In the middle of the night

I have started and ended my blog with songs which have lyrics I can relate to ~ I am sure many of you with chronic illness may find something within them that calls to you too.

Just Hold On
Louis Tomlinson, Steve Aoki
Wish that you could build a time machine
So you could see
The things no one can see
Feels like you’re standing on the edge
Looking at the stars
And wishing you were them
‪What do you do when a chapter ends?‬
‪Do you close the book and never read it again?‬
‪Where do you go when your story’s done?‬
‪You can be who you were or who you’ll become
Oh-oh-oh, oh-oh-oh oh, if it all goes wrong
Oh-oh-oh, oh-oh-oh oh, darling just hold on
‪The sun goes down and it comes back up
‪The world it turns no matter what
Oh-oh-oh, oh-oh-oh oh, if it all goes wrong
Darling, just hold on
Oh-oh-oh, oh-oh-oh oh, darling, just hold on
Oh-oh-oh, oh-oh-oh oh
It’s not over ’til it’s all been said
‪It’s not over ’til your dying breath
‪So what do you want them to say when you’re gone?‬
‪That you gave up or that you kept going on?‬
‪What do you do when a chapter ends?‬
‪Do you close the book and never read it again?‬
‪Where do you go when your story’s done?‬
‪You can be who you were or who you’ll become
Oh-oh-oh, oh-oh-oh oh, ‪if it all goes wrong
Oh-oh-oh, oh-oh-oh oh, darling just hold on
‪The sun goes down and it comes back up
‪The world it turns no matter what
Oh-oh-oh, oh-oh-oh oh, if it all goes wrong
Darling, just hold on
Oh-oh-oh, oh-oh-oh oh
Darling, just hold on
Oh-oh-oh, oh-oh-oh oh
If it all goes wrong
Oh-oh-oh, oh-oh-oh oh
Darling just hold on
Oh-oh-oh, oh-oh-oh oh
If it all goes wrong, darling just hold on

Songwriters: Steve Aoki / Nolan Lambroza / Eric Rosse / Sasha Yatchenko / Louis William Tomlinson  Just Hold On lyrics © Warner/Chappell Music, Inc

In the middle of the night ~ the quiet hours, unable to sleep, I lie awake listening to the gentle snoring of my husband and dogs. They shuffle and snuffle, snore and stretch in their slumber whilst I try to find sleep.

Ideas come to me, quotes and song lyrics, answers to questions which had previously been elusive making me mentally face palm because they were so obvious.

I want to get up and write everything down so that the ideas and information aren’t forgotten by morning. I can’t though because it would disturb my Hairy Boys (dogs & husband), which would be selfish of me. Instead I try to cordon off my thoughts into a part of my brain with a few active memory cells. Ambitious ~ I know!

It’s now morning 5.55am to be precise when I tried to slink out of the bedroom quietly, which was a fail. Both dogs jumped out of bed to follow me and hubby sleepily asked if I was okay. Reassured all was fine hubby returned to his slumber. The dogs came with me, went outside to toilet, the dogs ~ not me, then had their breakfast. Taylor returned upstairs to Dave and Loki stayed with me and curled up to sleep on my knee.

Coffee in hand I can now process the thoughts that had been churning in my head throughout the night, so quickly they were tumbling into one another. However, as often occurs with these night time brain explosions, some reality checks were thrown into focus.

1. I am not doing all I can to optimise my health.

2. I lack in willpower thus flop on good intentions.

3. My health is declining.

4. I need to take action now if I aim to live and not sabotage my health.

These thoughts, I think, were triggered by my physical discomfort and concerns about my health. I think as I see 50 on the horizon, that I am more aware of my mortality.

