Neglecting life…. 

This comes naturally to a spoonie neglecting life, even when you are consciously trying not to do it. The stress just makes sure that you end up doing it. I have found 2017 really tough. My health has been worse, important people in my family have been ill and diagnosed with cancer, my granny with the white hair who I’ve blogged about before passed away last week and a good friend who I have previously worked with and played football with died after a short but aggressive battle with Cancer the week before. It is undeniably an incredibly tough time emotionally and physically. The knock on affect is that my moods swing, people get upset with my mood and comments and not just the flippant comments but sincere ones to. 

I lie and say things are OK, but really inside my head and heart are shouting why, what the fuck! Every year I think next year will be better for us, next year I’ll have more time for my family and friends, next year will be our year. Once again I find myself wanting another year to be over in hope of another year being better. 

Now this isn’t a woe is me post as there will always be people feeling worse than me, it’s more of a post acknowledging that I am human and at times I need help. I have spent many months sorting a personal budget and a PA to help me, another big step in my journey of needing help. I am trying to sort a power chair, I have my PIP assessment paperwork to complete, my motability car contract to renew and my driving capability assessment to complete. I have another MRI scan because of my recent falls and tests for issues with my bowels and my diary is full. Not full with fun stuff but important stuff. The spoons just don’t go as far these days. 

Life is tiring at the moment and there are good people I have not seen in months. I’ve done two blogs in about 3 months and I’ve missed a number of WAG events. All of this makes me feel like I’m letting you all down. I struggle daily to get dressed and do normal things and I worry about most people before myself. It means the pressure builds and I forget things. Life has to be planned meticulously and I hate not being able to be spontaneous with my family and friends. 

It is even harder at times like this when I see friends and family mourning and missing loved ones and not being able to instantly drop everything and be there. So whilst I have been neglecting life recently please know it is not through choice but necessity. Some long battles and some short ones have taken their toll on me and the need for so much change has left me tired. I’m hoping things will improve but I always say this, so if you’ve been waiting for a catch up, a blog or even a text ping me another message, I will get back to you. I’m just prioritising spoons for DWP paperwork, social services paperwork and two funerals celebrating lives of two important people. 

For now peace out, be kind to one another, look for what makes you unique but also gives you shared causes to believe in and remember if I can keep on wheeling so can you! 

3 thoughts on “Neglecting life…. 

  1. I’m sorry life isn’t going so welll. I hope things soon get better for you. I was also sorry to hear about Granny with the white hair. My Mum passed away last September, and she has left a big hole in our lives. Her great friend Peg also passed away in April, and after my sister and I had been to her funeral it felt as if a chapter had closed our lives. I hope the funerals go well – remember they are a celebration of a life as well as marking someone’s passing. I wish I could send spoons over the internet, maybe one day!

    Liked by 1 person

    1. Thank you Linda. I’m sure things will start to improve you know what it’s like everything comes at once and it makes it all harder to focus on and you feel like you are drowning or taking one wheel forward and two backwards. We have fond memories of Gran and my friend Rico and we are trying to cling on to those. In some respects for both it was a release. Gran had developed Alzheimers and was less and less herself each visit and Rico had very aggressive cancer and was in a lot of pain at the end. Still doesn’t make it any easier when you get the phone call. The celebration of life is very true and we will most definitely be doing that although probably after the tears have come and gone first. You are still very much on that list of people I want to meet up with and apologise it hasn’t happened yet. Just knowing people are reading and understanding helps in its own way although if you could develop an app to send spoons that would be awesome x


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