When we are no longer able to change a situation, we are challenged to change ourselves.
“Life is too short for long pity parties. Get busy living or get busy dying”.
That’s the most inspirational quote I’ve read recently. It’s been a while since my last post and a lot has happened. I was thinking of writing sooner but I needed a right moment to be able to summarise everything.
Things are different. I got to the stage late August when I had to switch off something as I felt really pulled in all directions. I needed to rest and re-charge batteries and think what’s important. What’s worth concentrating on. What actually caused me to react like that was someone saying to me “I thought it finished now”. It’s quite common I think for people to think: ok so you had a rough time and now it’s finished, chemo finished… it’s all fine then, right? Well… no, actually it’s not that simple. Yes, I’ve been waiting all year pretty much for this nightmare to finish. And it has and ok so now what? Life is never going to be the same. Cancer is something which changes you and your family forever. You can’t go back to before cancer. You KNOW about it now. You revaluate your life. Your life is different.
When my father passed away I noticed something which now applies to few other situations in life. When he died, people all of the sudden decided into those who KNOW and those who DON’T. People who get it as they have been there themselves and those who haven’t got an idea. It’s not to say that those who don’t know, cannot be at the same time very friendly, understanding and empathic. But they haven’t been through the same.
Things did built up at the end of chemo, but I didn’t crumble. I put myself first and realised what I need and I did it. I felt proud of myself. I started to stand up for myself and believe that I can be right. I started to believe in myself rather then others.
I havne’t been at work for 3 weeks, I switched off that completely. It helped to narrow the things which were happening. We went on holidays and I drove first time on motorways and did few hundred miles there and back! I was sooooo proud of myself. I can do that! I even kind of liked driving on motorways. Something I didn’t expected.
When we got back and I returned to work I realised I actually got now something in a shape of coping strategies. I have never been able to use them before. I learnt to understand that feelings are not me. I have feelings and they are temporary. It’s ok to feel frustrated, it’s ok to feel angry and it’s ok to feel worried at times.
It wouldn’t be possible without the counselling I had. I have finished now my CBT therapy, I have a catch up meeting in 3 months time to decide if I can be discharged. I have had a break in counselling as well due to holidays but I’m still continuing that. But I also discovered Katie Piper. I discovered her before the Strictly Come Dancing actually. A very long time ago I saved some programmes I thought were interesting on my favourites on Channel 4 application. And she happened to present one of them. I then researched her story and starting reading her autobiography. And then she actually announced she was taking part in Strictly. I so wanted to write to her but it’s pointless now when she is in the TV show as I’m sure she gets lots of post anyway. But I do admire her not because she is inspirational and she went through hell (and she did, and she is inspirational) but my magnet was the way she cope with anxiety. The way she described how she felt was exactly what I was writing here. I have minor PTSD no doubt. And I realised that people fall and get up from much more difficult blows that life gives them. And that what happened to us wasn’t good but it is definitely possible to lift yourself up. It’s all in your mind and attitude. You have to work hard though, nothing come easy. I definitely felt confused and had many moments of this not working. But then slowly things started to fall back together.
I was also recommended a wonderful wonderful book by Regina Brett “God never blinks”. It’s 50 lessons for life and they are amazing. Out of 50 everybody can find the ones closer to their hearts but the one which stood up for me is the one opening this post. Life is too short for long pity parties.
Ok life isn’t perfect and I know the road is not yet complete. I still have little set backs. I still feel very very vulnerable. I still don’t know if the seizures will return and if they do how would I react. BUT I have now moments when I think they aren’t as scary as I kept thinking before. Only moments thought but it’s an improvement.
Going back to work is difficult as my older daughter developed separation anxiety and she shows classic signs of anxiety now. And I don’t want her to be like me but I don’t quite know yet how to deal with it. So, things aren’t as easy as it may seem but I decided to play the positivity card. Let’s get busy living, not dying.
“How shall I attain Eternal Life?”
“Eternal life is now. Come into the present”
“But I am in the present now, am I not?”
“Because you haven’t dropped your past”
“Why should I drop my past? Not all of it is bad”
“The past is to be dropped not because it is bad but because it is dead”
Anthony de Mello “One minute wisdom”
Today I’ve been thinking about many things. I’ve just finished my week of 5 nights and I always get very messed up in my thoughts after working nights and especially stretch of so many. I find people irritating and I feel extremely confused with what I think and what I feel and what is right and what’s wrong. So it’s probably not surprising I was thinking of many subjects. One of which was imperfection. I’m still doing Headspace and still really really loving it. I missed a day and I felt guilty. I felt I wasn’t enough for that. The application is counting the streak of days you meditate and I already saw in my mind how the count goes down to zero. I failed. Yes, that showed again how much negativity I have in my thinking and how much I am not kind to myself. It also in a way would really defeat the object of mediation…. if they were putting you down after you think you “failed”. Of course it wasn’t really a failure. My husband advised that not many would manage to meditate as well as working 5 nights, looking after children and him. And also I managed to squeeze in a favour for a friend and got back to embroidering which I realised how much I’ve missed.
And then the following day there popped up two quotes from Headspace. I set up in my options that I’d like to have those pop ups. I like quotes and I’m glad I’ve done it.
“So much effort goes into trying to be perfect. But how much attractive are vulnerability and imperfection?”.
