Category Archives: Me

Still time to talk

Last Thursday marked ‘Time to Talk’ day. For some time beforehand I had told myself that it would be a good day to blog again to get people up to speed with my own health.

Then, because of my own health, I was not up to it on the day. Yep.

And, because of my own health, it has taken a disproportionate length of time to get this done at all. Ah, yep.

You may not be bothered about reading about mental health, or interested in why I behave the way I do these days. Please don’t feel any obligation to read on. I am not fishing for sympathy or even trying to make excuses. I would like to put down my thoughts on this blog, however; it is a difficult subject to bring up and worthy of some attention. Mental ill health is an invisible condition.

invisible_illness_liquid_poster-rd3d4bb10a67a40df881c4628c2d19524_wzz_8byvr_324

Since I got very ill in 2013, I have learned that I fail if I rush. I fail if I push myself too far. I fail if I get in a cycle of negative thoughts, eating habits or lack of discipline. I succeed only if I carefully pace life, keeping at things, finding the positives, respecting myself and living by faith, so it is still worth putting this blog post up even on the wrong day. Especially on the wrong day.

Every day can be a wrong day when you battle with the non-newtonian fluid that is time with a cloudy mind. I have no idea what day it is normally; it isn’t so important if you can’t juggle more than one thing well. To counter this I have lists and routines to ensure children are fed, dressed and delivered to and collected from school or clubs. Not knowing the day is like a mist that many of us experience when we’re busy. This state however is what my own mind is like most of the time. A dense fog. It’s out there, but I don’t know where to look – when I cannot see where I am going, I go to autopilot for many tasks. I cannot see where I have been either, as my memory is very patchy.

multiple-sclerosis-with-brain-fog

I make an effort to make myself remember things, but you may see me struggle to recall something from last week, last year or childhood, which may then suddenly come back into my head days later with real clarity.

That can be frustrating, unless I see it for what it is and allow myself longer to remember things; I only hope I’m not called up in court to tell ‘the truth, the whole truth and nothing but the truth’ when what is available to me is ‘the whole truth as I perceive it today, although there may be more I cannot yet access’. When I’m on a roll with an activity or in the zone mentally on a specific project I can sometimes stay focussed for far longer than usual, but as soon as I stop, that’s it. Gone. At other times I struggle to concentrate on a TV programme or a film or a book I’m reading. I don’t know why this is.

So when I do push myself too far, what does ‘failure’ mean? When my mind clouds or my memory or plans don’t make sense, that is. It is a sense of being lost, but it is also a lack of being able to function or be present in the moment. It is as if large parts of my mind are frozen. I can see tasks all around me but not only can I not arrange which order to do them in, but I cannot see how to do any given one. I have to reduce my focus intentionally and heavily against the flow of my wandering mind to one specific activity, and then hope and pray nothing comes along to throw me off. As I have a naturally divergent mind this can be quite draining mentally. If I am low emotionally it just costs too many spoons to achieve much in a day.

spoons

My daily spoon allowance is probably around 20 going by the chart here (which is not entirely accurate for me, but gives a general idea). My limits are nothing like as serious as dealing with the effects of ME, fybromyalgia or any of many other invisible illnesses, but it is real. If I give you my time, I will honestly think it is worthwhile doing so. If I don’t, it may well be down to self-preservation.

As an introvert, I love people, but I just don’t always love being around them. Being with people saps my mental resources very quickly. When I am very ill I cannot be around even my immediate family until I’ve recharged (currently this happens at least twice a day), and being in groups pays a very heavy toll; I need to make time to be alone on my own terms for several hours if I have had to be around a large group or in a space where I could not get away from people. This limits going into town, social events, sports, potential work situations and affects the rate at which I can do voluntary activities.

