It’s all about small steps, spring and well-being

In my last post I said I’d write about few things. I said I’d reflect on holidays, diet, applications and the course I’ve been to. It would be too long for one post so I think I’ll concentrate on the course and holidays first.

I love spring. When the weather becomes nicer and the flowers start flowering I think the world is a better place. And although I do feel better I still get my usual fears. So even though I love spring, the feeling this morning reminded me of last year summer when Graham had chemo and then the memories keep coming back. And then it’s just an easy way to remember seizures and here we go again. The memories are so vivid.

But the fear is not as overwhelming. And it’s not as overhelming not because it became so much better. I think I learn better ways to cope with it. But if I let my mind go wild,  it will overpower me easy and quickly. It feels a bit like an animal in a cage. Exactly this – a wild anima in a cage. But it is still there, still alive and still wild. Maybe I should give it a name?

I still struggle to fall asleep. I’ve found Melatonin a great help. I went recently to Poland where it is widely available. And actually recommended for shift (especially night shift) workers. But what I found really interesting is that in Poland I had absolutely no problems sleeping. No fear.  The holiday was actually so relaxing – I relaxed more than I imagined. Or hoped. And I don’t know if it is because all what happened last year happened in my house in UK. So I have no bad memories in mum’s house in Poland. Or maybe it was the thought that there was someone else with me in the house (mum). So I didn’t feel alone. Maybe it’s the feeling of being alone which is daunting. So although I do know that mum wouldn’t be much help in an emergency situation… maybe just knowing I wasn’t alone was enough. But I have rested and I have relaxed. I haven’t relaxed mentally so well in ages. I could say that my fear-wild-animal in the cage was asleep.

But on the positive –  since I’ve been back I attended a Wellbeing at work course. It was work related but we have talked about wellbeing in physical and mental sense. We were also discussing what’s available in my place of work but also in general what is good for our wellbeing overall.

I thought I’d summarise few things here so I wont’ forget what’s been said.

First of all change – The less we think of condition (reason) the less likely we are going to make changes. People continue to practice unhealthy behaviours because of incorrect perception about the risk they bring. If you perceive condition/reason as serious – you will more likely change habits.

We should be doing 30min of physical activity five times per week. And we need many different types of exercise, yoga, body pump, spinning or resistance exercise (I need to check what resistance exercise is and how can I fit it into my routine!). I was also thinking of doing some yoga. Need to check yoga CDs or books. Or you tube. I’m not very good with YouTube I have to admit.

The other thing for me to check is Dr Jayson Funj and his recommendation about fasting. Which would go nicely with my low carb diet and book by Tom Kerridge. So, just to touch on that – 25th of March I started low carb diet. I knew Tom Kerridge lost a lot of weight but I didn’t know that he did exactly that. Low carb diet. I got his book as it was a very good price on Kindle… only about £2!! so recipe book is not the best on Kindle but  hey, beggars can’t be choosers!! I got inspired by his introduction and advice. I think it summarises the diet very well. I only glimpsed on the recipes so far, but will have a proper look later. They use quite a few fairly expensive and fancy ingredients so not sure how well it will suit me.

Apparently Happiness is 50% genetics, 40% our control and only 10% external circumstances. I’m not sure what can or can’t we do about the genetics, but 40% in our hands is huge, isn’t it?? And we are not happy when we are stressed or worried. I had no idea that a stress curve existed. Because when we don’t have enough stress – we are in stagnation, have no motivation to do anything. The same if we have too much stress – we start to have physical symptoms and be unhappy which can lead us to being Overstressed and eventually to a mental breakdown. So the point is to keep ourselves in the middle – it’s always about balance. Too little stress isn’t good for us either. I have not really thought that some stress is needed. It motivates us. So we can have many activities to manage stress. We tend to do things to di-stress. We can do things like walking, yoga, reading, meeting up friends – which cover up the stress but don’t take it away (called palliative). Or we could for example drink more alcohol or eat chocolate – they help us feel better for a short while but the stress does come back and they can be harmful (called Indirect activities). And finally we could do meditation or mindfulness for example which would be a Direct activity which helps us acknowledge the problems and improve the situation.

