What anxiety is to me

So…. I’ve been thinking again while listening to “The Worry Trick” audiobook by David A. Carbonell PhD. I got this book accidentally – I was browsing Facebook as you do and on my news feed it came up with a free trial of Audible application. It came up with that book as an offer so I tried it.

The book definitely has some good points. I’ve been bookmarking the most important bits and I’m going to listen to it again and write it all down. But I think it described perfectly well how anxiety feels. And it feels strange. I’ve been trying to think when my anxiety started. The author suggests we are born with genetic predisposition or even in-born anxiety. And it is more likely to show itself if one of the parents have anxiety. I think I’ve always been somehow anxious but I thought it was shyness. I had many complexes too so put it towards that. I was always scared of things, like driving for example. I was petrified of driving. But some of the things I overcame.

The difference between a bit of stress and anxiety is how it feels. It paralyses you. It starts with a thought (usually with the “what if”. or something like that) and then it follows with a scenario. The problem is that the scenario seems very realistic. It in facts FEELS realistic. In fact, to me it feels like prediction. For most of my life I actually believed I had the ability to intuitively predict bad events. Now… did I really? Or did I have the feelings of anxiety (without realising what it was) and then I believed it was a prediction? intuition?

If we follow with an example. I get anxious about many things – mainly the seizures which seemed to be the biggest trigger for me ever. They freaked me out. The whole situation went out of control completely. So sometimes I get the feeling that what if Graham has a seizure? And then any justification follows: as it happened before at this time, in the evening, on Sunday etc etc. Then I’d try to argue with myself and say but it’s been such a long time, there was a trigger (chemo) or malnutrition after the surgery, blah blah blah, but the anxiety always wins with two answers: either: the first seizure happened before the chemo OR just because nothing is happening now does not mean it won’t happen again. So, after the little silly conversation with myslef in my head I get more and more scared. I then can SEE and FEEL it happening. In fact, the feelings are soooooooo strong that I can literally be almost 100% that the next thing will happen is the seizure. I can literally feel it happening. I can’t find words which would describe how REAL the feeling is. And the more I think the more I’m scared and then it can lead to a panic.

I don’t particularly like talking about it or even imagine it. But another suggestion in the book was that you can’t “unlearn” anxiety when it’s not there. So in a way – it’s like watching horror movie. The more you watch it – the less scary it becomes….

Yes, have used the word “unlearn” as I don’t agree with fighting with anxiety. Or even overcoming. I now after reading a bit of the book start thinking that it’s something my brain learnt.

It’s not just seizures which trigger me. That’s the biggest trigger. But even before it all happen I can clearly recall the evenings when I had a feeling that something bad is about to happen. That’s’ such a common feeling to me. I actually have to say that writing this has completely unsettled me. I feel very anxious at the moment and scared that I’m going to bring the bad thinking to happen by talking about them. But anyway, the prediction of bad thing. I can’t tell you what exactly bad is supposed to happen but I know it is bad.

And that leads directly to feeling dark, and gloom and depressed. And lonely. I feel sooo lovely when I’m anxious. Everybody’s life seems so perfect. Happy. And full. But not mine. I can’t relax since last year, even when things are fine they are not fully fine – at the back of my head the anxiety is awake. I think that what has mainly changed since the seizures, cancer and chemo. That the anxiety does not go to sleep. It sometimes is more silent and sometimes it screams but it is awake at the back of my head all the time.

But I am determined to find a way to make it sleep again. To unlearn the patterns. I just thought I’d explore first what I am standing against before I tackle it. I started from a suggestion in the book to get a pack of Tic Tac (or anything like that which is countable) and each time a “what if”thought comes to your mind – eat (or throw away) one of the sweets. This is to teach yourself to notice how many times the thoughts happen. I only say that I bought 18g packet of TicTacs with 37 sweets in it… and I just went to Tesco to get some more. I’m supposed to do this exercise for a week at least….. I started this afternoon (after school run) so let say 4pm and now is 9pm and I have 26 sweets left. 5 hours 10 thoughts. And I haven’t even counted the anxious feeling I had writing this post. And it can be anything. It can be even change of the place to sit. I usually sit on the sofa but I’m not sitting at the table and part of me keeps whispering in my head that maybe if I change the seat the seizure will happen. How ridiculous is that?? I can see it is ridiculous, I can be embarrassed it is ridiculous. But I’m still scared 😦 Among everything else – it is very tiring to feel anxious.

We are strong in the moments we feel weak

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.

Feelings

My counsellor told me to write about my feelings. I seem to have a strange relationship with my own feelings. I take them as facts. I feel so it must be true. Which objectively sounds quite absurdly. Although on the other hand, I remember from the Polish book by Andrzej Szczypuorski “Mass for Arras”. He said there that things only exists by their name. If you call a rape a punishment it becomes a punishment. So if you name a certain situation based on your feelings, does it become your truth?

