The view from the UFO sofa

Today, the day before the weather is set to turn from Mediterranean back to – well – Scottish, I feel it is important to share my liking for sitting in our garden. Someone gave us an outdoor sofa as a wedding present, a collapsible frame suspending a large oval (UFO-shaped) cushion into which I sink at the perfect angle for basking in the sun. I am sitting in it now, and this is the view.  

 Nothing special, you might think, but let me tell you what I see. The apple tree my sister gave us for our first Christmas in our home. The cheerful elephant who, despite coming from a local retail park, reminds me of our favourite holiday in India. One of our voluptuous camellia bushes. And the sun illuminating the leaves of next door’s lilac tree. 

We live in a terrace of houses and the back is a pleasing patchwork of roof terraces and walled gardens. It allows me to feel connected to my neighbours by hearing what they are doing without feeling that we are intruding on each other. Right now, the boys from upstairs are out on their roof terrace with some friends drinking beer, chatting, while one of them quietly strums a guitar. It is a gentle, happy soundtrack to my daydreams. I could be in a street cafe in Madrid. But I am home.

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Read the book, not the cover

I doubt there are many people with M.E. who have not, at least once, been told, “But you don’t look ill.”   The statement comes in many guises and is often a misguided attempt to cheer the sufferer up.  I must admit, though, that I find it to be one of the daftest comments I have to deal with.  What, exactly, is an ill person supposed to look like? Are you saying that, because you don’t think I “look” ill, you doubt whether or not I am telling the truth?  Is the fact that I am out of bed, washed and dressed, confusing you?

This last question, I think, is often at the heart of the problem.  I don’t spend extended periods of time with friends or family very often these days – the length of a meal is about my limit – and when I do see them, it is usually the result of careful forward planning and a significant effort on my part to get myself out of bed, washed, and dressed.  What virtually no-one apart from Husband and Puss sees is the state I am in immediately before this transformation, and the state I return to immediately I get home or the last person leaves my house. In illustration, I provide the pictures below.

This is how I look on a normal day: in bed, possibly on the sofa, in pyjamas.   

 

This is how I look when someone is coming to visit me, or I am leaving the house to meet them: a special occasion. 

 

I return to the first state (ie, the makeup comes off and I return to my pyjamas) as soon as I can, then usually go to bed and fall asleep.  

Now, at first glance these look like nothing more than your average ‘what I look like first thing in the morning/when I leave the house’ pictures.  But let’s think about that more carefully.  When a healthy person gets up, gets dressed and leaves the house, their inner self would generally follow a similar journey to their outward appearance.  Wake up feeling sleepy and grubby, leave the house feeling more awake and ready to face the day.  My inner self does not follow this journey.  When I leave the house, even if I am going to a nice event with a person I like and want to see, inside, I still feel like the person in the first picture.  That will vary from day to day, but common feelings are, “I have an elephant sitting on my chest,” “I hope the bus driver is nice to me otherwise I might cry,” “Why is the world moving so fast?  My brain can’t keep up with it”, or “I feel like I have the back and knees of a 90 year-old with arthritis.”  The application of makeup and blow drying my hair do not change these feelings.  

Why, you might ask, do I bother with the effort (for it is an effort) of cleaning myself up?  Well, the easy answer is: vanity.  Just because I don’t feel well does not mean that I want to start going outside in my pyjamas and washing my hair once a month.  I have my pride. And personal hygiene.  And a reason to be thankful that I am a woman and can use makeup without feeling self-conscious.

Luckily, there is an easy solution to the issue.  No-one wants to be told that they look terrible, or to have their illness doubted.  But everyone likes to be told that they look nice.  All it takes is an alternative wording.  How about, “I’m sorry you’re not feeling well.  If it helps, you look great!” Sympathy and a compliment in two easy sentences, what’s not to like?

  

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How can you help?

An ME charity recently asked what, other than understanding and accepting their loved-one’s illness, friends and family could do to support a person with ME/CFS. I had a think about it, and then forgot which charity had asked and where I had seen the question in the first place. But it seems a shame to waste the effort I put into thinking, so here are the results. Thank you to the many friends and family whose true love and support are represented here. And to both the late and present Pusses, for their outstanding contributions, in the form of day-long lap-naps, to item 4.

