Pied Beauty

GLORY be to God for dappled things—
For skies of couple-colour as a brinded cow;
For rose-moles all in stipple upon trout that swim;
Fresh-firecoal chestnut-falls; finches’ wings;
Landscape plotted and pieced—fold, fallow, and plough;	5
And áll trádes, their gear and tackle and trim.
All things counter, original, spare, strange;
Whatever is fickle, freckled (who knows how?)
With swift, slow; sweet, sour; adazzle, dim;
He fathers-forth whose beauty is past change:	10
Praise him.

Gerald Manley Hopkins

Someone had posted it in the comments section of a blog I read and I thought it was an absolutely awesome poem, so visual and tangible and so true. I simply had to repost it.

Ten years. ish

Around now it is my tenth anniversary, of having ME, not something I'm desperate to celebrate. But I wanted to mark it somehow.

Don't have a lot else to say, what is there to say? Without falling into self pity anyhow.

Watching from the side lines

Like most of the country and no doubt plenty of others around the world I've been watching the latest political developments with tremendous interest, although a twinge of sadness and regret. In a previous life I worked in politics, for more than two years, first part time then full time and I loved it, although I did decided by the end of it that being an MP wasn't for me.

However, since then I've become too ill to work full stop, let alone in a high pressure, fast moving environment like politics. Prior to the past few days I was largely ok with this, I didn't pay any particular attention to politics, just skimmed along the surface. Now I'm feeling it badly, the "if only"s have been taunting me so strongly today, especially the knowledge of where former colleagues are working and that it could have been me, I could have been there at the heart of it, rather than sitting at home watching, in between naps.

It has brought back that I still have a lot to mourn and that I need to stop living in the past. The past is far more attractive than the present and possibly the future. I am trying to remember that God is in control and that He knows our future and our lives, my life, is in His hands, that He knows His plans for me. I am trying to remember where to put my hopes and that there are more important things than politics. Still it is hard.

My only other observation is that hearing constant talk of a "referendum on AV" has been somewhat confusing at times, leaving me wondering why we would need a referendum on the KJV Bible...

Today I had a go at sewing thanks to my friend Fran, I simply had to show off the results, it's only a few straight lines, but it's a start. Next I'm hoping to try a Clothkits bag kit, once I've done some more practising. Here goes...

Grace and ungrace

Increasingly lately I've received the distinct impression that pretty much everybody I know is simply too busy to have any time for me. I'm honestly not saying that out of self-pity or to guilt-trip people into spending time with me, it's not attention seeking, it's just an observation. Everyone is very busy, with jobs, spouses, friends, boyfriends/girlfriends, hobbies, holidays, the daily stuff of living. Meanwhile I find that as a single sick person I'm low down on everyone's agendas, which is understandable in a way. I'm too tired most of the time to go to most of the big events where people meet up such as weddings, church meetings and services and parties, and it takes a lot of commitment to go and see a person, a lot of time and time is something everyone seems short of.

Having said that it does make me sad to be alone so much. I start to wonder if I really have anything to offer anybody, if I'm boring to be with, do I moan too much. Part of it is the illness, I can't see people too often anyway because it's too tiring, but just sometimes it would be nice to have something sociable and fun to write down in my diary, not just another medical appointment. Some social event I can manage, something on my terms, that meets my needs (selfish as I know that sounds) not having to fit in around other people's schedules and needs. I remember at Durham someone suggesting we meet for breakfast for half an hour at 8 am (due to the drugs I have to take I'm really not a morning person) because she couldn't fit me in at any other time, literally for weeks to come. Knowing that you are that unimportant to your "friends" doesn't exactly do a lot for the self esteem or for feeling valued.

When I mentioned some of this to my therapist, how my friends never seem to have time for me, she asked if these people really were friends, if they behave like this, which I will admit set me thinking. I'm certainly not about to flounce off in a huff and cut myself off from everyone who doesn't have time for me - I wouldn't have many friends or even acquaintances left if I did - and also because I do understand that life can be very busy and that I feel the gap more because I have so little happening in my life.

Instead I am trying to control the part of this situation that I can control - how I react to the situation, to my friends. Sometimes this involves setting aside how I feel and reaching out to friends with grace, sending a short message of support and love, rather than holding onto resentment and anger about not hearing from them. There's enough "ungrace" in this world; I don't want to add to it. Before I come across as some plaster saint I should say that this is often the utter opposite of what I want to do or say - it is only by the grace of God that I can do this, His Spirit in me.

I long for some fellowship and refreshment, someone (or some people) to share the journey with, in a way I can really join in with. I would love to be able to give as well as receive too, to encourage others, listen, be there for someone, feel of value in the body of Christ. But I'm too tired to go to the meetings or do much. I suppose I'll just keep praying and be glad that Jesus doesn't have such a busy schedule or require you to attend meetings in order to spend time with Him.

As I said earlier, I'm honestly not trying to guilt-trip anyone, just express how I feel, I've got to somehow or I'll go mad.

Bits and bobs

I've spent the past few weeks mostly recovering from the benefits appeal, which mercifully I won. But it was a huge trauma and stress, I'm only just sleeping properly after it. It is deeply invidious that the system should be so skewed against the sick.

