My Life - My Fibro

I've never found it easy to talk about myself or my illness and I think I can count on one hand, the people who actually believe the problems I face and the effort involved in day to day living, and show understanding. It isn't easy, I know, when the symptoms are so many and varied - it confuses me too!  One of my methods of coping, is to keep a notebook (to be honest-several notebooks!) and I try to write in them daily. It gives me the occasional wake up call to see the changes in my mental attitude, my abilities, my levels of pain, my disappointments and  my circle of friends and loved ones. Much has changed in the last few years. At the present moment my body aches all over and I feel very zombie like - you all know that feeling,but one of my biggest problems is the pain I am experiencing in my arms and hands. I say the biggest, because it makes it very difficult for me to type or to write and these are a must on my bad days. On better days, I can maybe take a short walk,...

I am a great lover of quotes and often look to them for motivation, inspiration, wisdom, etc. You would think that at my age, I wouldn't need them, but I think we all need encouragement at some time in our lives - I certainly have. The above quote came up on my twitter timeline and was placed there by someone who became paralysed and remains positive - an inspiration to me! It isn't always easy, is it? My life changed drastically when Fibromyalgia hit me and It took me a long time to realise that I had to adapt to it and live my life around it - I could still have a life, but it wouldn't be the same.  During that 'long time', I cried - I didn't want to give in - I was suffering in lots of ways. Once I accepted that my Fibromyalgia wasn't going to go away, then I began to plan. "How could I help myself?". At that time, movement was very slow and getting dressed was quite a challenge, especially with zips, buttons, etc.; I couldn't lift my ar...

Life has been very hectic this last few weeks, as I have moved house. They say it's one of the most stressful things anyone can do and I totally agree! Moving with a chronic illness only increases that stress. It feels so frustrating when the head knows what needs doing, but the body will not play ball! To cheer myself up, I bought myself a treat - a new bedspread and matching curtains - love them, but my bed has a rail on the end and I had to tuck in the end of the bedspread. Makes a tidy bed - and pretty - but doesn't move out of place and gives me restricted movement. It has made me think of my brother, who has had many health problems throughout his life, due to meningitis and hydrocephalus, and has been given many different drugs. One of the drugs reduced him to an almost cabbage like state; another left him frustrated and angry; another left him unable to think or to deal with life. During these 'spells', he was either in hospital, in an institution; in a locked...

I've never been a time waster, therefore, I love the John Lennon quote  "Time is not wasted, if you enjoy wasting it". I love reading, meditation, playing with my cat, chatting sometimes, sitting on the garden swing - all time wasting, but not for me, because the psychological benefits are worth it. These time wasters make me smile; make me feel good; make me realize that life is worth the effort! Yes, I'm ashamed to admit it, but some days it does feel such an effort to get up! Oh, the first thing in the morning when my head just will not work and I gaze into my wardrobe and see everything, but have no idea what to put on. I sit on the bed, often close to tears, take a deep breath, smile and look again. I go for something comfortable and easy to wear, though I don't really want 'easy' - I want to wear something that says 'I feel good today', even if I don't. The mins is a powerful thing! I have tried choosing my clothes the night before, bu...

When I was diagnosed with Fibromyalgia, seventeen years ago, I knew nothing about it and neither did my doctor. Since then, I have spent hours researching; read books; chatted to fellow sufferers; visited my doctor's surgery more times than I would have liked - and I still know little about it! What I do know is that I have to stay positive; exercise when I can; smile when I can; do when I can! I think that ones my biggest worries, is not knowing how I will be when I'm older and will I be able to make others understand how I am feeling. I recently lost my dear dad to Alzheimer's after spending the last three heartbreaking years of his life in a care home. It was difficult to tell if he was ill or in pain and he didn't always say - we didn't always understand. It's made me think a lot about my own future years. If family don't understand now, how will they then? It's a very unpredictable illness, so I may be worrying for nothing! I may have recovered ...

That first moment when I awaken from sleep, is when the world - my world - is normal. It's that second moment, when the instinct to stretch kicks in and I begin to move in reaction, is suddenly halted, because I've remembered what will happen if I do stretch. The pain, the locking of muscles - the scream. It's also in that second moment that everything else hits me. The people who are missing from my life now and I so dearly miss. The energy I once had, when I could deal with a hundred jobs in a day. The mobility I had, when my body would do as I requested. It's a funny thing, but everyone assumes they know about my illness', because they've read about them, or they know someone else who has them, but they never actually ask me how I feel - how 'it' feels - never. Well, this morning, after little sleep, I feel as if I'm recovering from a battering! My body feels painful and sore from head to toe, but more so, the shoulders and arms. I used to tel...

