Jim isn’t sat in his bed crying…

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Hi everyone, how is this pandemic lockdown treating you? A bit shit? Yeah, me too. I have been watching A LOT of TV. And I happened upon Ben Fogle’s New Lives In the Wild on 5 on demand. It’s a show about people who have moved to and live in remote areas of the world. I saw an episode based in Australia (Series 6 episode 1) about a couple called Jim and Kim who live on their own island just of the coast of Australia. And it hit me hard.

Jim had a bad accident years ago that left him unable to walk and in a wheelchair for two years. He broke almost every bone in his body after an accident. He spoke very honestly about his recovery, and how the mental side of recovery and PTSD has been tougher than the physical side. He said he was in pain almost constantly. He was so down to earth and honest, he talked about how it had taken him years to get to the point he was at now. But how the experience made him decide to completely change his life and move to a deserted island. It was totally unoccupied and he even got to name it himself! He lives on Wilderness Island.

I cried as I watched the show. I don’t know what exactly it was, but it hit me in the gut hard. He was really open about the physical and mental side effects of his accident and I just felt really drawn to his story.

I had my first surgery in 2013 to remove my colon, since then I have had 10 major surgeries that have changed my life completely. Each one I think will be the leap home (90’s reference here! If you haven’t watched Quantum Leap, go do it immediately!) Every time, I think it is going to be the surgery that makes everything ok again, that I will be the same person I was before all these operations, that I will be ‘normal’.

And it is only all these years later that I am beginning to accept that life will never be the same. That this is probably something I will always have to live with. The chronic pain, the fatigue, the medications. This isn’t something I am finding easy to accept.

We are 10 months into this pandemic and lockdowns and the world is a very different place to what it was. We are all having a tough time. I am feeling so overwhelmed and unmotivated. My depression is back and Im taking antidepressants. And I am finding it so hard to just get out of bed in the morning.

Today, I had a couple of lectures and some work to do and I just didn’t want to get up. I laid in bed and sobbed. I just wanted to hide from the world. But I started thinking about Jim and said to myself ‘Jim isn’t sat in his bed crying. He is living his best life on Wilderness Island! If he can do it, then so can I.’

I got up and got dressed. This may not sound like a big deal but I literally live in jama bottoms and a dressing gown at the minute. If I do get dressed, its usually in joggers and a jumper. But I got dressed, I put on a lovely dress I bought ages ago and have never worn and I logged onto my computer and did my lectures. I made some art. I went for a walk. I filled my Pinterest board with pretty things I want to make in my garden. I made a nice tea for us. I changed my bedding.

I know these aren’t major accomplishments to most people. But today it felt like a real win!

Now I know some people are struggling so much and please don’t think for a second that I am belittling anyone or suggesting that a walk and some positive thinking can cure depression or solve all the world’s ills. I also know that some days, all you can manage is to get through that day by sitting in bed crying, and that is OK too. Today, I knew I needed more. I needed motivation, I needed inspiration and you take what inspiration and motivation you can. Today, I didn’t have any of my own, so I borrowed Jim’s.

Jim is living his best life even on the days where it is dark and painful and tough, and maybe I can too.

Peace and love

Sam xx

Acceptance of a life changed

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I sort my medication out on a Sunday. I have one of those pill boxes with all the days on it and separate compartments for times of the day. On a Sunday, I sort out my medication for the following week, bursting the foil packets and popping out the pills. Monday: Morning, Dinner, Tea, Evening. Tuesday, Wednesday, everyday. I look at my bedroom bin filled with the empty containers. I scroll through my repeat medication list on the website. Scroll, I actually scroll as it’s so long.

But this week it feels different, I suddenly recognise that this is routine now, habit. That those repeat prescriptions are a sign of a life changed. The repeat, repeat, repeat, its my life but not the one I expected to have. I am 40 this year and I suddenly see myself as how I am. And its a shock you know. It shouldn’t be a shock, its been eight years now of surgeries, hospitals, medication, pain, struggle. But I feel the shock and wonder if this is acceptance?

I thought I had dealt with these feelings, I thought I had accepted. But maybe I only accepted a temporary change and thought at some point, my life would return to ‘normal’. Maybe that is my mistake, thinking that ‘normal’ meant the same as before when in reality, every persons normal is different at different points in their lives.

I feel loss. Like I don’t know who I am any more. When I look in the mirror I am not too sure who I see looking back at me and that scares me. The person I thought I would be, the person I was has gone. Well maybe not gone, but is buried somewhere that I am not sure I will ever find again. And I am not sure who is left.

