Defying Gravity

We went to London to watch The Wicked. It was fabulous and very significant time from many different reasons… it feels like it’s been a very long time between me from last week and me from now.. but it’s only been a week.

First of all I really really loved the show. The cast, singing, the special effects – everything was just amazing! The voice the synchronisation between all the actors – it completely took my breath away 🙂 I really really enjoyed the show.

The one surprising thing for me – the very much “list” person is that I haven’t planned anything! and I felt good about it 😉 we only had the hotel booked but we didn’t even had the tickets for the show (we bought them an hour before) and it was all right. We didn’t plan where and what we eat. It was very nice not to plan actually and just enjoy the time together. We did 21 500 steps!!!! ok ok we lost the way few times and also we left rucksack on the train and had to run back to get it back. Left rucksack on the train in London!!!!!! ha ha ha. But it was good weekend.

My anxiety about seizures was different in different surrounding then home. As soon as I got back it came back in full blow. You can argue that in London I was very busy and quite tired. I finished a night shift on Saturday morning and didn’t sleep till that night after show. So I was shattered. And we had walked so much, Graham was late taking his pill. And yet nothing happened.

I feel strange these days. I felt similar when my father stopped drinking. As he did stop when I was 18. It’s a long story how it happened but mum basically made him ultimatum and almost left him homeless. He stopped. But instead of being happy…. it all went pants. As I didn’t know how to deal with him sober so we argued every day all the time. Similarly but  in a different context I feel at present. The last 7 months I was on high alert. I couldn’t stop even though I was down and fighting with it all but I kept going as Graham wasn’t strong enough to do things and I had to keep going. I did home and work. Yes, I had help and without the help I wouldn’t do it. But when chemo finished this one worry has gone… so everything should be better right? And it is overall… but inside me something gave up. I feel constantly tired and irritable. I feel pulled in so many direction at the same time and my battery gone low. It’s like finally my mind gave up and said I need rest. I can stop now.

It’s been a period of internal total transformation. And I need a rest now. I feel like I’m defying gravity. I need to think of myself first, ask myself what do I really need. I have to believe in myself and get rid of the old believes from my childhood which I haven’t revised.

On the positive I have a list of books to read. And I finally am the closest to finish my quilts as I have ever been.

Perspective

I’ve been reading through the old posts on this blog and trying to correct all spelling mistakes. I don’t think I caught them all. But it definitely showed me how much things changed. It also showed me how negative I am. And also how big progress I made with my anxiety.  Things are actually okay at the moment. Graham still isn’t feeling 100% but towards the end of the tablets he does feel better and better. It will take months after chemo for him to properly be himself again. He has never ever made a fuss about himself and what’s been happening…. sometimes I think he dealt with the chemo much better then he ever dealt with a common flu. But is there anything worse then a man flu??

And yet I’m reluctant to just think everything will be okay. Anxiety has a reason. And my reason is to protect myself from negative emotions. Protect myself from being hurt and exposed to negative feelings. It’s my brain defensive mechanism. Completely similarly to when I was younger and my brother used to say NEVER tell anybody what’s happening at home. So I never talk about the most private feelings. And to put myself completely out there I’m going to post this blog. I don’t expect huge answer. The truth is that’s what is really important for me there is completely non meaningful for everybody else. It’s natural. But I will post the link on Facebook – something I’ve never done in my life. Talk about my real feelings. Not that I lied. But I just avoid talking about my deepest feelings.

Apart from the beginning of the year, when I was so desperate I was telling I was scared to anybody, completely random hoping that they would say something which would sort the situation out. Instantly. Of course it didn’t happen and I was more upset.

I’m definitely calmer. I start to believe that the worst is over. And yet I don’t want to believe it in case it isn’t. Time is the only answer and quite logical would be not to worry about it now as it cannot be changed either way. I think the way to go is to continue watch my thoughts, continue expose myself to uncertainty and continue with my hobbies so I can have moments to switch off.

It’s also good to have a moment to just let the thoughts go freely through your head. My counsellor asked me last week – if I sat down next to Graham for 20min doing nothing, would I think it was waste of time? yes I would. I need to do something. When I watch TV I do my paintings or playing a game. When I have time in the afternoon I sew or catch up with tidying. I never do nothing. I do like to go shopping and have a break to drink coffee but yet I’ve never sat down in the garden with a drink and just let myself BE. Maybe only on holidays. But never in everyday life. And it’s important to let your thoughts and emotions to settle. To feel them, named them acknowledge them and let them fall into right place. Maybe that’s why I feel anxious in the evenings as when I finally switch off and go to bed the process starts then.

