Painful Debate

I sat today listening to the debate on Myalgic Encephalomyelitis (ME) in the UK House of Commons and realised how widespread this struggle is. I also realised that I have been lucky in my interactions with my GPS and consultants. I have never had to convince my doctors that I am ill. It’s always the other way around. I didn’t have to fight for a diagnosis or treatment. It has been mostly plain sailing since I have been diagnosed with ME. I sometimes wonder if having Systematic Lupus (SLE) prior paved the way for a relatively fast diagnosis or not. Continue reading “Painful Debate”

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Freedom From Disability

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OK. I am now officially angry. It’s going to take work but I am going to try to be as calm and logical as possible. I realise that sometimes the brains of some of the able-bodied are much too busy being “productive” in order to regulate their feelings about the less-abled who happen to share this planet with them.

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Clutching at Straws

Hand-Grasping-At-Straws.pngThere is a saying where I am from that says, “drowning man clutches at a straw”. Its how I would describe my willingness to try any treatment that has been offered to me. I have tried to not dismiss anything that might ultimately help me in my fight against the collection of chronic illnesses which plague me. Continue reading “Clutching at Straws”

Growing Old Disgracefully

I love growing older. Not just because I love birthday parties (which I do) but I really revel in being older. As a child I would always tell people I am as old as I think I could possibly get away with. It was also a challenge for me to see how much I could try to match my fake age to my appearance.

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Love is Caring

This week being National Carers’ Week has brought the task of caring to the forefront of my mind. Not that I hadn’t previously thought about it but rather it has forced me to explore a little more deeply the sacrifices my own carer has had to make.

ff336b87fe170f8f6a06fc02213070ecThis week being National Carers’ Week has brought the task of caring to the forefront of my mind. Not that I hadn’t previously thought about it but rather it has forced me to explore a little more deeply the sacrifices my own carer has had to make. My husband, Mr. B., has been my main carer, to varying degrees, for many years now. However, if you asked him he would say it’s only in the last four years that he has started seeing himself as a carer and even then not publicly. He has always held the view that he was only doing what he was supposed to do.

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‘Too Tired to Celebrate’ Celebration

IMG_0374On the second anniversary of this blog, I thought I should talk about the one constant over those years. I am still TIRED. I am so fatigued right now, I believed its ran laps around me a pretty few times. Continue reading “‘Too Tired to Celebrate’ Celebration”

Closing the Curtains

I Yes!!!! So very true!!!---Chronic illness/Fibromyalgia: was once told that I need to focus on something other than my illness. It was a statement that cut me to the core. I felt misunderstood and misrepresented. I comforted myself that a statement like that could only  be made by someone who does not suffer from a chronic illness. We in the know, know that being ill is our life. There is no respite or days off. Each day is spent either figuring out how to feel better or how to survive not feeling better. It consumes us, every waking or even sleeping moments. Every time you attempt to do something that you use to believe defined you or you found easy and realised it was no longer accessible, it kills a little part of your soul. Continue reading “Closing the Curtains”

“You don’t look ill”

I Image result for chronically ill i'm acting like i'm ok please dont interupt my performancehave lived with an invisible chronic illness of some kind for over 24 years. I was first diagnosed with Rheumatic Fever, then Lupus(SLE), then Cluster Headaches, then Myalgic Encephalomyelitis (ME) and then most recently Fibromyalgia. I have spent most of my adult life battling chronic illnesses without any outward scars to show for it. In my teenage years I was most concerned with not letting anyone know I was ill, fitting into pack.  If asked, all my friends would have told you that I was as strong as I was tall; as fun-loving as I was a kickass and my superpower was definitely convincing everyone I was OK. I became so good at my chameleon-like abilities that when I had flares the people around me were often left surprised and bewildered.

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Self Care and Self Management

wake-upI get up every day and before I even open my curtains there is always one reoccurring thought. I wonder what will my capabilities look like and how much I will be able to get done today without appearing useless. I have found this daily worry could subsequently put a damper on the day before it has even began. It is for this reason I have taken to applying principles of self care and self management to my life. Continue reading “Self Care and Self Management”

Sex and the Spoonie

untitledSince my disability became visible, I have found that people now ask me more about my sex life. Most of the time the questions come in the form of presumptions of its nonexistent state. So at the risk of being indelicate I sometimes have to explain that sex first happens in the brain and mine is still intact and have the capacity for great imaginations. Secondly, all of my organs for having sexy are still excitedly alive. Continue reading “Sex and the Spoonie”