Doing well? Different perceptions

Regular readers will know that E is a glass half full kinda woman and surrounds me and drowns me in positivity. I thought it was rubbing off on me, but a few events from this last week make me wonder. I definitely think that I have a very different perception of my life than others seem to. I don’t know whether that’s because I’m the one living it or whether it’s because my mindset still isn’t great, but the perception is different.

On Friday I was sitting with the nurse at work because I was rather twitchy – having involuntary movements – I’d already spilt some tea, and then it seemed to be getting worse so reinforcements were brought in. Whilst I was sitting with the nurse I was getting more and more frustrated with my brain, whilst she was sitting there saying how amazing I was that I was able to do my job, and I didn’t let the epilepsy get in the way.

Today I went to an event which I hadn’t confirmed my attendance at, not knowing what my brain/mood would be like. Again there were people saying it was great I was there, and that I was doing really well. I walked home in tears thinking I shouldn’t have gone.

At the secondary school I went to there is now an award which is the ‘Helen Bagnall award for perseverance’ which my dad gave in recognition of the perseverance I put in at school when growing up with epilepsy.

BUT I’m not sure that is the case. I’m not sure any of it is the case. I definitely don’t see it like that. To me I’m just doing what needs to be done. I had to go to school, and I had to do the work. People have been surprised that I’ve been at work over the last few months, but in my head it has to be done. Unfortunately the epilepsy creates hurdles and makes it more difficult at times. Recently the epilepsy has stopped me from doing everything to the best of my ability and has hindered me. I’m not brave, I’m not special, I’m frustrated as anything.

I’ve written previously about not being defined by my disability, but it’s very difficult to think like that when it’s affecting your life and you feel that you’re not doing anything fully and that that then is letting other people down.

Don’t get me wrong, I am still feeling better and generally more like ‘me’ than I have done in some time BUT I am more aware this week that my perception of how I’m doing is very different to other people’s. I don’t think it necessarily matters, it’s just different and I don’t need to beat myself up for not seeing it in the same way.

Making lemonade

I’m hurting at the moment. I’m hurting because I had a seizure at the weekend. My back, legs, lip, and neck all hurt… and I look like I have a black eye developing! The seizure came after a few twitchy days… I guess you could argue that I knew the seizure was coming but you never really do!

BUT I’m the happiest I have been for some time. I have laughed more over the last couple of days than I have done in ages. I have also been told it’s good to see ‘me’ back!

I may currently be hurting, I may well have been twitching, but that’s the lemons… that’s a result of some changes in medications which we are trying to settle down… another side effect is that my mood has lifted – the lemonade!

I have a choice of what I focus on. Do I focus on the hurting or the happiness. I’m trying to focus on the happiness – especially after the last few months. When I move I am reminded of the seizure and the pain, but it doesn’t take much to remind me of the happiness which appears to have been lost!

What decision will you make? A squeamish face from lemons, or a refreshing drink of lemonade?

All the small things

It’s been an interesting week! Back to work, issues back home, some interesting obstacles falling in my way, some ‘spilling tea twitching’ and, not surprisingly, some tears. But I think E and some of my other friends are really influencing me now because, although that stuff has been there what stood out for me is…

1. For three days my mood has been more uplifted. (I have been scarily, and tea spillingly twitchy at times but that is not the focus and this all suggests the drug change may be working)

2. Because of a work commitment today I have had the opportunity to pass or spend time with people I haven’t had the opportunity to spend time with for ages.

3 I have had some really positive lessons, and other interactions at work, in spite of difficulties.

4. I have ended the week spending time with some friends at a pub. The first social event I’ve been to for a long time where I felt like ‘me’

E is a glass half full kinda lady, and will often give me positive responses when I whinge or rant about something. This week I have felt it not only right, but essential to focus on the small things, the bursts of joy in a place of upset and confusion.

Those small things have given me just enough strength to carry on with everything else. I am aware it’s a time of transition, and it will take some time for the drugs to finally be at the level the dr wants. So for now there will be times of low mood and times when I’m twitching. As I said to my friend tonight who said ‘I’m really enjoying spending time with you’ take advantage of it whilst you’ve got it, I know I am.

Enjoy the small points of joy, somehow they are strong enough to get the cloud, darkness, and confusion!

Family from Faith

Over the last week I’ve spent a few days up in Brum, and during that time have spent time at the church pictured above or with people from the church above. This is the Church where I was baptised, and the Church that has played a huge part in my life.

I have been asked many times why I’m a Christian, and my answer is… it has always been a part of my life.

That has been shown this week by the fact that I haven’t lived in Brum and been a part of that Church for over 14 years, and yet I was welcomed, and what I saw today, when I went for tea and toast, was that that was the case for anyone who came in. I was welcomed by those I had known all my life and those I didn’t know at all, and similarly anyone who came through the door was greeted the same.

The main reason I went to Brum this week was for some time with mum, a bit of TLC, and because with mum no effort needs to be made… BUT that was exactly the same at St.Giles this week as well… why? Because they are family.

