Friday, 27 December 2013

Seasons Greetings

Hey everyone! Happy Christmas!
Sorry I've been away for a while. It is odd writing a blog when so little changes from day to day.  Although I read last year's posts and realise how much I have changed, I have also changed very little! 
It is December 27th 2013, about eighteen months since I began writing for you all. I am currently spending most of my time in bed as I hurt myself during an Epileptic seizure four weeks ago and am recuperating. I've hurt my stomach muscles, which until now I didn't realise how much they support my every movement! Of course when it happened I thought, "no problem I'll be fine in a week" then thought, "no problem I'll be fine in another week" From the signs I'm getting now I'm thinking it might take well into the New Year and I have to look at the long term and realise I will need months of recuperation- there is no doubt I'll need to build up muscle again and slowly begin walking and gentle yoga so I don't crash again. I'm enjoying the thought of the first days of Spring in the garden, when I can start work on the flower beds and vegetable patch. Slowly, ten minutes at  a time as my energy comes back again, I'll really enjoy seeing a difference. As for now, just typing with the keyboard sitting next to my chest in bed is hurting too.
Right enough of the moaning, I feel like a broken record- I can't imagine what it's like to live with me! I think the best part of this Christmas was my brother-in-law ringing on Christmas morning and offering to set up a Face-Time with my sister and their family. I saw their decorations, saw that the children were playing with their presents and said "Merry Christmas" to the rest of their guests too. As we've had no energy or inclination to put any decorations up this year, it really made my day.
        We also have a friend staying at the moment and she has takien on a lot of the cooking and organisation. So I feel very lucky. Merry Christmas everyone, may your Holidays and New Year be lucky too.

Thursday, 18 July 2013

Heatwave Warning

   Living in the UK generally gives a wide range of weather, without reaching any real extremes. The highest temperature ever recorded in the UK was an unimpressive 38.5C in 2003. Compared to the degrees that some countries are reaching at this point in the year that is nothing. But for those of us living here and living most Springs and Summers since our last heatwave in 2006 with temperatures on average in the low 20s and then with regular rain to cool us off, we are finding it difficult as it reaches beyond 25C every day and is predicted to exceed 30C every day for at least the next three days.
This is what has prompted a heatwave warning from the UK's Met Office. Especially noted is that the UK doesn't have the facilities to help people in temperatures like this- very few homes have air-conditioning(we certainly don't, just a couple of table-top fans. And it's probably only a very small percentage who have swimming pools easily at hand to use as a cooling aid. I remember hearing the new of a heatwave on the news in 2003 and going into a total panic. "...those with long term illnesses need to take extra care..." By being told that I needed to be extra vigilant, when I had no idea that I really needed to be watching for anything just sent me into a panic. My Epilepsy dictates my life to a certain extent- my body doesn't like extremes of any kind of stress, be that a fever, a shiver, a migraine, or indeed outside influences- including heat-waves. And my ME is just a pain in the behind when it comes to extremes of temperature! 
   I flake in the Winter when it's cold and I flake in the Summer if it's hot. We had an extreme Winter (well UK extreme!) this year as well, and I managed that quite well. 
   I am watching myself day-to-day. I know I can't sit in the garden when it's hot, so I leave that for the evening, some days that has had to wait beyond 7pm. I managed a little weeding last 8 o'clock in the morning! I am finding activities for indoors and enjoying them. My sewing has taking pride of place and I've taken more pleasure from using the fabric in my stash and inventing. Knitting at the moment is a no-no as my hands are too sticky, and my concentration is just not working so trying to have a conversation is difficult as is writing and reading or doing anything particularly important like filling in forms.
So I'm happy with my lot and listening to audiobooks, sleeping every afternoon if the heat becomes too unbearable, and generally taking it easy.