That’s an interesting thought… I’ve never cut myself some slack to be honest. Things are either black or white for me usually. And yet this quote made me think…. What actually p perfect is. It’s something I’m aspiring to based on my own standards. Yes, those came from society, ethics, culture etc. but also from my own brain which learnt somehow false outlook at reality (see post about my childhood). So I’m trying to be perfect according to my own standards. And I wouldn’t allow myself for a mistake while I’d give much more lee way if dealing with same stuff in other people.
Why do I want to be perfect so much? Why do I straight away feel like a failure if I don’t meet my own set of standards. Surely if I set the standards I should be able to change or bend them. Probably that’s why I’m a bit scared to feel less anxious in case I have a set back again which I’d see as a failure.
Is imperfection and vulnerability attractive? I don’t know. I haven’t come to a conclusion about that one yet, it just highlighted for me that there is a different point of view. We all aim for perfection, perfect body, perfect figure, perfect clothes, make up hair etc etc Is it really worth it, is it really attractive?
The other quote which came up today was:
“It’s tiring wanting things in the mind to be different then they are. Take a day off”.
A day off??? That wouldn’t come to my mind at all. So all my worried about missing a day…. how unnecessary they were! And that’s just showed a perfect example of anxious brain.
What actually a perfection is? Doing a long streak of days or doing things according to own needs and pace and be happy?
I said in on of my previous posts I started to look for people in similar situation. I posted a post on few Facebook groups asking to speak with partners of people with epilepsy. I got a huge response. I got about 50 messages? some of them are just one message conversations, but even those had advice in them. I tried to put together all I researched.
I noticed from the messages that people feel the same as I do. And you know what, it’s OKAY to feel like that. I think I deny myself negative emotions, like I expect myself to always be happy and perfect. But it’s not possible. And the situation I’m in is difficult. And it’s fine and it’s normal to feel like I do. As from the messages I had, I found that most of the people at least at the beginning of their journey with epilepsy felt the same. They felt frustrated with life, worrying and hopeless. They said they were constantly watching their partners or children. Their children had hard time to adjust. That it’s difficult to deal with it. They would give up but they loved their partners. They were afraid, afraid of new life, afraid the partners would hurt themselves and afraid of death. They just wanted their family to be ok. And one sentence I think had the most meaning in it, when someone said that people don’t realise how much it impacts your life when the partners AREN’T fitting.
I got much better advice how to deal with someone who has a fit. Better then the hospital which gave me no advice at all. The most striking advice for me was to smile at people coming out of the seizure. The other advice was to keep them safe, recovery position with cushioned head. I was told to keep seizure diary to work out triggers, medication and side effects. Take medication regularly. It also helps to have a rescue medication when they have a seizure lasting longer then 5min. It’s also important to be there for them and reassure they aren’t alone and also educate those around you. Some people had a code words for when seizures were coming. Others liked hot bath after, cold flannel on the head, head rub or cold yoghurt if tongue was bitten. Whoever had a seizure will need a long sleep afterwards to regain energy. I was also told to increase Omega 3, have high quality probiotics, organic food, reduce toxicity and use natural products. It was important to have enough sleep, exercise, keep hydrated and avoid alcohol. That’s just from other people’s messages and experiences. But it loads!
But I also got an advice how to deal with myself and my thoughts and feelings. People said it was important to prioritise self care and do something for myself, have hobbies. It was easier to take a day at the time, give time to process what happened. Give yourself patience, as you are dealing with something you’ve never dealt before. Do as much research as possible, contact organisations, talk to others. Take care of yourself. But also don’t forget you are family, make sure you do things together. It is ok not to be ok, it’s ok not to be a Wonder Woman. Accept you are going to make mistakes and learn the best way to handle situation (so important!! and yet so difficult). That’s the one I knew, worry only about things you can control and try no to think about things you can’t control. Have strength and courage to deal with new normal. It is something you do learn to handle. And time TIME – the most important aspect. You need TIME. The more seizures the easier they get to handle and the better you cope (as sad as it is). It is possible to manage it enough to have an enjoyable life. It may not be a life you wanted, but it doesn’t mean it can’t still be great. Be grateful for things you do have and do not concentrate on things you don’t have. Learn to accept it and grow with it. Don’t live your life in the fear of unknown. Make the best of what you have. Remember it could always be worse. It gets easier, it becomes part of your life and the seizures become less scary. Another important thing is to not look at epilepsy as a bad thing but as a part of who the love ones are. Don’t anticipate and think constantly it will happen, but just be prepared if it does. Take emotions out and deal with the situation as an emergency. Don’t feel sorry for yourself. We are strong even in the moments we feel weak. Take counselling. Do self-reflection, meditation. Take support from family and friends. Life goes on, times move forward and you only get one shot at the life. Nobody knows what tomorrow brings so just do what you can each day and be as happy and healthy as you can. Seizures aren’t HIM, that’s what he HAS.
Over the time you will learn the best thing to do and that there is very little you can do.
And time, 100% TIME.
Isn’t it a beautiful advice??? I was so touched by the response I got and by the support. I was so amazed people are dealing with it everyday and coping so strongly and bravely. I’m overwhelmed by the support they showed and by the way they dealt with the situation. Thank you.