Whatever the weather

I was in Birmingham last week visiting family with the husband. When we were out we found that when we were in the sun it was hot, I had to put sunglasses on, and sometimes there was a need to take a layer off. Then… as soon as we were in the shad it was really cold, the sunglasses had to go back on top of the head, and the layer was put back on. On the train and bus journeys I found that my sunglasses were going on and off so much that it was probably causing more of a strobe-like effect than passing through trees with the sun shining through.

Anywho… don’t get me wrong, this wasn’t a new experience, and I wasn’t shocked at all, BUT it got me thinking. The thing that stood out for me the most was the frequency that the change was happening, but also the huge difference between being in the sun and being in the shade.

My life has been like this recently, and I feel so sorry for my friends and family, but so immensely grateful for them. Within a week I will go from being happy, positive, getting on with it, to a crying wreck of a person, to angry and anxious. Sometimes this can all happen within a day! The contrast is immense, the frequency is immense, I don’t know whether I’m coming or going and it takes a lot out of me.

When we were out in Birmingham we continued with our journey no matter what. It got a bit frustrating at times, especially, for me, the raising and lowering of sunglasses – feeble I know! That’s what I’m having to do at the moment, is just keeping going. There are times when I cover myself up and hide away from the elements, but there are other times when I try to soak in as much as I can whilst I can. Throughout it all I have the constant foundation of my faith, and also the love and support of my friends and family who know whether to allow me to protect myself from the storm, come and dance in the puddles, or come and soak up the sun rays and enjoy the bright spell.

At the moment I’m not really in control (at least I don’t feel I am), but I can be aware of what is best for me in the different weather fronts of my life, and be aware of the frequency that it can change. I can also look forward to the spring season of growth and blossom – I really do pray that comes around again soon!

Pain of the Brain

I was teaching a class today, and as part of the particularly tricky lesson subject, I was listing different things that I am. This list included daughter, wife, sister, teacher, friend, epileptic… when one of the pupils stopped me in my tracks and said ‘I wouldn’t include that miss’ I was taken aback but tried to explain that it is a big part of who I am and has had an impact on who I have become to which he responded ‘I understand that, but I wouldn’t say it was a specific character that you are like wife or teacher, but is part of who you are’.

I was nearly speechless and was definitely blown away by what was said. I think it was particularly poignant because it was said today. As I said in my previous blog I’m a bit confused and frustrated at the moment because of my brain.

About 27 years ago I found myself on the bathroom floor and that was the start of my journey of being diagnosed with epilepsy. It has been quite a journey with ups, downs, various cocktails of drugs, and numerous anecdotes and injuries.

I think previously I would have agreed with the pupil today that it was just a part of me. It obviously impacted me, but I would say I had epilepsy rather than I’m an epileptic.

Over recent weeks, for the first time in 27 years I have felt Disabled. And it’s been a shock

What’s the difference?

There have been a few times when I’ve had to ask the husband to come and meet me because I didn’t feel safe walking on my own; I am having more regular myochlonic seizures (twitches) which is resulting in me dropping pens, bumping into things, losing footing, forgetting words; I don’t feel safe to go out running; and this is the tip.

I have been questioning whether I am able to do my job any more, and have even had moments of thinking it would be better to return to the medication that made me feel awful.

I am also aware, from various conversations, that a lot of this is in my head alone. But in my head it’s affecting me differently and I have ridiculous expectations of myself, so I’m questioning whether I should continue or can continue.

But then I listen to the comment from the pupil today, I look at the definition of disability which is

a physical or mental condition that limits a person’s movements, senses, or activities.

Yes, I am limited by my brain, but it’s also my brain that enables me to do my job and do we not encourage people to focus on their abilities rather than their disabilities?

It’s much easier to write this than act it, but I need to remember that this is just another par of the journey that me and the brain are going on. It’s going to be tough one, but who knows what will come out of it?

Memories Matter?

It’s been a while since I wrote… why? I’ve been confused, annoyed and frustrated. I’ve been questioning a lot, especially about work, the day to day, and how things are being affected by my brain. It seems to be playing up particularly spectacularly at present…

…or so I thought…

I definitely do think that is the case and I’ll be writing more about that side of things soon, but then social media was sharing memories with me. These were memories ranging over a number of years, and it seems that I may have felt I was under control and the brain was stable but actually that has never really been the case over 27 years!

I needed those memories, to remind me that I’m on a journey, and will continue to be on a journey. It may feel like a particular struggle at the moment, but by the looks of it I’ve been there before. That doesn’t mean it’s going to make it easier, but I know I’ve made it through to more stable times before as well.

It’s dangerous to live in the past completely but it is important to remind ourselves of things that have happened. I was doing some revision with some year 13 pupils at lunch today and we were looking at the problem of evil and suffering. One of the arguments we were looking at was how pain is necessary for us to develop as humans. Again it can be dangerous to use this as reasoning for everything… but it can also be encouragement in the tough if you realise where you’ve come from and what you’ve come through.

So I’m grateful for the memories of social media this week, they have been very timely (obviously) and the impact has been noticed!

I can see clearly… or can I?

