Helpless but not hopeless

It has been so long since I wrote my blog that I can't recall how to post on it any more. But on the eve of Real Life restarting in 2011, I thought it was possibly time to try again.

2010 was like battling through a raging storm. It became harder and harder to move forward, so more and more luggage was set down along the way. Writing felt like a luxury too painful to indulge in, so it was set aside in favour of getting one foot to move in front of the other. I don't mean to overly dramatise the difficulties we have faced, I know there is still a very long way to fall and so much precious to lose before reaching the dark depths life has the potential to take us to. I count my blessings religiously, like a mantra. But, yeah, 2010 was a rough, tough walk.

I am also determined to place no significance on the turning of the year. Nothing has changed, nothing improved, nothing got worse on January first. 2011 could be as bad, much better or infinitely worse. It doesn't matter – one foot in front of the other. This is the way. There is one change. I have had some time to think over the Christmas period (not always a good idea) and I have been able to identify the emotion that has kept me hostage for some time. Helplessness.

There are so many situations that have left me with this feeling that I don't really know why it has taken me so long to put a name to it. I'm only going to describe one, because I know that the key player – youngest daughter – will understand. There are countless more, so although I know you'll read this, dear youngest, you will know this is not only about you.

Christmas is lovely – exciting, pretty as a tree, full of food and sweetness and fun; and if you have CFS/ME, it is utterly energy-sapping and exhausting. So when, a couple of days later, youngest daughter staggered from her bedroom and laid herself in a puddle of tired at my feet, it wasn't a surprise. She didn't have the energy to speak, so communicated in little moans. I knew lifting her would hurt, and I didn't know where she wanted to be or what would immediately help, so I turned to oldest daughter for help. We improvised a system of communication – moan if you want this, don't if you don't; then oldest gently helped her up and in to her arms and carried her to a warm, soft spot while I found the food and drink to give her a quick boost. And all the while this was happening, I felt helpless, but didn't know it. Weird, huh?

Helplessness is a numbing emotion. It is the opposite of control, which is about action and initiative and movement. Helplessness shuts you down and clams you up and saps your reason without your knowledge. It is the rabbit in the headlights situation, only the reason the rabbit doesn't move is because it doesn't know it's paralysed in the glare of oncoming doom. When you feel helpless, all you can do is stand there and take it, and hope to hell you survive. When the car misses, you stumble on as though nothing untoward happened. You don't deal with the emotion,because you aren't really aware of its presence at all.

But, helplessness is not hopelessness. To be without hope is a wholly different thing, a deep, dark thing that if you were to experience in the glare of oncoming headlights, it would have you turn your back and wait for the impact. Helplessness is easier to recover from, once you know it is there.

When I was a young twenty-something, desperately seeking an identity, I asked my man one wrung-out day what made me special. What was I good at, because I felt bad at everything. His answer surprised me so much, I mulled it over for years. He told me that the thing that made me special was how good I was at being able to love. And no, he didn't mean that physically – well only a bit, anyway. He meant that not only did I have a high capacity to love, I was very good at doing it too.

Twenty odd years later (and you can take odd any way you like), I think perhaps he was right. If there is one thing I can do when life holds me hostage in the headlights, it is love. I can't change anything – I can't take away the pain or the frustration or the sadness or the anger or the fear or the despair that the things my family has been going through have engendered, but I can love. I can listen and hold and talk and hug and cook and soothe and smile and laugh. I rarely say the right thing at the right time, but I can try. And to try is to be active, and to be active is to take control, and to take control is the opposite of helplessness.

So this is my new year's resolution. To recognise the feeling of the rabbit in the headlights, and to consciously decide to arm myself with the only weapon I can use. I will be a rabbit, true – but I will be a small furry mammal armed with a bazooka. The bazooka of love. I do hope you enjoy this image.

Winter Love Soup
In a heavy-bottomed casserole or saucepan, sweat an onion gently in a tablespoon of olive oil. Find a selection of vegetables that your family likes and chop them into small pieces to add to the onion and olive oil – as many as you like. Leave any green leafy ones to the end though. Crush some fresh ginger and add it to the mix, then cover with stock to simmer. In the meantime, cook rice and red lentils separately, then add them to the stock with any greens. Add the secret ingredient, which in my case is ginger wine. Simmer altogether for a few minutes, then ladle into bowls. It will be very hot. Add some creamy plain yoghurt, or not, depending on how you feel. Eat with a spoon.

I meant to use this blog to explain myself to the friends and loved ones that I have not spoken to in some time. I guess that will have to wait. If any of you actually read this, though – I am sorry. I am, after all, only a small furry mammal, very recently armed. Give me time.

Comfort me with apples

Strengthen me with raisins, comfort me with apples, for I am faint with love.
Songs of Solomon

Some things are very hard to write about. Like the fear shadowing your mother’s face when she has been diagnosed with breast cancer.