It is recommended to have a selection of palliative type activities so we don’t rely only on one. They help us to reduce stress. I think it also works for worrying and anxiety. That leads us to the Fight or Flight response of our brain. I admit this is something I have to look into more. But one sentence I’ve heard which caught my attention was: in stress our mind can manage only two decisions – it either fights or flight. And nowadays, in current society exposure to prolonged stress keeps our mind in that state for too long. Plus neither of them really works. You can’t fight or flight really from your problems. To help ourselves dealing with stress it is recommended to increase physical activity or keep stress diary and mindfulness.

Interestingly we covered a bit of CBT as well.

We have an event A and we have it’s consequences C. And event makes us feel in a certain way. But in between A and C is – B our perception of the event which can change the consequences. This is a pause. In fact instead of REACTING to an event we should pause and learn to RESPOND to it. it is so powerful, isn’t it? We have a choice how we RESPOND. And the way we respond we can learn. Pause is good. We can re-train our mind.

I think I’ve written it before here but it comes back to the positive affirmation and law of attraction. If you say something often enough you will believe in it. And we tend to do that we negative things and take them as facts. “I’m useless”, “I’m fat, ugly, worthless” etc etc But instead let’s talk to ourselves “I’m pretty, sexy, intelligent”. Why do we believe more ourselves talking negative things than positive?? I’m sooo guilty of it. But actually – why do I repeat to myself all those negative comments and BELIEVE in them but when I try to say something positive I dismiss it straight away. Oh no, let’s try it. Let’s talk to ourselves positively and imagine if only it’s true – if we repeat it often enough we may actually believe in it as well 🙂

Thoughts are not facts. Especially negative as they can cause more harm. Change your mind, imagine you are in a court and put your thoughts for a judgement. Challenge your thoughts like in a court. What evidence do we have it is true? Our brains have a negative bias.

We are spending too much time to try to control things we have no control over. What we can’t change we need to accept and try not to make judgement. That brings us up to John Kabat Zinn as someone who brought us mindfulness. And as in a circle  – brings me back to Headspace. Meditation. Something I started last year and stopped.

And just to end this rather long post, apparently we should be doing 3 things each day to promote mental wellbeing.

  1. something which makes us happy
  2. something which gives us sense of achievement (even small, like cleaning, knitting etc)
  3. something which makes us close to someone, intimate (can also be small – to open up to someone or even just stroke a cat

There are also 5 ways to wellbeing. CLANG

  1. C – CONNECT friends, family, relationship at work or outside
  2. L – LEARN learn something new
  3. A – ACTIVE physical exercise
  4. N – NOTICE take a notice, mindfulness, be in a moment, practice gratitude, consciously think of few things you are grateful for
  5. G – GIVE give to others, but don’t forget to give to yourself too.

But if I go back to the beginning, where I said that my PTSD/anxiety – my fear – I cope with it better. If I look back – I did unconsciously exactly what’s been recommended in the course. I love my friends and appreciate friendships so much in life. I try to learn something new – I signed for swimming lessons and I do mean to learn Spanish. I try to be more active. I practice gratitude and positive thinking. And I learnt to give and be kind to myself. And I think the diet helps as well.

So overall – small steps. It’s all about small steps. You can’t overcome fear and anxiety all at once. And that’s what I wanted to do. But the small step technique is like a water going around a stone. If it goes long enough it will finally make a change.

Happy Easter if you celebrate! 🙂

 

Positivity

I was meant to write last few days actually but it got so busy at work and I become frustrated and very tired. Frustrated about work and politics. I was going to write that I felt so much better. I was thinking about last year, how difficult it all was and how low I felt. It is a horrible place to be.

I don’t think it’s the best method in mental health problems but “it could always be worse”. Also I remember when I was in the middle of last year I was going through all of it, I discussed it with one of my friends and she said “I can get used to anything”. Why can’t I? Flexibility.

So, I feel better. I am doing positive affirmations as much as I can, when I remember and have time. But as soon as I have few things piling up or change of my routine – the anxiety comes back. My daughter isn’t well, I’ve been up most of the night with her. The dark scenarios I saw in my head…. But after imagine the worst, I felt – it’s not bad. What I have now it is NOT bad. As it could always be worse. Maybe if I tried I could get used to anything as well???