I get anxious internally, panicky and confused. Really confused. I may mess about or be facetious just to manage to remain in a place with others. Or I might hold one of my children close so that I don’t need to take responsibility for anything I can’t focus on. I forget things and my mind needs stimulus without saturation – so I find my foot tapping or my fingers moving about. I start to believe that I am not capable or that my slow pace of progress on tasks will mean I cannot achieve good things without a lot of support. The idea of making a phone call fills me with dread; even answering one can take a spoon or two from that day. I remind myself that I used to be a high-achiever and try not to blame myself for the slow going I find in my life today. I am writing a book. Even aside from the regular discipline needed for writing, I am having to be kind to myself when other things crowd in and use up the resources I have on any given day. Perhaps this will change in time, but until then I have to be content with baby steps and finding purpose and affirmation instead in the trivial and mundane activities I do at home or the exciting and useful things I do at church or out and about.

When I burned out nearly four years ago I was able to access counselling which was wonderful for talking over areas of my life that had caused hurt and working through some irrational thinking patterns. This has helped enormously. However, despite the counselling, and despite loving friends and family, an understanding doctor and appropriate medication (I tried to live without it for a year and am now back on it), I have realised that my mental health may be something which colours a huge amount of what I do. Where I was once highly attentive, I am frequently now oblivious. Where I was able to focus, I find I get overly tense and exhausted easily. I open many tabs in my mind (and on my computer) so that I can feel some sense of accomplishment, but do not finish all the tasks and forget what I am trying to do when I have to go off and collect the children or cook or see to the pets. As a result I start lots of ideas and struggle to maintain them.

I survive on cups of tea, on kind words, on prayer, on the promise of a book to come, on incremental improvements, on medication and on each of life’s many joys.

In the fog, joyful events and sad moments can each come as surprises. But I can also lose the sad moments more quickly as they get forgotten, and enjoy what is good by focusing hard on them and planning good things which will come around and surprise me.

The experience is like walking by trust with little sight, unaware of quite how the next chapter is going to unfold. It is not an experience I would have chosen, or would want to remain in any longer than I need to, but it is familiar now and I can work with it.

fog

(photo by Ian Furst)

 

Don’t stand on the baby!

Anyone who has had children will have stories to tell about scrapes they have got into. The summer before last, my son Joe had a nasty fall. He had been playing in the garden, ran in without looking and cut his eyebrow quite deeply on the corner of a chair. He was in some pain but his screams shook the panic out of me as I had to calculate how to comfort him, how to get to A&E, where to take his sister and what to do about the injury.

I am a mum, so I got on with it. I even took photos. Even as my adrenaline kicked me into auto-pilot TLC I wished that I knew more about what to do. Some years beforehand I vaguely remembered having completed a couple of basic first aid courses, but this was real and immediate, the blood was actually dark and runny and horrifying; in the event my mummy-brain just gave up so I put on a brave face, ticked the boxes the best I could and tried not to blame myself too much.

In due course at A&E Joe was seen by some wonderful nurses and glued back together; today his scar has silvered and hardly shows. But I see it whenever he snuggles in close. For me it’s a reminder of when I didn’t know what to do to help my child.

 

Right now of course he’s fine and I’m so glad he’s over his little adventure safely.

I’m also pleased that I have a much better knowledge of first aid. It took me a while, but this week I got around to it, by attending a Mini First Aid course run by Ruth Wilson. Ruth is a friend of mine, so I set aside my fears and excuses and agreed to come along in order to learn more and to blog about what she does. Ruth has lots of experience in nursing, health visiting (the ‘good sort’) and child-minding, as well as having five children. She is calm and encouraging, conveying lots of useful and practical information in a thoughtful and interesting way, with plenty of humour in the mix.

You need humour if you’re going to learn about injuries. I don’t think I’d ever before been taught:

 

“don’t stand on the baby!”

…but then I don’t think Ruth had ever had to teach that before either. I do have a knack of bringing up rather ridiculous ideas and questions. It helps me remember.

(For the record, it is acceptable to stem blood flow from an open artery in order to save a limb by applying your full weight to a pressure point. I can picture a small medic standing on a big patient for this purpose. Not so good, however, for adults treating babies.)

