My Life Is Not Normal
Hello warriors, how are you?
I really hope you are doing as well as you can. I made a mistake this week, for the first time in probably nearly 10 years…..I straightened my shoulders. You might be thinking: WTH are you on about?
The arthritis I have in my ribs/sternum is severe. At intervals I get joint specific injections into them as well as the two treatments and pain meds I am on.
Being slightly hunched forward is the most comfortable position i.e. working at my desk. I have been sitting on my decking lately and this new position caused muscle ache at the top of my back between my shoulders. It was this that caused me to try and stretch. OMG the relief on my muscles was A-FCUKING-MAZING.
But the aftermath resulting in me having a wobble and crying a bit….which made the pain in my ribs and jaw joints even worse!!!!! LOL
This little incident just gave me such a harsh slap in the face that my life is NOT normal. Well not normal compared to able bodied. But very normal compared to other people whose lives are totally controlled by chronic illness.
I tried to film a video and it ended up just showing how what I am calling: chronic illness overwhelm; wears you down.
Pain wears you down. Pain massively impacts your mental health negatively. Fatigue is different, in a sense that you don’t have the energy most of the time to worry as much as you are literally too exhausted.
As I had a pain spike, it basically enhanced all of ‘normal’ worries x a million.
Simple things like:
Not being able to have a bath
Worrying about money
Worrying about when my body next shuts down for a period and I cannot work
Worrying about clients
Worrying about YouTube
Worrying about the fcuking Green Paper and the 4 point rule
Worrying about my mum
Worrying about not being able to
OK, I stopped writing at the last bullet point. Now my pain has gone from a 6 to a low 5 and I am feeling better within myself so there will be a different ‘tone’ to the rest of the newsletter.
I am going to watch the video I filmed in that state and see if I will share it or not.
Achievement of the week
My physio and I went back about 2-3 months and look at every time I crash and the root cause. It was a slap in the face, the short version is, I am NOT protecting my wellbeing. I need to say ‘no’ even when its people I love asking me to do something I know my body cannot cope with.
I feel much stronger about doing this now as I did not realise, I was stuck in a horrible loop that was massively, negatively impacting my quality of life.
Right now, I just feel so tired. I think hitting that wall and then facing reality has exhausted me. But I am now feeling excited about the new chapter of my life.
I have had days where I could not take the dogs out this week BUT I did manage (due to a night with ZERO sleep) to take the dogs out and watch the sun rise whilst listening to the bird song….it was sooo loud!!! It was AMAZING!
What has made me happy
Sitting on the decking whilst the dogs chill:
Looking at the progress in the garden:
Books I have read
Lets just move on from this….yep more romance hahaha
Arthritis update
Painful.
PIP
Sorry, I thought I was feeling a bit better….but my body is about to shut down……T MINUS 10min (its coming on quicker than normal):
This video is really interesting for all levels of PIP and works for what is going on with the green paper:
What I am looking forward to
Not crashing!!!!!! Not feeling like my life is totally out of my control. (I am ok this happens a lot….this is all aftermath of the Green Paper coming out and me trying to help my mum).
I am ok. Will be ok. Sorry I thought I was feeling pretty ok and was going to chit chat as per normal……I REALLY want to get this out as it really bothers me when I am not well enough to get this newsletter out!
Take care of yourself
Charlie
P.S
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