Small steps required

I’m pretty certain I’ve started a blog like this before but… in 1992 I found myself on the bathroom floor, very confused and wondering what on earth had happened. Soon after I was diagnosed with epilepsy. 26 years later and I feel like I’m being diagnosed for the first time again.

In those 26 years I don’t really feel that the epilepsy has affected my life. Yes I’ve never been able to drive, but I grew up knowing that was likely to be the case. I have to take medication every day. I don’t go clubbing, but I’ve always been more of a pint in a pub girl anyway, I’ve never been to a gig and there are certain parts of films that I’ve never seen. If I have seizure I normally have to sleep it off, and quite often there will be an injury BUT it has never affected my everyday life.

There have been many changes in my condition over the years, and we’ve had quite a journey including a wonderful spell where it wasn’t really an issue at all. I wasn’t ready for this change and it has taken me a long to accept what is going on, and that it may be more than a blip.

My epilepsy is now affecting my everyday in ways that are probably not visible to anyone else, but to me they are very real. Whether it is the physical twitching, confusion, absences or memory loss. There was a point where the frustration was causing me so much anxiety that I was… well… let’s just leave it with the fact that it causing great anxiety.

Over the last couple of weeks I have started to accept my disability, and started to take some practical steps to aid me in the day to day. Whether that be something to hold when I know the frustration and anxiety levels may be high; seeking the necessary help and guidance from professionals; writing down things as soon as I think of them; listing what needs to be done; resting when I need to rest; not getting annoyed with myself when things don’t quite go to plan.

It’s a work in progress, and I think this is the very beginning of the journey, but a few small steps have been taken and those small steps have made a difference already, I just need to make sure I don’t start trying to stride!

The power of the plan

A few years ago now I was looking after my two nephews and niece for a day during the summer holiday. They were all quite yesterday unfortunately at the time, so I went along with activities, some places to go. I told them at the beginning of the day what we were going to do, and we did it. The following week Grandma looked after them. At the beginning of the day the eldest asked ‘what are we going to do today?’ The response was ‘I don’t know play some games, have some fun’ to which the response in a certain tone was ‘Aunty Helen had a plan’!

About two or three years ago now the husband and I took the eldest nephew to London for the day. Before we got the train we gave him a challenge, we gave him a disposable camera and a list of things that he needed to take photos of, and he would get a prize if he was able to tick them all off. His dad looked at the list and said ‘how on earth are you going to manage to see all of this?’ To which the response from my sister in law was ‘Its Helen, she’ll have a plan’

I do like a plan, I’m OK moving away from the plan but I do like to have a plan in the first place and to have sense of what is meant to be happening. I’m definitely not really an ad hoc person.

The plan this week was to survive until Thursday when I had a hospital appointment with an epilepsy specialist. It wasn’t until that appointment that I realised the power of having a plan has on me.

I came away from the appointment without it any answers but a plan of moving forward to try and discover the answers. Essentially are the symptoms I’m experiencing a result of epilepsy or medication. I walked away from the hospital as though an enormous weight had been lifted. It wasn’t until I was debriefing the numerous people I needed to debrief that I really realised nothing had been accomplished other than a plan… and only part of a plan

What is the power of a plan? I think it’s a sense of control, and of moving forward. A plan doesn’t need to be step by step, minute by minute – it has to allow for the flexibility of life. But it gives a good grounding that when things get in the way you know where you’re heading back to. Never under estimate the power of a plan

Going round in circles or spiralling out of control?

Is there something that you do that just makes you feel ‘you’?

I find myself in a predicament at the moment where the thing that makes me feel most me also causes me the most frustration and anxiety. I’m a ‘big picture’ person and I keep being told to take each day at a time. But once the ‘me being me’ moment is over the rest kicks in.

It really does feel like I’m just going round in a vicious cycle and am still pretty convinced that the only way to snap out of it, and avoid spiralling out of control is the

Reboot I mentioned earlier in the week. Unfortunately E who works in the medical field also feels it wouldn’t be appropriate! Such spoil sports!

So where do I go from here? I’ve no idea? I’m trying to take each day and making the most of the ‘me’ moments, and trying to hold on to that feeling as well! Other than that – I’m stumped! Any thoughts feel free to let me know!

Reboot

A few colleagues computers were going rather slow today, but after they were rebooted they seemed to be going at normal speed again.

I have to admit I real feel like I could do with a reboot at the moment. I’ve suggested a variety of different options to friends but they don’t seem to think they are viable. It’s not that I feel I’m going slow I just don’t feel I’m fully ‘me’. That’s even more ridiculous considering I’ve given two talks in less than 24 hours talking about how we all have a purpose and wherever we are and whatever we are doing we have a role to play.

Still… it’s easy to say the words, to tell other people… but to hear them yourself and take notice is something completely different.

The thing I kind of like about technology is that so often turning it off and turning it back on again does seem to work…. you never really know what the problem was but that seems to solve. And I guess that’s why I like the idea of a reboot at the moment. I don’t know what the problem is… it could be the epilepsy, it could be the new medication, it could be the combination of medications, it could be stress, it could be anxiety. It could be a variety of all of these things.

Until we know the cause, we are not able to work out a solution. I do have a hospital appointment coming up but it’s going to take time.

Unfortunately, even though I’m sure I saw it in an episode of house, my friend assured me today that the reboot is definitely not a viable option.

So patience, living in the moment, and recognising that there is a purpose for everything, even if I can’t see it, and reading my own talks it is going to have to be!