Sbaby-and-child-first-aidome first aid may seem obvious of course. But what about the correct equipment for a home first aid kit, or where you should really keep it? I have not got any hypoallergenic plasters for visitors; that was a take home action point for me. And I took my car first aid kit out years ago and haven’t replaced it. Oops. I do have an app on my phone (Red Cross) since Joe fell, except I haven’t really studied how it works.

I guess most of us would think we have a basic knowledge of first aid. I can summon up the recovery position. Also, I do know what to do for a nose bleed and where I keep disinfectant (certainly) and safety pins (probably). But, for all the half-remembered ideas in my head about what to do in the event of an emergency and why I might even need safety pins, I have to admit I was lacking crucial knowledge and skills. How many of us are up to speed on what to do in the event of choking, burns, broken bones or shock? Once I’d stopped and thought about it I realised there’s not much of an excuse, really. Courses are widely available now and Ruth’s 2 hour mini first aid course is only £20, which is very reasonable. There are others, but the format of this one, which included her baby and child props for CPR and other procedures was very well thought through and friendly, with nine of us meeting in a church creche room.

tintin

Not the real Tintin

Many, or perhaps most of my friends raise children or work with children. Even others, including teenagers and grandparents babysit. Adults runs clubs, groups and events for children and at these times most of us probably hope that someone else is the qualified first aider. Like me, you may not enjoy dealing with blood. But we also host other people’s children in our homes, mind our nephews and nieces, and are the responsible adults for those who live in our homes for a huge amount of their time. The times when they climb a bit too far, times when they spill hot drinks, times when they run into walls or trip and bang their heads.

tap-on-the-head_tintin_870

Or have their heads banged for them.

The others in the group seemed very keen to take lots of notes, but I wanted to remember everything I could. There was a lot to take in, and the course notes to take away did help, as well as being able to ask all sorts of sensible (and less sensible) questions. I’m now far more confident about when I would take a child to a doctor or to A&E and what order to do things in, in an emergency. I hope I never have to use CPR, but now I feel like I would be able to give it my best shot.

And God willing, I don’t have to rush Joe to hospital again with another nasty cut. But if I did, this time I’d know about applying pressure to it.

Rather than telling you all the other things I learned and revised, I encourage you to make time to do a first aid course yourself if you haven’t done one recently. Mini First Aid have courses around the UK, if you find yourself looking after little ones.

And, whatever you do, please don’t stand on the baby.

 

Mum…

I turn in my car seat and look at Joe. He is six and a half now, and one furtive ‘big tooth’ is pushing up behind his first wobbly incisor. His hair is a mousy scruff and his eyes curious.

‘Er, mum……’

‘Yes, Joe?’

‘Well, do you think, ink, think, um, do you think…’

‘Yes Joe? [spit it out, boy!]’

I turn back in my seat.

‘I have to keep driving, Joe. What do I think?’

‘Joe?’

‘Joe, you were asking me a question, what do you want to know?’

‘Oh yes, I know. Mum, do you think, ink, um… what’s that thing again?’

‘What thing?’

‘Do you think I have that thing?’

‘What thing Joe?’

He turns to the window and starts doodling on the glass with his fingers.

‘Joe?’

‘Joe, are you listening?’

He clearly isn’t.

‘Er, mum, do you think I have that thing, ing, that thing?’

‘What thing, mister?’

‘That thing where you get really, um, distracted*?’

‘Mum?’

‘Well, that’s hard to say Joe. I didn’t use to think that… ‘

Hmm. So now I need to investigate whether his levels of distraction are beyond the typical for his age. When I can get around to it, I mean. It’s most likely genetic in any case probably.

*He cannot pronounce ‘distracted’ and most likely said ‘extracted’, for what it’s worth. Other Joeisms include sumbarines, dymanics, and his favourite grace: ‘Ear God, Thank You For Our Food And AMEN’.

I should think he’s well in the running to be president some day.

