My brain feels all fizzled right now. All the brain fog, drugs, treatment and overwhelming amount of information I’m trying to process as well as daily life is getting a bit much! I don’t mind saying I had a big cry on Friday, proper break down cry, but I needed to and it’s okay to cry, if you keep it all inside it just makes it worse. I’ve done that and it’s not a good idea. Letting it out and talking is important not just for your own mental well being but those around you too, we often forget what we go through, what we say and what we do affects those we love as well. There can be so much shame and stigma around struggling and there shouldn’t be as how do we expect people to reach out when as a society we conflict that by ‘just get on with it / ‘your a man, men don’t cry / ‘come on, people have it worse than you / ‘your strong and brave / inspirational
A lot is changing and that is fantastic but there is a long way to go and that’s why every little bit counts, little bits of awareness, honesty and showing others it’s okay to reach out and it’s okay to struggle but know there is always hope too.
Within life we can sit and moan practically anything from the weather to our friends, neighbours and even strangers. Running late to the bus or missing the train we moan to ourselves and social media too. We can moan about everything and anything from the smallest things to the biggest things. Everyone does it in some aspect and it’s something we’ve acquired to. But yet when you suffer a life changing event like an accident or an illness it seems that ability and freedom to moan without judgement disappears.
When you get diagnosed with an illness or disease particularly chronic conditions it seems like overnight you should transform into this ‘superhero and inspirational non complaining person’ but how true is that?
I’ve seen on quite a number of shows doing interviews with parents of children/teenagers and adults as well with serious illnesses saying that ‘they never moan, they’ve never once asked why me? Never once said this isn’t fair’ but how real is that? It’s important to try keep positive when your diagnosed with any illness especially a life changing one but I personally believe it’s okay to moan, to ask why me? How is this fair? We are human and being strong does not mean you can not question when bad things happen, you cannot be upset or angry about it that is a normal and completely understandable reaction to have. I mean I had my dreams in sight with some difficulties but they were there then a big ton of bricks ‘the illness’ came and knocked everything out the water. Of course I felt angry, I felt confused and upset and I didn’t how to handle it. But society and social media can sometimes make us feel like we can’t moan, like with illness we have to suddenly be strong and inspiring and positive. But telling the raw emotions is as important so we tell society that it’s okay to feel what you feel, yes you must keep going and you must keep fighting but you’re allowed to grieve and your allowed to not feel okay.
I obviously have so much respect and admiration for people who are struggling with chronic illness, pain and disabilities that are able to stay positive all the time and to ignore all the negatives. Of course this is the best approach and healthiest in the long term for your mental and well being if you are able to but it’s not always that simple and what’s important is knowing it is okay to not be okay, no matter the circumstances.
When I first became unwell it was quite sudden, I’d had symptoms and problems since a young age but no full diagnosis and when it deteriorated I went down fast. During that time I got in fluxed with cards and messages and gifts. But throughout all the messages there was the same few words that came up – ‘brave, strong, inspirational and more’ not that I mind being called strong or brave it was just I didn’t feel it? Nobody had called me that before, or very little and suddenly everyone was doing it? I felt a mixture of gratitude but confusion. Was it just because I was ill? Over time as we realised my condition was chronic and getting worse slowly friends slipped away and I was left with the people who stood by me, from friends I’d known for a long time to people I’d just met online and in person. But that support back then and now means the world. I found it hard to accept being called an inspiration as I really don’t see myself as that, I’m not anyone special, I’ve not climbed mount Everest or raised millions of pounds for charity, I break down, cry, scream and shout just like anybody else. I do what I can to help and I enjoy helping others. I want to achieve my dreams just like anyone else but isn’t that what most people want? Yes I have barriers in my life and sometimes, well a lot of the time they make me want to scream and cry all at the same time but we all have obstacles in our lives and things that bring us down to the deepest of lows no one has it easy. Some have it easier than others that is true but everyone struggles at some point in their lives. I know a big reason why people find me inspirational is because I come across mostly positive on social media and to other people that’s amazing to see. But one person made it clearer for me by saying:
‘It’s not just you being positive on social media it’s that your positive but honest, you don’t sugar coat things and you say when your not okay and that takes guts but at the same time at the end of every post or message or blog you always end on a positive note and even though you may not feel positive your trying and that’s all anyone wants to see. It inspires me and everyone else to keep going in our own lives and struggles despite what may bring us down we must just keep swimming as you say and that’s why your strong, that’s why your inspiring’.
I think after reading that message it was the first time I allowed myself to feel ‘strong, or inspiring, to feel that maybe it was true what people were writing and they weren’t just saying it because I was ill. I am no different to anyone else, well as in of course I am different! We all are and yes I do have a horrible illness which if I could change and go back to my plans and dreams before I would in a heartbeat and that still brings me to tears now, but I can’t. So I have to keep going, I have to fight. Fighting for myself, for my family and the ones I love, the ones I’ve lost and all the people who are fighting similar battles around the world. Do I break down? Oh yeah. Like I said I cried a waterfall on Friday and that’s not unusual! I’m still struggling coming to terms with it all and unfortunately with this illness the mass of complications that come with it mean if your not dealing with one organ your dealing with another. There is bouts of stability but they don’t last long. I hope into the future things will become stable for longer. Will I ever be cured? No. But do I hope to one day be able to achieve some of my dreams? Yes. I lie in bed at night and dream of hope for the future and my dreams and goals just like everyone else. Like I said at the beginning I don’t feel any more special than anyone else and we are all inspirations to one another, we all have amazing skills and strengths that together means we can achieve phenomenal things.
I don’t feel an inspiration or anyone special as I just feel me really, the illness changes a lot but in the end I’m still little old me but if people see me as an inspiration and through that someone can feel less alone, or able to talk about things or raising awareness then I am glad, I’m glad I can be that inspiration to somebody just like I look up to many people inspiring me.
Just remember if you think me or someone else is an inspiration know that someone else is looking at you thinking ‘wow, she/he inspires me’ and you don’t even know it.
You may think ‘no I’m not inspiring at all’ but trust me you are. You ALL are.