Spoons!

Well I have been a busy bee. Its been Take That concert season and guys, guess what? I did it! I had the best time. It was very emotional, I was very worried in the run up, that I wouldn’t be able to manage. But I did!

But for those 2 hours of music I felt more like myself than I have in a very long time. I couldn’t dance like I wanted to, but I have a good thing going with my stick now and sat down a lot. But I did it. It was an immense achievement (piccies below of my excited pre-concert face!)

We did have some disasters along the way. My machine decided to break whilst we were in Sheffield on the Friday night. Post-concert, when I needed it the most. The air bit still worked but the humidifier part broke. So I had to make do with cold air blowing air into my lungs. Pretty quickly my lungs dried out. It was agony. But the alternative of missing treatment was not an option.

Of course, it was weekend and the clinic was closed. By the time Monday morning rolled around, I barely had a voice, couldn’t sleep and was in pain. We then had to undertake the 3-hour round trip for a 10-minute appointment. Oof.  It took a good 5 days to get back on track. Just in time for concert number 2!

Now the fun is over I am all about recovery. Sleep, some writing maybe, and definitely more sleep.

In my last blog post I talked about the writing challenge that I have been doing for the month of April. Its been fairly versatile the challenges each day. Could be a word, or a subject or even a video.

One of the pieces I did was around the word prompt for spoons and given that I have had some nice outings recently it felt relevant to share here too to give an insight into what it means to manage your energy levels when you have a long-term illness or are unwell.

Some of you will be familiar with a lot of what is covered in the piece as its things I have touched on this subject before. As time goes on I have become better with saving spoons, listen to my body, and rest as much as possible.

This piece was called Saving Spoons:

20 months ago, a spoon would be to stir a cooking pan, to eat my food or to drip feed information. I had to do that a lot in my job. Pass on information, knowledge transfer, a bit of training. It was all part of my busy daily role. Busy busy life, busy busy wife. I had the odd bursts of bad health along the way and had a pair of naughty lungs who liked to misbehave.

Then overnight my health broke down and suddenly a spoon was no longer all of those things it was before. It became a metaphor for my life. For my energy and what I could cope with in a day. I could no longer work, walk anywhere or some days function at all. I was reliant on breathing machines and staying away from any germs so as not to get sicker.

My first thought of the morning now on waking is; what can I cope with today? How many spoons are available to me? Some days I am rewarded with a manageable amount, some days very few.

Life isn’t spontaneous anymore. I even have to plan when I wash. I can’t suddenly decide for a day out. I have to plan my breathing treatments, what food I can manage to prepare and even what I need that day from upstairs so I don’t needlessly have to re-climb the stairs again until bedtime. Its hard work. It takes up a lot of space in your head, it’s confusing, tiring, upsetting and I’m fairly sure the planning of the spoons uses spoons itself. Irony.

Some days I can manage more and if my spoon gods are looking down on me, I actually get to follow through with plans I have made. To go from a busy person, social, to managing spoons was a shock. It’s still a shock now. Some days I have more spoons than others. Some days I have no warning and suddenly there are none left. I crash in the most awful way and quite literally have to be put to bed. Aged 41. Like a child who ran around on a sugar high and falls asleep where they stop.

So meticulous spoon management it is. I plan them as carefully as I did my projects at work. Showers, allowing me enough of those spoons to dry my hair. Not even to get out of the house. Just to get out of the shower. Just to dry my hair. Sat on the bed obviously, always saving spoons.  I have to use a wheelchair if I want to go further afield, or drive somewhere and be parked directly outside. Don’t be wasteful!

There won’t be a time in my life where I don’t need to manage spoons. Some days they are my friends and some days my foe. I resent them and revere them in equal measure. I have learned the shortcuts to doing things to conserve as much ‘spoon-age’ as possible and continue to learn almost daily.

What I do know though, is that without that management, that analogy, that knowledge of what my body needs I would find it virtually impossible to any kind of a thing. I guess in some ways I need to be thankful for those pesky spoons.

Thanks for reading everyone. Speak soon…. x