The F word

. . . Living with FIBROMYALGIA

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I was diagnosed with Fibromyalgia, 12 years ago. I now believe that I could have possibly been suffering from it from birth (apparently possible), and hit a major flare up after a personal trauma, which led me back and forth to the GP surgery for blood tests, X-rays, and so on . . .

I had never heard of it before, but I went home and cried . . . with relief, when I was eventually diagnosed by a Rheumatologist. He ruled out a number of other illnesses including Lupus, which has very similar symptoms. He sent me packing with information book.

I then set out on a quest to learn everything and anything I could about my illness. This can eventually become boring. After years of pain relief and sleeping tablets, I have learnt to manage it myself

It is an auto-immune disease, the effects are chronic, but not life threatening. It consists of widespread pain, and bouts of extreme fatigue; imagine the combination of ME & arthritis (which I also now suffer from)

There are no outward obvious signs . . . so us Fibromites usually ‘look fine’ to the outside world. If a little chubby – or rotund,

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It is an ‘umbrella’ illness. I also suffer from migraines, IBS, irritable bladder and a variety of allergies. These are the result of my immune system battling against itself. I am allergic to aspartame (found in most diet products); garlic, latex, and most seeded fruit, e.g. apples, pears, strawberries, even my own hormones sometimes!

I have cognitive problems, usually due to the fatigue. SORRY, WHAT WAS I TALKING ABOUT?? šŸ˜„ On a bad day I have trouble concentrating, or with my memory, or is that a good day?? . . . Gawd, I am confused now!

Amongst the Fibro world, this is commonly called Fibrofog!

A lot of f-ing impact

Weight gain: I have gained about 4 stone. I went from a size 12 to a size 18 in about 4 months when my GP put me on a medication called Amitryptline. I have struggled with my weight yo-yoing ever since.

Billy

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I have lost friends because of it:

– it has not always been easy to be sociable with extreme fatigue. Most people do not understand this, and I can come across as anti-social or just not willing to make the effort.

Not tonight Josephine!

– most people just do not want to hear about it, or evenĀ believe in it. Believe me, I know that it is not as serious as many illnesses others suffer from . . . But it has and does impact on my life, and on those closest to me.

– Some people just see me as fat and lazy! . . . and maybe you would if you met me? I tell you what, though . . . I wouldn’t wish Fibromyalgia on my biggest enemy.

– It has had a big impact on my working life. I could not sustain my last career due to the effects of it. Sitting at a desk at a computer day in, day out gave me extreme flare ups of pain, and migraines. I also had extreme trouble concentrating on projects and meeting required deadlines due to my impaired cognitive functioning. Somedays I used to find myself pushing the mouse around and around the screen, panicking as to how I was going to deliver. A bit like now, creating this blog really.

– I now work part-time and volunteer extra hours to build up my experience and confidence and skills for my CV

– I work in an environment where I move around a lot, and don’t spend any time sitting in one position, this helps to manage flare ups. I also walk as much as possible. My knees are keeping going. I do not want to be taking my kids to school on a mobility scooter JUST YET!

Symptoms & Management

– Widespread pain and very painful tender spots all over body:
– even if I just bang into something by accident it can be very painful. My son kicked me in the back of my calf yesterday, by accident (I hope?), and it bloody well hurt, much more than you could ever expect, or he did for that matter. OUCH
– a memory foam mattress has certainly helped manage pain at night
– I was on pain killers for many years, but they can become addictive, the effects wear off, and some of them made me too drowsy to live a decent lifestyle, they added to the fatigue and fibro-fog. I felt like I was swimming in the fog, treading water, getting nowhere

– Chronic Fatigue, which can come on suddenly, or be accumulative

– Over the years I have learnt to pace myself, and can usually tell when a flare up is heading

– This is where the ‘lazy’ label comes into play. I have to do what I need to, to manage my energy and time, especially now that I have 2 young children to care for.

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– I have to prioritise. Sometimes the housework takes a back burner. I hardly ever iron – Life is too short. Sometimes I don’t wash my hair, I scrape it up in a pony, or add some dry shampoo, or both.

– I have to accept outside help. I am lucky I have a good support network.

– When I have energy, I usually have no time. When I have time I usually have no energy

– I take each day at a time, and try to enjoy it to the best of my ability

– I had CBT (cognitive behaviour therapy), which helped me immensely. My counsellor gave me a copy of RECLAIM YOUR LIFE by Dr Chris Williams, which has helped me keep a good level of PMA. It is my Bible, my go-to for a pep talk to self.

– I try to keep smiling. Laughter is the best medicine :O)

Thanks for listening. Have a nice day now ;o)

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A Night to Remember. . .