Meaningless???

According to A.J.Ayer I should essentially be redundant. I’m not going to go in to major detail, as I’ve spent a day doing Philosophy revision with year 13s but… in a VERY SMALL NUTSHELL language is only meaningful if it can be proven to be true or false; or if it can be verified through the senses – this is known as the verification principle. Therefore, as tings to do with God, religious experiences, philosophy, and moral decision making do not meet this criteria; and this is what I get paid to talk about and teach people about each day. Then according to Ayer everything I say as part of my job, when teaching topics, (obviously not when handling and analysing data) is MEANINGLESS!

As I may have mentioned, the husband has been on a cruise with ‘work’. He has now returned, and I have to say that one of the things that I have enjoyed the most about him being back (apart from the cups of tea) is the random and often pointless conversations. It took me ages to go to bed last night and get up and out this morning, because I’d suddenly think of something that I felt the need to tell him, which would often lead to further ‘discussion’. If I think about conversations I overhear between pupils at school, and conversations I was involved with, with my year 13s whilst revising Philosophy today, I’m not sure I would say that any of it was particularly life changing!

BUT would I say that any of it was meaningless?

Can we actually truly say that anything is meaningless? Something may not have a direct meaning in and of itself, but it will add to the meaning of someone’s greater life experience. One of the concepts we were talking about today was means and ends, how some things have an ends in and of themselves but other things are a means to a greater ends it turns out that one pupil was at the revision session today – jump forward a few steps – so she has a stable life and is able to buy and do what she wants to do.

I think we can look at conversation/language in the same way, but also our actions. If consider everything to have some meaning, even if we’re not sure what it is, won’t it affect the way we tackle it? Maybe?

In the moment… no ifs…

The husband has been away this week, he has been away with work… on a cruise… to Guernsey, Spain, and France! I may have taken the mick quite a bit especially about food consumed but he has had 24/7 sole responsibility for another adult so I imagine it has had its challenges as well! This has meant that I have had to find entertainment for myself, as me left alone with my brain at the moment does not seem to end well!

Anywho… on Monday I had supper with E. this was actually the first time I’ve properly seen her for ages, yes we pretty much have daily contact and I’ve spoken to her on the phone but actually sitting down talking in person! As always I came away feeling … I have to admit I’m actually really struggling to find the words here at the moment… I felt good but I also felt challenged – which actually is quite normal with E, and something I think is a sign of friendship!

This got me thinking though, someone had asked me how I knew E. there’s the obvious answer of meeting through church, but the more long winded answer involves ifs…. if the church was going through a building project… if we hadn’t decided to go that group… would I have got to know E?

I sometimes ask similar questions about the husband. I met him when I was at uni, and he had come home. The reason he had come home was not a pleasant one. If he hadn’t had to come home would I have met him?

Does it matter? Or should I just be so so so grateful that I have both the husband and E in my life?

As well as wondering what life would have been like if I hadn’t met certain people, recently I’ve been jumping ahead too. I’m not going to go into details, but my brain has been causing me some issues. At times this has led me to question my career as a teacher! I have had to have several people remind me that I am jumping way ahead. That is not a concern I need to be thinking about now, or any time soon – and hopefully not at all.

Why do we do this? Why do we think about what our lives might have been like? Why do we take simple things and create an idea of what our life is going to be? There’s something to be said for living in the moment – yes you get to enjoy it and make the most of every second, but also you can deal with what issues are happening as opposed to the ones you think may come your way!

Where I am…

I haven’t had a grand mal seizure (big scary full blown fit where I am likely to hurt myself) for over a month. Following the events of the 2018 it follows that I should be rejoicing and should be over the moon… and yet… over the last week or so it can safely be said that has not been the case.

I am still having petit mal seizures (absence type fits) which are manifesting themselves in different ways, and are literally (unfortunately I am using that word correctly) a daily occurrence. The thing about grand mal seizures is once they’re done, they’re done. I may need to sleep for about 24 hours and may need hospital treatment on various bones, and to eat soft food due to a bitten tongue but it’s happened, it’s over. With the petit mal that just isn’t the case and it’s starting to feel like it’s taking me over.

I’ve started to question pretty much everything that I am doing, because I do not trust myself or more importantly the functionality of my brain. This did work to my advantage when half my sermon hadn’t printed for church, but because I didn’t trust myself I’d emailed it to E the previous day so was able to get it up on my phone! On the whole though it is not a good place to be. My challenge is to work out how I get out of this ditch that I appear to be in.

However, I am surrounded by amazing people. I met with a colleague and friend the other day, I’d had a particularly bad morning, and was explaining what was going on in my head. She didn’t say a huge amount but she did help me to rationalise it all in my head. What really doesn’t help is the ridiculous expectations I have of myself! However, there are definite limitations on what I am able to do and achieve at the moment, and I need to accept that that is OK. I have heard at least two talks over the last week which have referred to the fact that we don’t have to do anything to please God, the love is unconditional and He meets us where we are.

At the moment I’m a bit of a physical mess, with risk of emotional breakdown, and at times feeling completely incapable and useless. I have to remind myself that actually, 1. the majority of the time I am doing a good job.

2. I have to look after myself, otherwise I am of no use to anyone

3. I’ve had blips with the epilepsy before and come through, this is probably just one of those as opposed to a life-altering event which I seem to have turned it in to

4. It doesn’t matter what state I am in, or how my brain is working, I am loved and God has come to me to wrap his arms around me and hold me in his embrace.