It’s ok to like yourself. I’ve been talking about the quilt. I’ve got the idea when Emily was born and kept her favourite baby grows as I could’t part with them. But keeping baby clothes in the loft is pointless. So I thought I’d make a quilt from them so she has a memory of it and they are actually useful again. Unfortunately I never got round to do it and then Aurelia was born and I have to make two quilts like that. It took me 9 years to actually start the quilt. I have started now both and I’m half way through!!! But when I told about it to my counsellor she asked – who is judging me on the time?

Nobody. Just myself. And it’s me who set the rules and yet again I find it so strange that it’s also me who judge myself on them. And cannot change them. Nobody else is doing it to me. I’m my own best friend and worst enemy.

Perspective is really everything!

 

And me

I don’t quite know where I am at present in my mind. Sometimes I do feel trapped in my own thoughts. I thought the counselling was going well. I think overall I feel stronger. It amazes me how long the anxiety takes to reduce… but I suppose I was having it all my life so to change lifetime habits is difficult.

But I had absolutely amazing birthday. I received beautiful gifts but not only material. I decided to believe people when they say nice things to me and they actually said quite a few nice things. On Facebook wishes and also in email messages. When people say nice things about me I tend to deny and not take the credit. I don’t know why I don’t believe or maybe feel embarrassed to believe in it. Maybe because I was told as a child it’s not good to be egoistic and self-centered. I know some people have absolutely no problems in believing in themselves and it’s really great. Despite if we agree with them or not. I tend to think I have bad points maybe because I was always reminded of them in my childhood. So as a birthday day gift for myself I decided to actually believe the compliments.

Anxiety is strange. I’ve noticed my increases when I’m tired. I slept only 3 hours yesterday and I was completely in pieces. I was petrified something bad would happen. I cried because of the disagreement I had with my friends. I felt lonely, scared. I felt nothing good would never happen. I felt that all the bad things will approach me all at once. And then I slept 10.5 hours!!! Yes! and in the morning life was better again. Anxiety is really annoying. As at the time when the thought come they are so real. I need to remember that though are just thought. Emotions are only emotions. They aren’t reality. As Headspace said recently “We are NOT our thoughts. We are NOT our emotions. If we can learn to experience them in this way we are free”.

And I have few things I’m worried at the moment. Cancer. Chemotherapy. Seizures. Finance. Graham’s job. Graham not driving and the impact it has on the family. Children. Friends who sometimes decide to leave. And mum…..

mum has been recently diagnosed with brain tumour. Luckily non-malignant. She just needs to be under observations – every six months have a scan to make sure it doesn’t grow bigger. Mum also has AMD – eye disease and recently she had double vision. It all led to finding out that her neck arteries are blocked and she may need a surgery. She is at a very high risk of a stroke.

I’m worried about her. My relationship with mum have been difficult. As my dad was an alcoholic and wasn’t there really I turned to mum with everything. I did believe we were friends. But now going through my counselling I discovered it was always based on me doing what she wanted. My mum is really a wonderful person – she did and still does love us (me and my brother) and I have no doubts if I was in trouble and had a problem and needed a concrete solution she’d gave me her last clothes or piece of bread to make sure I am safe not her. But in less tragic situations it’s more difficult. Maybe it’s the age gap as she had me when she was 39 or maybe it’s just the way mum is… we have no deep relationship. Mum hasn’t got much common sense and to be honest is completely different that I am. And I have to say sometimes it hurts really badly when I think I don’t have a friend in her and that I can’t relay on her the way a child can relay on a parent. That there is nobody who can hug me and tell me it all would work out ok. Nobody to tell me they are proud of me and that I am strong and doing well. It may come from friends but when a parent say it it’s different. It’s like a hug itself. Its so difficult to explain to people when they ask me if I get on with my mum. Yes I do. But it’s not a deep relationship. I wish there was a mum for me who would cook me dinner, who would bake me a cake just because I like it and it is my favourite. Someone who cares about me and helps by just being there.

