Fibro Life, Fibro Thoughts, Fibromyalgia

“Normals” Attitudes To Chronic Conditions, AKA Some People Suck.


I was commenting on another blog earlier when it struck me that I had way more to say about this than would be appropriate for a short comment on someone else’s blog.

So, with apologies to accordingtoabi@wordpress.com (don’t ask me, I can’t seem to copy paste her page here, nor my comment! Newbie! Stupidie!) here’s an extended version.

Abi was talking about someone she’d known on and off for several years being very confrontational and accusatory about seeing her recently with her walking stick. He said it was bullshit, as if she was making up her need for it.

I said she should have called her post, “The Stick And The Prick”.

Her post was also about how pain experienced as short lived accident-type trauma by what I call “normals” is invariably subject to huge wodges of sympathy and support for the duration, whilst the sort of long term, endless, relentlessly chronic pain that we get seems to bore people after a while. Ditto the inevitable physical disabilities we increasingly get as a result.

I think it DOES bore people. I think it irritates them, embarrasses them. I also think they run out of things they think they OUGHT to say. It never seems to occur to them that it would be kind of nice to have these old “friends” simply ask us if there’s anything they can do to help, or if we need a hug, or some practical help with the day to day stuff we find very hard to do. Even the offer of an afternoon out would be lovely to have – albeit with my now regular caveat of “If I can, I’d love to!”

After 4 official years of severe fibro (dx in 2011 after more than 30 desperate years of asking the medics for help in unravelling my mystery illness), you’d think everyone around me would have got it by now. But they don’t. I still get, “What’s wrong with you THIS time??” (sigh) For them, pain is not a chronic condition – well, if you’re visibly twisted with rotten osteoarthritis, they might just about understand that THAT is a pain that doesn’t go away with time, but fibro pain rarely shows externally, and if they can’t see it, naturally it doesn’t exist.

A sort of reverse ostrich situation.

Some people suck.

And it doesn’t only apply to pain and disability, either.

When I was diagnosed with breast cancer 8 years ago, the sympathy and support were initially massively touching. My house looked like a florist’s for weeks. My phone never stopped ringing. I had more cards than Christmas.

It lasted as long as it took for my hair to grow back after chemo. My then “partner” (please note the inverted commas) was awesome in his love and support in the beginning – right up until chemo started, when he gladly passed responsibility for me over to the oncology department. He didn’t see what it had to do with him. He didn’t sit with me during chemo sessions. He didn’t even drive me there after the obligatory first one was out of the way. After the extra-huge doses of steroids had kicked my 8 1/2st weight up to 10 1/2st, he was even less connected to me. By 13 1/2 – 14st, we were living separate lives under the same roof.

Some people REALLY suck!

The thing that people don’t seem to get is that breast cancer is one of those cancers that is never fully, conclusively, eradicated. Unlike colon cancer, testicular cancer, and probably some other types, too (and I absolutely am NOT diminishing anyone else’s cancer at all by saying this, it’s a terrifying thing for anyone to go through, and it’s HUGE), breast cancer has a nasty habit of coming back as secondaries. Breast cancer’s favourite 2nd homes are the brain, the bones, the lungs, and the liver. And it’s secondaries that do the majority of the killing. Primaries rarely kill. Secondaries very, very often do. The bitch of secondaries is that by the time you’ve developed identifiable signs and symptoms, it’s usually too far gone for any further treatment to be successful, by which I mean you don’t get to hold on to your life for very long after your secondaries have been discovered.

But if I have the audacity to mention my fears in this regard, (with the notable exception of my gorgeous “replacement” partner – well, I wasn’t going to keep the first one, was I? I’m sick, not stupid! – and my GP) everyone just stares at me as if I’m mad, and/ a raging hypochondriac. I am accused of wallowing, of throwing a pity party, of being deficient in strength of character by this failure to move on. I am told that because I have now passed the magic three year mark, and the five year mark, that OF COURSE it won’t come back!

Tell that to the women I’ve met in support groups who died of secondaries ten years or more after their “all clear”.

