Tomorrow

It’s World Cup at the moment and England is playing Colombia. It went to extra time so at the moment it’s 1:1. I though I’d write something while it’s still 30min when my husband is not present in mind lol

Tomorrow he won’t be present again but because of chemo. I was doing so very very well. I had a small/big victory or achievement yesterday. I was so tired that by the evening felt everything was just confusing and I didn’t know anymore what to feel, what to think, what’s right or wrong. I felt my anxiety rising… but I managed to tell myself – it’s not your reality. It’s your mind playing tricks on you, go to sleep and tomorrow it will be different. And I did and it was different this morning 🙂

Unfortunately I haven’t had enough rest and today I’m tired too and I’ve had quite busy day and my mind plays tricks on me again 😦 I do feel anxious again. I think it’s because the chemo tomorrow. We sort of expect the seizures but hope they won’t happen. As so far they happened 1st 3rd and 5th cycle and now it’s 7th…. it’s nothing scientific and I don’t know any medical reason why they wouldn’t happened like that. Maybe it’s 5 week time and it’s just a trigger or maybe they wouldn’t happened anyway. Maybe they won’t happen ever again and maybe the medication is working. It’s all maybes and I do know very very well that it’s not worth thinking about it as it’s no point worrying about things which are not under my control.

I also had an interesting session today which made me realise how much I plan everything, how much I organise my life – from knowing what is going to happen the net day to weekly dinner planner. I hate surprises. I’ve never connected it with anxiety but it does of course make sense – plan so there is no uncertainty. Bingo.

I need to work in small steps to expose myself to uncertainty but it’s difficult to concentrate on it when such a big event is coming tomorrow. I’m a bit lost. I don’t want to take a step back and have a set back.

I do realise very well though that the seizures are just a trigger. I’m not actually scared of them but the fact they are so unpredictable is what sets off my anxiety. In fact, on my better days I even had times when I wasn’t scared of them at all.

But today I have a worse day, I’m still tired, I have a headache and I’m some how naturally worried about the chemo tomorrow. And that does not help with me working on my GAD. I do find this sometimes sooo difficult 😦

Where do we belong?

Sometimes I do feel like I don’t belong. Sometimes I do wonder… do other people think so much about their life. Their thoughts. They seem to be able to get stuck into every day things and not worry about feelings or emotions so much. I wish I could do that. To cut off all that metaphorical dilemma. Is anxiety a problem of overthinking?

Sometimes I feel I’m really on the right track with everything and sometimes I feel so confused. I had a moment when I thought it was all pointless. Everything will come back to the old ways anyway. But it was just a moment and I managed to realise it would pass. The big problem with GAD is that whatever you think feel or imagine at the time, the negative thoughts feel like they are your reality forever. And it’s important to realise – it will pass. Sometimes red looks very red sometimes more pink depending on light. And that’s the same. How you feel will pass. And it’s only the way you feel. It’s not reality.

I also have been considering stopping my antidepressants. There is one side effect which I find really frustrating recently and it’s sweating. Especially night sweats. I’ve never had it before. Also I seem to eat a lot but I can’t unfortunately put it down to antidepressants. So my plan is also to start exercise, as exercise helps with anxiety too. And eat less. But one problem at the time. I can’t repair whole world at the same time.

I feel nervous about the chemo on Wednesday. The seizures were happening every other cycle 1st, 3rd, 5th and now we are approaching 7th…. in a way the uncertainty has been taken out of it as I presumed if it’s going to happen it will happen this week. And even when my brain did manage to return to old ways and imagine seizures my fear of them was definitely smaller. But I just really want this chemo to finish. I have enough of good weeks and bad weeks. It’s sooooooo close to the end and yet so far. Believe me. I know, I remember the beginning when all 8 cycles were ahead. I remember the first and every single one of them. I do know that we are closer to the end then ever before really. BUT it’s still TWO cycles. It’s still two times when Graham will feel horrible. I hate seeing him like that and not being able to help. I really truly want it to finish.

 

 

 

 

Perfection

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?

 

 

 

What if

The “what if” thinking is very automatic. I was driving at the weekend and wondering if there is a parking space when I get there. “What if there will be nowhere to park?” I was thinking. And then I realised…. again – imagining the worst case scenario before it even happened.

The constant questioning your own thoughts is very tiring. I do get moments when I actually doubt if what I’m doing does make any sense. I’ve been practicing the Headspace and I like the metaphor they used there. Imagine a blue spotless sky. We walking underneath such sky through life. But there will be some clouds, like our feelings, emotions, thoughts and experiences. They will be fluffy white clouds. And there will be some grey clouds too and sometimes rain and thunder. And sometimes they grey rain is so overwhelming that we forget there is a blue sky behind it. But we need to remember that the blue sky is there. We don’t need to create it – it already exists.

I’ve been thinking today that the last six months had also some positive outcomes, not only negative. Things like that makes you revaluate your life. What is important? If not the negative experiences I wouldn’t ever had a trip into the past my childhood and learnt so much about myself. I do feel the changes I’m making in my way of thinking are good. I feel it’s all going in the right direction now. We also grew closer as a family. It is special that someone chose you to stay with them in the moments when they are the most weak.