When I was young, I rarely spoke - little girls were seen and not heard!  But there was more to it than that; I learned that there was little difference between speaking and not speaking, as the results were much the same. I felt the hardness of hand And the coldness of voice. Why am I thinking of this now - today? I have an invisible illness that has an impact on my whole life. What I can eat; what I can do; what I can feel. It does it's utmost to stop me from having a life. If I speak of it, I'm being negative and moaning; if I don't mention it, I must be okay. If I have to cancel arrangements, I'm told that I'm mad and 'abandoning' my quality of life - it seems there's nothing wrong with me and therefore, I should be on medication just for thinking there might be. Again, it's easier to keep quiet, but I face judgement whatever I do. In between the child and the now, I worked, married into an abusive relationship, became a mum, supported and e...

When I was a teenager, I loved nothing more than a banana sandwich when I came in from school, but as I got older, I found they didn't agree with me too well and cut down - I didn't eat one for a long while. Before the fibro', I was working long hours and it eventually began to show, to the point where a customer came in and commented on how tired I looked and immediately retrieved a banana from her bag and said "eat this, it'll give you energy" and I did! I managed to eat them for some months, until again, I realised that they weren't settling on me. That was about fifteen years ago and I've avoided them since, only eating the odd one in the morning. Why am I writing about bananas?  Because I read an article a week ago about the benefits of eating bananas and one of the benefits is that they are good for the digestive system and as I'm struggling to get a grip on my IBS, I thought "why not - in for a penny, in for a pound".   I've ...

Wasn't it John Lennon who said "Life is what happens while you are busy making other plans"? Well, for me, it could be Life; it could be Fibro'; or in the case of today-the dreaded IBS! Wouldn't you know!  Sun was shining this morning and you could feel the promise of a warm summer's day - lovely! I had hoped to be out by ten o'clock, as I needed to catch the post office with a parcel and some letters. It's only a twenty minute drive away and I had psyched myself up to being "ok" and was looking forward to leaving the house, especially as it doesn't happen too often.  Unfortunately, my body had other ideas and I didn't make it out until four o'clock and only then feeling very tentative. It was beautiful out and had warmed up since this morning, but a stroll was out of the question, however the views on the road to the post office are amazing! IBS is so unpredictable and it does make it very difficult to make plans - and to keep ...

I ask myself often, 'how does anyone have the right to judge me when they haven't walked a day in my shoes?', and I have to admit that I have selfishly wished someone could, just for a few hours on a bad flare day, so they might understand a little of what we go through.   It is difficult to feel someone else's pain, but it shouldn't be so hard to care, especially if it's a loved one. It feels very lonely, living with a chronic illness, especially when we're unable to do the things that people expect of us. My life was very full before the fibro' hit and I've had to let go, bit by bit, of all the things I loved to do, including my work. When I was first diagnosed, it was a shock to realize that this illness could change my whole life. I lived alone, had two children at university, a mortgage. It was an epic year in other ways for me, as my mum had a massive heart attack and I was told that I needed a serious operation. Life or Death, I was told. How...

How do we cope with the daily trials of dealing with fibromyalgia? It is a very complex illness and very individual, as it's different for each of us. I've tried to manage mine as I have the other traumas in my life - we all have them don't we? As a child, my 'escape' was to lose myself in nature, or in music and it still is to this day.  I feel complete when I'm outdoors - in the garden or walking, but I can't do what I used to do before the fibro', As a young mum, my doctor suggested I take up Yoga and I shall be ever grateful, as it was during these classes that I discovered the wonder and the peace of meditation. That was over forty years ago and it still serves me well. I also practice mindfulness, which helps me to fall asleep. Unfortunately, it doesn't help me stay there! My day always begins slowly (with my impatient cat egging me on) and once dressed, I feed the garden birds. There are many and they are always waiting for me, with a beauti...

Many years ago, after I was diagnosed with fibromyalgia,  my daughter bought me a blank, unlined book with a bright cover and the word Happy across the front. I loved it and decided that it would be a record of all the occasions when I felt very, very lucky to be me. That was sixteen years ago and it still lifts the darker days; the days when the energy is flagging and It takes great effort just to drag myself out of bed and get on with the day; or the days when the pain is so acute that I try desperately not to let it get the better of me; or those days when the 'fog' takes over and I can barely focus on anything and everything I think or say, only makes sense to me; or the days when my IBS takes over and I'm almost confined to the bathroom. Anyone who shares these problems, will know what I'm talking about. It isn't always easy to keep the smiles in your life when you're living with a chronic illness, but it helps if you can - it's the little things!