My evenings are much better. My nights… not. I have problems falling asleep and then I wake up with any noise. But the falling asleep is difficult. I increased my melatonin to two tablets 2mg. It’s not a big dose at all. But sometimes it helps. I still take sleeping tablets but I try not to rely on then and take them occasionally. It’s sad as sleep was never ever my problem. I could sleep anywhere, anytime – no problems. Fell asleep in 30seconds!!

Maybe it’s just time. Maybe at least I know what I’ve got and I can deal with it – at least it is not worse. But tiredness and change of routine definitely triggers my anxiety so need to remember that. I need to remember that whatever I think in moments like that is NOT prediction of the future.

Sometimes I think life is so much piling up. I have no time to catch up with everything I want. But need to take day by day, moment by moment. Not to overthink, not to go ahead in the future. I am actually coping all right. I’m trying.

To add to it even more, I started diet. I looked at the mirror and thought – enough is enough. It’s only good to say – don’t think of it now, there will be time to lose weight. Well, the time is now. I started swimming lessons so that’s completely new to me 🙂 I try to get going with the law of attraction – good thoughts bring good events. But I also get on with my crocheting. I finished one blanket and the second project is well underway 🙂

So maybe flexibility and change of focus is the answer. Law of attraction, positive affirmation and change of focus. Yes, life is not easy. Yes it’s more than I could think I would have to deal with. But I am strong.

Finished blanket 🙂
Pepper’s favourite!

Side effects

I think whoever considers taking antidepressants should be told at the beginning not only about side effects but also about withdrawal symptoms. If I go back in time and the way I felt in February maybe I would have made the same decision. I don’t know. But I feel awful at present.

I’ve been meaning to write an entry for a long time. I’m not sure if writing this blog does make any sense as nobody is really reading it. It does help though when things get a bit too much of me to unload a bit. It’s a bit sad replacement of a motherly hug and somebody to tell me hey, it’s going to be all right.

I’ve been quite good over the last few months. Not perfect. I still cannot get back to me before the seizures appeared. I feel it was so careless then. It wasn’t at the time. But now it feels it was. I don’t know if my life will ever be again with the fear.

I feel horrible. You could tell that I haven’t written as things were all right. But if this gave me the push to keep writing that’s I suppose one good thing.

I’ve been desperate in February to start antidepressants to help me with the way I felt. As I mentioned before I first took Sertraline and it was horrible. I was suicidal after that. Then I started Venloflaxine and there was a week when I was unable to feel any “extremes”. I didn’t feel sad and I didn’t feel happy. I felt fine. But that wore off pretty soon and after that I felt normal. But I was told by my GP you have to continue to take antidepressants for at least 6 months after you felt better. The thing is that I don’t know if it was antidepressants which made me feel better or the psychotherapy I had? I tend to think it was the psychotherapy. 

I felt all right on the Venloflaxine apart from horrible night sweats at first (it was sorted by reducing the dose). Then libdo is non-existent which was a bit annoying to say the least. And I’ve had a very very VERY vivid dreams. Unfortunately about half of then were nightmares. I dreamt graveyards, my mum dying but I could never attend the funeral. There were many weird dreams, including a tortoise escaping from an aquarium and me chasing it. I dreamt lots of animals. But one time for example I had a dream that me and a group of other people were trapped by a murderer who was playing games with us, setting us tasks and whoever lost was first to be killed. I remember he broke my thumb in the dream and I asked to go to hospital but he replied there was no point as I would die soon anyway. 

So, not nice. I accepted it as a part of the course I suppose. A bit of different thing. I didn’t like the nightmares but it was interesting to be able to remember so many dreams. And then I had my last CBT 3-month review, I’m completely discharged from them by the way) and my therapist suggested that dreams like that do not help with anxiety and maybe I should speak with my GP about it. I think GP have enough to deal with that someone talking about dreams, but I have to say I didn’t think of how bad impact the dreams may have. And then I was thinking more about other things happening, I’ve noticed I was bruising a lot without any apparent reason. So I did call my GP last Wednesday and she told me to reduce my Venloflaxine to one tablet per day for three days and none at the weekend and she would call me back on Monday to discuss another antidepressant. 

