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.

 

 

End of May

So, we have had another month passing by. I would like to write a bit more often as I now decided what I’ll do is when the chemotherapy is over, I’ll actually put a link to this blog on my facebook page. As a sign a stage has finished. I cannot wait till the end of chemo. Not that it would end all our problems, but definitely some of them. It may not resolve anything. I actually was told and managed not to look pass the chemotherapy but I have no idea what the life will look like after that. I know pray for getting back to “normality” but… what the normality is???? there won’t be the usual normality. There will be a new one, which we’ll have to build again. Scary. But I don’t need new scary thoughts. Everything is scary.

What I need to do is tackle my anxiety. Unfortunately since last post things changed. I was very down. And up and down and up and down….. But I’m acting on it.

So, few things have happened…. I know one person is reading this blog and I need to refer to our conversation! sorry, but there was some truth in it: I’m going around same subject in circles and talking same old rubbish over and over again. So why is it so difficult? So, there are few things….

  1. I restarted counselling. I had a first session, but after 4 weeks break we needed to catch up with what’s been going on. My counsellor seems to think my fear isn’t about seizures as such but about me and managing them and believing in myself. Which yet again leads us to my childhood. I realised something sad. The counsellor asked me what do I worry about and the list was looooooong. And then she asked me – so who is worried about Agnes? About me? And I couldn’t find one name 😦 People say they do worry about me but I don’t believe them really. and it’s sad, isn’t it? That led me to research about childhood without love (as that does come from childhood) and I found an interesting article about unconditional and conditional love from parents. I seem to had conditional love, so basically I’ve learnt that I would be loved if I do what my mum wants. So now I do what other people want me to do and put themselves in front of my own needs. That unfortunately brings very low self esteem. And maybe I just simply don’t really believe in myself that I can manage that situation. Maybe I’m scared of myself.
  2. I will continue CBT therapy, but that’s not until next week. So no news about that.
  3. I have some self-help books about worry. The problems with books is that I do have them but I have not time to read! Or I’m not relaxed enough to concentrate on them. That’s a problem. But I’m intending to read and maybe reduce my anxiety.
  4. I started to search for similar people in similar situation. Well, I really should say people in similar situation. It proved hard. I called Epilepsy Action – they do have one group which meets up every first Tuesday of the month, but 40min drive from here. I’ll go there next week. I also called epilepsy society. I was encouraged by their helpline and the description they give on their website. They even had described a day from helpline advisor…. it sounded emphatic, helpful… but actually although they were nice and supportive – it wasn’t that helpful 😦 Maybe I’m working in the wrong profession, but I can hear that they cannot give any definites. So… I said, I would ike to know if life would ever be happy again. And while a friend would tell you – yes, of course, nothing lasts forever, they cannot say that. Probably in case you ring them back and sue them that they’ve promised something which hasn’t happened. And also they aren’t medically trained, so they asked me all that details but couldn’t really comment on them. I suppose it’s good to call and get it out of your chest but if you want something back, unless it’s a proper information about benefits, finance or things like that – they won’t help with emotions.
  5. I decided to plan days ahead not to be alone. Of course I can’t have someone here 24/7 but meeting friends helps. I’m not yet at the stage when I can bake cakes and serve them to friends. I’m hardly at the stage where I can clean the house 😦 It scares me somehow to have days off work and stay at home.
  6. What else? oh yes, I have a idea…. maybe if there isn’t any support groups in the area, I can start one myself? it’s of course a commitment… It’s something to think about. I don’t want to rush to anything just yet.
  7. I let myself plan things for after chemo. So, here we go. An afternoon tea in a posh hotel in the area to celebrate end of chemo 🙂 then a night out in the central London – with theatre to celebrate my birthday and out 10th wedding anniversary. A dinner out with in-laws and brother in law to say thank you for all the help. Actually maybe we can take them to the afternoon tea? that’s a possibility. And a day out in London again, to take my girls to Madame Tussaud’s and London Eye… and finally a week in Cornwall 🙂

So, there are the points. The practicality though is that I’m sitting here, distracting my attention with writing this blog and I wonder all the time – is another seizure going to happen? How am I going to cope? Hmmmm maybe I’ve just said it. How AM I going to cope.

Life goes on and has to go on. I cannot change them. I cannot change what’s happening. Well, I can try – medication and all I’m doing above. But overall once the cards are played, we can’t really change the deal. So we should make the most of it. I’ve got in touch through Facebook with people who care after people with seizures and people who have seizures. So, they all talk about anxiety, but not the same as mine. I’m afraid of seizures while they are afraid of their loves one hurting themselves and not taking medication etc. It’s good to notice that. Also some just live their lives and say they don’t allow the epilepsy to rule their lives.

My pattern at the moment seem to be I’m feeling ok-ish, then especially in the evening my anxiety rises up. so I’m trying distraction techniques. Then the more time passes the better I feel until another seizure happens when I got completely down again. So the main thing is work on the anxiety I think as I can’t really stop them happening.

