Thursday, 9 April 2015

Medical Neglect of ME

My story

My ME started with a virus in 2011, some months after the birth of my daughter. After the virus had apparently abated, the first symptoms I noticed were numbness, tingling, and pins and needles in my hands and feet; body temperature disturbances; vision problems; dizziness; clumsiness; pain; muscle spasms and weakness; sleep dysfunction; and cognitive impairments.

For 18 months the GPs at my local surgery refused to take me seriously. They didn't believe I had anything physically wrong, dismissed my reports of physical symptoms, and said I was depressed. I knew this was not true, and that although I was extremely fed up and frustrated, this was a response to my physical symptoms rather than the cause of them.

Wednesday, 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:

Wednesday, 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?

Thursday, 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.

Wednesday, 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.