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.

The Roses of Success

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.

I’m a Believer





About Susan

I am a middle aged woman wondering where all the normal middle aged people are. I don't want to regain my lost youth but nor am I ready to rush headlong into old age. I realise I am oldish rather than youngish but surely not actually old yet. So this is my chance to muse on my middle aged existence. This will save my teenage children from the horror of me musing on age spots or deteriorating eyesight which is surely a kindness. Now that I have been diagnosed with MND (ALS) this blog will have to change a bit, but I AM still middle aged too.

{13} Thoughts on “Smell the Roses

  1. As always, touchingly positive. I will follow your wise words. Sorry to hear that you are unlikely to be wearing a bikini this summer, but this is the north of Scotland after all so you won’t be alone there. 😀

    • I am hoping so too. At least she didn’t suggest any chances there when she trotted round the house!

  2. Lovely to hear from you, imagine smelling your roses and cuddling your cat. Small but wonderful pleasures in life. ( I did consider deliberately mixing those sensations up for laughs but I’ll leave you to ponder on that one).

    I also have this great image of your husband sneaking out to ensure you got Charlie. It makes me wonder if he was considering catnapping if required, haha

    You are so wise to be getting organised with plans for the future as it really can take longer than it should.

    I can sympathise re the sleep assessment as Peter recently had to do a sleep assessment at home and both of us had a very unsettled night! The outcome of his is that he needs a CPAP machine as he suffers ( and probably has for years) from Sleep Apnoea. Although he didn’t have to suffer the nasty blood test. Owww!

    By the way at the moment my favourite flowers are sweet peas, ( still waiting for them to flower) and Hydrangeas. I don’t think anyone has written a song about Hydrangeas though tricky rhymes, hmmmm, food for thought.

    Love the blog as always and still planning to make it up your way in October when we can perhaps enjoy the sights and smell of autumn.


    • I am glad you didn’t transpose the cuddling and smelling – yuck on both fronts! Husband did very well sneaking off to get Charlie as the other family were looking adoringly at him too. He was awake and doing his best to look adorable!

      I do love sweet peas too. They smell gorgeous. I love freesias too. Sorry, less impressed by hydrangeas despite the sadness of the lack of songs about them! Please come and see us!

  3. Wonderful to read, as usual Susan. We all should stop and smell the roses more. There is just so much beauty around which we take for granted and we should cherish the enjoyment of seeing it. Diane

    • Thanks so much Diane. I am all for people stopping to admire beauty. It is all to easy to rush around and fail to notice gorgeous things.

  4. Another very good blog Susan . Very glad the breathing is still good for you .. arterial blood being taken is not that pleasant but as an ex phlebotomist I know !!! Not that I ever had one taken myself .. The person taking your blood should have said just relax and smell the roses
    Am sure you are looking forward to your friends coming to see you .. it’s nice when people visit faces and different things to hear ..
    Love your new cat . ,.. I am also a cat person ..don’t have one as you know I live between two houses so it would not work having a cat at this time.
    As you said you never know what is round the corner .. The day that my friend was diagonised we should have been in a plane for Spain ..never knew when it was booked that instead of flying off my friend was to hear such devistating news but managed to get heads around it eventually and now go off on shorter trips around Ireland quite often .. admire the beautuful scenery and give out about the weather but enjoy it very much . as you don’t know what will hit you suddenly when one has MND
    Look forward to your next blog
    Sending some roses to you 🌹🌹🌹🌹🌹🌹🌹

    • Thanks for all those roses David. Very touching! I love you knowing about arterial blood despite only doing them rather than experiencing it. I am not convinced it is quite the same! Our new cat is very sweet and only a year old. You would like him. I hadn’t realised you were meant to be flying to Spain whne your friend heard the news. Definitely a bolt from the blue.

  5. What a wonderful blog Susan! It was so good to see you all at Moy last week. My CV fun had by all and thanks for coming to see us in the clan tent. Look forward to seeing you again soon. We are on holiday in Italy just now but will be in touch on our return. Love Louisa and Stuart xx

    • We loved seeing you both, and your mother too. It was an absolute treat. I am SO glad I can still walk.

  6. Hi Susan,

    I love your blog – have you thought about a book? Your humour is brilliant and it reminds me so much of Uncle Gwynne. It would be amazing to catch up in person. I am in contact with your mum on a regular basis and also Peter and Madeleine.

    If you fancy a break, please come and stay. I know it is a long way away to get to Pembrokeshire, but you are welcome at any time. xx

    • I am SO pleased you said that. I have friends who still talk about how much Grandpa made them laugh. He was just brilliant. I would love to catch up in person too. Maybe it will happen. We will have to work on it!

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