On a brighter note I've continued pursuing the domestic arts. It makes sense really, I'm home so much, at most I'm out two hours a day; homely things like baking bread and knitting make sense as occupations. Baking bread is tiring, but rewarding and interesting, I've been reading Elizabeth David's English Bread and Yeast Cookery, a work I highly recommend if you are at all interested in baking your own bread. In it she explores the history of bread making and all the technical details, before going on to provide comprehensive recipes that work well. Although I have only really dipped in and out of it (it is an immense work) it is an entertaining read, Elizabeth David was not just passionate about food but crucially was a superb writer. She leaves one in no doubt as to her opinions. Illustrated here is my first attempt at a Coburg loaf, which is apparently just like a cob loaf, but for the cross cut on top.

With the onset of spring my annual enthusiasm for gardening has returned and this week Dad did all the hard work and I put some spinach, baby cos lettuce and tomato seeds in some pots. The cos lettuce leaves have already sprouted and together with the baby spinach leaves should provide some interesting lunchtime salads. Our pond goes from strength to strength, being currently full of tadpoles; it resembles a bustling city, the surface of the water constantly aquiver. The fish seem remarkably unconcerned by their little companions nor by the newt who we spotted in there this week.

Knitting takes up most of my time and energy, but I would like to have a go at some sewing, hopefully this coming week I'll manage to prise myself away from the knitting needles. Overall things are very quiet, lonely at times. I've managed to get to church group a few times lately, they're a lovely group of people, all my friends are lovely people, just far too busy. I suppose it's no fault of theirs, but it does leave me on my own the vast majority of the time and I can't remember when I last met up with a friend except at church group or knitting group, which is just a bit depressing.

Still got to keep my pecker up I suppose, could be worse? Or something like that! While we're on the subject of good attitude I'd recommend reading Kate Davies' blog Needled - a lecturer in 18th century fashion and social history she recently had a stroke and her account of recovery has been amazing. Every doctor ought to read it as an account of what it feels like to have a stroke (or indeed any other sudden change of circumstance and health). She writes with humour and grace and although the word 'inspiring' can be somewhat overused in this case it is in way hyperbolic. She also makes gorgeous knits such as the famous (in the knitting world!) Owls jumper and the photography is brilliant. Over and out for now, hopefully I'll update this more frequently, who knows.

Again it's been a long time since I last blogged, I must get into more of a habit of it. Life has been hectic lately, at least by my standards, lots of appointments with doctors, nurses, therapist, legal advisors etc. caused partly by a rather nasty infection and partly by my benefits appeal, which is next Thursday.

Next Thursday at 4pm hangs over me like a dread weight, a little like the anvil waiting to drop like in an old fashioned cartoon. Having to justify myself and defend why I need incapacity benefit and how I'm ill enough is horrible, I hate having to do it. I hate the 'game playing' that becomes involved and the need to bend the truth to fit their guidelines. I hate the rigidity of their system that makes no account of the things that really affect my ability to work - like how tired I am every day, day in day out. The 'fatigue' is what stops me from doing so much I long to do but I struggle to communicate this to the professionals who are trying to help (or hinder as their role entails...). Increasingly I'm being asked what job I want to do, am I going to continue any study, work related activities, volunteering and all the rest. But I don't currently have the energy to get a hair cut, or see my friends, or even go to church group, so where am I going to get the energy to do all these other things?

I am trying to trust God, because I know all things are in his hands, but I am struggling. I don't even know if the benefits are part of his provision for me or if he has some other plan. Another point of the benefits appeal that worries me is the truth; I've been told what to say - but some of it isn't 100% true, or is a blurring of the truth or being economical with it. To some extent some of this can't be helped - a system that judges you fit for work if you can watch tv for 30 minutes and follow what is happening means that sometimes you do need to be careful what you say. Some of this is also remembering what a worst day is like and talking about that, which is something I'm very bad at, I'm used to playing down how awful I feel, so this is all very counter-intuitive. But I do not want to lie outright, because as a follower of Jesus I want to be honest.

After I had been thinking about this yesterday I read that day's entry in Spurgeon's Faith's Chequebook and the words seemed to spring out of the page at me:

Let the reader never for a moment attempt to help himself out of a difficulty by a falsehood or by a questionable act; but let him keep in the middle of the high road of truth and integrity, and he will be following the best possible course. In our lives we must never practice circular sailing nor dream of shuffling. Be just and fear not. Follow Jesus and heed no evil consequences. If the worst of ills could be avoided by wrongdoing, we should, in the very attempt, have fallen into an evil worse than any other ill could be. God's way must be the very best way. Follow it though men think you a fool, and you will be truly wise.

So I'm doing my best to prepare, praying, trying to trust, trying not to go to pieces completely. These benefits have such a negative impact on my mental health, which is infuriating because I was just beginning to feel like I was getting somewhere with the CBT, beginning to feel more positive about myself, feeling pleased that I finally felt like I was recovering from the depression.

I don't know if I want to win this appeal, although it would bring a little bit of money into my life, which wouldn't be unwelcome, but it would also bring back all the 'pathways to work' interviews and extra demands. Additionally there is talk of how I should be applying for more benefits, including Disability Living Allowance, which I can't stand even to think about. It makes me feel like life isn't worth living, what's the point in all this? The sheer amount of stress, on top of feeling so ill makes life seem very unappealing. This is so bad for my mental health, the DWP make me feel worthless, guilty, useless and a fraud on a number of different levels (for example, for being able to knit and knitting so much). I hate this system, it feels like being kicked when you are down.

I feel like such a wimp making all this fuss.