Hot tips!
-open the back door when the temperature indoors becomes higher than outdoors, to level it off and create a breeze.
-fill a jug or bottle with water and keep it in the fridge for cooling drinks
-have cooling smoothies or milkshakes as a summery breakfast or lunch
-avoid using the oven and if you have to leave it until later in the day when a window or door can be opened to let  the heat out.- I steamed a joint of gammon last night and it is now going to make up the mainstay of our meals for the next few days. We will cook with the microwave or grill if necessary.- Couscous is a great option now as it's just cooked in a bowl of boiled water, salad vegetables are readily available and most vegetables can be cooked really quickly if they're chopped small enough and stir-fried.
-And if you really don't fancy cooking a whole meal, go out to a restaurant, let someone else cook for you or buy a pre-cooked chicken from the local deli!
-try an alternative to a hot water bottle with an ice pack from the freezer (wrapped in a tea towel so you don't scald yourself) 
-take it easy! most things can actually wait another day/week/month and if they are obligations, people would understand if someone couldn't attend because of flu in the middle of winter...
-if I do leave the house I go early in the morning, or in the evening.
-we went to the local fete last weekend, very well prepared, with a large bottle of cold water in a freezer bag with some plastic beakers (we shared it out to a privileged few!) I also took a hand-held battery-powered fan, wore cool layers, a hat and sunglasses and we took a picnic rug so that we could sit down and enjoy the shade once we'd eaten our burgers and ice-creams!
If you have any more tips I will be pleased to share them.

Tuesday, 18 June 2013


OK, so I actually did it. I managed a holiday without major disasters. Well, the wheelchair broke when we were putting it in the car before leaving and we had a flat tyre five miles away from home, but that's all good fun!
It was when we arrived that I realised why the wheelchair had broken...we were staying five minutes from a mobility specialist who had all the tools and know-how to fix it. We might have struggled where we live and might have decided that the only option was to spend £200 on a new wheelchair; this one might last another year or two, now the wheel has been reattached. 
We were staying near family, so it was great to catch-up and see our nephew and niece and join in day-to-day life with them. As I'm sure you'll appreciate, some family you're happy just seeing for a quick hello at a large gathering, but some need more attention. This holiday offered us that extra attention and I would gladly do it again.
I had thankfully been able to put together some quick meals to freeze and take with us, so for four days our dinner just went in the microwave to be reheated and our lunches consisted of rolls and sandwiches with cold meat, salad and cheese. No complaints and it made life easy. 
On our return I have needed three days of solitude and exhausted healing. I've slept during the day, I've been irritable and crotchety, which my husband would say is an exaggeration, but I've not particularly enjoyed the mood from my end. The most healing part is that I've been able to keep my routine going over the holiday and continued it as we've returned. As I wake each day, I now do mindfulness practice in bed for twenty minutes and sometimes follow this with some yoga stretches, in bed too. I have learned to repeat this, or complete a similar practice in the afternoon when I wake after my rest. I'm sure these have given me that little bit of extra patience and ability to handle those crazy moments that always peek into our holidays away from home.

Saturday, 18 May 2013


   This is a difficult subject for ME patients. I found communicating difficult for years. A simple chat can be exhausting if it's full of emotion-sadness, happiness, laughter, distress. I have to be allowed to pick and choose my conversations. Living in the same house as other people is hard enough; I need space, healing time and a noise free environment for a large part of the day. So one thing that has entered my radar over the last couple of years is communication online. I have said before how ME and other illness websites and forums offer only so many benefits. The bonus is information links and generally reliable answers to specific questions. But if my conversations continue and I keep returning, desperate for the chat to continue, more often than not I have found the negative aspect of the illness to be the main topic of the forum. It is then that I have to choose my conversations and respectfully decline.
   Life is not defined by someone's health. It can greatly impact their quality of life in some ways, but multiple interests and hobbies can enter life as well. I have joined various forums  relevant to my hobbies since I discovered their good side last year and these are what have given me a better conversation. As long as I restrict the  time I spend chatting in this way I have found them useful and enjoyable.
   I can leave the house a few days every week, in various guises- walking a short distance; in a car to a friend's house; in a car to a coffee shop (I do not drive BTW)- and on most occasions it is what is waiting for me when I arrive that I need to control. 
This is how I fill my week: (It's a great deal less than full!)
  I meet with a group of friends once a week, we do a round-robin of hosting and we're all like-minded and supportive. That is good, no waste of energy because someone I don't know talks for too long and uses energy I would have better used talking to my sister on the phone, for example. Sometimes I sit and listen more, sometimes I am life and soul of the party.
  I have friends who I like to meet one-to-one, I'm sure many of you do, so I usually organise a visit once a week and then keep in touch, where in another life I would have come across them more regularly while going around the local shops. If OH has a day off work, or its a Bank Holiday I usually drop this from my schedule as it becomes too much.
  My OH is obviously living in the same house as me! He works nearby and doesn't travel for work, so is there for me 24/7 excepting the hours 7.45am-5.30pm, Monday to Friday. We chat most lunch times on the phone, for our mutual benefit- he is assured I am well and I sometimes need reassurance that I am not the only person in the world! 
  A friend, who also has ME (we met on an ME forum), is a regular source of chat via the phone, (landline- how backwards is that?!) we will sometimes chat multiple times each day. This is a very good link, as we discovered on the forum that we have very similar attitude towards our health and can boost each other's confidence as the days or hours, go by.
  I use Facebook to communicate with friends in my town who I just can't see on a regular basis, usually because they are working. I also follow the posts of friends who live further afield and I use Skype to chat with them once every few months if we don't meet up otherwise. 
  It is the internet that has given me so much of this, I remember how much I used to wait for the postman every day desperate for communication with the outside world. I used a video and audio book hire scheme, by post too. Life was so slow!  
  The interesting thing is that I find knowing I have at least one weekly conversation sitting in my diary keeps me going. The isolation that I need for my health doesn't feel quite so isolating!