So I thought I would write about the things that bring me comfort, instead.

The different kinds of hugs my family give are high on the list of comforts. Youngest daughter’s are infinitely gentle and delicate, very similar to her grandmother’s in fact. They convey peace, compassion and cherishing. Oldest daughter’s are similar to her father’s – warm, generous, strong and fiercely devoted. My father’s are squashily understanding and caring, my father-in-law’s are hard and dependable. An embrace is an expression of love more demonstrative of the character of that love than any other; a kiss is less intimate (apart from a lover’s kiss), a look can be misconstrued, words are even less dependable.

Despite that, friends’ words are definitely another sincere source of comfort. Close friends provide the scaffolding which keeps me upright in the storm, but even those I don’t see very often say wonderfully comforting things. Thank you, all of you.

But there are strange things that comfort me, too. Not in the same way, or in the same league – sport even. But these small moments of peace and pleasure from my world sustain me.

One lovely re-occurring moment is watching my beautiful dog bouncing joyfully through a colourful meadow, where we commonly take his walk. I know this sounds like a bad advert for toilet paper, but if you can imagine a setting ringed with old and ancient trees, green and mauve waving grass speckled with buttercups, violets and forget-me-nots, swallows circling over-head, and a particularly attractive golden Labrador-cross-golden retriever grinning from ear to ear, you can sense my little piece of heaven. No, I’m not saying where it is. Find your own.

Here’s a strange thing which consoles me. It’s a cup – more aptly a mug, but the word has such poor connotations, I don’t want to sully my drinking vessel with them. So, my cup was given to me by my mother, mostly because she had no shelf space for it. To be honest, it is more my kind of cup than hers. She prefers delicate china. My cup is solid, glazed earthenware. It fits snugly into my hand, keeping the heat inside where the tea is. The rim of my cup curves almost sensuously on my lip, and the weight of it is solid, utterly to be relied upon. It is soothing and dependable, and no-one else in the family would use it unless desperate. It is a pretty blue, and it bears the slogan ‘Comfort me with apples’. I was intrigued by this, so I looked it up, and it is one interpretation of a line from the Old Testament, found in the Songs of Solomon, verse 2.5. Isn’t it beautiful? Can you judge me for finding it comforting?

Chocolate is predictably comforting, not just for the pheromones or the sweetness or the calories. Chocolate – good chocolate – has an other-worldly taste. It is an escape from reality, a sensual departure from the stress of daily life. It is sex for the tastebuds. And although I am certainly no fan of Tesco, I have discovered an award winning chocolate bar from their Finest range which is mouth-orgasmic. It is called Organic Dominican Republic 70% Plain Chocolate, and it has the added comfort of being Fair Trade. Some people are cynical about the Fair Trade movement, but my buying power, limited as it is, is my only influence on the trade juggernauts of this capitalist world, and I intend to use it as much as possible. Even this tiny thing – the thought that an infinitely small amount of the money I spend will improve somebody’s outlook to a tiny degree – brings me comfort. For I am faint with love for the world and the people in it, and I take my comfort where I can find it.

Motherhood Rocks (and Hard Places)

There's nothing like your daughter having to keep a food diary to make a mother conscious of her parenting skills (or deficiency thereof).

This is the situation in our household. The twelve year old is baffling the experts with her inability to recover from CFS/ME. They make us record her every activity, from the time she goes to bed to the amount of outdoor time she gets a day. We have to balance rest time with activity time, create opportunities for her to socialise without wearing her out and keep her from being overrun by small, boisterous and adoring cousins. We keep records of how much she sleeps, how much time she spends on the computer and how much time she spends wearing herself to near collapse just by breathing in and out at school.

This time the OT came to visit, she couldn't fault our regime; and yet the small one was across the table from her, propping her slumped form up by sheer politeness, mumbling her replies because opening her mouth too wide was exhausting. We must be doing something wrong, but what?

Then the idea struck - perhaps she isn't getting the nutrition she needs? She is a twelve year old vegetarian who won't eat vegetables, after all. So to find out, guess what? Write down every thing she eats in a day. For three weeks. Sure. Why not?

I happened to be working from home today, so I could keep a close eye on what she ate. But that also meant I was responsible for proving that I do feed her a balanced diet, and while I know I offer her a range of foodstuffs, as I may have mentioned before, she will only eat three.

Breakfast was easy, because the only thing I had to feed her was eggs and bread. So eggy bread, and because They were watching, half a banana. She loved this combination, so that was a good start. I didn't mention the icing sugar she smothered her eggy feast with - was that wrong? Oh well, there's only so much humiliation I'm prepared to take.

