24 September 2014

Post for Recipients of 'Triumph In Adversity' Awards


You have received a 'Do Not Go Gentle - Triumph In Adversity Award'

The award is for people who are (or have been) going through a tough time, who have inspired the nominee with their courage, strength of spirit, and perseverance. I'm afraid there's no ceremony, no glittering trophy, no prize; it's just a graphic, just one person saying to another that they are amazing. Hopefully the person who gave you the link to this page also told you why they specifically wanted you to have it!

'Triumph In Adversity' Awards

As I'm sure many others have done, I have in the past attended funerals or read obituraries online, and heard amazing things about the deceased. I've also too often heard the regret of their family and friends that they didn't tell their loved one those things while they were alive. I don't think we should wait until someone dies before we say how amazing they are!

For a long time I have wished that I could nominate various people for some kind of national hero/bravery/courage award, but many of the people I would want to nominate would not be physically able to attend such awards. There's also the issue that many of my online friends live in different countries and I don't know which awards are given in each country; not to mention that I find it difficult cognitively to fill in those sorts of forms, and I've never heard back from any of the nominations I have done! Whilst writing my recent 'Do Not Go Gentle' post, an idea blossomed in my brain, and this post is the result.

Do Not Go Gentle

Grab the cuppa of your choice and make yourself comfy, this is a long one! But it may also be the most important and passionate thing I've written.

I love Dylan Thomas' poem 'Do Not Go Gentle'. (Click here to go to YouTube to hear the full poem read by the man himself.) I know, I know, it's about death, but actually I think it's about life and how you live it. We all have challenges of one kind or another; do you just resign and submit to the hand you've been dealt? Or do you strive for 'life in all its fullness'? And what does that mean for those who are very severely ill, who are already in a living death?

Another poem I've thought a lot about lately is Invictus:

3 September 2014

I Have News! (And, Finally, Some Progress!)

Some of this news is actually 'olds', and I'm really sorry to my family and friends who have been waiting to hear about stuff. It's just taken me a bit of time to get my act together. Also this was meant to be just a quick happy update post but I guess I needed to get a load of stuff off my chest - sorry!

Where to start?

28 August 2014

Note to self...

Do not attempt to eat soup while someone is hoovering. Even with ear plugs in. Especially not when they've just changed your bedding. And especially not tomato based soup that leaves a livid orange stain on the nice clean fresh bedding.

27 August 2014

Parenthood and M.E.: A Difficult Combination

I first realised how much I really wanted to be a mum when the doctor sat on my hospital bed, told me what they'd found in the gynae surgery I'd had the day before, and gently imparted the news that I was highly unlikely to ever conceive, and if I did, there was a high risk of me having an ectopic pregnancy. I howled. Right then and there, in front of this poor kind doctor and with only a thin curtain between myself and the other patients on the ward, the bottom dropped out of my world and I howled and sobbed my heart out.

25 August 2014

Unspoken Words

I've got so many posts that I want to write, so many thoughts I want to express. I feel like the muted, suppressed violin. So far, at last count, I think I've got about 16 posts that I'm in the process of writing, on a whole variety of topics. Some of those are almost finished or partly finished; some are just a collection of thoughts; some are just a title or a single thought that I want to write about. I don't know when I'll manage to actually write or publish another proper post, but hopefully it won't be too long.

In the meantime, I thought I would share something that I found amusing. My

8 August 2014

8th August is Severe ME Remembrance and Awareness Day

Today, 8th August, is Severe ME Remembrance and Awareness Day for all those who have lost their lives to this horrific disease, and for those still living with it.

People who knew me before I was ill may think my situation is bad (and don't get me wrong, I'm not saying it's great), however I honestly count myself as fortunate as I know so many others who have much, much more severe ME than I do. I know of people who have died from it, I know people who literally only have days to live, and I know people for whom every day is a living nightmare.

14 July 2014

Scrambled whistle-stop update

A few people have asked how things are as I've been a bit silent lately, so here goes...

Am having increased cognitive difficulties with typing and working out what to say/how to say it - hence v v badly written post and lack of proper explanations of things - sorry! And have been less able to keep in touch with people by email/text/fb etc lately - sorry for that too! Not good as typing is my main method of communication with most people - phone and in person is v difficult and

The devastating reality of severe ME

I'm not even sure how to introduce this. If you are in any doubt about how severe and progressive ME can get for some people, click the link below to read a post from someone in the final stages of their ME journey. I don't know what my future holds or when/why I will be in my final days; I can only hope that, when my time comes, I face it with the grace and courage that she is showing. She is a huge inspiration to me.


1 July 2014

Sad endings and hopeful new beginnings...

Sad endings...
Today we had the last ever session with our Home Start worker, Teresa. For the last six months she's been visiting once a week to play with my daughter, E, so that I could watch E play - something I really miss. E gets lots of fun and stimulation at pre-school and out with friends of mine, but I don't get to see it; having visits from Teresa has been wonderful. She has given us priceless memories, and has been very encouraging and supportive to me. I can't really believe her time with us has come to an end. We bought her some flowers, and my husband helped me make

21 June 2014


I'm writing this because I just need to get it out of my head. Because it's 4pm and I should be asleep at this time, especially as I haven't slept properly so far today and I'm already exhausted from a tricky week and if I don't get some sleep soon I won't be able to sleep tonight - but I can't sleep. Because I can't seem to process this stuff in the privacy of my own mind and let it go. Because my heart is thumping and I can't seem to relax. Because I feel like crying (ok, I AM crying), and I know it's silly, I know they didn't mean it, I know they didn't understand what they were saying... but I just need to get it out of my head so I can relax and get some rest. I don't know if I'll actually publish this or not, but I definitely need to write it.