1. Remember that the person is ill, and needs care. Everyone notices when someone they love falls ill at first, and they know what to do. The sick person is scared, upset and confused, their life changes. We send flowers, pop round for a cup of tea, fire off an encouraging text. But time goes on, there may be nothing in particular ‘happening’, and the person may learn to cope with their own illness better. It is easy to forget that they are still actually suffering from the same symptoms. After six years, it means a lot to me when I get a little reminder that my friends still know that, behind the coping strategies and the smiling face, is a sore, exhausted person who needs a hug.

2. If you don’t understand, don’t ask the sick person about it. Even the most caring and well-informed person will naturally have gaps in their knowledge, or times when they wish they could have their old friend or relative back, able to do all the things they used to do. Guess what – they wish the exact same thing! Don’t feel bad for having these moments, just remember, it’s not about you. If you don’t understand something about the illness, that’s what google is for. If you don’t understand how they are handling it, ask yourself, Do you really need to? A sick person is not an encyclopaedia, and they don’t have energy to explain to everyone they know. If you get frustrated, keep it to yourself or talk to a third party about it. Most likely, the person concerned is already worried about the effect their illness is having on those around them, and taking out your frustrations on them is just not fair.

3. Plan from their perspective. One of the most depressing things about having ME/CFS is constantly having to say, “No,” to things that they would really love to do. So if you are planning something you would like your ME/CFS buddy to be involved with, ask them first what will make it possible. It’s a bit embarrassing to be presented with a plan made among healthy people and asked to join in, only to have to request a load of changes and feel like a fusspot. Make any journeys easy – if they need to take a taxi, take one and don’t moan about the cost. Time things to suit them. Don’t try to shoehorn in more than they can manage. Or accept that they might only join in for part of the activity. And remember that their condition fluctuates constantly so that they may have to cancel at the last minute.

4. Save their energy. Once a plan is made, stick to it! Changes can be stressful and tiring. Turn up on time: your friend is making a big effort to join you and only has limited energy, so don’t waste that energy by making them waiting for you.
Obviously, I can’t speak for everyone with ME/CFS but I am terrible at protecting my own energy and constantly trying to do more than I can sensibly manage. So, if you are visiting someone at home, make your own tea or coffee, wash your own mug, even if they protest. Phone ahead and check if they need milk or other essentials brought in. By doing so, you free up energy and therefore time to spend with you, and reduce the time they will need to recover afterwards.

The main thing is, remember that this is still a person, and your friend, child, sibling, partner. Remember why you love them, and tell them. Be kind.

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Eyes on the Prize

Thank you everyone who has got in touch since my last, long-ago post, to say they were looking forward to the next one. It inevitably surprises me that anyone would be interested enough to do so, but in a comforting way. It may not surprise you to know that I have been looking forward to my next post as well! Not just because I usually have some sort of idea that I could write about buzzing around my head, but because the ability to pin that thought down on (virtual) paper would be an indicator that life had stopped spinning long enough to allow it.

Here is a groundbreaking piece of news for you: Moving House Is Stressful! Of course it is good stress, not least for us because it represented finally being able to move forward after five years of being stuck by the housing market. And I am a natural nester, so the process of making our house into a cosy home was something I had been desperate to start. Part of the reason we chose our house was that the kitchen, while technically functional, was so awful that we would want to change it straight away. And when we moved in, it was worse than we realised. The oven blew the lights in the entire house when we turned it on because the previous owner had sprayed so much oven cleaner inside that it short circuited. Ironically, the oven must have been the only thing in the house she did clean before leaving – the joining strips on the worktop were stuck down with encrustations of grease, which also appeared inside the detergent drawer of the washing machine. But no matter: this gave us the perfect excuse to design my our (my) dream kitchen. Great, you might think. But do you have any idea how many decisions you have to make when designing a kitchen? Taking in and analysing information, comparing options and whittling them down reach a decision are tasks that Chronic-Fatigue-Brain does not cope well with. There were so many options that at certain moments last spring I felt like jacking it all in and keeping our wobbly kitchen that wasn’t screwed onto the wall properly, and whose legs fell off when you hoovered underneath the cabinets. But we persevered through the decisions, and through six weeks of fitting during which we had to wash dishes in the bath, and now have a kitchen that makes me smile every time I walk into it.

