Meet Fuzzy

As an impulse of a moment I decided to buy a hamster. She’s Russian dwarf hamster. I thought it would help my older daughter to adjust to the difficult situation we are in. She doesn’t like talking about her feelings so maybe if she had a “friend” it would help her. Also maybe life would be less scary. She really warmed up to the idea, thought about names, promised to clean the cage etc etc. Obviously when we finally got it, she cooled down a bit ha ha but hey. That’s life. I spent lots of time reading about taming hamsters… types of hamsters, food for hamsters. You can train your hamsters etc. I tried to approach it today and after giving her few days to get used to us and the new environment I used the chance of cleaning her cage to try and handle her. Nothing is as easy as it seems.

But maybe that’s part of my answers. Maybe in life nothing comes just like that and we need to put some effort into things to achieve success. I have to say the hamster didn’t bite me but she was nowhere near feeling comfortable or liked being handled. She was petrified. It will take a lot of time to become friends. And my excitement got a bit less. I was feeling fed up a bit. I think it’s a part of my character I’ve never before realised. I didn’t know I have problem facing troubles. I thought I was strong and facing difficulties with pride. The last six months was a very deep journey inside myself. It’s amazing how little we know ourselves.

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.

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.