. . . or maybe not!
Well, as you know it is just the three of us, myself, ‘the girl’ and ‘the boy’. Well THE BOY has not been well of late. He started with a raging temperature on Wednesday, which has not gone down much in the last three days. I got him to the GP surgery yesterday afternoon, not really sure why I bothered to tell you the truth, as I knew they were going to roll of the standard reply . . . “it’s viral, just administer calpol and keep his temperature down”. I took him as he had started to develop a cough, and yesterday it was the strangest sound, unlike any cough I have heard in a child before. It is now evident that this was mucus related- yuck!
I had no trouble at all getting the little fella to bed last night as he was exhausted. My daughter retired around 8.45 after her usual (or should I say rather unusual but routine) charades.
I went to bed around 11.30pm. Now, with my Fibro I do not sleep well on the best of nights, but I was deep in slumber when I was awoken by THE GIRL screaming. . . u oh, she had wet the bed- Great, just what you need at 2.30am! I didn’t tell her off though as she is only 4, and it is not a regular occurance. I tried her in with me, but as I suspected, she spent half an hour tossing and turning, jabbing me in the back and trying to instigate chatter constantly. So I headed back to her room to remake her bed, thank heavens for waterproof mattress protectors.
So THE GIRL is all tucked up and settled again, next thing, within less than half an hour THE BOY is crying. Well, he is ill and still has a temperature, so I change his nightime pull up, get him some calpol and a drink of water, and then he settles in bed with me. This is now around 4am. At least he is fast asleep in minutes and sleeps through until the alarm.
So, at 7.30am Missy doesn’t really feel like getting up and getting ready for school, and THE BOY is far from well enough to attend pre-school. What is a knackered sleep deprived Mumsy to do? I decided to get THE GIRL ready and packed her off to school, with a little help from the grandparents. It would be more than I could cope with keeping her off and realising she is not ill at all and needs entertaining for the whole day, which believe me, she would! She is the apple of my eye, and super intelligent, but certainly a CURIOUS and CHALLENGING Ā child!
So I decide to return to my bed for a bit more rest, only to find THE BOY had in the meantime vomited all over it, right through the sheets to my lovely comfy treasured memory foam mattress! GREAT! As you can imagine I have spent the best part of the day washing and sorting bedding. THE BOY slept for about 4 hours solid, in his own bed thankfully. He has had very little appetite or energy, but I am pleased to say that he appears to be on the mend, although still rather feeling sorry for himself. He is a male, after all.

New Tipple – bottoms up!

As of yesterday my new tipple of choice is herbal tea!! Well, fruity tea, . . . Twinnings Fresh and Fruity Mixed Berry Selection to be exact.

How I managed to live 41 years of my life without drinking coffee is now beyond comprehension. . . Once i tasted the stuff, that was it, i was an addict!

Over the last few years coffee has been one of my great friends, seeing me through some of my toughest and most tiring times! I have two young children only 18 months apart. . . the preschool years have been both the most chaotic, exhausting AND exhilarating years of my life. Let’s not forget, i arrived late to motherhood. My first child was born when I was aged 38, and the second some months after my 40th birthday.

There was a time during the break up of my relationship that I am certain I survived on little more than coffee, adrenaline and stress!

Thankfully those DARK DAYS are behind me. . . and at the moment I am trying to cut down on my copious amounts of the DARK STUFF. . . although my prefered shade is actually somewhere around Pantone 4645 , once two generous teaspoons of whitener are added.

Caffeine is a double-edged sword. It giveth during the day, recharging batteries and keeping me going, yet it only compounds to my nightly sleep problems. (I have suffered from Fibromyalgia for over 10 years, and now with the arrival of the children, I have hardly had a proper night sleep in over 10 years). Although I have always been strict with myself by setting a 7pm curfew, no coffee to pass my lips any later than.

I have rather expensive tastes. . It has to be DOUWE EGBERTS PURE GOLD. It is one of my only luxuries in life. I don’t smoke, hardly ever drink, hardly ever visit the hairdressers, never get my nails done, hardly ever buy myself new clothes (or anything for that matter. . . see where the MUMSY tag comes in?) So I figure that it is one luxury I can just about afford. I never pay full price though. I stock up when it is on offer at half price. . . yes, no wine rack for me, or drinks cabinet, no, just a well stocked coffee cupboard, I very rarely let it get down to the last jar.

I estimate that I have replaced around 4 out of 10 cups of daily coffee with the fruity stuff over the weekend. I am pleased to say that it is currently satisfying my sweet tooth too, so less biscuit accompaniments required. Let’s see how long I can keep it up. . .