And a good thing would be to think of our relationship. As it looks like I’m taking all the attention on myself. But really it’s Graham going through the horrible part. He is suffering on chemo and he is actually having seizures. Then not only he feels ill, but also he feels guilty as he can see how it all affects our family. And he needs me. And that thought actually is helpful, that he is relying on me and trust me enough to put literally his life in my hands. So I have to keep it all up and going for him and for the children.

Nemesis

So….. it’s been a difficult week. It’s been another difficult week I suppose, but this one filled up with emotions and thinking. I was supposed to make it more of a “proper” blog full of photos of my recent bakes and cooking skills but …. I forgot to take a photo of the cake I baked and then I had a major setback.

I suppose my life has changed completely since 30th December 2017. It was difficult to manage with Graham being in the hospital and juggling the work, home kids and looking after him, the everyday trips to hospital. Even not for a moment then I thought it would be cancer and he would start epileptic fits. Even if the cancer went through my mind, I would have never ever ever in million and trillion years expect the epilepsy. I thought life was difficult in December/January…. but it became worse.

I can’t explain the feeling I had. I was petrified of seizures. I can cope with cancer, chemo, side effects and moods…. but seizures, their unpredictability scared me. I desperately searched for help which actually turned out more difficult that I expected. Mental health care isn’t easy accessible. Maybe in different counties… I don’t know. I have received help now but I actually has never been formally diagnosed with anything. I felt down and alone and petrified. Life lost it’s meaning. There was no light at the end of the tunnel. I felt like running away, leaving it all. I hated every moment of what was happening. It was a dark place. Everything seemed confusing, out of control. You can’t just “get on with it”, you can’t just search for tips online or call Samaritans. There is no energy to carry on with houseworks, cooking seems a chore. Having bath seems a chore. Dealing with children is actually an impossible task. But I did carry on going to work as it was my only escape from home. At work I could be myself, not a carer, even working as a nurse. I was free from the constant, CONSTANT worry about my husband.

When we had the 6 weeks seizure free period I started to believe things were improving. I let myself to fell into the false sense of security to believe it. I felt happier… and then Graham had another two seizures. He had one first, in his sleep as usually and I let him sleep… as firstly I was worried he would be tired but also I thought I’d see if he remembers what happened in the morning. But he went to sleep after his seizure and had another one about 1.5hours later, exactly the minute I decided to lie down and switch off the light and get back to sleep. So I had no sleep that night, nor I had any sleep the night after as any movement he made woke me up. Neither I had any sleep a night before as I was working. So after 3 nights no sleep I wasn’t a real human being. But things got gradually worse. Things got worse even when I went to work and thought I’d relax. I didn’t. My anxiety grew bigger and bigger, I had a feeling something horrible is about to happen to my kids, to me to the world. I don’t know. Just a horrible feeling of being stressed all the time, worried all the time at the back of my head about everything.

I had a counselling session that week. I thought it wasn’t particularly helpful at first, but it drew my attention to something. It’s a complicated issue reaching back to my childhood… but I realised after the session couple of things. Firstly generally I realised that the voice in my head is my mum. All the doubts I ever had and all the times I felt unsettled in my life was my mum and my upbringing. But that’s a subject for a completely another story. The other thing I realised was the fear. I had that fear in my and maybe everybody does to some extend, a fear of scary things. A fear of the inhuman, cruel, bad things. Things out of control. And I realised whenever I was scared of something I used to run away from it. I don’t usually conquer my fears. And then I realised that’s the exactly the same fear I was feeling. But wait a minute, I was scared of driving and I do drive now…so it is possible to overcome your fears. I talked to myself to calm down. I tried to reason. I stop denying the fear and accepted it. I tried to accept the situation. I tried to accept it is horrible, it is happening, I am afraid, it is difficult and it will be difficult for a while yet.

This fear – it is my nemesis.

When I tried to tame the fear it seemed smaller. I still haven’t yet slept a night in my house to see it in practice, but I calmed down and lost the overall feeling of anxiety. I realised that life do goes on. Yes, seizures happen and yes they are at the moment the central focus of our lives, but life do go on. There are things happening between the seizures, they are children to look after and watch growing up. There are things which still make us happy.

And mostly I do have to work out a strategy to deal with what’s happening. I need a plan in place. I need to prepare myself if seizure happen that’s it, I won’t sleep the night, I’ll become a nurse on duty. I prepared myself something I like doing, I decided I’d update this blog if need to, maybe  do colouring, watch a film.. I don’t know. I’ll occupy myself not to think but be able to treat Graham as my patient. This strategy is yet to be put into practice but…. it’s something isn’t it. It’s something more constructive than just being afraid.

I also signed up for a epilepsy awareness course, and tried to get some help from Bucks Carers. I don’t know if it’s all going to work. I don’t know how it is all going to work. But let’s give it a go.

Friends

And yet all of that wouldn’t be possible without friends.

I’m very lucky to have such a lovely absolutely lovely friends. I cannot even express in words how much they’ve done to me. I wouldn’t exist and keep going without them. I’m not going to name them here, but if you ever read it – thank you. I’ve said it personally many times. But friends make it possible.