But I still have the “what if” it all collapses if something bad happens again. It’s a very very fragile line I’m stepping on. And I also understand that the positiveness and strength depends only on me. My anxiety at the evenings settled. But I’m not optimistic, I’m realistic. Or am I just giving in old way of thinking… it’s easier to change it in a little things, but I don’t want to be disappointed with what’s important. And it’s also hard to believe for me that something might have actually worked. After good few months of trying to find a solution.

In the meantime…. I was enjoying the 32C IMG_6487

Too much

I decided to write few things as I’ve noticed something interesting. I joined (of course!) another Facebook group (apart from already joined depression, epilepsy and hamsters) I joined GAD group. I do admit I haven’t been particularly an active member of the group but I read one post where someone was basically saying that her and her husband are anxious and both of their children have an anxiety disorders. I can’t remember what exactly it was and what actually she was asking but from the tone of the answers and the question I drew a conclusion people were seeking an advice outside (diagnosis, hereditary) but not really inside themselves. So I actually as a part of my therapy I decided to give myself a pat on the back. I actually identified I have GAD and I’m working on it and I’ll do my best NOT to teach my children same habits as I have.

So the journey has started. The week just gone was difficult. I was fine and then Sunday evening my anxiety went completely over the roof. I felt awful. I knew that I didn’t want to feel like that. I realised that it’s not the situation it must be me, the fear is inside. Part of GAD is feeling uncomfortable with your especially negative emotions and trying to get rid of them asap. I wish  I could just click my hands and the problems would disappear. A magic wand.

I started thinking, searching and of course discussing things and my counselling sessions. I think counselling has been the most beneficial but it’s was good to dig dipper for more answers.

I need to learn to allow myself the emotions I feel. It’s ok to feel what you feel. I shouldn’t feel guilty or telling myself off for what I feel. I feel upset, I feel angry, I feel tired, I feel anxious – that’s OK 🙂 That’s what I feel. No judgement. Nothing. Acknowledge the thought or feeling and let it go.

The root for most if not all anxiety is uncertainty. And that’s an interesting issue – I have no tolerance to uncertainty. It is the UNCERTAINTY of the situation which makes me anxious. I have always reacted the same way to problems but they have never been as big and never lasted that long! So because the uncertainty is bigger then usual and lasts longer, my anxiety is much bigger then usual. And it become an obstacle to my life.

Well, if we feel uncomfortable about something being uncertain…. what do we do? try to increase the certainty of the situation. In my mind, the best way to do it is imagine possible outcomes. But focusing on the negative as if I can make myself prepared for the negative I’ll be ready when it happens. So I’m imagining the seizures and trying to be prepared when they happen. But when I start imagine it carries on, each thoughts produces more thoughts and the picture gets out of hand. And it gets more and more negative and more and more scary. So does it help? does it make the situation more certain?

No.

But it’s a habit. I still think, that I can cheat my mind and make myself prepared for the worst.

So, the advice is to go the other way. If I can’t make the situation certain…. maybe it would be worth working on making my tolerance to uncertainty bigger.

And it should be a small step at the time as it’s a huge task. Start small. I can’t tackle the biggest problems but start small from small thoughts. I have started and making a diary of how it makes me feel to change the habit and what do I think etc. I have no answers yet if it works but I believe it will. That’s why I’m doing it.

I started Tuesday but yesterday I felt so overwhelmed…. I literally had a mixture of emotions and thought it my head. I didn’t know what I should or shouldn’t feel. It’s not even should it’s…. changing the automatic habit of 37 years…. it’s TIRING. Its unsettling. It requires concentration. It’s a constant questioning your mind. It’s testing it. It’s challenging it.

I also started meditation. I’ve never been a believer of that sort of stuff. But I started with Headspace. I’ve done so far 3 lessons 3min long each… I actually really like it! it connects with what I said above. With acknowledging the thoughts and letting them go.

I do admit last night I felt like I wouldn’t cope. But today I decided to add also at least one positive which happened each day. Today I think it was my hard work. The fact I’m trying. I’m so used to thinking bad about myself and putting myself down. But no, I’m working hard on this, I want change and I want my girls to avoid the problems I have. And that’s a good thing 🙂

Confused

I have to say I’m extremely confused. The last six months were the most confusing, emotional, difficult and extremely hard period I’ve ever had to deal with…. it was not only dealing with serious health conditions and new diagnosis but mostly dealing with myself and discovering truth about my personality. It’s been a long and exhausting journey inside myself which I now find so tiring and literally with no energy to live. Not in a very pessimistic way, like I’m going to give up but more in a way that all my energy went into explorating my personality and going into the reasons for the way I feel that I have, that I have no energy left to deal with anything else. I feel constantly, constantly tired.

I’ve learnt that I have Generalised Anxiety Disorder. Which means that the most probably why I couldn’t get to the bottom of my fear of seizures was that… it wasn’t really fear of them but they were a trigger for my anxiety.