 

Doing Something

Maybe like me you have come across many articles and posts about depression and anxiety and wondered why those affected seem to need to write about it so much. Disproportionately, almost. I was giving this some thought.

blanket

Some of us need to write to make sense of things in our heads, and feel better if we can share with others who affirm us. Some of us are lonely and want to connect with the outside world. Some of us feel that as depression and anxiety are fairly invisible, that the internet is a safe way of raising the topic and that Doing Something is helpful, even if it means someone else who is suffering learns that they are not alone and that there is Hope Somewhere. For some, it is a way of explaining behaviours we are not proud of: isolating, self-absorbing behaviours or irritability and moodiness. We are not happy with living like this and want to give some reasons for it. We crave unconditional affection regardless of where we are, knowing that that is part of the key to healing. We don’t mind accountability if it means moving out of the darkness. The little black puppy nipping at our heels for the past few months has grown into a beast which controls us, and we just want someone to help us put it on a lead, walk it with us through the journey ahead and learn how to live despite it.

And as I was thinking about how isolating it can be to feel depressed, which is a place I have found myself in again recently, I realised how similar the experiences of lonely older people can be. I was in the shop in the village with the children this week, chatting about jam or bread or something trivial, and one of them got in the way of an elderly lady. This is a typical event for our family, and as usual I apologised to the lady, but I made a point of making eye contact, though that doesn’t come easily to me. I recognised her isolation and felt a connection, so I smiled. She smiled back and commented on our jam (or bread, or whatever we were talking about) and we exchanged a couple of sentences. For me, they were two or three of the hundreds of lines of dialogue I had had that day. For her, perhaps they were far more significant.

When I see someone on their own in the shop, especially an older person, I am not going to get upset with the children for getting in their way. Instead, I can use the opportunity to smile and perhaps talk with them briefly, lessening their isolation to a degree and showing the children how to tackle loneliness. Because being depressed doesn’t make you less sensitive to others’ needs; if anything I find I am far more sensitive and concerned. It means I need time sometimes to absorb, to process, to live. It also means I want to help out, in whatever way I realistically can. And taking little steps to connect means training that black dog, taming him, taking him in hand.

doglead

 

Tact and the Real Message

“I know how you’re feeling,” came a voice from somewhere close, “and I do feel really sorry for you.”

And my heart grew and I forgave her words because she is my daughter and this is her best. They were not hollow words spoken with an adult’s urgency to fix or with undertones of self-interest. She has little idea of nuance and tact.

So when she says ‘I know how you’re feeling’ she honestly believes she does. Perhaps she does have a sense of the colour of depression or the pain of its bite. I pray she does not know the full injury of it in her lifetime, or at the very least in her childhood. Oh little one, I sincerely hope you do not know how I am feeling.

dunelmbed

What touched me enormously was that she would even try to comfort me with words, though her pity was not what she was really trying to convey. The message I heard loud and clear was “I love you mummy”, which actually was the message I really needed to hear.

Messengers get shot frequently by those bitten by depression. In recent years I have learned to listen to the message behind the message. It’s not about the most well-chosen words, though for me at least they often bring the best relief. It’s not about connecting either, though finding common ground can bring hope and joy; I’m no longer journeying alone on this day. ‘I do feel really sorry for you’ can mean so much more than ‘I recognise your struggle and I hate it too and I hate that you have this fight on your hands and I pity you’. No, the act of being present, of communicating at all – in some age-appropriate manner, this is what brings light to my heart and salve to the bite-marks. My son spends time on my lap. My husband quietly washes up. My daughter tells me she knows how I am feeling.

And I stand back from my heart and marvel that God would bless me so much, whispering his love to me in so many ways each day – using even children so honest because of their lack of tact – and I give him my griefs and my deepest aches, because he is strong enough to carry them all. And though I crave tact and good words, I crave the real message more now and I pray my words too will speak love and that that love will be heard.

 

What now?

Where’s your treasure?