At the beginning I was overwhelmed with the help I was offered. I would never go through that time without support. Never. And I know when the time goes, people have their own things and lives… but there are still few who are there.

There is a Polish saying, which I’m not sure I can translate correctly but it says: “Friend is who stays when everybody else leaves” and that’s true. Friends stay. You know if someone cares. It’s not about naming what they’ve done. It all counts. From evening conversations via What’s app, through coffees and endless chats about the same stuff over and over again, through coming to see me in the middle of the night and helping. It all counts. A little message every now and then to ask how you feel. Listening. Understanding. Advice. It all really very counts.

Side effects

Today is all about side effects.

Graham had his first IV chemotherapy yesterday and lots of steroids. It’s again the unknown – how will he react? How can we cope with it.

But it is also about the side effects of this situation we are in. The side effects which we have to cope and adjust to. I’m not sure if I’m a pessimist. I tend to think I am. I seem to be unable to deal with life hurdles… I think a trip into a childhood and luck of imbedded coping strategies would be an answer. It’s a good day for it – it’s cold and I mean COLD outside and snowy and -5C…. but it may be a subject for another post. If I get to my childhood I’ll never leave.

The side effects…. There are physical and emotional and psychological. Social. They all interact. There are side effects which only Graham has to cope with but there are side effects which the family has to cope with. It came to me as a surprise recently when I had to describe myself as his carer. Yes, I’ve become a carer do  I want it or not. I’m 37 (still!) and I’d never imagine I’d be carer for my husband at this age. Our girls are 8 and 4. What we should be doing is thinking of house renovations and planning next holidays.

But life is not like that.

Life seem a struggle in some ways. Never enough time, money. When you are a mother life also seem to be a guilt. Guilt of not enough time, not enough playing with children, not enough time for myself, not enough nutritious meals, not enough…. and yet now I miss that “not enough”. As the situation when I found myself as a carer…. is not comfortable. I don’t like unknown and surprises. Maybe it’s me. Maybe someone else would cope much better. I intend to go on and to the best job I can. As someone said to me – when you go through hell just keep going.

But the side effects… physical – tiredness, lack of sleep, fatigue. Side effects of steroids – agitation, hiccups (4 hours of hiccups!). Emotional – worrying and stress. The side effects terrify me. The physical ones we can deal with. The emotional ones are the ones which are the problem. I don’t know how to cope with things. I probably need a strategy but what is the strategy. I have no energy and I’m simply scared. I’m scared life will never be ok. that we won’t enjoy it again like we used to. I’m scared what happens if the chemo won’t help. And I’m scared of the seizures.

The U-word

So, there was this lovely blog which brought into the world the C-word. I haven’t read the blog although I did want to do it. But I watched the BBC drama about it and after I knew how it ended I couldn’t bring myself up for reading it. And then…. it was too close to home.

The C-world become real. I never thought it would. Things like that do happen to others but not us. Then we also had the E-word. and finally the overall U – word. The UNKNOWN.

So, I thought last few years were difficult. They weren’t. There were little struggles but I wish I had them now. We should really appreciate little things in life. So trivial but so true!! People go and enjoy life.

I’m 37 (still!) but soon to be 38 Polish girl, mum of two. I’ve lived in England 13 years. I’m a nurse. I’ve seen things. I’ve been there when people die and are born. But the recent events in my private life has brought me down. I thought I was strong…. it’s a Polish thing to be strong. To deal with your own problems. To take it “on the chin”… but I’m not strong. I crumbled completely like a biscuit in a tea.

My husband Graham had ulcerative colitis, nasty thing which makes poo your friend as you never ever have it under control. And the history of the illness can give you the C-word – cancer. Which has happened. I’ll never forget the moment we discovered it was cancer. But before we (he) had flare-up, steroids, hospital admissions. So yes, I thought it was tough. Then he had routine endoscopy and there was a stricture. And they did say you may have cancer, but who would belive in “maybe”. As Graham said  – I can’t base a decision to remove my colon on “maybe”. But we do, don’t we? we wear seatbelts as we “may” have an accident. But at the end he ended up obstructing and with an emergency surgery to remove his colon. We learnt about stoma. We starting to learn new life… when the cancer appeared.

But that’s not all. It was enough to cope with but it wasn’t all. Then he had two seizures – so E-word. Epilepsy. How? Where from? Why??? Wasn’t it enough already??? Investigations and the U-word. The UNKNOWN.

We don’t know if the cancer has cleared or will come back as mets. We don’t know if the chemotherapy will help. We don’t know if the seizures return. We don’t know if the medication help. We don’t know….. if we cope. Well I don’t. That’s why this blog. I thought to be honest – I thought I’d write my feelings as a coping strategy. About everything and nothing. About life. If someone reads it – great. Help me ad support me please. If not – it has the same effect really as writing to Samaritans…. therapeutic.

Life is rather a dark place at present…. but I’m trying.