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….
- 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.
- I will continue CBT therapy, but that’s not until next week. So no news about that.
- 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.
- 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.
- 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.
- 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.
- 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.