Today is International Women’s Day and everyone is celebrating equality, but all I can think about is my appointment tomorrow and how my anxiety levels are sky high.
I’ve got an appointment with Dr Gooding’s tomorrow to discuss treatment options for future flare ups because as much as I’d like to stay in remission for the rest of my life, the chances of that happening are very, very slim. I’ve a horrible feeling I’ll just be told that enemas are the only option as there is no way for the medication to reach my rectum otherwise. However when I had a flare up over New Year it seemed to be bought under control through a course of good old prednisolone, so there is always that option too. This may all change though depending on future surgeries though, but thats another appointment for another day.
I’m also seeing the stoma nurse tomorrow as I’m not coping with things very well recently. I thought I was doing okay, but I’m not and I think I need help.
Everyone praises me about how “strong” and “brave” I’ve been through this whole thing, but if you don’t laugh and get on with things, you’ll just spend all day every day crying. I think unless you know someone who is, or has been through the same thing, then you don’t really see the bad side of being chronically ill. Even then, no two people are the same so even with the same diagnosis, experiences will be completely different. People say I’m doing well, but if only they saw me on a day to day basis…
They don’t see me on the days where I can’t get out of bed because my knees are too weak to hold my weight. Or the days where I just about manage to have a shower by the time my Dad comes home from work at 7pm because I’ve spent all day in bed hoping the discomfort will fade as the day goes on.
They don’t see me when I have breakdowns because the steroids are playing with my emotions and the littlest thing, such as a box not fitting in my wardrobe properly, sets me off into a full on melt down. It sounds so silly, but this has genuinely happened, more than once. I cried for ages and was shaking because I couldn’t get the box back in properly.
They don’t see me cry almost every day because I have so much hatred for my new body. Before I fell ill, I was just at the point where I was starting to accept my body for what it was. I was leaving negative relationships with people in the past, and embracing my body. Loving me, for being me. But now when I look in the mirror all I can see is this bag stuck to my tummy, and all I seem to do is put on weight and I hate it. The bag may have saved my life, but I still don’t like it and I’m starting to think I’ll never be truly accepting of it.
They don’t see the clumps that my hair falls out in every morning when I brush it, and the tears that consequently follow. I’ve been lucky to always have quite thick hair, so it isn’t as noticeable the amount that is falling out. My hair may look full of volume, but it’s just full of products, there’s no body to it. This photo may seem extreme, but at least once a week, that much hair falls out in the morning.
They don’t see the loneliness I feel day in, day out. Being at home every day for the last 4 months has honestly made me the loneliest I’ve ever felt in my entire life. I know this isn’t true and there are people I can talk to, but I hate being a burden. Sometimes I hate the fact that I have this, and the hurt it’s caused my friends and family from me being ill. But then I am equally grateful for those who have stood by me and put up with everything. But at the same time, I hate to say I feel lonely, because I know I’m not. Beating myself up about being a burden just makes me feel worse, and it’s a vicious cycle I can’t seem to break free from.
They don’t see any of that because I do what I always have done and I put on a smile and pretend I’m okay to the outside world. There are times when I leave the house with no make up on, which isn’t a big deal but those are the days when it’s been a struggle to get up and ready – but I still try.
There’s a reason why people refer to IBD as an invisible disability, and I feel like it has definitely hit me the last month or so. I’m finding things very hard to accept and come to terms with at the moment, so I’m seeing the stoma nurses tomorrow to discuss counselling and other options for me.
I was told when I was in hospital that it would take longer for me to heal mentally than it would physically and I’m only just realising now what a massive impact the last few months have had on my mental health.
Mental health is still such a taboo in society and this is not okay in the slightest. Nobody should feel ashamed for having mental health issues, most of us probably do but very few admit to them. It’s okay to say you’re struggling and you need some help. There is always someone there to help, you are never truly alone. If you feel like you can’t talk to friends, family or colleagues, there is always someone else. Always.
Whatever you’re going through just remember it’s okay not to be okay and there is always someone there.
National Suicide Prevention
08000 684 141
08456 341 414
0845 766 0163