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?? :’( 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 even 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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Pros and cons to blogging . . .

In the last 24 hours, I have rediscovered both the pros, and cons to blogging . . .

The reasons I started the blog in the first place:

- It serves as a ‘dear diary’, it is cathartic
- I LOVE WORDS. . . If I have no-one to talk to, I talk to the dog, or I talk to myself :)
- I have a vivid, creative imagination
- As an older, ex-creative, I wanted to use it as a platform to teach myself the basics of web design
- I thought I could earn some sort of income from it, from sponsorship, advertising etc. . .

Which leads me smoothly on to the first of the cons:
- Once my creative mind is flowing, it is hard to stop it
- If I wake up in the night for any reason, my mind starts thinking ‘creatively’, and I find it hard to get back to sleep; which means I cannot function in my day-to-day life as mum, and at work
- To make a success out of any blog, I would need to give all my free time to it. I have enjoyed making much better use of my free time over the last year, just enjoying life with my kids, rather than writing about them and uploading our lives on a daily basis. This is not a criticism of other parent-bloggers out there. I take my hat off to you! I just know it is not really for me. AS this point proves, here I am at 3am writing a blog post, instead of catching up on much needed sleep

Revealing my blog to my 2 kids this weekend has had a very positive effect. Both of my children have inherited my love of books, literature, words, and both have amazingly creative imaginations. I showed them my blog. I am somewhat a tiny bit proud of it! It inspired my son, who is only in his second year in school, and treats homework as ‘such a bore’, who needs to improve his handwriting in leaps and bounds, and whom I have to push, push, push, just to pick up a pencil . . . came to me with a little book he has made and written (although not all distinctly legible) all by himself!

My children re-invent themselves every day, they are always using their ‘name changing machine’ to become different characters. . . and I suppose that is why I created TwoMumsy. She is a character really, a much exaggerated version of myself. I played on a lot of characteristics, and exaggerated for effect, as I knew it would make for much more interesting reading.

See, I can’t sleep now, because I just want to write, write, write. I suffer from migraines, so I am going to pay for this tomorrow. Imagine if I started a novel (which I would love to one day), I would not sleep for 3 months!!

Five for Friday

Weigh-Scale

WOOP WOOP – Even mummies get reward stickers too! I got my silver 7 sticker this week!

Great, I hear you say? Well, maybe not so? You see it has taken me over 6 months just to lose that half a stone! And this is not my first time of trying. Just call me Yo-Yo.

DeJaVu
As you may have gathered I ‘was’ a member of one of the UKs largest slimming groups. But I have been here before. A couple of years ago I lost 25lbs, as in almost 2 stone, not £25! Unfortunately after a breakup; a breakdown (there goes that yo-yo again); more than a few bottles of plonk, and a fair amount of comfort eating, I was back to square one.

All gone pear-shaped
Now, I do not mind being a ‘curvy’ girl. I do not mind being a size 16. The problem is my knees do! I was diagnosed with Arthiritis late last year, and my first piece of advice was to lose some weight, hence my return to the weekly weigh-ins.

On a lighter note (I wish!) Twomumsy brings you:

FIVE WEIGHT RELATED CLICHES or MYTHS

1 Nothing tastes as good as skinny feels
Well, seeing as I have never knowingly known how good ‘skinny’ can feel, I can honestly say that I don’t know what I am missing? Kate Moss, on the other hand is missing out on pure orgasmic pleasure of the oral variety. She needs to get her lips around a good old cadbury’s flake bar, in my opinion. Go on Kate, you know you want it!

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2 Sex is better than chocolate
I think I have forgotten what sex is like? Chocolate on the other hand . . . I can have any time, any place, anywhere; it is still satisfying when it has gone all soft and warm, and I can make it last all night!!

3 A moment on the lips – a lifetime on the hips
Okay, okay, I am not disputing that there is a direct correlation between what I have put in my mouth over the years (oo eer missus) and the circumference of my hips. I was bottom heavy to start off with, childbearing hips run in the family, even when I was a child! I have heard on the some grapevine or other, that real men like real women. Women with something to grab hold of. Love me, love my love handles!

© Dreamstime

© Dreamstime

4 If no-one sees you eating it – it doesn’t count
What, that’s not true? Oh SUGAR, there goes my next reward sticker. I’ll be in detention next week. Anyway, who am I kidding? Who is likely to see me eating, anything, EVER? That’s not to say I don’t eat, MUCH! It is more a reflection on my sorry excuse for a social life. Add to that the fact that the kids are usually either in school, or in bed. The dog is my only witness.

5 Cider is counted as one of your five-a-day
Okay, okay, I don’t even like cider. Made you smile though – didn’t it? I hope so?! Anyway, I hope you wish me luck with my weight-loss journey. Now I am just off to enjoy a nice big bunch of Beaujolais. ;-)