Currently I am in limbo, questions are raised as to my diagnosis because I had vasculitis on my arms which required a month of steroid therapy to damp it down. A couple of weeks after steroid therapy finished the rash returned, on my cheeks and arms. I returned to my GP and am now on long term low dose steroid therapy until my urgent referral to see rheumatologist comes through. As the rash, which only abates when on steroids, is combined with having blisters on the roof of my mouth, intermittent kidney pain, digestive issues swollen sore ankles, acid reflux, poor cognitive function, poor mobility and pain over entire body, my diagnoses thus far are in question.

So far it was/is thought I have Myalgic Encephalomyelitis and Fibromyalgia, along with my Hypermobility Ehlers~Danlos Syndrome. Now questions being raised are do I have these conditions plus possible Lupus OR was I misdiagnosed and do I have instead “just” Lupus? This is the reason for the urgent rheumatology referral as my GP feels long term steroid therapy to keep the rash away needs looking into and need to find the cause to then decide on the appropriate long term treatment.

I think you will agree, I need to take action to improve what I can control to benefit my health and sustain it.

With my mortality on my mind I have constructed a plan of action which commences today.

• Go sober and maintain it this time. Since my last attempt I have gone off spirits but enjoy wine. Alcohol makes my kidneys ache and so is that glass of wine worth the risk to my health?

• Follow a vegetarian diet, avoiding pre~packed and processed foods whenever possible. Having 2 vegan daughters and a daughter following a pescatarian dairy free diet should help me to avoid meat. I enjoy many vegan meals and so will flitter between the vegan and vegetarian menu.

• Maintain observations of step count and corresponding heart rates.

• Stretch limbs daily, and when possible try low impact gentle exercise.

• Brain train, do simple brain training exercise to try to improve cognitive function when possible.

• Do something I enjoy everyday as a reward.

• Take regular rests throughout the day and try to fit in one meditation session using the Headspace app during one of the rest times.

• Use the Nomo app to track and receive support for sobriety.

• Use the LoseIt app to track foods, calories, nutritional information and eating pattern.

• Be assertive with doctors when discussing health matters, question and quiz them for information, treatments and options.

• Keep a photographic and written symptom diary to take to rheumatologist, as advised by GP, when my urgent referral appointment comes through.

• Keep a wary eye on my black dog ~ the recently increased anti depressant dosage is currently keeping me stable, but to be aware of my mental health so it doesn’t sabotage my attempts to take control.

I am fortunate to have a supportive family and know that my daughters are concerned about not only my health but Dave’s to. They want parents who are present not only now but in the future. To not be tempting fate and putting our lives at risk. This is a huge incentive to make changes, now, today and commit fully to them.

Some people are luckier than others in the health lottery, everything is relative, it’s not a competition to see who is the sickest. It’s how you move forward that matters, to take control of what you can and make peace with what you can’t.

Today is the day I make changes, adhere to my commitment and celebrate what I have. Life is a gift I don’t want to squander.

Bring On the Rain
Jo Dee Messina
Another day has almost come and gone
Can’t imagine what else could go wrong
Sometimes I’d like to hide away somewhere and lock the door
A single battle lost but not the war
‘Cause tomorrow’s another day
And I’m thirsty anyway
So bring on the rain
It’s almost like the hard times circle ’round
A couple drops and they all start coming down
Yeah, I might feel defeated,
And I might hang my head
I might be barely breathing, but I’m not dead
Tomorrow’s another day
And I’m thirsty anyway
So bring on the rain
No I’m not gonna let it get me down
I’m not gonna cry
And I’m not gonna lose any sleep tonight
‘Cause tomorrow’s another day
And I’m not afraid
So bring on the rain
Tomorrow’s another day
And I’m thirsty anyway
So bring on the rain
Bring on
Bring on the rain
No I’m not gonna let it get me down
I’m not gonna cry
So bring on the rain
Bring on
Bring on the rain
Bring on the rain
Bring on the rain
Bring on the rain

Songwriters: Billy Montana / Helen Darling
Bring On the Rain lyrics © Warner/Chappell Music, Inc

x~X~x

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