Little I knew about withdrawal symptoms :((( horrible horrible thing!! I suppose me working night do not help. As on nights I’m emotional and existential wreck anyway. BUT last night was just horrible. Awful. I had headache and felt lightheaded at the same time. I felt dizzy a bit like vertigo – when the world spins for a short moment. I felt sick. Very sick. And I had brain zaps – I still actually have them. These are strange it’s like an electric shocks going through your brain. Hot flushes. And it comes in waves. So I felt like that then all of the sudden felt fine. And then after an hour or so felt very sick suddenly, brain zaps and lightheaded. And mood swings… felt so low. Not suicidal but so fed up and low with everything. With feeling like that and also thinking that nothing will ever change. As soon as I thought that I felt like crying. Tears were just coming to my eyes. I just felt it was all pointless, I have had enough of the fear of seizures and I do feel that it all will never end. I’ll never feel better. 

But actually I also feel very very upset and angry that this year has been so though and shit really. As it has been. I feel angry that my friend of 7 years just dumped me like that. How could she cross off 7 years of friendship just like that? I know I haven’t written about it here, I’ve tried to be subtle but… what’s the point. People don’t care about you, how you feel. People only care about themselves. She started her text message to me with words “my husband think I should talk to you and I gave it a thought and realised I don’t want to” – that hurt. I didn’t actually read the rest of the message too carefully as it was just a rambling. Just like that – I don’t want to talk to you anymore, goodbye and she had a cheek to “wish us happy future and to look after each other”. I do feel like say F*** Off. Yes, it has kind of resurfaced now because it hurts like hell. When you are accused of not being there for someone (even though I’ve tried my best) but to say it to me, knowing very well that me and Graham have been through hell this year – is just cruel and heartless.  

That actually reminds me of two quotations. My grandma used to say that what you throw behind you, you will find in front of you. Everything comes back, what you give is what you get returned. But also having friends like that you don’t really need enemies. 

So that’s me today. Not a very good come back to the blog but here I am again. 

We live in a sea of troubles

It has been few days since I’ve last written. It’s been busy. It’s been emotional. There have been good and bad news. And that’s life I suppose. I’ve said many times that I would have not be able to survive through the last most difficult times in my life without my friends. It’s been mainly counselling which helped me to deal with my mind but it were friends who didn’t let me to give up and go insane. And sometimes it’s very difficult to have misunderstandings with the people who helped you the most. It is difficult to know how to deal with things. When is the time to reach out and time to wait. I suppose as a part of my generalised anxiety disorder I tend to try and resolve things there and then. I will message and reach out and over explain things just to be certain of the outcome. But it isn’t always a good way. And it is difficult for me to be accused of something I haven’t done (or rather when my actions were interpreted in a way I haven’t even think they would be). It’s difficult not to reach out and try to explain what happened. But not all people think like me. Some of them need time. Also sometimes outcomes are unpredictable (yes, I wish I could predict all things in life or see them coming as then uncertainty would go). But I can’t predict everything. Or in fact, I can predict very little indeed.

But I made a small progress. I didn’t read a menu before going to a restaurant (yes, I’ve always pre-read menu so I knew what I was having!). I also did go out one evening for couple of hours with a friend (which is a success as I haven’t done it in 7 months). I haven’t made any plans about a picnic before a zoo trip and made last minute decisions! It’s many small steps for me. I know it may sound ridiculous to someone but for me it is actually quite important.

I also realised I have two many hobbies and too little time. I started learning Spanish but haven’t finished. Or continued. I started sewing my quilt (I don’t think I’ve written about the quilt? it may need a separate post). I also bought myself painting with diamonds kit and decided to go back to drawing flowers but increase my technique by actually using watercolours….. you can’t really do too many things. Best is to concentrate on one. I should definitely start from the quit as that’s the longest awaiting project.

And on top of everything I also found out that mum has some health problems and I cannot go to Poland now. She may have a surgery in nearest future and I will try to go then. But now with Graham chemo I simply cannot leave him with children.

