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: