Lost?

It’s been 3 years since I started writing this blog, and although there have been many points of confusion throughout I think this is the first time that I feel like ‘I’ am lost. Let me try and explain.

I have conversations, I attempt tasks, I go places, I look in the mirror, and I do not recognise the person I am, and I cannot see any likeness to any version of me that I have known. I started writing the blog because of lifestyle changes that I had chosen to make, but even though there were radical differences I still felt like it was me.

Once again lifestyle changes are being made, but these are out of necessity rather than out of choice. Whether that is ensuring that there is someone I know at a social gathering or putting things in place for returning to work so that survival can happen. It’s all necessary.

There is a good chance that this is just the way I am seeing things at the moment, I’m not sure, although I also don’t think I’d believe anyone if they told me it was!

I don’t know if I should be looking for ‘me’, if should be searching for the new version of me that may be to come, or whether I should just be doing what I’m doing with every day at the moment and just taking it as it comes.

Through the eyes of others

A couple of weeks ago I was asked ‘do you blame yourself or God for the situation you’re in?’ (The situation being ‘depression’) my answer was ‘neither’ and that’s the truth. I know that often people do. But I also know that I am likely to look back on this time and see what I have learnt from it, and see how it is part of my journey. The problem is that doesn’t really help when you’re living it. I know for me at the moment I am living day to day, and if I am invited to things my answer is often ‘I will have to see how I am on the day’.

For someone who likes a plan, day to day living is difficult, but is necessary. I may know what the theological response is, but it really isn’t helpful.

I have an army of women who I keep updated with how things are going in the good and the bad, and who I know pray for me on a regular basis. This week I received an email from one of those ladies saying something along the lines of ‘it is good to see there is progress, it may not seem like it, but there is’. Similarly I know that I can always rely on E to find the positive in ANYTHING, there’s glass half full and then there’s E – she’s on a whole new level!

At this point when I can only live day by day, step by step… where, although I may have a plan I also know that plan may have to change or, let’s face it, be cancelled last minute. I need those people who can see my world from the outside, without the cloud, fog, and confusion.

A favourite feel good film of mine is Prince of Egypt with the song ‘heavens eyes’ where Jethro is talking to Moses, who thinks he is unimportant and insignificant, but Jethro makes him realise that everyone has a purpose but he has to look at himself, and others through heavens eyes.

A few weeks ago E made me cry (nothing to write home about particularly at the moment) but the reason was because she told me that I was a child of God, and that I was beautiful, and made in his image (she did add that he probably was having a bit of a laugh when he created my brain). Why did this make me cry so much? These are things that I know, and believe, but needed to hear.

At the moment I cannot always trust my own judgement of how I am, it is rather skewed, and I am so so so grateful that I have people that I am able to see my life through the eyes of.

Comfort of the shadows

In my previous post I wrote about how the last few weeks (possibly longer) have been about Survival and one of my key survival mechanisms has been isolation. If I hide away from people then I don’t have to: explain what’s going on… go through the embarrassment of tears… try to be polite… expound energy on anything other than survival etc… so isolation it has been. Whether this was a particularly wise plan I am unsure but it was and, still is, a mechanism that I was putting into place!

A couple of days ago I was walking back home, the quickest route would have been through the town, but I chose to take the back route. Why… to avoid people. I was having a particularly vulnerable day, and had already forced myself to leave the house, so the back route it was. This back route involves some footpaths, as opposed to main roads. I have to say it was a joy to walk down these footpaths as they were covered with trees, and the shade was a delight. It was so tempting to just sit… in the cool and the shade… avoiding the excessive heat.

BUT… it wasn’t an option… in order to get home I had to leave the comfort of the shadow and head out into the sunlight and the heat. It was necessary.

This challenged me on the day, especially because of the bible reading that I listened to whilst walking earlier that day, and a talk I’d heard as well. But it has been on my mind since. Maybe for survival isolation was necessary, and possibly still is to a certain degree. But i can’t stay there, even if it is comfortable. I need to step out, maybe only for short bursts at a time, but if I don’t step out I’m not going to make any movement. Again I know it needs to be small steps but at least even small steps make movement.

Survival

My answer to the question ‘how are you?’ Over the last few weeks has been ‘I’m surviving’ and my aim for term has been to survive – which I have accomplished, albeit holding on by my finger tips!

The dictionary definition of survival is “the state of continuing to exist in spite of difficult circumstances”. I didn’t know the specific definition but I would say that is a very accurate account of the state I have been. I have been going through the every day rituals doing what I needed to do but that is all I have been able to do, and that has been a struggle a lot of the time.

So what now? Now that I have survived? I’m not entirely sure is the entirely honest answer. I know there is going to be some complete resting for a couple of weeks, switching off completely from work related stuff. Then… trying to put some practical things in place so that I don’t find myself ‘surviving’ again.

My job is two-part 1. Teaching 2. Christian development – both of which require me to enable growth in others. This is only possible if I am allowing growth for myself… therefore survival isn’t an option… I need to try and find the possibilities to grow and develop and thrive.

If I were to start a blog now I’m not sure I’d come up with the title enjoying not enduring… after all survival suggests endurance! I need to be patient with myself and not put too much pressure on myself but I’m aiming to get back to the enjoying part! Are you ready for the journey?

Treading water… struggling to keep the head above

I used to go life-saving, in fact I used to be a lifeguard. One of the bizarre things about lifesaving training was that as much as you learnt how to save people you also spent a lot of time being a casualty and waiting to be rescued. As I write this I know that it sounds melodramatic but that is kind of how I’m feeling at the moment. I feel like I’m treading water, but that I’ve been there for some time and I’m now struggling to keep my head above the water, but I’m still there… waiting… to be rescued.

The irony is that at the moment, the way my brain’s working (or isn’t working), I wouldn’t go anywhere near a swimming pool. If I did I’d let the lifeguard know about the epilepsy meaning that everyone else is in danger because the lifeguard doesn’t take their eyes off me – believe me I’ve seen it happen!

To take the lifesaving metaphor even further, I feel like I’m going from incident to incident. I’m the casualty, in the deep end, treading water, waiting to be rescued. I get rescued. Then it’s someone else’s turn, so I’m a casualty again.

It’s always a different incident, and never quite manifests itself in the same way. BUT… it keeps happening… and then I think excellent we’ve made progress we’re out of the woods… sorry we’re out of the deep water (I’ll try and stick to the same metaphor) and then back we go again.

Do I have anything wise and profound to say from this? No! It’s merely an observation. I know that life is never going to always going swimmingly but at this exact moment in time I would really appreciate the opportunity to feel able to swim and not feel the need to wait for the rope, the buoyancy aid, or to be towed out of deep.

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