Lunch was a bit of a challenge, as there really wasn't much left to feed her. I settled on Quorn for protein, noodles with soy sauce and sea weed for carbs and minerals and half a frozen corn on the cob for vitamins (well, they contain some) and fibre. She ate the Quorn. And the seaweed. And one third of half a corn on the cob. Do the maths.

So by the middle of the afternoon, she's starving, and manages to persuade me that because her throat hurts so much she must have ice cream. Look, I was trying to get some work done, OK? And then she had 3 pieces of chocolate. Down it went on the list, in her own handwriting - proof of my incompetence in black and white in a Hello Kitty notebook. Sigh.

So, supper time. Determined to get something right, I turn Mother Earth and raid the kitchen cupboards for the ingredients for lentil soup. I was really proud of my creation, I thought it was delicious:

Take an onion and a bunch of left over broccoli (stems and all) and soften them in some olive oil. Add some garlic crushed in sea salt, then throw in a can of tomatoes and a cup of red lentils. Splash in a good dollop of red wine - for the antioxidants, of course - some tomato puree, your favourite stock and a pinch of Italian herbs. A little brown sugar will round out and soften the flavours. Simmer until the lentils are done, and whizz in a blender. Yum.

'What's that Mum? It looks like puree.' Not good - even the 15 year old thinks I'm trying too hard. I enthuse about how absolutely delicious my soup is (it really is). I serve it to the young one with sliced white, which is the only way she will eat soup, somehow spoons and hot wet stuff do not equate in her mind. And to entice her to bulk up her diet, a breaded Camembert, as cheese is one of the 3 things she'll eat. Sometimes.

This is what I've written in her food diary:

• Homemade lentil soup - 4 mouthfuls (and this took all my powers of persuasion, which obviously are not strong)
• two thirds of half a slice of bread (they can do the maths)
• the breadcrumbs and one fifth of a breaded Camembert
• two chewy multi-vitamins

Maybe it is her diet. It sounds bad, doesn't it? And this is only day one. By the time I get to week three, and I'm back to feeding her egg fried rice every day of the week, I'm going to die of shame and embarrassment. But somehow she keeps growing, and I've had to buy her a new wardrobe twice in the last year. She is slim, but perfectly proportioned, and her hair and nails grow so quickly and ferociously they could have a wardrobe of their own. And if I make her anxious about what she eats, her CFS/ME will get worse.

Rock over here, hard place over there.

That's motherhood for you.

What's worse - being out of toilet paper or food?

I am writing this blog to record some of the wackier recipes I come up with to feed my increasingly faddy family. What better day to start than the one on which we seem to have run out of not only food, but - horrors! - toilet paper, too. I wonder which is worst?

I should stress that there is no connection between the over-use of double-ply-extra-soft-recycled in this chaotic home, and the meals I cook. My cooking is almost always eaten with pleasure, and if there is too much call for the other stuff, it's probably because they eat too darn much of it.

The cast of our small family drama includes:

• one man - yes, poor thing - who can't stomach pine nuts or large helpings of pizza, turns his nose up at fish and asparagus, but loves almost everything else (especially curry and gummi bears)
• one eldest daughter, who, at fifteen, loves her junk food, although the more junk she eats, the thinner she gets; hates fish and mushrooms, loves butternut squash and mashed potato with lashings of ketchup, refuses fatty meat and picks out her peas, but has double helpings of parsnips and broccoli; lives off tea and chocolate when allowed to
• one youngest daughter who decided she was a vegetarian some years ago and has stuck to it religiously - won't eat anything that was once breathing, or vegetables (particularly not mushrooms); lives off egg fried rice with sea weed, sesame seeds and soy sauce and, when she is allowed it, icing sugar on almost everything else
• one grandma, who will eat tiny portions of absolutely anything except muesli, easy on the chilli and the alcohol
• myself - a working mum who will eat anything at all, (although only tolerates blood pudding under extreme social duress), as long as someone else cooks it

There were three for tea this evening, and we only had pasta. No cheese, no cream, no tomatoes, absolutely nothing to make a sauce with, and no meal that all three of us would eat. So this is what we had:

• eldest daughter - pasta with baked beans on top and a once frozen corn on the cob which I really didn't fancy
• youngest daughter - pasta with two vegetarian hot dog sausages, olive oil and a once frozen corn on the cob
• me - pasta with a sauce made from frozen peas and a teaspoon of mint sauce with pan-fried salmon and a dollop of mayonnaise; it was gorgeous! Absolutely scrummy.

We were all happy, there was minimal washing up due to my clever pot-saving cooking methods and even the dog was pleased with half a veggie hot dog. It wasn't until after we had finished the meal that I realised my mistake. What goes in must come out, and there we were with one diminishing pack of tissues between us! What's worse - no toilet paper or no food to speak of? Definitely the soft white tissue on a roll, mate.