. It is a lot better than screaming that life in unfair.
Let’s finish with a song to make you smile.