Thursday, 9 May 2013

Walk For ME

Once a year (or multiple times depending on how many charities you support!) comes the awareness week. This week is International ME Awareness Week. Chosen to be this week because it is believed Florence Nightingale suffered a form of Chronic Fatigue Syndrome towards the end of her life and her birthday was 12th May.
Today is my birthday and as a token of their friendship my nearest and dearest have been on a walk this morning, a Walk For ME (link-donations readily accepted!) I made cake yesterday and because of standing and moving around in the kitchen, (using my Kenwood mixer) my legs, but mostly my knees and hips just couldn't make it out of the door to join them.
So they returned triumphant, having worked off enough calories to allow pieces of sugar heaven to be demolished with tea and coffee.
The conversation couldn't be anything but how differently the media attempts to explain these medical phenomena that attract our attention day to day. After the scandal over the MMR vaccine over twenty years ago, there are now consequences showing in hospitals across south Wales as I write. The distinctive nickname "yuppie flu" coined in the eighties, now gives so many patients of ME a battle before they've even made it out of the Doctor's consultation room with a diagnosis.
This is what awareness week is all about, no matter what illness is encountered, no matter who is making noise, these weeks show a more compassionate view of confusing diagnoses. Understanding the real people is what happens here and usually(!) the true side of the illness is shown. With World Wide Web access to multiple streams of information, there is no longer the excuse to say "Oh, I didn't realise". We can all make it our point to realise and if we find fabulous information we can make it known to as many people as possible, to keep spreading the words which make sense. 
Here's a few of my favourite links:

Tuesday, 23 April 2013


Those of you who follow my life so carefully (I realise that's probably only me!) will remember that I decided in January to aim for a few goals this year. (New Year New Me)
The first of these was walking and walking whilst carrying, well I can walk a short distance, but still only when my body is ready to do it, I couldn't jump up at a moment's notice and get a pint of milk from the local shop. That also mixes with the carrying part of it, I'm not carrying, I've tried, I can manage a light rucksack with my glasses and keys, but even yesterday I tried to visit friends with a small bag and could really feel the weight pulling my arm, it unbalanced me, so a light rucksack occasionally it will continue to be.