I say my faith has always been a part of my life. What do I mean by that? Sundays meant Church, as did Christmas and Easter – the story was first and foremost in our household with presents/traditions as additional extras! I wouldn’t say that I had theology or rules shoved upon me, but I had an amazing example of parents who lived their faith. My mum will kill me for writing this but she is possibly one of the most kind and caring people I know, she works so hard, and does so much for everyone else, and she just gets on with it. It isn’t until you get to know her that you may realise that her life is a reflection of her faith.

Life is a struggle at the moment, but because of my family, the blood one and the spiritual one, it’s OK to be struggling. There’s no need to put the show on, because faith is a part of life… all parts of it!

I feel so blessed to have grown up as part of a church family, that has instilled that in me in the first place, but also allows me back into the fold even when things aren’t all shiny and bright!

So often we hear talk of ‘brothers and sisters in Christ’ or being part of the Church family. This week I was reminded what that meant. I often put pressure on myself to be more than I can be, and need to remember I am who God created me to be.

Just different

This morning I sent a message to E saying ‘I need to stop reading old blog posts’. The book of face sends me reminders, and today I was reminded of a blog I’d written a couple of years ago about how fantastic I was feeling at the end of term, how much I’d accomplished, etc… it was a tough read, especially at the moment.

E responded saying ‘not always helpful but remember different isn’t always bad it’s just different’! I probably could have guessed she would respond with something like that, there’s seeing the world like a glass half full and then there’s seeing the world through E’s eyes!!!!!!!

As difficult as it may be for me to try to get my head around at the moment, in terms of practicalities it’s not been a bad term. There has been a lot that has been achieved in the face of some considerable adversity. And actually when I look back at the blog post from two years ago, the biggest difference is actually me, my outlook, my health, which I probably could have told you anyway.

I may not be going out running regularly, or meeting up with lots of people on a regular basis BUT I’ve made it through a term at school when numerous people seemed to think I probably wouldn’t, and I’m still trying to walk when I can. I think actually it probably is an achievement that I’ve made, just a different achievement to the one two years ago, and I imagine in two years time it will be different again!

Fed up feeling lost

On the last Friday before the October holiday the entire school goes down to Canterbury Cathedral for the dedication service. I organise the service and it is one of my highlights of the year – it’s not lost on me what an absolute privilege it is to be able to worship in Canterbury Cathedral let alone be able to organise a service there.

Yesterday was different, and this is when I realised how ‘lost’ I am at the moment. The service happened, and I have been told by numerous people that it was a lovely service, but I couldn’t have told you that. I was there but I honestly don’t feel like I was there. People kept asking me questions about arrangements, things I’ve been sorting for years, and I didn’t know the answer. The head had to remind me that he and I usually walked in with the clergy – I’d completely forgotten! It’s not even as if it was an out of body experience.

There’s part of me thinking I should just be used to this now… but that’s it… I don’t want to be used to it. I still find I’m apologising to people for being seemingly rude – I often get told off for apologising, and not to worry. But I worry because it feels so alien to me and to the me that I expect.

I have seen my specialist this week, and medication is a changing. Hopefully this is going to have the necessary effect on other aspects of my life. On Friday whilst waiting at the cathedral I saw my spiritual director who works there some times, and as I was able to fill her in on my appointment she said “well I’m pleased to hear that, but you’re looking really well anyway’ to which I responded “it’s amazing what a dress and some lipstick can do, I’m also very good at putting on the show”. That’s what I’ve mastered this term at school, the show! Confidence and mastery and joy in front of the pupils… utter bemusement, loss, confusion, upset and often misery the rest of the time. Like the picture above, the public show is from a distance quite pretty, but up close and personal… a load of weeds that are being taken over!

Hopefully, with a break, and some new med changes some weeding may be able to take place and I may be able to find some focus again… Hopefully?

Glass half full – wanting to rejoice

It could have been seen as a miracle. I had four days in a row when I was feeling OK, I’m not sure I’d go as far as to say they were good days, but they were OK. This is the longest period of time that I have been OK for in ages. What do I mean by OK? I wasn’t feeling constantly low, the tears weren’t coming for no apparent reason, and I was actively seeking out people to talk to and catch up with – not avoiding other adults like the plague!

BUT then the cloud came and covered over again, and the last 3 days have possibly been worse than previously. There have been two occasions, late at night, when I’ve turned down lifts because I couldn’t be with other people, I couldn’t be polite I just wanted to cry and scream and hoped a long walk home might allow me to get it out of my system.

E is most definitely a glass half full kinda lady, and this can get frustrating, but it does also rub off on me as well.

I want to be able to rejoice that I had a streak of 4 days of feeling OK, a break in the cloud. But now that I’m encompassed by the cloud again, that is what has taken over and I don’t seem to be able to see the light. A friend said that she was praying that I would move to ‘good’ days not just ‘ok’ ones. But at the moment I can only think that the OK ones were a freakish accident, and this current state is what it’s meant to be.

There’s also part of me that worries that if I focus on the streak of OK, either I will put pressure on myself to be like that all the time, or I will be desperately disappointed that I’m not.

I suppose the fact that I’m writing about it is rejoicing in some way, but for now, that is all it can be.