My main feeling these days is anxiety. I wonder if I got some mild form of PTSD? Maybe I’ve learn a response after the first time I saw Graham having a seizure and my mind just reacts the same way. The first time it happened it was scary. I didn’t come across any seizures before, even though I’m a nurse. We were just sitting at the dinner table, having dinner. When we finished I got up to take the plates in the kitchen when Graham made some strange noises. He was trying to encourage our youngest to finish eating, so at first I thought he was making fun with her and thought – why is he doing it? he should be serious, not playing with her. But I don’t remember when exactly I realised it wasn’t fun, maybe when I looked at him. I don’t quite remember how he looked as all I remembered was the feeling of impeding doom. I knew something bad was happening but I didn’t know what. And how to deal with it. I don’t remember moving, but I know I was straight away next to him as he felt backwards and I was holding his head, making sure he doesn’t hit it on the stool behind him. He wedged himself between table legs. He was shaking, his eyes fell backwards and he was foaming around his mouth. He produced a lot of secretion! I was shouting his name in panic, I did panic. I checked his stoma as all I could think was – he had a surgery and it’s something do with that. And then I thought I would have to do CPR on him and I can’t do it on a chair and I can’t do it alone, that’s when I turn around to get a phone. But my older daughter was already there with the phone in her hand. I dialled 999, still panicking. The woman there was brilliant!!!! she talked me through it, she calmed me down. I managed to move him off the chair on the floor into recovery position. I was sitting next to him on the floor. After the shaking he stopped breathing for a moment and then started breathing very loudly. That’s when I moved him. I remember I never felt so relieved when I heard the ambulance sirens!! When they came I was so grateful. The paramedics are lovely people. I do admire their job. They took Graham to hospital and although I work there (not in a&e) I have to say that the stuff was less nice. I do understand when they come from, for them it is just another seizure, not really an emergency. Not life threatening – and maybe next door there was someone who needed CPR or had great degree burns or a child which needed help with breathing. I do understand that. But when they told us – you had a seizure, you can’t  drive for a year, wait for an appointment with neurologist, bye! it was a bit like – well… what now???? It’s actually quite a big deal not to drive. It’s a big deal to have a seizure.

Well, how that all made me fell….. scared. Anxious. Petrified. Down. Depressed. Panicking. Hopeless. Helpless.

Every evening now about the time when the first seizure happened I feel incredibly anxious. Days are easier, but still any sound, any scream, loud noise makes me jump. Makes me run to see if Graham is ok. I get confused when children playing loud. Many many times I jumped when someone made strange noise for fun, my heart was about 150 beats per hour at least. It’s a completely different life.

I can reason with myself perfectly. I shouldn’t worry about things I can’t control. Don’t worry about things not dependant on you. Worrying won’t stop a seizure, if it’s going to happen it will happen. I know all of it. And yet I do feel anxious, I can’t relax. It’s always there at the back of my mind.

Feelings are connected with thoughts, thoughts are connected with actions etc. Most of us probably heard of it, a bit of CBT here. But I yet have to find out my relationship with my emotions. I feel them so strong, in that circle I think my emotions are the strongest. it feels like they influence my thoughts although it’s probably not true. So my investigation inside my self keeps going on. I need to discover or maybe re-invent my relationship with emotions as maybe that may change the thoughts I have and how I perceive the reality?

Chemo is a bitch

So, it’s been long time since last post. I started this blog thinking it would help to off-load my emotions into the virtual space, where probably nobody would ever read it. And it does help, but in the middle of all of the events I didn’t even have time to write.

A lot has happened. And nothing changed at the same time. We are still going through chemo. It’s still cancer. He still have seizures.

But… it’s spring now. The sun is shining finally. Even if not inside, definitely outside. I have better and worse days. I still have the fear in my heart. So, last entry was 5th March…. it was shortly after the 3 seizure night. I was in a very very very bad place then. I can’t remember exactly when things happened, but I started online CBT course. That I still continue but it’s not very helping. I think overall to manage worry and anxiety would be good. And I’m sure some tips can be useful and worth remembering. But… it hasn’t helped in this situation much. Maybe it gave me an illusion that I was doing something??

I’ve seen GP and started antidepressant. I wasn’t a complete believer in antidepressants before, but I was desperate. They do work. It did help. It took the edge out of things. But you need to have a good one, I tried one before and it made me feel horrible. The side effects weren’t worth it. It gave me suicidal thoughts. The one I’m taking now makes me slightly numb…. like I cannot feel extremes. I haven’t got panic attacks anymore. And for a while I felt pretty good until the seizures happened again. Then I questioned if my dose was enough as although no panic attacks, I still have the fear in me. And the anxiety.

I started counselling. That’s really helpful! At first I haven’t been sure where this would go. We started from exploring childhood etc But things started to fit into one piece. I can see connections, what has shaped me. I can be more critical to what I’m thinking and saying and why I do that. We also talked about seizures and it helped to tame them a bit. They are like a beast…. they need taming.

But one things hasn’t changed… chemotherapy. My husband had adjustments… change of anti sickness medications, reduced steroids. But chemo is still a bitch. Yes, it kills cancer. It’s out only chance, but it’s a bitch. I can’t describe how it feels to have it but I can say that watching someone going through it is horrible. It takes all the energy out. It makes you sick. It has an impact on all the family. It is a root of the fears. I know he hates it with passion. 8 cycles. 8 intravenous doses of drug. 112 days of tablets. 1344 tablets to take. We are on round 3, not even half way and it already makes it soooo difficult to see through and past it. You are washed out, you are sick, you have hypersensitivity to cold. Pins and needles all the time. You are fed up. You are agitated. You are tired. You are there but you are absent. Life goes by – you want to take a part but can’t.

But we are warriors. We fight to get to the light in the end of the tunnel. To live. To travel, to go and eat in a Michelin star restaurant. To see our daughters growing up. To have grandchildren. We fight to live.