My biggest goal, and greatest desire was to get in the garden again. We have eaten veg from the garden before and I always helped achieve this when I was a child. Gardening was the weekend, the weekend was gardening. My Dad would be up at the crack of dawn, and if it wasn't a DIY project in the garden it was digging or chopping or sowing, Mum would be organising our lunch and shopping in the morning then everyone piled in the garden in the afternoon. When we weren't raking up the lawn with our bikes/cricket bat/ football/skipping rope, we were helping.
So I have been managing this. A story I read last year about a man who followed his ME recovery by building a shed (5 minutes a day or 2 hours, depending on his health) really encouraged me. I could weed a 3 metre square vegetable patch that was covered in buttercup, stinging nettles and brambles and more importantly do it by myself.
I have done it, over four weeks and the fact that I have friends who could have done it in one afternoon With the goal of 'one square foot at a time' I am thrilled at the prospect of finishing sometime this week, ready for the injection of plants next Tuesday. (My organic veg-box scheme is doing a plant box scheme this year, so most things, other than salad leaves and radishes etc, will come as plants instead of seeds and cut out a lot of work for me.)
So different to walking, but I thought it was the same...If I couldn't walk I couldn't do gardening.
I stand up and dig for 20-30 seconds, I kneel down and rummage through the soil for weeds and roots for 4-5 minutes. Then after fifteen minutes or so I sit and relax, watch the garden, listen to the birds (or the building site 30 metres away!)
I've also managed other small jobs in the garden in this time too, digging a bramble out if I've five minutes to walk around the garden in the afternoon and fancy a job. I've been out with the secateurs instead of going for a walk.
Last year I created strict rules for myself as my body was so weak and unable to manage jobs like these. That was right then, but I still had all the impulses, I saw all those jobs that needed doing. I have learned now to walk around the garden, see a quick job and ask myself whether I'm feeling able to do it, or if I feel more like last year and need to leave it for another time. The great thing about leaving it for another time is that I can sit on our bench or lie on the grass and (currently!) enjoy the sun!

Tuesday, 19 March 2013

Living Each Day

Some days are good, some days are bad. That sentence is such a cliché for anyone with a long term illness. And believe me it works time, after time, after time to describe my life. I allow myself to leave the house on good days and stay hidden on bad days. Very occasionally a friend will bundle me into the car and let me stay hidden on their sofa instead of mine, which encourages a more eclectic mix of wallpaper viewing, but it's still a bad day.
Viewing each day like this with insight can be a good thing, but more often than not is does me no good what-so-ever. I can look back and wonder 'why?' for ever and a day, but the focus must continue to return to what is best for me now, at this moment. Yes, understanding of how I found this situation can release a lot of tension, give me aids as to how I can help myself better, but if I've slipped up it was probably because I was thinking, 'why?' and not concentrating on the moment.
I'm sitting at my dining room table at the moment. I've just flicked through my Facebook App, answered one email (deleted lots more!), and I'm about to enter my day. I've dressed, eaten a cooked breakfast, moved the wet clothes from the washing machine to the tumble dryer and as I sit I wonder.
1.Why do I feel as if I'm running on empty?
2.Did the meditation I did in bed this morning help me control that at all?
3.Should I really be sitting here typing at all?
4.If I do this that or the other today, will I feel better or worse?
Distraction is essential in controlling these questions, I find distraction in many things, but mindful distraction helps me find the better space over and over again. Distracting from these questions comes with practice. I started last year by writing a lot of it down. (You're party to some of that!) I also have practiced ways of processing my queries faster, the 'Why?' quickly becomes a 'do I actually need a solution?' and then if it doesn't a leave the thought unprocessed, it's an unnecessary process that will waste my energy. If the question needs an answer to allay my fears, then I will work through it at a much faster pace. 'How can I look at this question with love and understanding?' is a much better way to look at it than 'why are you always thinking these stupid things, you're never going to get better' - I find it easier to follow through if I look at it as if it was someone else's question. I sometimes need to discuss this with someone else, but I rarely have a question running through my head day after day after day anymore. It releases a lot of tension, it gives me back my freedom and I'm loving myself, creating self confidence and preventing the energy wastage that has no place in my world being wasted!

So today's questions (or this morning's questions!) are easy to answer:
1.It doesn't really matter, I feel that a lot of the time and I know my breathing helps control it if it's willing to be controlled. So let it pass.
2.Possibly, let it pass.
3.I remove 'shoulds' from my list straight away, shoulds are not going to help anyone.
4.Who knows? I live each day as it comes.