People say things they don't mean. I know that. I know they just say the first thing that comes into their heads. I know they're just trying to make conversation, to fill up what they see as an awkward silence. And what I need to vent about is by no means the worst unthinking comment I've ever heard; the prize for that probably goes to the person who told my sister,

12 June 2014

Parenting Problems #2: issues with my daughter's health

OK, so I know that in this post just a matter of hours ago, I said that there would probably be more 'Parenting Problems' posts in the future - but I wasn't expecting to need to write one quite so soon!

11 June 2014

Parenting Problems #1: getting my child to the doctor.

I'm calling this 'Parenting Problems #1' because I suspect there will be many more to follow...!

So. The day I've been dreading has finally arrived: I realised yesterday evening that my 3 year old daughter E needs medical attention. She almost certainly has a UTI. Yay(!) (On the plus side, I'm hoping that this at least explains some of her recent difficult behaviour!)

When I realised about the UTI, my first thought was, "Oh, poor thing!", closely followed by, "What on earth am I going to do about it?!!"

6 June 2014

The Quiet Violin

Grief is a funny thing - ok, bad choice of words, but I can't think of a better one right now. Funny 'strange', not funny 'haha'. Just when you think you've done your mourning and come to terms with things, grief hits you like a blow to the stomach out of nowhere.

People who know some of the realities of my current life are often surprised by how cheerful and positive I am. I guess I'm just an unquenchable (ridiculous?) optimist. Don't get me wrong, I am not immune to depression; I have hit some very deep dark places more times than I wish to remember. However, this current bout of ill health is not the first time my life has been severely restricted by major health problems - I think it's the fourth, if we're counting. So even before the ME, I'd already done a lot of grieving and raging at the world about loss of health; I'd already had a lot of counselling and done a lot of processing. Don't try coming to me for any answers though, I don't have any! Life just is what it is; there is no such thing as 'fair'.

3 June 2014

Is it bravery if you don't have a choice? (Or: Kudos to carers)

In the past few weeks, I've been described by a few different people as 'brave' and 'stoic' and things like that. And that's lovely and everything, but I don't really think it's true. It's not like I've chosen this life. It's not like I'm doing it for charity (sponsored breathing, anyone?!), or like I've stepped in to take on someone else's health issues so that they can live life again - and yes, I know that one's not actually possible, but what I'm getting at is that I didn't choose this. I'm not brave, I'm just someone who is trying to make the best of life in a difficult situation, like countless other people around the world. I don't know anyone who has a perfect life, who doesn't have some issue of some sort that they have to endure. I'm not brave, I'm just human.

You know who is brave, though? My husband. And anyone else who is a carer. They have a choice. They don't *have* to stick around. They could walk away, but they don't. They are true heroes, and they deserve the highest honour their country could bestow.

27 May 2014

ME vs CFS - They're Not The Same!

This is an extremely important topic but one that I am in no way able to do justice to right now! So I'm reblogging this post from a fantastic blog: http://documentingme.net/2014/01/31/me-vs-cfs-theyre-not-the-same/ It summarises the history of the naming of ME, the difference between ME and CFS, and the damage done to both ME and CFS patients when the two names are conflated. Please visit that page to read the rest of this brilliant and important post. Thank you!

Heads up, folks! This is probably the most important post I will ever write. It’s certainly one I feel very passionate about. It’s also a bit daunting, because I really want to get it right, to write this post in such a way that people will understand the truth in what I’m saying and pass it on. So, here it goes.

ME is not CFS. By CFS, I am of course referring to the diagnosis Chronic Fatigue Syndrome. Everywhere you go, you see the two names combined. Many patients themselves abbreviate their illness as “MECFS,” “CFS/ME,” etc. This is incorrect. Doing so hurts literally hundreds of thousands of people around the world. Let me explain. 

18 May 2014

"Your Call Will Beyonce As Soon As Possible"

Communication can be a hit-and-miss affair when you have ME. Between variable cognitive impairment and muscle problems (all the way from slightly weak, or a bit of twitching, to temporary paralysis), things can get a little tricky! Even if you can work out what you want to say and have the physical ability to speak, sometimes there just seems to be a huge block between the brain and the mouth, and the words you desperately want to say just won't come out.

And sometimes, as far as you're concerned, it's all worked fine - but then the blank/confused look in the other person's eye tells you something got lost in translation. I was once part of a hilarious online conversation where we were all recounting funny stories of ridiculous things we've said or done because of ME cognitive problems. One person's story went something along the lines of,

16 May 2014

Unwanted milestones

So today my husband had to feed me. As far as I can remember, no matter how bad I've been before, I've never let anyone feed me. Today I had no choice. And I could only cope with mushed up soft fruit in yoghurt. And I was utterly exhausted afterwards.

12 May 2014

Tethered Butterflies

As today, May 12th, is International Myalgic Encephalomyelitis (ME) Awareness Day, I thought it would be a fitting day to start this new blog. I've put some information at the bottom of this post about the awareness day, what ME is, and links to respected sites for further information - please do have a look at them.

So, why 'Tethered Butterflies'? Well it all started from this image: