A good friend once said to me ‘Time wasted is not wasted time’
Thinking about that now I still find it hard to get my head round exactly what it means? But with my brain fog and drugs not much surprises me these days! My wonderful friend told me this because ever time she came to see me whether in hospital or at home at some point I would say how much I wasn’t doing enough/wasting time/not achieving. I felt like I was watching my life fly by without me. She wanted to show me that I was achieving even when I didn’t feel it and that no time was wasted even when things were out of my control.
I still feel that now, how much I don’t want to and I know my illness and the problems it causes are not my fault I still have such a high expectation of myself that I must do more. I’ve always been a bit of a perfectionist and put a lot of pressure on myself to get things right and achieve. It’s something I’ve always struggling with, but I’m slowly learning to be kinder to myself and it doesn’t happen overnight, not at all but it can start somewhere even with the smallest of things and having good love and support around you helps enormously.
Right now it’s 26th May 2019, 23:31 and I’m sat in my room on my laptop writing this blog. When I say room though I don’t mean bedroom, well actually it is a bedroom but.. it’s my hospital bedroom. *also note to self this blog might not be posted on the day/time above depending on how long it takes me in between the treatments, beeping machines and a lot of sleep but I am determined to finish it and I will!
I’ve been in hospital for over two months now (yes I know, two months! Tell me about!) It will be ten weeks on Tuesday. How am I coping? Blurgh. Can we skip? Next question? *sigh, laugh or cry..
Why am I back in you may be asking and why so long? Well, that is a long story to answer and not one for this blog but in short – I came in septic, very unwell, fighting sepsis, round nine, here we go again, then all my other co-morbidities started to flare and that has then caused multiple problems multi systemically all over my body from my struggling to function bladder to bowel, to my breathing, constant mast cell reactions and the immune system and constant infections. I will post a medical update soon, but for now I’m battling what’s in front of me and I’m just grateful to the team for keeping me alive and fighting to get me the best quality of life they can and get me home.
How do I cope? To be honest I cope by just focusing on one day at a time. No more, no less. If I think too far ahead I get overwhelmed, start to worry and panic. So I, we, my family, the team we all just take it one day at a time.
This blog is about being kind to yourself though and celebrating all achievements no matter how small so this is a little reminder to myself and anyone else struggling at home or in hospital you are never wasting time, you are doing what you are able to do that day, that hour, that moment. No one else is in your body, in your mind, battling what you are and no one can know the strength it can take to do the smallest of things so don’t let others bring you down, don’t let those negative thoughts or posts on social media make you feel you’re not doing enough or you’re not good enough because you are good enough, you are worthy. We are all individual, we are all fighting different battles big and small and we can’t compare, everyone is different but everyone matters and everyone is doing the best they can in the situation they’re in.
Give yourself a break.
As I write this I can hear my own thoughts in my head ‘well then believe that yourself Ruth!’ As I said above I am my own worst enemy being hard on myself, not giving myself a break and never being kind, how much I am to others I find it so different and so hard to be kind to myself, but I’m trying and trying is a start right?
So here goes:
As I said above I’ve been in hospital for over two months now and as well as battling everything medically I’ve also coped, am still here fighting mentally nine weeks down the line and that is an achievement in itself! Now I’m going to write down all the things I’ve achieved, non medical in the last 8 weeks and six days..
- I’ve got up and dressed every day, around 70% of the time (so not theatre, procedures, under critical care, on my worst days fashioning sexy hospital gowns and gear). But the rest of the time I’ve got dressed and yes that may just be back into a different set of pj’s and it may sometimes not happen till late morning or mid afternoon but I still have a wash and get dressed every day, with help and that is an achievement.
- With Willow by my side and being allowed in every day (Willow is my assistance dog for those who don’t know, fully qualified to assistance dog level in September 2018 with the help and support of Dog A.I.D. I’ve been able to share Willow’s love around and cheer up fellow patients. Especially during the first month she was and still is a therapy for many people, giving cuddles to the young, the elderly, the relatives and even the nurses and doctors. Often when patients had no one else to visit just seeing and stroking Willow made their day and we did that, me and Willow together.
- I’ve kept up with my physio for my mobility and my breathing even when it’s a huge struggle and on days when I can hardly sit up in bed I’ve still kept going and that shows strength.
- Into the second month of the admission I started to do little creative bits when I was well enough/well had some energy to carry on with some of the projects I’ve started at home..
My positivity jar – Now this is something I’ve always wanted to do but never got round to it until this year I finally started it! It’s as it says on the tin, or jar should I say! Ruth’s positivity jar for 2019 and in basic all I do is put in little positive notes every day or a few times a week of positive things that have happened, both big and small so at the end of year I can look back and see all of them. I’ve already wrote and put into the jar over 20 notes! You think in the hospital there might not be positive notes to share but there is, even if it’s tiny, as I always say ‘every day may not be good but there is something good in every day’.
My hospital scrapbook – This is something I started way, way back in 2014 when things first deteriorated and my EDS diagnosis (and to come secondary conditions and complications came to head) came to light. I like documenting what happens and how I feel especially during hospital admissions, its my way of coping emotionally I think and it’s great to look back in plus I always include photos! But I’ve wrote over half a scrapbook in the last two months and I’m really proud of that!
So my amazing parents wanted to help me with my scrapbooking which I love but with limited energy and strength it’s been difficult, so with an amazon voucher I already had and a gift from them they bought me the incredible mini HP Sprocket Printer which prints out mini photos straight from your phone! For a girl who loves photos, memories and being creative this was the best present ever!
So with this I started to make a few new scrapbooks, including: My positivity hospital book – which is a little book full of photos, notes and quotes from the last five years of hospital admissions and it’s to remind myself how far I’ve come and if I get through all I have in the last five years I can get through this too and all the future admissions and struggle. Also: My Willow scrapbook – I have always wanted to document Willow in a book but never got round to it but finally with help in here I’ve started it!
Yes these projects may not seem much to others and I may fill in one page in one day when others do ten but a little is better than nothing and it’s something and for what I’m fighting in here I feel really proud of that and that is what matters.
I’ve also managed to make a few cards to send to fellow friends struggling and some of my favourite nurses too.
I’m also in the process of starting a bullet journal, I say in the process as I’ve not officially started it yet but I’ve made ideas, lists and notes and hope to start soon (as well incredible people and friends sending me things to get me started with it, HUGE thank you, you know who you are and when I’ve started and am a little stronger I’m going to do a whole post on that).
Now I’ve not been able to be creative as much the last week or so as it’s been a particularly tough week but that’s okay, I’m allowed to struggle, I’m human, I’m not perfect and despite all of this I’m still getting up, getting washed, dressed, smiling and facing the world (and some of my fears of horrible procedures and surgeries I’ve had to go through and still have yet to face) head on even though inside I want to run and hide which in itself is amazing.
So let’s give myself a break and that applies to all of you reading this too as I bet you’re much harder on yourself than you need to be or should be?
Let’s all be kinder to ourselves and remind ourselves how much we are achieving on both the good days, the bad days and everything in between.