This morning I nearly serenaded my colleague with”I can see clearly now I have glasses on” but there was someone teaching in her room so I couldn’t get to her, I’m sure she was gutted! Why was I going to serenade her?

My morning consists of getting up, showering, getting dressed, sorting breakfast, eating/drinking whilst reading, then a 45 minute walk to work. This morning I was on the final stretch of my walk when I realised I hadn’t put in my contact lenses!

As you can tell my eyesight isn’t that horrific, after all I managed to read a book, and get close to work without realising! I made it through most of the morning before the amazing husband dropped my glasses off!!!

When I put my glasses on, I realised how blurry my vision had been, and suddenly there was some clarity. Then… when I was walking home it started raining, my glasses were covered, my vision was impaired again!

This is the perfect analogy for me at the moment.

I seem to be in an endless cycle of being confused by my brain and it’s activity, then having moments of clarity when I think I understand what is going on and how it’s affecting me and how I can deal with it, then in a sudden moment back to the confusion again.

Definitely more of the confusion than the clarity at the moment. There is no answer, well there isn’t really a question it is just an observation.

Speaking of observation… I had pupils commenting on the glasses, as they are not used to me wearing them. I also had to take a second look on a few occasions as although I wear glasses at home I’m not used to seeing myself in them in work.

Another useful analogy for me at the moment, as I’m having to look at myself in a different way at the moment. Realising that it’s still me, but different to how I’ve seen myself. Im going to have to leave that one there for the moment… it’s a work in progress but I have a feeling there are going to be some more identity ones in the near future!

Here’s hoping for some clarity on that one!

Expectations and Limitations

I am aware, and numerous people have told me that I can be my own worst enemy. Why? Very simply because I can have (or do have) high expectations of myself. I wouldn’t necessarily say that I was ambitious as such, but what I do I have high expectations of.

The way I see it is, I have been given a job to do and that should be done properly, that, as a concept, doesn’t seem to be problematic, but I have a tendency to see more that I could be doing and to do that as well.

Why does this make me my own enemy?

Purely because of my reaction to myself if circumstances mean that I can’t do something to the level that I expect. I’m still doing what needs to be done, but I get disappointed and frustrated with the circumstances but more so with myself. The irony really being that sometimes, it is my high expectations that mean I can’t reach them, and the circle starts!

This seems to be something that is particularly predominant at the moment, for reasons that I’m very much in the beginning process of trying to work out – but I’m sure you’ll hear about in the future. However, one thing I am trying to do is to realise my limitations. This doesn’t mean that I can’t have high expectations of myself and my work, but that I need to realise that I’m not always going to be able to reach them – and that’s OK as long as I am doing what needs to be done.

RESToration

A couple of years ago I made a decision… that decision was that Saturday would be my day of rest… my Sabbath. I recognised that I would have a tendency to work for most of the weekend and that wasn’t having a particularly good effect on me. Most people would probably assume that Sunday would be the best day to rest or most likely day but my reasoning was quite logical. Sunday morning would normally involve Church anyway so that’s half the day gone, and not exactly restful, so Saturday was the chosen day.

Two Saturdays ago my pedometer read over 17000 steps by the end of the day. That may not sound like the most restful of days, possibly even less so when I say I walked from Whitstable to Herne Bay and yet by the end of the day I felt more relaxed and energised than I had for some time.

Rest is going to be different for different people, all I know is that for me it just has to be not doing work, and usually exercise is beneficial.

BUT rest of some description is important for everyone, and necessary to restore ourselves, to give us the energy to get on with the normal day to day.

Face to face

Last week the husband said to me ‘I like spending time with you’!

Well… you would hope so! After all, we are married, and especially as next week will be the 16th anniversary of being together!

So, why the need to declare it? For Christmas we got two vouchers for restaurants, and we’ve used them both in a few days! There’s two reasons why I like going out for a meal with the husband, or with anyone for that matter. I generally like the food, but more importantly you get to talk properly and without distraction.

Don’t get me wrong we talk to each other at home, but it’s normally with a backdrop of TV, or frustration that we’re missing something on TV, and often just about the day to day. When we were just us, out, we talked about all sorts – the horrificness of last year for me, the achievements of last year for him, hopes for the future, plus a lot of laughing!

There is something so special about face to face conversation or even phone conversation.

Living in a world in front of a screen or behind a screen, sending messages, emojis, memes rather than having a conversation it can be so isolating and you also forget the energy that you get from other people.

Yesterday I felt like going into full isolation mode. I was just going to hide in my room, and only see the classes that I was teaching. But I’d had this blog going round in my head and I changed my mind and went for my usual cuppa first thing and I’m glad I did. I was able to talk about what was going on but then able to move on (for that moment) as well. If I had gone with my instinct I would probably have struggled a lot more yesterday but energy and strength was gained from conversation.

Why do we hide behind screens? I think there’s two key reasons. 1. It is definitely easier. 2. We can hide. People can’t hear our voices or see our faces which will give us away!

I challenge you as I challenge myself to speak to people more, especially but not solely with the big stuff. You’ve been given a voice… use it! (Mum if you’re reading this I’m sensing the irony as I’ve been trying to rest my virtually non existent one this week – will call you later!)