Start Rocking!

I can't believe what I've started doing every day. I'm rocking- I might start rolling soon too!

Let me explain further. As you know if you've read more of my blog, I have had a difficult year as far as my core and abdominal muscles are concerned. Having started to really recover from the injuries sustained in the seizure last November I had another seizure at the end of August and then another in September. Worse still I had a sickness bug a few weeks ago and was retching for about 7 hours on a Sunday evening (I actually missed Downton Abbey because of it!). I remember finally trying to get to sleep and feeling my stomach pulsating. So to say the least I've been coping with pain and flexibility and mobility restrictions.

Now to the rocking. Thanks to a friend on a yoga forum I found The Liberated Body Podcast. http://www.liberatedbody.com/podcast/ The presenter, Brooke Thomas, talks to "game changers" every week about holistic ways to own your body and help your journey through the modern world, whether or not you have chronic illness.

The first episode talked about crawling. The change in position, from standing and walking, to being on all fours and crawling, counteracts modern life which does very little walking upright and very little sitting upright. By using screens, even reading a book, knitting or falling asleep in front of the television, our neck is compromised and  bent forward, putting pressure on the nervous and immune systems. So crawling, with the head held high is an opposite pose. Not only does it improve neck strength is helps create a stronger core and better balance. 

By listening to the whole podcast I discovered that babies quite obviously don't go simply from lying on their fronts or backs to crawling; a lot of preparation goes into movement. Crawling needs balance and strength. I found this fascinating as I feel the need to start from scratch myself. Having not walked very much for the last five years without finding pain or set-backs, I want to know the real basics of movement. From practising yoga for almost three years I understand the principles of breath and movement so the term "Rocking" was what appealed to me. Very simply it is being on all fours, like a baby preparing to crawl, then sitting back into child's pose with the arms stretched out in front. The movement rocks backwards and forwards, from table pose, into child's, all the time with the head upright, creating a comfortable curve in the upper part of the spine, and the eyes focused on a point in the foreground. This rocking motion provides the body with a strong and balanced core over time. A baby will be observed doing this for about a month before tentatively moving an arm and leg forwards to crawl into another position on the floor. Follow this link for a great example of the movement http://youtu.be/R_KvPy23qZM

So I'm rocking. Rolling on the floor like a baby will come in time. Rolling side to side and from the front of the body to the back is suggested to give a flexible spine with strong supporting muscles. As my core is still recovering and restricting my movement I will not expect myself to crawl around the house or roll every day. The two men who founded this concept originalstrength.net were personal trainers when they came up with this idea. I am not in that league! As time goes by and I notice my body changing I will do more, less or find yoga poses to complement this idea.

Absolutely Shattered

So my body is going through a shattered exhaustiveness at the moment. I've had it for a couple of weeks I think. I have put on a bit of a front with other people, I even visited family and let the busyness continue around me. But by saying it like it is I've had a better response. A simple example was on our way to our accommodation when visiting our family. A road was closed, which would have dictated a confusing long detour, I decided to knock on a friend's door and ask to stay the night. It was a simple request and when we explained that we didn't know the roads, I was too shattered to navigate and we don't have a Sat Nav, there was no question of them turning us away. We were even offered their bed as they could see how much I needed a good night's rest after a long journey. Feeling guilt and worrying about other people judging me slips from my mind very quickly now and makes my life a lot easier! By showing them love and gratitude there was no animosity- and we had fun that morning over breakfast, giving the mum a chance to cook herself breakfast while we took care of the children.

My body is healing and I realise sometimes it just sits and watches from the inside as the world continues to turn. I feel so much more able to let that happen when I am in control of my environment. That's not always easy, but by giving in to other's whims and living by society's rules I get myself deeper into tiredness debt, so I try to stay in charge and create what I need within other's whims and society's rules. Life can work quite well like that!

My house will be invaded by builders for the next three weeks and it is optimally important that I don't let it stress me or overly influence my routine away from the norm. So simple food, regular rests, leaving the house occasionally with a friend or my husband to see a different view will all be good rules to live by as these weeks go by. I also accept that as it continues, changes and decisions may need to be made and I will be the one who needs a clear head to answer those queries. As it ends (and my bank account is run particularly dry!) I must be prepared to accept relief along with a period of recovery.

If this sounds all too perfect and I appear like a worshipable guru, I offer you that chance to worship!..but I make so many mistakes and only looking back do I see how well I've done to notice those mistakes so soon. By making small changes within my limits and seeing how I could change my approach, then planning ahead, as for the next few weeks, I think I'm doing alright.

(It's taken me so long to write this, sat here at the kitchen table, body collapsing every few minutes, head hanging as I search my brain for words- but I had to note this down as a step in my recovery, a step towards coping better with those confusions I've been handed)

Acceptance Breeds Happiness

In my last post I reported my seizure from November and here in February I report again. For the first time since then I am noticing days without any stomach muscles screaming and I am starting to manage some household chores without subsequent regrets. I've put the washing in the machine; I've thrown food into pots and watched it cook while stirring; I'm sitting at a table typing!!!

What this experience has brought out of me is a realisation that I now have a great habit of acceptance. This has taken a couple of years to build up, with help from various yoga teachers and patience from my husband too! I always thought I accepted my ME and Epilepsy, I got on with life. But I was always thinking, "when this happens in my life and when this happens in my life, I will be truly happy". Yoga has taught me to come back to the present moment, to notice any misdemeanours in my character, with a desire to change them, but with non-judgement. For two years I have been saying to friends who ask how I am, "I am happy". That came from seeing the wonderful things in my life that I wouldn't change for the world. I have a caring, loving husband; friends who are there to help me when I call; family at the end of a telephone line; a garden to sit in; food in the cupboard; clothes on my back...the list could go on and on. I know a lot of people have gratitude diaries which encourage them to write down five things everyday for which they are grateful. As simple as seeing a snowdrop, or walking in the rain; love walking in the rain and crave it whenever there is a rain shower/storm/downpour (which has been quite frequent recently in the UK!) I don't write my gratefuls down but have got into the habit of noticing them as the day goes by and if I'm unhappy then I make myself sit and claw my way through the negativity in my brain to find a few things from the last few hours.

I have noticed that when I am grumpy and unhappy it is usually because I am tired, so laugh at my grumpiness as soon as I notice it (or ten minutes afterwards- I'm not that much of a saint yet!), try to reconcile myself to the situation and realise that because I'm tired I've made a negative statement in my head about everything that has happened in the last thirty minutes (or whole day!) and I am just making everything worse. 

The one other big thing is that yoga has taught me to realise my happiness doesn't have to be connected to the mind or action, I can be happy within before I take action and before I think through my situation. I can lie on my bed and recognise, without words, the true essence of my being, which is always there no matter how much pain or difficulty my life encounters. I find my attention moving away from my head and dissolving into my heart space, indescribable really as it is a feeling of comfort and existence.

So to conclude, my acceptance of the seizure I had last year created a learning curve which found me in a place truly accepting my situation, finding an action which I could take, which could only be rest and NOT over-doing it and finding the happiness in everyday life. So I'm happy!

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.

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 week...at 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.

Holiday

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.

Socialising

   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!