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!

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:

Hannah's Walk For ME

Fatigue Guide

Gupta Programme

Optimum Health Clinic and Secrets To Recovery

ME Research UK

Gardening

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!

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.