We did try a night without someone else in the house. I was stressed. But it all went ok. I was more stressed for my daughter – as when I was little, maybe 12-13 my mum used to go on trips abroad and leave me with dad who was drinking. He wouldn’t go to work and drunk 7 days straight to the point when he was crawling on the floor as he couldn’t walk. He would ask me to check on him if he is still breathing. I suppose that could add to my fear of seizures. But I do remember how I hated her going. So when I see my daughter being scared to stay with Graham I can see my fear in her eyes. But Graham is ill and not doing it on purpose and life has to go on. So I have made some arrangements which would notify me if something happens. I am also considering getting her a mobile phone to use under certain conditions only, just to make her feel safe.

And there is last chemo in 3 days. LAST CHEMO!!! We haven’t had seizures now for 8 weeks which is the longest. They tend to happen every other cycle 1st, 3rd and 5th so we thought the 7th would be the one.. but it wasn’t. So it could be that the reduced dose of chemo is too low to cause them. It could be that the anti epileptic drug is working. OR the chemo may build up and maybe they will happen after the last cycle. I don’t know. I also don’t know if me feeling better is all the techniques I learnt or simply the time…. and how would I react if it does happen. Would I be really stronger by all the techniques I learnt? or would I have a major major set back?

I don’t know. But I’m hoping to enjoy the next two days, one of which happens to be my birthday. And I’m just going to remember is it the LAST chemo.

 

 

About everything and nothing

It’s been interesting week. I got caught up in an anxiety circle from a completely new point. I felt fed up with watching my thoughts constantly, I lost the energy to work on myself, I stop headspace 😦 I just felt I needed a break from it all. I spoke about that on my CBT therapy and realised that my anxiety creeped up on me even here, I just started to do my regular anxiety circle on my work to reduce anxiety!!! it’s so confusing. I have to say it upset me. There will be of course up and downs, it’s not a straight line process.

I had a homework to actually stay up longer then Graham one night and face my fears. I wasn’t staying longer up then him as I was too anxious and preferred to sleep as it would stop me thinking about this…. I didn’t 😦 I didn’t do my homework. What’s more old emotions from things that happened a year ago started to resurface again. I forgot about things as the seizures where my number one. But now I start to come back to the emotions from the past which I haven’t dealt with yet.

Is everybody so emotional?? I think it’s just me. I literally live through emotions and usually guilt. But speaking of which… that seem to improve. I had an incident at work which I would usually react with a strong guilt afterwards. But I didn’t. I asked myself few questions: was I rude? no. Was I personal? no. Do I believe I was right? yes. And I didn’t feel guilty at all. I know that social situation like that would normally knock me down completely, I actually behaved sensible. I’m proud of that 😉 but now just deal with the personal aspects.

I do see the world through negative glasses. It’s been taken up from my childhood I believe. Or maybe even from the general Polish culture. I wonder if there is a process of re-teaching yourself to see more positive (apart from just remembering to do that every day lol). I feel it could be the answer. If you see a positive you think positive.

I’m slightly antisocial last few days. Yes, I’m working nights again and I’m very tired. I just used to never trust people. I don’t think it help me to make new friendships, but at least I was more or less constant. I presume everybody sooner or later would hurt me (as unfortunately that’s what I learnt as a child). But then I met my husband, I met really nice and good and wonderful people, made new friendships. I know that nobody is all good or all bad. We all make mistakes. We all make wrong decisions. And that’s normal, that’s life, that’s learning process. But I have a slight problem when people make wrong decisions which relate to me. Because it hurts. And it doesn’t hurt just one day there and then. It drugs behind you. I think overall I was better not trusting people. That is sad. I can’t just expose myself to being stabbed, I just can’t. It takes me so long to heal thats’ simply not worth it.

I feel a bit lost. I’m not down or actually I’m not as anxious as I used to be. But as I say, dealing with old problems of hurt feelings, then all the Graham health problems and learning new way of thinking – it all drains literally all energy out of me. I just need to find a way out – a way of escape from it all. Sewing is one thing. I used to paint. I used to put music on and paint or draw. I used to draw mainly flowers, but my brother then criticised me and said it was pointless as nobody famous draws only one things. And I stopped. I like being creative though.

So the plan is to get back to do homework from counselling, see more positive in life and it’s time for ME time. What do I want? not everybody else. I need to listen to myself, what actually I do want. What makes me feel comfortable. As I have only one life and it would be silly to live it the way other people want.

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.