“Oh! You can live for YEARS with secondaries!” they say. Yeah….like my friend Tina, who developed bone secondaries and was given a 10-15 year prognosis. She went into a hospice on the Friday night, simply to give her family a weekend care-break, and she died on the Monday morning. She’d only been diagnosed a couple of months earlier. She was supposed to have at least another decade to beat it.

I could give you at least another dozen similar examples, and those would only be the people I’ve known personally through different support groups, or “the treatment environment”, as they call oncology departments and their various off-shoots.

It’s not that I think it’s going to get me every day. I don’t. Some days I don’t think of it at all. And I don’t ever wake up thinking, “It might be today…..”, but the prospect – the threat, I suppose – is just THERE, in the background. It’s like the sky, or the weather. It’s just there. All the time. Whether I’m consciously recognising it or not.

Advertisements
Depression, Fibro Life, Fibro Thoughts

Another D Day. Time For The Cottage Cheese.


Typical.

Last night, I wrote a post about depression. I wasn’t feeling depressed. Today, I wake up not only with the usual pain everywhere from the fibro, but also with the Big D doing its tsunami thing and threatening to swallow me whole.

I HATE feeling depressed. I was trying to explain how much I hate it, tears pouring down my face, to my in-laws on Monday when they popped over for a visit.

“I like it when I’m HAPPY,” I wailed desperately. “I really, really hate this! My default setting is happy! I’m a normally happy person!” Sob sob, bawl bawl.

My mother-in-law just stared at me.

“Are you?” she said, somewhat incredulously.

I suppose, given the circs, that was understandable, but really? Has she forgotten all the times I’ve had everyone pissing themselves laughing at my latest tale of ridiculous things that happen to me because of fibro or breast cancer? Does an episode of tears wash away all memories of laughter generated by the cryer? Apparently so!

“Contrary to today’s appearance, YES!” I retorted.

And dammit, she really should be able to empathise here, because she also suffers from depression. I suspect she has a degree of fibro, because she also has the raging insomnia and disrupted sleep patterns that are common with the F Word. When I was first diagnosed with fibro, the rheumatologist said that in one particular study, they the subjects were deprived of sleep for three days – every time they entered Deep Sleep, which is Stage 4 sleep, the stuff you need to get enough of for your body to make repairs, keep everything well-maintained, and gain the feeling of being re-energised upon waking naturally, they were woken up. They were allowed to stay asleep through the other stages of sleep, it was only the Deep Sleep Stage 4 stuff that was interrupted.

After three days, every single one of those subjects was exhibiting all the recognised symptoms of fibro. The musculoskeletal pain, the exhaustion, the excruciating tender points, and, of course, the depression. So, lack of refreshing sleep, whether fibro related or not, makes everyone feel awful both physically and mentally.

Probably why sleep deprivation was (is?) such a popular and effective method of torture.

Anyway. Lately my depression has been especially rotten. Black. Dark. Oppressive. Miserable. Debilitating. Paralysing. Making me cry a lot, and at the tiniest, smallest most insignificant things. I can be sitting there talking to my lovely, wonderful, amazing, beautiful  man (who absolutely does not deserve to be lumbered with such a miserable cow for a partner, poor sod) about something that I KNOW I am really, honestly not that bothered by, and I’ll be bawling my face off, saying, “Honestly, I know I’m crying, but I’m genuinely not bothered that Corrie has been replaced by football tonight, or that the next door neighbours told you you’d put the wrong bin out, I couldn’t care less. It’s just that I can’t stop cr-cr-cr-cry-iiiiiiiiiiiiiinnnnnnnggggggg.”

I’m SO lucky to have him. He knows from my face, even without the waterworks, when I’m feeling like this, and he will always ask what’s wrong. And sometimes, just like everyone else on this planet, I AM upset by a particular thing. But mostly, it’s the fibro depression, and my response is usually a wailing “I don’t KNOW!” Or “Hormones?” Or “Fucking fibro!”