But there isn’t. And what I am trying to do is be that mum for my children. I want to be there when they need me and I want to be their friend. I want to be that warm mum they can laugh with and cry to and who is there with slice of cake or warm dinner on the table when they need it. And who has good advice or can be silent when needed.

But hey, that’s what I’m trying to do. And at the moment it’s another evening which I have to distract myself from my anxiety. My quilt is getting there – I’m awaiting some fabric from Ebay as I didn’t want to pay more for faster delivery. It’s UK stock but they can dispatch it within 15 working days…. 😦 I finished one diamond paiting and I got addicted to it. I bought more but most come from Honk kong so I have to wait lol But one arrived so may start on that. And my lovely brother in law got me my favourite game Professor Layton which is exactly what I need now – to concentrate on puzzles rather then keep thinking negatively.

 

Chemo cycles

I’ve been thinking of writing for a while but there was always something coming up…. I was going to start before the chemo session to say how scared we both were. Graham even said “from all the session this one I’m scared the most of”. Me too. I wasn’t sure if the 25% reduced dose they did on cycle 6 was going to cumulate now and it all would go wrong. Cycle 7 was horrible in terms of Graham’s arm pain – he expected worse now. And I feared the seizures returning.

All the chemo cycles were different. There weren’t two the same. First cycle was probably less scary as we didn’t know what was coming. If I think now back to February/March this year, I really don’t know how I survived. I was so deeply depressed. I cried driving in the car. I almost had an accident. I didn’t see anything positive at all. It was truly horrible and black time. First cycle was difficult as he had full dose of chemo with all the regular antisickness medication and full dose of steroids. He had three seizures on Friday night after the treatment. They were horrible. Seizure one was about midnight then he went back to sleep, seizure two was about 1.5 hour later and he was slowly waking up from it and seizure 3 was later but he didn’t gain consciousness for such a long time that I did rung 111. They send an ambulance. One of my friends came at 2am in the morning to be with me and I’ll never forget that. The next day was meant to be Graham’s father and brother birthday party but Graham was nowhere near state to go. He slept the whole day after to regain energy.

Cycle 2 was the best from all I’d say. It didn’t affect his much at all. Apart from the neuropathy – as the Oxaliplatin is affecting Graham’s nerves badly. He has hypersensitivity to cold, cannot touch cold things. And has a risk of laryngospasm when breathing cold air (funny, the first cycle was in the middle of the biggest snow fall in UK in years). Graham’s arm hurt from the IV chemo.

Cycle 3 was bad again. He felt very very sick to the point he actually was physically sick – that’s the only cycle when it happened. He didn’t eat or drink much. And on top of it the chemo tiredness was strong. He was managing without any steroids or antisickenss medication as they all have epileptic fits as side effects. The seizures came back anyway, a bit later. Two in a row. Maybe only two as I did manage to keep him awake after the last one. Yet again my friend came and stayed with us.

Cycle 4…. was ok. I can’t remember anything significant from that one apart from that it was in the middle, so not the beginning not the end. It was dragging. The nausea was bad. Overall it wasn’t as good as cycle 2, but we got through it.

Cycle 5 was bad again. They started Graham on new antisickness medication which looked expensive to me. They did it because he wasn’t coping with the nausea without any medication. I checked and seizures weren’t one of the side effects on the new anti sickness. Hot flashes and seizures came back. They came in the evening the day after chemo. Two this time. The only one I haven’t witness myself but his brother was with me and actually second seizure happened next to him when I was at work. Yet again the rest from it took few days.

Cycle 6… reduced dose 25% was better. Sickness was still there, arm pain was still there. Neuropathy was getting worse. The pin and needles in the arm and tingling was still there and getting stronger.

Cycle 7 … the arm pain was unbearable and lasted soooo long. As Graham’s brother said Graham was “more vertical then horizontal” during it. It was almost the last one… ALMOST makes such a difference. So close but yet so far.

Cycle 8… now. the last one. Whatever happens you can think it’s the last time we feel like that. But the fear is there. And last time or not Graham still has to go through it. But it does help it’s the last one. LAST. I can’t believe we are almost there. For me it won’t be the end until the last tablet he takes.

But what next? Life is the same but everything has changed. Everything.

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.

 

 

Illusion

“How shall I attain Eternal Life?”

“Eternal life is now. Come into the present”

“But I am in the present now, am I not?”

“No”

“Why 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”

 

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.

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 😦