Your treasure is where your heart is. So said Jesus, as well as Albus Dumbledore. You steer towards the things you value. You invest in what means the most to you. For many of us it is our status, our children, our belongings, our future. For some it is a higher cause or service of those who need our help. For me as a Christian my investments only really matter if they have an eternal dimension. ‘Don’t store up treasures on earth,’ Jesus says, ‘store up for yourselves treasures in heaven.’ In heaven there is no decay, no stealing.

Some of my friends stand to lose a lot financially because of last Friday’s Brexit result. Houses aren’t selling as quickly while people wait to see if the values drop. Markets are volatile. Prices are looking to rise. The pound won’t buy as much abroad. Shares and stocks are dropping. If these things are our true treasure, we will despair. It’s evidenced loudly on social media and the indignation is catching.

Our treasure is never going to be worth much if it is in stuff. Stuff is only ever secondary in the big scheme. Love comes first.

Some of my friends stand to lose a lot of dignity because of their race or perceived race. Now in my late 30s, I belong to a generation where I genuinely have to stop and think whether someone is racially ‘different’ from me and colour is an odd concept. So many of my good friends are truly international and I wouldn’t have it any other way. There are groups of people using 52% as a mandate to behave in shockingly racist ways. But there is a backlash of people standing up and rejecting that, which is encouraging. My Divided Kingdom is far more outward looking than last week’s result implies.

Our dignity is at stake if others belittle us or when we allow our brothers and sisters to be belittled. Let’s resist the indignities and celebrate our diversity and the value of each and every one. Our true value can only be found intrinsically; we are created, loved and given purpose by an Almighty God who cares about us. Love comes first.

Some of my friends in the arts, higher education and sciences stand to lose out when EU grants do not come their way in the future.

We will need to be imaginative. We will need to wait longer for some things: good things too. We will need to be humble. We will need to ask questions and find ways to continue working hard, co-operating and pushing boundaries. Love comes first.

Some of my friends in parts of the UK where a lot of EU money is spent stand to lose out when cuts impact on their services and options for improvements or subsidies.

Some of the rest of us will need to see more austerity measures as a result. Love comes first.

Some of my friends who voted Leave feel that the campaign was disingenuous and that they have been lied to. Those who voted Remain are grumbling that the exercise was not even necessary.

There have always been liars and gamblers. Self-interested greedy people and those unaware of the consequences of their actions. There always will be. Neither the Leave nor Remain side behaved well in the campaigning. And, as a nation we have failed to counter ‘free press’ with wholesome PR on what has gone well in the past. We have given politics a bad name and mocked Europe unfairly. Some of the consequences will, no doubt, wake up some of the Leave voters to what they signed up for. But are we surprised we were lied to? That the facts were complicated and not presented fairly? That a binary decision given to a hurting country would not be used by masses of those who felt marginalised to try and shock their leaders (at any cost)? What’s done is done. The grumbling will go on and the memes will echo around the internet, but we don’t need to remain miserable. Love comes first.

Some of my friends felt like they had no voice and no power. They voted to try and change that.

We need to listen to the hurting voiceless millions. Love comes first.

Alongside the memes, the anger and the confusion following the UK’s decision to leave the EU, I’m aware of a lot of worry. Uncertainty leads to volatility and panic.

Or at least, it can.

It’s not the only way.

I have spent a lot of time in the past few years finding ways to address anxiety and fear. Even rational fear needs looking at from time to time. So my reaction to Brexit includes anger, sadness and disappointment. But it does not include a great deal of worry.

Because worry is not the only thing we can do.

The opposite of worry is Trust. Trust means we have a leader. Trust means the leader is actually in charge and actually has a plan. Trust means we know there are storms coming, but we can weather them, because the leader already has a port ready for us. I know this is true because my leader has never failed me through all my own storms and through the lives and stories of countless others I know who have been through storms large and small. It is tried and tested. I know it is true right through my being: heart, head and soul. Trust takes the anxiety out of the days ahead.

