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.

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.

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.

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!