This has been the biggest of the changes we have wrought upon our home so far but smaller things are still ongoing. I had been hoping that this constant process of imagining and decision-making might operate, a bit like physical graded exercise therapy, gradually to increase my poor brain’s stamina. Unfortunately not, and I have therefore spent the year in a bit of a daze, but at least I can say I have managed it, and have a comfortable home that feels really ours to show for it. As Husband wisely points out, our home is my world for much of the time, and it is well worth a bit of pain to make it into a place where I can feel truly safe and at ease. This furry little fellow certainly seems to agree – as long as the effort isn’t his!

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Celebrating Genius

I have been beating myself up all week trying to think of something to post about for M.E. Awareness Week. But a brain filled with mud – other than the odd moment trying to muster a rational thought about our new kitchen- is not conducive to that. Then I remembered this card, which my Mum gave me when we moved house. It always makes me feel better about myself, reminding me that life with CFS is tough and that I am awesome for coping with it.

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So if you know someone else with M.E/C.F.S, they deserve to know the same. Please share this with them, text, email, Facebook them, any way that works, to let them know that you haven’t forgotten them, and that they are geniuses, just for getting out of bed in the morning. I’d love to be responsible for a few smiles this week.

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Double Joy

A garden of our own that grows beautiful things;

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And a Husband who collects little posies for me from among its offerings.

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Farewell to Puss

I’m having a tired day today, but there has been so much going on lately that I feel the need to send some of it out into the ether.

In a year of health worries for our family, it seemed particularly cruel last month that we had to say goodbye to my loyal little companion, Puss. She had been diagnosed with cancer and the decision to let her go a few weeks later was, though heartrending, ultimately the only kind one. So her furry presence no longer lurks around the house but I still instinctively look for her, under chairs or the bookcase, or when I sense movement in the corner of my eye. I almost expect her to sneak up to me when I am lying in bed or on the sofa, ambush me with a leap onto my tummy (accompanied by an adorable squeak of effort which came to sound like ‘hello’ to me), and cuddle herself up into a reassuring, loving ball of snooze. You may smirk if you will, but she, Husband and I had become a comfortable family trio and we miss her terribly.

But I believe the universe ultimately balances its downs with ups, and last week we got a huge lift. After a five year process of selling and searching, we have finally bought a house. The relief – bordering on disbelief – on getting the news was almost immediately eclipsed by the bursting out in my brain of all my long dammed-up ideas for feathering a nest in a home of our own. For a while this threatened to stress me out almost as much as searching for a house had done. But I have calmed down now, and am counting down the days until we can move in, put up our Christmas tree, and start rearranging the furniture. Happy days, even though we wish Puss could be there to demand immediate access to all the cupboards.

I have been forcefully taught, or reminded of, two things by all this. One is that my physical and mental energies are strongly linked, and if one is sapped the other will follow suit. The other is that positive stimulus on my mental energy can drain it just as much as the negative. I wish it were true that happy news automatically raises my energy and my mood, but the truth is that, if I don’t practice moderation in this as I do with tackling difficult or challenging mental and physical tasks, it floors me just the same as walking too far or trying sort out home insurance does. If this seems ungrateful I don’t mean it to be. If anything, forcing myself to think about exciting things in bite-size chunks simply spreads out the good stuff (and I’m good at that – I may be the world expert on milking birthday celebrations). One day I could dream about whether I would like to paint our hall or put up a beautiful, willowy wallpaper (yes, I have already picked a candidate out online). Another, I could organize our new kitchen in my head for the fifteenth time – is there room for an easy chair for me to sit in while cakes are baking? So I like to think that good thoughts are waiting for me, like sweet morsels ready to counteract the sour ones, whenever I look for Puss and her soft little face is not there to greet me.

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