Wednesday, 6 March 2013

Use The Force Hannah

My legs are making decisions for me more and more, my heart, my head is more awake and ready to do things and my legs won't agree. I've walked on Monday, two five minute walks, to a friend and back. Yesterday I stood in front of the hob and cooked my breakfast and lunch. I'm still timing myself sometimes, out of interest rather than necessity I think...breakfast took 8 minutes and lunch 9. I cooked two portions of lunch, and had the second one heated up for breakfast this morning. (pieces of salmon with red onions and broccoli stems, cooked in a frying pan with a lid on to steam which meant I could sit down!)
Having done a bit of on-the-mat yoga yesterday morning, my legs could deal with sitting in the garden while I dug up a few snowdrops and moved them; the clumps are becoming extraordinarily tight and need to be separated. Today they are crying out for a break, my whole body is in fact and it is one of those days when I have to give in and let it be. My afternoon will consist of what I call 'healing' time. I could call it 'crash out on the sofa/bed and fail to do anything time' but that's not particularly helpful when it is a necessity and even typing this feels exhausting.
My legs get to decide when they walk and I learnt that the hard way a few weeks ago, when I was finding the car with my husband, having been to a coffee shop. I was struggling and hanging on to his arm, for what felt like dear life, all he could say to me was "Use the Force Luke" ! It made me laugh, helped me forget my legs and laugh at them when I remembered. It didn't help them work any better but I made it, all be it was half dragged, back to the car and it helped me remember that I need to ask my body what it CAN do, before I choose what I WANT to do. At some point my Wants will become more dominant, but until then, I'm asking my body and this afternoon it can't go for a short walk, even sit in the garden, it needs to rest and more importantly heal.

Monday, 25 February 2013

Going For A Walk

How simple can that be? I went for a walk this morning. It was freezing cold, literally, about one degree Celsius. My gloves have holes in them (for a knitter that is kind of embarrassing, I should be knitting my own replacements, not waiting until I find them in a shop!) My two pairs of leggings under my jeans kept me cosy, my various tops and jumpers, hat, scarf and cosy coat kept me warm. But how do I walk?
I began walking again last year. With limited distance goals, after just doing laps of the garden, I began going about one hundred and fifty paces, then back again. Which took me about two houses down the road. As the weeks went by I increased the distance, not going two days in a row, and only going when I felt well enough during the day. If I felt dizzy, nauseas or tired I stayed home. By the end of the summer, about six months down the road, I could go round the block two or three times during a good week.
Today I donned my warm layers and headed out, with a rucksack! It was a first time experiment to see if I could manage it and it seemed to work alright. It contained pretty much nothing, but I could carry it. Yeah! I've had things in my pockets before, but never a load on my back. Shopping was my downfall when I tried to walk again four years ago. I failed miserably by taking my purse out with me and thinking I could fill up the fridge with bargains by carrying bag loads home from the local shop. As I said it was a failure. It was one of the things that turned my return to walking into a return to the wheelchair yet again. I am still using the wheelchair, when I'm going a further distance, when I've been using my legs for other things during the day, such as standing in the kitchen or a standing yoga lesson or when I've walked the previous day and am feeling it! It's all about moderation and giving myself time to prepare for any advances.
As far as the process of walking step by step goes, I have a new focus. This came from a walking meditation I learnt last summer. Breathing slowly and feeling each pace. Walking before meant getting somewhere without falling over. It now means finding a view to enjoy, while I decide on my destination. I admire the highest point on the horizon, forget about where I'm going and just enjoy the journey.

