Behind the scenes of me

I’ve been putting off another operation for weeks and months. Firstly, because as for everybody, life is just stupidly busy. Secondly, because of the guilt and how inconvenient I feel it is to everyone. For me, I have to remind myself to not see a pending surgery as a negative situation, rather a positive that I will get another good year or two of a pain free run. Well, maybe not free but as close as it gets. I’ve never spoken to anyone about how worthless I feel when this happens, I can’t be as good of a mum or wife as I like to think I normally am.  I struggle to walk some days and I become so ashamed at myself that I just try to ignore it and get on with things. I am not one to complain and I guess I hate appearing weak in front of my family, kids, friends and the onlookers. I don’t like sympathy. Recently, I’ve been inspired by other Mum’s who have shared their experiences of coping with illness and being a mum and that it doesn’t make you weak, a failure or a high maintenance friend, that we can support each other through these chapters of our lives too. 

After I had my hysterectomy and the infection that nearly took my life, I have suffered ongoing daily pain because of the numerous surgeries I’ve had during and after my initial recovery.  It’s not something I like to talk about and it’s not something I’ve ever really shared in too much detail. I feel somewhat ashamed of myself and I’ve never really had the confidence to open up about it and how it actually makes me feel and what it’s like to live with.  I have an embedded paranoia that after so many years of my life being hospitals, surgeries, random weeks of shutting down that it’s essentially an eye rolling subject for people and they are sick of hearing about it.  I do understand that I am a lucky one, I get to see my family every day, I was privileged enough to be able to have kids and I get to hold them and watch them grow; I no longer have to spend weeks or months in hospital; I get to live a relatively normal life and I am no longer at risk of the outcome being leaving this world like so many other people have to experience.

As a teenager, I was diagnosed with moderate to severe endometriosis with it also being found on my ovaries and bladder of all places. There is now a greater understanding for this condition which hopefully means a lot of women and young girls don’t have to be given the advice to suck it up and get on with things.  The pain I experience now is a little different, the only way I can think to describe it is that it’s like regular period pain, every day, every week relentlessly for years on end that sometimes peaks to something in the realm of labour pain. I’ve been pregnant five times and had six babies so I know it might sound extreme but it is as close to accurate as I can get. Sorry to the guys reading though, it probably doesn’t help that much! It has a flow on effect through so many areas of my life; it affects my family, my work and my productivity on so many levels. It’s fatiguing and breaks my motivation at the worst of times. I have projects on the go and ones that need getting off the ground and during these periods of time nothing gets done, my motivation is ruined and just as I’m getting some positive momentum going it smashes that too.  It grinds my training and exercise to a halt, which is something I miss very quickly. Staying active is a great way to achieve and maintain a positive mindset and a strong body which is so important.

I big chunk of the pain I experience can be attributed to adhesions. It doesn’t sound very sinister and I rarely come across anyone that knows what they are when I mention them. The ever-reliable Dr Google says this;

Adhesions are fibrous bands that form between tissues and organs, often as a result of surgery. They may be thought of as internal scar tissue that connects tissues not normally connected.”

So basically, my internal organs and tissue get banded together in some abstract Picasso sort of way that can be excruciating as it pulls and tears from sometimes even the slightest movement.  People have their opinions on the topic of adhesions and say to avoid further surgeries as it creates more adhesions and further problems.  Unfortunately, it’s one of those sticky situations (see what I did there?); I am fully aware that each operation causes more scar tissue, however, when your bowel is stuck to your stomach wall and it’s causing excruciating pain you have to get in there and send everyone back to their corners. Too many people believe it’s a mental thing, so you try to do what you’ve always done and suck it up and get on with things. So, when you have a surgery and are told you had an epic adhesion that stretched from one side of your body to the other, you are not only relieved because the adhesion has been released but also that you aren’t in fact crazy and a little too soft.

One thing I struggle with and I always have, is asking for help. As a mum I feel like I’ve failed if I ask for help. I try to be the first to offer it and feel privileged and blessed if someone asks me for it. My whole motto is treat people with kindness and support each other so I’m unsure why it’s so hard when I have to accept or ask for help myself.  I am guilty of isolating myself by pushing people away, withdrawing from the world when it all gets too much. I would rather cope alone and deal with the pain by myself than be a burden and admitting to anyone that I’m struggling. A simple “How are you feeling?” from my husband can send me over the edge because I just don’t want to admit that I’m not okay; that I need help and can’t handle the pain any more.

I don’t want my kids to keep growing up, asking me if I’m going to die when the pain is so bad. I don’t want them having to worry if I’m going to come home from the hospital again. I know it’s still as raw for them as it is for me to think about when the possibility once existed that I wouldn’t come home. I try to protect them from it as best as I can but in all reality, this is my life. I will potentially have to deal with this for the rest of my life and talking about it is the first step to me accepting that; to helping other mums who feel the dreaded mum guilt because they can’t be everything all the time. I was told by someone very special to me that guilty is not a feeling, you can’t see it, it’s not a thing so it doesn’t exist. Probably going to have to repeat that to myself a few more times!

These last few weeks have seen me fairly quiet on social media; I haven’t had the energy and I’ve felt quite angry at myself for it, for not wanting to chat, message and blog, for just wanting to curl up in a ball and try to sleep because it’s the only thing that gives me somewhat of a time out. The outpouring of support, messages and shared experiences from women, men, mums and younger people has been overwhelming and shows that this is something that should be talked about. A common theme seems to be the relief of just knowing that you aren’t crazy and weak can be so reassuring and lift a massive weight.  I just wanted to share with you all something that is part of me in the hopes to help someone else.  There is nothing wrong with asking for help and I hope I can be a strong role model for my kids.  Teach them to be empathetic, be as understanding as they can be to anyone else going through something similar and to show them that when they see I’m down, I get back up, deal with it and move on. 

Love,

           Rosie