Unknown protection

I have a waterproof and wind proof coat… I was very grateful for it today as I walked to and from school. I was still wet and cold when I got home but nowhere near as bad as I would have been in any of the previous coats I have owned.

Last week was a particularly wet, cold and windy morning. I was walking my normal route to school, which goes through the centre of town, and then just before the final stretch there is a meadow. As I started to walk through the meadow I was hit by the wind and the rain with a new force that I had not experienced for the majority of my walk. Why? Because I was walking on a path in the middle of a field with no protection at all.

I hadn’t been aware of the protection I had been receiving from the buildings for the remainder of my journey – after all I was still wet and cold – until they were no longer there.

Similarly I don’t think I have been aware of how much people have been protecting me over recent months. Sometimes from external things and problems, which they were keeping away so as not to cause me more anxiety. But mainly protecting me from myself, whether that was messaging me, inviting me out, allowing me to not go to things, not forcing anything on me, giving me space but also checking up on me, saying things to make me realise it was part of the journey and there would be brighter times.

It’s not that the protection has gone now, I’m still being supported amazingly, but I am on a different part of the journey, I can look back and see what was being done.

We don’t have to tell people what we are doing, but sometimes people are in vulnerable places that they need others to help out, and be an invisible source of protection that helps them to carry on.

Overwhelmed

Do you ever have moments when you are just taken aback by something? That might be the beauty of things around you, or the actions of people, or even just something that you read. I’ve had two things that have taken me aback this week, and that really made me stop and think about how blessed I am.

The first was receiving some feedback from pupils at school. I will be honest and say that they are a pretty awesome group anyway, but to receive comments that confirm what you are doing, and the appreciation of it… especially from teenagers… well, it just just filled me with a bit of a warm glow and made me realise the importance of what I’m doing – it is worth while after all!!!

As wonderful as that was, thing number two was the thing that really did overwhelm me… which it possibly shouldn’t have done… but it did!

Yesterday I had to fill out a questionnaire for an assessment I had. Part of this questionnaire was to say how my ‘problems’ – my low mood over the last few months – has affected my ability to perform in 5 different areas. Those areas being work, housekeeping, public recreation, private recreation, relationships. For each one I had to give a mark out of 8 with 8 being completely affected.

I gave the lowest mark to relationships. Within this category it referred to making and keeping friendships. Now, during this time I didn’t make friends but had no need to, and I kept friendships – hence I gave it such a low mark. Or should I say, my friends stuck by when I was being a sulky, silent, crying, angry, a?!y, wreck.

This is why I was overwhelmed because as I look back I really don’t know how, or why they put up with me. However, I also know I shouldn’t be surprised, because as a friend said today when I thanked her for being there ‘that’s what friends do’! And I just want to say thank you to those who have been that support when you must have wanted to walk!

I’m overwhelmed by the people I am blessed with in my life, I am also grateful to be finding things to be overwhelmed by again in my life! I’m going to be looking out for the overwhelming and I hope and pray you find some too!

Good to be back

I’m sitting on a train on my way back from a couple of nights in Brum with my mum. Reactions from people to me on this visit have made me realise I need to write a blog that has been on my mind for the last week.

What kind of reactions from people?

‘You’re looking much better’

‘You could tell the difference as soon as you walked in the door’

‘You seem to be back to yourself’

I was last in Birmingham 4 weeks ago and I think it is fair say that I was depressed. This will probably come as no shock to people who regularly read my blogs! This had been the case for months. I felt low most of the time, I was barely eating, I was crying at least daily, and I was struggling with any social aspect of life at all. I was surviving. I coped with my job but that was about it. Just before going to Brum 4 weeks ago I had seen my consultant, whilst we were there the husband had said a sentence which hit me in the heart like an arrow ‘I just want my wife back’.

That appointment was a Turing point. My consultant, after I broke down on him, agreed that I needed to come off one of my medications as this was causing the depression and the lack of appetite.

It’s important to note here, I had always been prone to low days, but I had always been able to do the social stuff on top and it had never lasted months like this had – which is why I was convinced it was the medication.

It’s been a bit of a rocky few weeks as I have been in the process of coming off one med and going on to another (therefore not fully on either and there may been some seizures and some twitching) BUT gradually I have seen and felt what I recognise as ‘me’ return – and it has been good!

I try not to focus too much on the past, and what I used to be, or what I’m going to be. I try, to live in the present. So, why so much joy and focus on the return of ‘me’?

I think what it is, is a comfort. It is like I have come home. In the same way as I walked into my parents house a couple of days ago and just felt at home. No airs and graces, no special effort, helping myself to drinks etc… it feels like that. I’ve had at least 6 months of everyday, if I had the energy, I had to put on a show to be vaguely human. Most days it was easier to hide, but even then I didn’t feel comfortable with me either.

So to now feel happy as ‘me’ and to want to think about the future and perhaps most shocking – meeting up with people is… well…like the biggest comfort blanket EVER!

I don’t think I am the same person I was before and I’m not trying to be – that’s possibly the greatest thing is that I’m not trying – BUT I really have learnt from the last year – what have I learnt

• I have been AMAZED by the support of so many people,

• I have learnt the importance of not trying to do anything in my own strength

• I have learnt the importance of not trying to overdo things and to stop or say no when needed

• I have learnt how important routine and work are for me

• Ihave learnt that this is yet another part of the journey, and I don’t think this stretch is even over yet!

What now?

• Continue to live in the moment and take each day as it comes whilst we still get the message finalised.

• Try not to overdo stuff just because I’m feeling better.

• Continue to be grateful for all my friends, family, and colleagues who have shown so much love and support.

• Continue to be grateful that I have been able to survive and work which, so easily, could not have been the case.

• Be grateful that it was caused by medication and we seem to be seeing an end – I know so many others for whom this is their life.

• Thank God for all of the above, and for being my constant source of strength, hope and love!

I’m looking forward to looking forward!

Making the most

Do you ever get the impression there’s a message you’re meant to hear? For me, this weekend, it was… make the most of it…whether that’s time we have or things we have or situations we’re in… make the most of it.

I’ve been in a frame of mind recently where I have been focussing on how things were, or what I would like things to be, or how I’m going to get out of the mind frame I’m in. So I guess, if I were to believe in getting messages like that then I could easily understand why that would be the message I was getting.

The one time I heard it that has been coming back to the front of my mind was from E. There was on point when I was feeling particularly low and E messaged saying ‘I don’t know the answer but you have to trust that things will get better, but when that’s difficult, know that others are still trusting for you’

Why did this mean so much? Purely because I think I probably had forgotten it! I’d got so caught up in what I was missing, or what I wanted to be, that I had forgotten about the support I had, and was also missing out on what was happening.

I have no answer and am not really out of that frame of mind but the regular reminder of the words of E are helping me to focus more on enjoying what I can of the situation I’m in at the moment… which in turn is making me think about changes I can make which will help when the brain clears up a bit.

It’s so easy to focus on what we want to be, but so often it takes us away from where we’re at and we miss opportunities to make the most of!

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!