Don’t be anxious. If you want to know more about Trust there are many ways to find out. Ask in your local church. Ask your Christian friends. Ask discreetly. Ask God directly.

You know, I voted Remain but I can see that we need to pull together as a country to make Leave work. And you know why?

Because Love comes first.

Grief stinks

The day after Ascension, who grieved?

It is a very odd part of faith, the ascension. We don’t focus on it a lot in my tradition; the date falls on Thursdays. Jesus, killed on a cross on a Friday during Passover. Raised from the dead on the Sunday, marking a new celebration day in the week. A new first day. Then multiple appearances in various locations, to numerous doubters and followers. He sat and ate with them. Talked and explained. Listened and loved the lost and the confused. Those close to him were convinced that he was indeed alive.

Just like the 40 days in the desert before his ministry years began, there were 40 days in which this post-resurrection Jesus continued to baffle and bookend. Unfettered by any human control, he chose who to present himself to. He did not intend to take Israel as his kingdom by force or to oust the Romans. Instead he repeats his earliest message: the kingdom of God. The proximity! The invitation!

The kingdom of God demands an engagement with Someone and a relinquishing of Self in order to be fully Alive. It turns one’s heart’s desires from self-promotion to praise of God. And in that moment the wonderful realisation of knowing what it truly means to be Loved. Human love is just a shadow of this Love.

These turners, these followers, these men and women baffled and bruised by life choose Love. They are the start of something, but they are not enough on their own. They need a spiritual encounter and a promise of help and strength.

ascension01So God does the unimaginable – again. He separates. From day one he had been separating light and darkness. Now he separates from those who turned to follow him. A significant separation of a physical body with limits, before a spiritual meeting with his followers. The practicalities are not even that important. An ascent – lots of witnesses – and a junction in the story.

I would have grieved. Something had happened and Someone had gone ahead, calling others to follow. I would have grieved the distance and the unknowns. I would have grieved the mess remaining and the masses of unrepentant folk. I would have grieved the stench of life Without. (I would have had hope too – my eyes lifted from the past to the future and from the sticky hell of earth to the hope of heaven. But I would have grieved.)

And grief remains in our world in the mess. I didn’t know any of the celebrities who died in the past year, but I grieve at the end of opportunities, creativity, laughter. I think many of us do. The separation is out of our control and we don’t want it.

weight of grief

Two months ago my granny died.

I don’t want the separation and the emptiness when I return to her home. I don’t want the grief, though it tears through me. She was a war-time evacuee. A left-hander in the wrong era. A girl who thought her mum was her sister – raised by her granny in Notting Hill and ignored by her father. She lived most of her life in Devon and I rarely saw her out of the county. She was stubborn. Hard work. Kind, but firm and she didn’t suffer fools. Forged in her generation with scars and dashed dreams of her own, you needed to meet her on her terms, which was hard. She had a strange sense of humour. One time, for a surprise, she arranged a tour for me of the local sewage works. She had been a model. A cinema owner. A mum. She was brave, and witty, and under-educated.

But now she is dead and next week I return to Devon to sort through her clothes with my mum. A task of turning and of separating and of grieving.

I think it is ok to grieve. Even the painful things. Our hearts expect it.

I think it was ok for the followers to grieve, following Jesus’ Ascension. Things had changed.

When something changes and we feel the weight of separation we long to express that. For some it means retracing and recalling. For others it is far more private. Grief is heavy and the price is high – the BBC are saying today that broken hearts are a real thing.

But, after grief? After the initial rush of emotions? Once the pain has become more calm?

This is where Hope lives. And the Ascension gives me Hope.

granny

I can hope to meet my granny again. She shared my faith and she lives and I will see her and talk with her again. I can place my hope in God, though I hate the separation of death. He lives and he is not controlled by death or by physical limits. I can hope for good things and know that there is more than the mess and the stink of grief and separation. There is a kingdom I am part of and my eyes are fixed on Jesus.