Acceptance of a life changed

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!

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

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