I’ve always been surrounded by negativity. My father was an alcoholic. Not a big deal you say. And most Polish drink so it’s unfortunately a childhood most of us Polish people experienced. And sadly not only Polish. But my dad was hiding that he was drinking and I knew all the places he was hiding vodka. He was lying denying he drunk even though we all could clearly see he has. My earliest memory of childhood is my mum putting me to bed, when I saw on the corridor dad crawling from the toilet to his bedroom. So I asked what was wrong, why he was doing it and my mum answer “daddy is not feeling well”. He promised me every Christmas he would stay sober and he never did. He was driving drunk, sometimes with me in the car. I hated him. I wanted him to die. It was a constant embarrassment, I couldn’t invite anybody home, I didn’t want my friends to see him like that. I was ashamed. And if you add to it that Poland isn’t a very tolerant (or wasn’t very tolerant at the time) country – and me being on the chubby side, I was laughed at on the street by kids and adults. I had a very very very low self esteem. I didn’t believe I was pretty, I didn’t believe anybody would love me. I didn’t believe I was good at anything. I thought that the reason for all bad in the house was dad. Because dad drunk.

But he stopped and we actually managed to have a little bit of nice time together. After a period when I was adjusting to actually seeing him sober. But anyway he passed away 10 years after he stopped drinking. Not from a liver disease, funny enough, but from COPD. His lungs given up on him. And that slowly changed everything. I was already in England, so the process separating from home and his death made me discovered new truth, the truth I’m discovering till today.

If you think about a child with huge complexes who’s one parent is unavailable to talk to be a role model, the child would turn into the other parent for support. I thought I was very close to my mum. But it was a strange relationship. I don’t want to accuse my mum of anything. I’m sure she did the best she believed at the time. And she was shaped by her parents and circumstances. Quite possibly her mum did to her what she did to me. Completely unintentionally. And I’m sure if I ever was in a need she’d give her last clothes and food so I would be warm and fed. But what she didn’t do is she has never taught me coping strategies to deal with problems. She is very negative. She’s very neurotic and anxious person. She was using a lot of emotional blackmail. I never believed in my opinion, I always took hers as the right one. She told me to put other people first and many times called me egoistic if I didn’t put others (mainly her) first.

Only just now I realised how much I was influenced by her. Not by dad. Maybe dad taught me what a lie is and what an addict can do to you and your family. That is probably why I’ve never smoked or drunk too much, which overall isn’t a bad thing. I might have missed some fun in my teenage years, but I had too many complexes anyway to do it properly.

But mum gave me GAD and the problems I have now. And I’ve only just realised how big and long journey it is in front of me to make it all straight. And probably I’ll never completely get rid of it as it’s my personality. This is my coping strategy to problems. GAD and avoidance. Or running away. It’s a long way ahead of me.

2008-2018

I thought 2008 was a difficult year when in just over 12 months I become a wife, a mother and a fatherless child. It was tough.

But ten years later, in 2018 within just over six months I seem to become and expert in cancer, chemo, epilepsy and hamsters!

Who would’ve thought?

Mid June

Graham had his 6th chemo cycle last Wednesday. I have to say my anxiety was sky high knowing what does happen after last chemo. Especially that last time he started so well and then all of the sudden “crushed” down and had seizures and was unable to do anything for a week.

They have reduced his doze this time to 75%. He seemed to cope well. I’ve worked 4 nights and noticed that when I’m tired after nights my anxiety goes up.

It’s World Cup as well so we have 3 games in a row on TV now. At least he’s happy. At least I suppose the resting after chemo makes some sense. And I don’t mind. I’m not football fan but I like seeing him happy. Well at least as much as he can be.

It wasn’t all good, he still felt washed out and sick. And the over-sensitivity to cold is just awful. His hands and arms are aching all the time. He has pins and needles and cannot touch cold things as they give him electric shock. There is a risk it would never go away and his peripheral nerves would be destroyed forever. But we have 2 more cycles left.

It’s a strange situation. I was even told I may have Generalised Anxiety Disorder. I can explain to myself perfectly well all sensible answers. I can say there is NOTHING I can do. There is no point in worrying as it doesn’t change anything. I know that if things are all right I should take it as a gift and enjoy. But I worry that something bad may happen. Anything. I don’t even know why WHY I see seizures as something that BAD. It’s not pleasant but we come across many unpleasant things in life and kind of deal with it. It’s scary but I’ve seen 9 of them so I suppose it’s not new. I have a feeling if I let myself believe that things are better I’ll get very disappointed soon and then I’ll have another set back. And yes, I dealt with them before so I can deal with another one but I still feel anxious. I’m trying to work on the anxiety cycle and break it but it does take time. Sometimes I even worry a bit that I don’t worry. As I did have days I was actually calmer.

I certainly didn’t expect such a journey inside myself this year. I didn’t expect such a bumpy ride through life this year either. I’m at a bit of a numb point at the moment where I have really no idea which way it will all go. I also have hope and apparently it’s good to have hope but I don’t want to fall crushing down and get bruised again.

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.