I love this song and the lyrics call to me ~ especially the chorus..
“This is my fight song
Take back my life song
Prove I’m alright song
My power’s turned on
Starting right now I’ll be strong
I’ll play my fight song
And I don’t really care if nobody else believes
‘Cause I’ve still got a lot of fight left in me
A lot of fight left in me
Like a small boat
On the ocean
Sending big waves
Like how a single word
Can make a heart open
I might only have one match
But I can make an explosion”
Fight! We all have battles we face in our daily lives but some are more than others. It’s a fight against the things that get you down, be it other people, your circumstances, your physical or mental health, relationships etc. Yet, saying that I don’t mean to place one persons battle above another because everything is relative. One persons seemingly small battle is to them the same as another persons perceived larger one.
Today, right now I am fighting. I feel monumentally overwhelmed by life in general. So many factors are beyond my control and it frustrates the hell out of me.
I am beyond exhausted, tired to my bones, I feel ancient. My cognitive function worries me, I know docs have tried to reassure me but I think anyone who struggles in this way will always have that fear of potential dementia. The other day I was trying to find the word for kitchen towel and after brief charade to my husband he twigged and filled in the blank for me. It sounds silly but when these episodes add up, multiplied by poor memory, difficulty following conversations and using the wrong words in sentences and not even realising ~ it’s scary!
Then you have the poor energy issue which means that my house looks like a bomb site and the floor is filthy because I haven’t hoovered or mop for over 4 weeks now ~ you can barely see what colour the stair carpet is for all the dog hair on it. Adding insult to injury I had to wash my feet before bed because of walking barefoot on the laminate floor and the resulting dirt on my feet.
Thank goodness for dishwashers, microwaves, tumble driers etc though ~ we don’t iron in this house, clothes get dried and you have the choice to wear it creased or not at all. We utilise any energy saving devise, meals, options possible to try and help us in our daily lives.
The thing that really bothers me though is how unpredictable my health is and the impact that has on everything I do. I also worry about my family, they all have invisible chronic illness too ~ it’s a constant fight and trying to help each other stay afloat and cling on for better days, which is so hard, not just for me but for all of us.
Having to constantly explain to others and gently remind them what we face is also exceptionally hard. No matter who they are it is always a struggle for them to equate an outwardly healthy looking person as being sick.
The thing is ~ we put on a front whenever we see anyone outside of our small family tribe. This isn’t necessarily for your benefit but more for our own, it’s our own silly pride that makes us create the illusion that we are okay when we aren’t. We want to feel “normal” and fit in, even if it’s just for a little while.
It’s not my place to share my incredible families individual battles here, but each of them are working hard this week, as they do every week, to appear okay and putting on a brave front. My girls are utilising every ounce of energy they have whilst facing the winter bugs and viruses that are doing the rounds. This impacts on their health more than other folks because of weakened immune systems, they fall harder and longer with each bug.
My husband is being an absolute star in running us around, shopping, cooking, stacking dishwasher, driving here and there whilst exhausted himself.
This week is a particularly full on one, for numerous reasons. We have a special family members 80th birthday to attend on Saturday. It is going to be really tough to muster up energy to go but we will because we rarely get to see our extended family in the flesh. They live a two and a half hour drive away and the party is afternoon into evening but not finishing late. We will be going just for the party then returning home ~ a lovely friend of one of our daughters has offered to dog sit for us due to the length of time we will be away, which is a huge relief.
Simple get togethers like this are a given for many healthy folk, for us we have to plan, rest, make contingency plans and hope against hope that on the actual day we will all be well enough to go. Our track record isn’t great, usually only two perhaps three out of the five of us manage to go.
I’m just majorly pissed off today, being tired and emotional does that. I get weepy and sad then angry as hell. THEN, I start to feel awful and guilty as I imagine all the other people in situations worse than mine. It is tsunami of emotions, each taking turns to take the helm and bash me relentlessly, screaming in my brain at me.
It’s no wonder people living with chronic illness also suffer from depression, anxiety and stress. Trying to do so much and struggling each and every day with life. Having invisible chronic illness is harder still, that’s because whilst you face your own internal battles you are having to try and justify to others why you can’t meet them, speak to them, be like them.
Even when folk say they understand, sometimes you wonder if they truly do ~ especially when the media still stirs up so many untruths and unhelpful advice to “get better”. Sadly, right now there is no cure, no real treatment ~ only treatments for symptoms as and when you need help with them, to make you more comfortable.
Getting up each morning is like wading through treacle, it’s such a monumental effort to get up and go downstairs. Then to have to wash and dress is another massive drain to the battery. Although, from November the first at least I won’t have to worry about washing or styling my hair because I won’t have any after my head shave fundraiser.
So today I am writing this blog to remind myself to not give up, to continue to fight. I’m human and so it’s okay to cry, to scream, to feel self~pity and want answers, so many “whys” in my head with no resolution or answers available.
I will look for the bright side of every dark moment and if there isn’t one to hunker down and ride it out, knowing that at some point the light will reappear.
To my friends ~ I apologise if I am distant and not interacting with you. Just daily routine chores are taking every ounce of energy I have. Reading posts/threads on social media is an issue right now for me. I read them, then re~read them but don’t fully comprehend what I am reading, so have to read a third time. Then I want to reply, to comment to let you know I am there for you and support you but the words don’t flow. The sentences sound rambling and disjointed ~ so instead of hitting “post” I hit “delete” and then “like” or “love” your post instead. Know that I am around but lurking on the side~lines, sending love your way and hoping you understand.
This blog post has been edited and re~edited umpteen times ~ however I apologise if some of it sounds disjointed or rambling, this is as good as it gets right now.
I’m retreating off now ~ but felt it necessary to share this with you and hope you understand why I am distant right now.
My next blog will most likely be the one showing you my newly bald head ~ which will be in 9 days time.
If you are struggling right now I hope you find better days ahead very soon. Whatever happens we must keep on fighting ~ somehow, someday I am sure life will get better. Always hold onto hope and don’t let it wriggle out of your grasp.
I leave you with this song, quite simply because I love Freddie’s voice and the lyrics speak to me, I hope you enjoy it too..
“These Are The Days Of Our Lives”
Sometimes I get to feelin’
I was back in the old days – long ago
When we were kids, when we were young
Things seemed so perfect – you know?
The days were endless, we were crazy – we were young
The sun was always shinin’ – we just lived for fun
Sometimes it seems like lately – I just don’t know
The rest of my life’s been – just a show.
Those were the days of our lives
The bad things in life were so few
Those days are all gone now but one thing is true –
When I look and I find I still love you.
You can’t turn back the clock, you can’t turn back the tide
Ain’t that a shame?
I’d like to go back one time on a roller coaster ride
When life was just a game
No use sitting and thinkin’ on what you did
When you can lay back and enjoy it through your kids
Sometimes it seems like lately I just don’t know
Better sit back and go – with the flow
Cos these are the days of our lives
They’ve flown in the swiftness of time
These days are all gone now but some things remain
When I look and I find – no change
Those were the days of our lives yeah
The bad things in life were so few
Those days are all gone now but one thing’s still true
When I look and I find, I still love you,
I still love you.”