Don’t judge a book by its cover

One thing I have really learnt over the past few months is the fact that things are rarely how they seem. A person can be smiling and look fully healthy, but underneath it all they can be broken and scarred. Sometimes there are signs of their fight directly under the clothes and sometimes it is something even deeper. Whichever it may be, this strong person may feel shy or ashamed about it and just wants to “fit in”. Some decent clothes and a bit of make up (for women at least) and shazam, it’s like a different person compared to the one in the mirror earlier that day.

The thing is, these scars are evidence of the fight we have been through and proof of how strong we can be, yet somehow I do sometimes feel a bit ashamed about it. When these feelings kick in I realise how silly I am. Depending on the level of my mental health and strength is at varies and leaves me feeling stronger than anyone and anything one minute and the next so small and ashamed just wanting to hide away. Ever since that day I met the stoma nurse for the first time and put on a stoma bag to “practice” and get the feel for it I have done my best to be open and honest. That first day after the initial shock of what she had showed me, I put the bag on, and walked around the ward making the nurses laugh, filling the bag with water and doing silly dances. I guess this was my way of trying to cope with it, making happy silly memories and making other people smile when they saw me with it to give the whole idea of the stoma bag a more positive mark in my brain. After surgery I have carried on being open and honest with regards to Stevie the Stoma, as you know, and it has helped me. I openly show everyone who wants to see how my stomach looks with scars and the bag. Helping people understand more about the situation has been a massive help in my own recovery, but I’m worried about how it will feel when I show my body in public like at the beach, to people who I have not been able to speak to and talk to about it all on beforehand. It worries me yet at the same time I look forward to seeing how I will cope and how other people will react.

My body is so much healthier now than it has been for quite a while, I have gained weight again, and am looking healthy. I am still however very tired and haven’t built up my muscles completely yet but it’s all a process that is slowly moving forward, I hope.

The other day I  sat looking through old photos on my phone and ended up way back in October. Oh my, seeing those photos made my heart all heavy. I cannot believe how much weight I lost, how ill I looked, I was skin and bone, a pale ghost of my former self. After surgery I took a picture once a week to follow my progress, however only for a few weeks. My swollen stomach, skinny legs, big plasters and catheter. I scare myself looking at these pictures now. How did I not scare everyone else that had to see me at the time? Or maybe I did but people just didn’t say it or show it. I didn’t share these pictures at the time because I didn’t feel that it was the right thing to do then, but now I can look back and be happy to be well.

I’ve been to see a cognitive therapist now to try to help me with this stress and chaos in my head. It is fantastic talking to someone who has no direct connections to me, won’t suffer anything I say, won’t have extra thoughts or put any extra pressure on me, but who listens, gives me new ways to tackle my thought war, tells me if I have done something kind to myself, and just listens. This is one of the best things I have done, and I really wish I had gone to a cognitive therapist earlier, but better late then never! Today was my fourth time and man it was tough. A lot of difficult thoughts to try to deal with and plenty of tears, but it is worth it!

My life got flipped, turned upside down, yeah sorry I did just start singing the Fresh Prince of Bel-air theme tune mid sentence but those words are true..anyway, back to what I was saying. My life got flipped, turned upside down from out of the blue, and as a person who has a controlling tendency by nature already, I cannot stand when things change and my ideas and plans change, whether these plans are very loose or set in stone. The surgery woke a lot of questions and issues in my head, hence the stressed chaotic brain that needs help, and I have been thrown off track. Off my lovely track of living in the moment and not stressing about the future. Now, my body has changed, things have happened to me that I cannot control to the same extent as I have been able to and I think this is why I need to be able to control all these awful stress thoughts about the future and turn them into various structured plans in my head, even if there are several different plans along side each other covering various different paths that I may take in life. I am hoping that if I can get control over these thoughts, align them in various “story lines” then this constant feeling of stress and of being chased might calm down and I can possibly try to live a bit more in the moment, like I did once upon a time. I know this may seem obvious and logical, but in my messy head I just couldn’t get this plan together, it is thanks to my therapist that I have been able to work this out. So next step is to get in touch with a surgeon and see if he can answer all of my questions. I am so happy and grateful I have been able to go talk to someone, and I would recommend that everyone gets to go to therapy and talk about everything and anything. It’s a great opportunity to learn new ways of dealing with problems preferably before they become a problem, and I wish I had had the chance to go earlier.

To me the scars in my head are the worst. My self esteem at a low, mood swings, negativity, downwards attitude that appears so often. It just isn’t me! How people have the energy to be around me, most of all how Axel copes living with me s a question I just cannot answer right now. I am probably the worst girlfriend ever. I am not myself. 50% of the time, this is me. I hate it. I try to get myself out of this dip, and I know I am allowed to feel like it, but I don’t want it going out over the people I love, specially not if it means I am pushing them away. I wish I was as good at hiding these feelings at home as I am when I am out, but somehow it’s impossible. Then again, if you cannot be yourself at home then where can you ?

My scars are proof that despite struggles and knock backs, I have survived. I hit a low and am climbing back up again. The scars on my inside are invisible for everyone else. No-one can see the lack of large intestine, the aching body, the fatigue, the chaos that is in my head. The tiny scars on my body show how I fought to get my life back, unfortunately in a rather dramatic way, which in all honesty was the last road I ever thought or hoped I would be led down, but life had its own plans, and I need to remember whenever  times get tough that these scars from surgery are a reminder of my own strength, both physically and mentally. There is nothing I can do about it now, and in all honesty, the value of life that I have now is  so much greater than the pain I was in with painful flares and constantly worrying about what to eat and not eat, blood values and undernourishment. The stoma bag like a knight in shining armour saving me from the bathroom hell I was trapped in. Although my knight in shining armour ended up being Stevie the Stoma, a little bag of shit, haha. But you get what I’m trying to say. These scars are what people will see when they look at me. I guess it’s one thing I will be getting judged on when they see me without clothes. But for now, in the cold weather, out for meals, at work, out shopping, having a glas of wine, people will see what looks like a perfectly healthy happy girl. This in one sense being true, yet there is so much more to the story.

My silly dance, 31st October 2016, the day before surgery.

I am going to spend the rest of the day in my new ‘Cat nap’ åj’s because I am in that mood! I am slightly in love with this pj dress actually! And thought it was a bit suiting with the snapchat cat filter, haha. But it does really show how much the filter changed my face.