I suppose that what I am trying to describe is grief. I know I need to reach acceptance and to get there I think I need to grieve a little. And I feel bad saying this in a time when so many are actually grieving the death of their loved ones, it feels selfish. But I do feel like I am filled with grief.

I hate that I take so many pills just to get through the day. I hate that I am weak, and tired, and in pain each day. I can’t stand the limitations in my life, that I can’t walk far, that I can’t do the things I want to do, the things I thought I would be doing. I want to go for long walks, to explore, to run and jump and skip and play and dance.

I hate how my body looks. Which is hard to admit as I think I had gotten to a place of self love. But now I look at myself naked in the mirror and all I see are scars, and lumps and I feel I look grotesque and disfigured. That is a painful thing to say here, because I know that if I heard anyone say that about themselves then I would leap to their defence! I would tell them they were beautiful and perfect and that they were the king or queen of the whole god damn world!!

I feel that I let people down all the time. That my illness and pain makes me not enough. Im not a good enough mum, not enough of a wife or a friend. And that is hard to accept. Because I know I am trying my hardest and actually I know that is enough. But it feels like such a raw deal for the people I love.

I have been looking back on old photographs recently and I see myself and I wonder where she went. I don’t know, it is weird and I don’t even know if this post is making sense. I just feel so crappy and I thought I would blurt it all out on the page so apologies if this is a bit all over the place but I suppose it is because I am all over the place.

But as negative as this post is, I think that the recognition of how I am feeling is a step forward in the journey of acceptance.

I try and find the positives, and I know that I am incredibly lucky in so many ways, I have a brilliant husband and children and so many brilliant friends and family. I live in a nice home, I am safe, I have food in the cupboard and money in the bank. I am privileged in so many ways and I am grateful of all the good things in my life.

I don’t think my life will ever look like it did before all the surgeries started, but maybe different is ok. Different doesn’t mean worse, it just means an alternative to what I expected. So I need to carry on learning to accept and having gratitude and love for the things I do have and for the future, however that may look.

Peace and love

Sam

New art – wild swimming and skinny dipping!

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For Christmas I commissioned a brilliant artist Philippa Walter to make a print of Timm and I. I found her work on Instagram and fell in love with her lino prints. We discovered a love of wild swimming last year and though we haven’t actually been skinny dipping yet, we might do in the future!!

I really wanted something that showed my ostomy bag and scars so sent her photos of my tummy and our faces, though I didn’t send any nudey pics of us so the rest is artist’s interpretation!!

lino print of a man and woman skinny dipping and wild swimming in the night time
Photo via Philippa Walter Art on instagram

I absolutely love the result, it is so personal and beautifully done. Philippa was a joy to work with, she really listened to what I wanted and her work is just wonderful!

lino print of a man and woman skinny dipping and wild swimming in the night time hung on a wall

Timm loved the gift and it is now hanging in our bedroom. I can’t recommend Philippa enough, so please do head over to her instagram philippawalterart and check out her fabulous work!

Peace and love

Sam xx

Journalling

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Last year I decided to keep a journal, not so much a diary but a book to draw in, make notes, save clippings, cards and photographs. I called it my Stuff and Nonsense book and for the first time ever, I actually kept it up all year! I have tried to keep a diary before, but every time, I forget or just don’t have the time or head space to write in it. My journal last year felt much freer and simpler. I didn’t need to write in it every day or every week, but it was a space to vent or share or just put pretty things.

Journal

I will keep another this year, as I do feel it really helped my mental health. It was a private space (though I am going to share a few pics here) and I used it in bad times and good. What was nice was looking back through it when I was having a bad time and remembering that there were nice times even in the darkest days.

In February last year, I had my last major surgery and afterwards I was incredibly poorly. My stoma stopped working and I had to go on TPN (Total Parenteral Nutrition) and had an NG tube (Naso Gastro tube). My kidneys began to shut down and I had a stage 3 AKI (Acute Kidney Injury). Almost a year on, I am still recovering and dealing with after effects from this both physically and mentally. The journal gave me a place to share whether that was artwork, poetry or just a blurting out of words and images that explained how I felt.

I also kept a list of all the books I read in 2020, I love reading and I think writing them down actually made me read a little more than usual.

Ive seen a lot of bullet journals that look beautiful and though mine may be a little shabby and rough around the edges, I love it and think it will be a great thing to look back on through 2020, one of the weirdest years ever! I will definitely be doing another in 2021.

Let me know if you have a journal or diary and how it has helped you.

Peace and love

Sam xx