Tuesday, 5 February 2013

Making It Easier

I have read a blog post this morning from The Optimum Health Clinic.  It describes the different ways we can approach Discipline in our lives, to help us towards recovery. (See link)
I know I have been all three of the kinds they describe over the last 25 years. I have gone all out and filled my days with lists and rules, managed a timetable, kept charts and diaries for what I do, eat and how much I sleep every day, trying to find clues and answers as to what is going wrong and how I can change. That was me in the early days of this illness. Back then with so little practical help from outside, it seemed the best way to try and understand it for myself. It didn't work. I tried to give myself regular timetables. Forced activity and rest times only ended up giving me what I didn't need when I didn't need it.
I have also been an 'all or nothing' recoverer. In these times, unlike suggested in the blog I have listened to my body on different days. If I wake up feeling great, I go out, enjoy the freedom, party, exercise, socialise. And you know what happens then, I feel awful for the next few days, take it as my illness just being a bit relentless and take another cue from the  next morning. Which might suggest lying in bed, asking someone else to make my breakfast, falling asleep in the afternoon. All or nothing has been very close at hand sometimes.
Then, with so much experience and so little progress over the years I have also become one of the ‘I have no self-discipline at all, I can’t make myself do anything ever’ recoverers. This is a difficult one to put into practice as it needs a lot of self-doubt. But when an illness pushes you backwards and backwards, after you've tried so hard to keep going, there is sometimes barely any other route. I would have this approach in between all the others, whenever I felt lousy, it wasn't just the illness anymore, it was my fault, I couldn't follow a timetable, or rules, neither was I self-disciplined enough to get out there and do what I had to do.
So I have had an interesting relationship with discipline over the years!
Making it easier has been for me, finding a way of combining all three. On good days I don't go full out and wear myself to the bone, neither do I follow rules and timetables, I have a few options that I know I can do during the day, I also have a long-term goal setting list, which I can pick from when I'm feeling well enough. So good days give me opportunities to pick from these options and find an easy compromise. On bad days I know I cannot blame the illness, neither can I blame myself. It is usually, very predictable circumstances that have led me to a bad day. For the last ten days it has been my cold and sore throat. An external device, having nothing to do with the ME, just unlucky. Yes I am more debilitated by it than others might be, but I am more debilitated by everyday life than others, so that's hardly surprising. I learn to enjoy my bad days, give myself treats- like favourite films, new DVD box sets, or downloads from LoveFilm! I also let the food slip a bit, and eat a few organic pizzas and puddings with ice creams.
Learning to smile through good days and bad has become my discipline, letting a few tears come if need be, finding strength when I have only enough energy to lie on the sofa during the day and do a legs-up-the-wall yoga pose before bed is my discipline. Don't believe you have to follow rules or scripted health plans to be disciplined, be your very good self!

Wednesday, 30 January 2013

Plague and Pestilence

Well not quite!
I have a good old winter sore throat and down in the doldrums yuckiness. You may remember that I wrote in the Autumn about being pleased to have a virus, (heavy cold, good sign or bad) knowing that I could rely on my immune system better to rid it from my body. So now I am astonished again. I have all the symptoms, not just a bit of a runny nose. The average adult in the UK gets 5-6 colds or other viruses every year so once every couple of months is about right. I'm doing OK especially considering the number of times I have left the house in the vicinity of coughing, hacking, children and shopping centres!

For the first time in a while I've experienced insomnia this weekend. It is a problem a lot of ME patients battle with constantly. Except when I was first ill, I never had this problem continually, only if, like now, something else came along to interrupt my sleep. I took steps every day as I knew it might become an issue again if I let it take hold. The steps included and early evening meal. I still eat at about 5.30pm with a small snack, an apple, or a fruit yoghurt for example between 8pm and 9pm. Then I encourage my body to relax with no real activity after 9 pm. I will watch TV after this time as my tolerance for this has changed in the last year. I used to be wary of what I was watching- it had to be relaxing or mildly relaxing, like a cookery show or TV comedy or period drama.
Finally helping me sleep would be an audio book or as is now, my husband reading to me. I can read myself to sleep now sometimes too.
The biggest thing I learnt years ago was to not let myself sleep during the day. I would allow myself two hours in the afternoon at the most and make sure I woke up by 5pm. I still do that now and it prevents me from not sleeping at night, as the total hours sleep during the day ends up being around 12-14 hours. The other option during the day is to choose a Yoga Nidra meditation (Yoga Nidra and Introduction to Yoga Nidra?) or self hypnosis as these can recharge the body as much as sleep. Taking the body into deep relaxation helps me recover much faster.
As it still feels that my bones are actually aching with this yuckiness, whatever it is, my wrists have had enough typing, so I'll leave it there. Hope you're feeling well!

