My Life - My Fibro

I'm a little late to wish you all a Merry Christmas, but my thoughts over the holiday have been with anyone who suffers from a chronic illness - and those who don't. Having a chronic illness makes it no less enjoyable for me, but a greater effort to ensure that we all have a nice day - a happy day. I do put that effort into all the occasions I spend with friends or family, but Christmas ..... is somehow more important. or, I mean, it seems more important for it to be as perfect as possible and I don't necessarily mean with gifts, though I do often find it difficult to find the exact gift, even though I might spend days looking for it. Does anyone else find it difficult to admit that it's so exhausting - enjoyable, but exhausting. I get to a point where I know that my mind will not cope with any more shopping, or thinking, and I have to postpone until the next day.... and so it goes until one day, I know there isn't a next day and I have to make decisions. The mos...

when I began writing this blog, I did it with the intention to share something of my day to day journey with fibromyalgia, but didn't allow for the exhaustion and head fog that follows me around!  Of course, people tend to find a different reason for my confused days - age, etc., - but I know different and I really wish I had the words to convince everyone of that. Another thing that happens, is that we try to carry on with life and stay independent and that doesn't always help, because we give the impression of being okay and not just to friends and family, but to doctors too. I gave up speaking to my doctor about my health when he told me that Fibromyalgia didn't exist in Scotland ( where he had moved from) and there were no other patients at my practice who had been diagnosed with it. The NHS is wonderful and I've seen it working at it's worst and it's best and I know they can't always get everything right without the staff to do it, but having seen my...

It isn't easy  always, to feel grateful for all we have in our lives, especially when our days are filled by a chronic health condition and one that is rarely believed or understood. As a child, I learned to be grateful for the days when I didn't make my mum angry - it was hard enough on the days when she wasn't! She was a formidable woman and didn't necessarily like her children, or at least that's what she told me, but she had more of a problem with me, even though I was quite a shy, timid child. . I know she would have preferred to have all boys, but it's the girls who helped in the house, saved pocket money, and did the shopping!  The boys - well, they were boys :-) anyway, I'm taking a U-turn again - is that the Fog? That 'lesson' of learning to be grateful has carried me through a lot of dark times. I loved nature and felt at home when I was out walking, talking to the frogs and newts, or collecting insects, so that I could observe their b...

Gosh - almost the middle of May already!  My head is still in a blur and I never seem to be aware of the day or the date and I still have lots to sort out. the trouble with fibro, is that it takes longer to do things and to get your head around things and no one seems to understand that.  I remember when my doctor first told me that I had fibromyalgia. I had never heard of it and he knew little about it, but he did know that it involved muscle pain and chronic fatigue. I was still trying to work full time, lived alone and enjoyed gardening, walking, socialising, etc. and I was visibly upset. he did, however, explain that I would still be able to do these things, but in moderation - what the average person would do in a day, would take me four days!  This week, I've been trying to tidy up the garden and it is a huge garden! I love it out there, but I am finding it quite daunting, because as fast as I tidy one area, another area needs my attention.  I have s...

I can't believe that we're into April!  It's been almost seven months since I lost my partner and, although my head knows that he'll not be coming back, my heart is still waiting - still hoping that it might have been a dream. I go through the motions of each day, but the joy is missing. It's a wonderful time of year and we would have been seeing the garden awaken together, but I have this great sadness of witnessing it alone. It's quite amazing that what looked dead two weeks ago, is now showing signs of life. Birds are nesting and the days are fooling me into later evening meals as I don't realise what time it is. The garden, though, is my therapy and I chatter away while I'm working. It's a huge garden and was beginning to feel too much for the two of us, but I'm doing my best and hope that he'd be proud of me. Unfortunately, I have this complicated friend thing called Fibromyalgia and it doesn't really like me gardening! I'm ver...

Just a short post this morning, but I feel now that it's best to write things down as I think of them. Over the years, I've tried many different ways of easing the pain in my body, especially at night time. Somehow, I cope better in the day, but the nights are testing! I've been the butt of much laughter many times, as I wouldn't stay overnight anywhere unless I had a spare duvet to sleep on and my own pillow. Has anyone tried sleeping in a duvet sandwich? I'm sure someone has. Unfortunately, being sandwiched between two duvets is like being in an oven - it's warming, but soft on the muscles. We need both sometimes. When I was first diagnosed, I would fall asleep with a heat pad across my shoulders, but would wake up in pain after it cooled down. I've tried many rubbing creams, oils, tens machine, etc., and I've read many books on coping with fibromyalgia, as I'm sure we all have.  We're advised to exercise and I know how difficult and painful...

I think today is the coldest day of the winter so far - I just can't seem to get warm today, even with four layers of clothing!  I don't mind building up the layers and have plenty of cardigans for the job, but my hands and face are feeling quite cold! But I'm not complaining, just saying :-) I find it hard to believe that we're almost into the middle of February. where did the last few months go? I get up every morning (thank goodness) and go through the motions of the day, but I feel pretty much like a zombie - there is no joy inside. I still feel in awe at my first sight of the snowdrops, but my partner is no longer here to share that joy. I've been told that it gets easier; I've been told that it's common to feel guilty to be the one still alive; I make myself something to eat, but it has no taste; I begin to sort out his belongings and I find myself wailing at the thought of giving them away. I want him to live; to be alive - and yet, he is, because ...