Saturday, 12 January 2013

Winter Yoga

Those of you who know me personally will realise how important yoga has been to my growth so far in the last year. I cannot emphasise enough how much it has helped me. My yoga has changed in the last four may remember I was doing a yoga class everyday, loving every minute. There was aching sometimes and also some days when I was wishing I hadn't. But the fundamental yoga practices are already locked in my brain. I find myself recognising them in my day-to-day life now, without thinking.
Breath is such an important point. I come back to my breath, notice it, meditate on it, so many times every day I would lose count if I tried to keep a tally. If I find myself tensing up or worrying, if my body is uncomfortable or in pain, I come back to my breath so automatically it is a great comfort. It gives me the consciousness to realise any discomfort and release the tension. That release is a cleansing of my body, mind and spirit.
Mountain pose, dancer, down-facing dog, cat, so many poses come into my life. I may not be attending a full class, but I just get down on the floor and release like that too.
Chinese medicine recognises winter as a time to slow down, to regenerate, to rest and heal. I was freaked out by what my body started doing in the Autumn as the nights started drawing in. I stopped doing a yoga class every morning, I was sleeping for an extra two hours most days and I was more tired during the day. Nothing but concern hit my mind "what is happening?", "am I going backwards?", "have all my efforts failed". I knew it wasn't SAD, Seasonal Affected Disorder, as I actually felt quite high in spirit, happy and content. But someone pointed out this phenomenon to me and it seemed so natural and true. By body might be more tired, working more slowly, but my mind is learning lessons every day, I feel stronger, more healthy inside than I have in a long time. My digestion, my lungs (I can actually walk outside in the cold, without stopping to catch my breath every few paces), my desire to socialise, to try and help in the home more; its all signs of improvement and I'm grateful for them.
A fantastic book I have, The Chocolate Cake Sutra, by Geri Larkin offers an autobiographical tale showing how the yogic lifestyle can become part of everyday life, no matter what worries or hurdles may come your way. I feel like a true yogi (or yogini!) knowing I can live this winter to the best of my ability and be happy in that. I breathe, move, live with my sutras. With breath, meditation, poses, gratefulness, trust, and belief. I am getting better and yoga has helped me find that path.

Tuesday, 8 January 2013

New Year, New Me

This isnt so much a resolution blog post, just a gathering of thoughts. So don't expect any diets or revolutionary new treatments ( I refuse to have mud baths three times a week!!!- my sense of humour will keep me going though!)
2012 has been an amazing year for me. Just remembering the state of my body, the things I couldn't do this time last year is all I need to spur me on to achieve the similar bounds in 2013.
I would like to be able to walk every day if I choose to, or have to. I would like to walk and carry something at the same time. I struggle with the obligatory handbag I carry at the moment if I am in town. Most of the time I have it wedged under my armpit so I notice the weight least. When I go for a therapeutic walk I just have my keys and phone- I'm unlikely to do a weekly shop or need a paracetamol or teabag while I'm sitting watching the ducks by the river!
I also dream about managing some gardening on a larger scale, this year I put some potatoes in two pots, tided the patio a couple of times and you may remember I also cleared the landscaping bark from the gravel! The tasks in our garden have to be divided up, we have so many flowerbeds and so much grass and scrub. I know we are lucky and it was one of the reasons we chose this bungalow to be ours but I have a gardener's mind...once I get started there's very little stopping me and my ideas keep flowing. Maybe I will make this a goal for this year, to choose one gardening job at a time and manage it in small bursts. A friend of mine knows an ME patient who managed his recovery by building a shed. He promised himself he would go out and build on the days when he was able and work for 5 minutes or 2 hours, the days would dictate, not a strict timetable (not the way most bosses would prefer it, but I don't think my garden will complain that much!).
I also hope 2013 brings me the opportunity to visit my friends.The last time I did this was 2007 and it was a disaster. Sleeping on the sofa bed, travelling on the train, too much noise and activity, too many people in one house during the weekend for my body to cope with and I came home to have seizures during the next week. I have started this dream already. This week, for five days I am staying with a friend while her parents are on holiday. As she also has ME we are great company for each other. The understanding of "not today", and "can I have some peace and quiet for an hour?" is perfect. Over the next 12 months we have already agreed to repeat this experiment, as it has obviously worked and I will try and visit at least one other person too. It has been slightly gut-retching as it has been the first night my husband and I have slept in separate beds, in separate houses. Almost eight years of marriage and we have been inseparable! (I quite like it actually- having a whole double bed to myself!)

So 2013 involves walking, carrying, gardening and visiting... oh and playing the piano. I'm desperate to do that again, to play with full abandon; I used to play for hours at a time, just loving every moment. As with walking and gardening I probably need to let myself go occasionally, then draw in the stays most days and find some discipline! Happy New Year!