Whilst I have this awesome ability to be depressed for no logical reason whatsoever, when I AM depressed, it’s like someone’s ripped off my outer layer of skin. I am raw. I feel everything intensely. Any emotional sturdiness is destroyed, gone, kaput. Adverts reduce me to tears, ffs! And forget about watching nature programmes. I cannot watch as the narrator is explaining that the lost leopard cub is going to die from starvation unless he is found by his mother, or that the baby elephant born with a deformed leg is going to be left behind and then eaten by a lion, I just can’t. Even good old Gogglebox let me down recently. I dunno what happened, whether they gave someone else content control for a couple of weeks, but there was a hideous piece about domestic pets being stolen and slaughtered for food somewhere in Asia. They showed an open-sided lorry with bars retaining the contents, and these poor dogs were literally thrown into this space, all on top of each other, all jumbled up, and there was one little dog with his face turned towards the camera, still wagging his tail, looking very bewildered but still trying to please…..it broke my heart. I can’t get the image out of my head. Gogglebox is supposed to be funny. It’s one of our favourite programmes, and usually has us cracking up at the antics and opinions of the families being filmed while they’re watching TV programmes. Thankfully, it’s gone back to its usual more lighthearted format, but those dogs will stay with me forever. I’m starting to cry again now, just writing about it.

But I digress.

So today is clearly a Cottage Cheese Day. Ben, my lovely man, went to Tesco this morning and returned armed with my precious cottage cheese, and I am currently sitting in bed, blogging on my iPad, and working my way through a 300g tub of the stuff. How lucky I am to have such a brilliant partner. He works from home, which often leaves me feeling lonely because it isn’t the sort of work he can easily take a break from during the day and early evening (he works ridiculous hours just so he can take care of us), but today he came upstairs to give me a kiss and sit in bed for a little while with me, just to be a comfort while I’m doing my impression of pathetic. Just because he loves me. And even that makes me cry! Aarrrrgggghhhhhhh!

I was supposed to DO things today, to write a couple of letters, make some phone calls, do some emails, sort out some household bits and bobs, and all I’ve done is sleep, lie in bed, and cry. Yes, I can sleep and cry simultaneously!

What a girl!

What a talent!

Not.

I think it might be time to break out the Rhodiola, a herb with great anti-d effects, and the Dopa Mucuna, another herb. Dopa increases dopamine production, another one of our happy hormones. I’ll write more about them another time, because I’m sailing too close to the winds of self-pity here, and I don’t want to do that.

Right.

Now where’s the rest of that cottage cheese……….

Fibro, Fibro Diary, Fibro Life, Fibro Thoughts, Fibromyalgia, FMS, Practical Fibro

The General Plan.


Ok.

So now I’ve managed to work out how to properly categorise and tag my posts, my blog is finally showing up under a search on WordPress for fibro. Hoorah. Consequently, I feel a tiny bit more confident that someone might eventually read a post or two. Or even a line! I was beginning to get so frustrated that I almost threw my new blogging toys out of my pram, but I’m pleased to say I now feel more motivated to continue.

I’ve decided that this blog would be best organised into the following categories:

Practical advice on fibro, including supplements, techniques, things that help or hinder.

Fibro Diary/Thoughts/Life, which will be me sharing my experiences connected with this shitty illness, and will include some (hopefully) witty anecdotes as well as me having a rant on occasions.

Other categories may follow…….

Fibro Diary, Fibro Life, Fibro Thoughts

Effing Fibro, AKA The F Word.


I wanted to call this blog ‘The F Word’, but apparently someone beat me to using that title.

One of my closest friends calls me “A posh bird who swears a lot”, which always makes me laugh. For fuck’s sake, I don’t swear that much! When I do, I tend to repeat myself, because my bank of swear-words really isn’t extensive enough to let forth a string of endlessly different expletive deletives, so it will go something like, “Fucking hell, fucking fuck fuck FUCK!” whenever frustration gets the best of me. Hardly original, and hardly the product of a truly dedicated swearer. Or maybe I just lack imagination!

My parents claim to despise swearing, and those who do it (apparently “balls”, “bollocks”, “Christ!” and “shit” don’t count, although “crap” puzzlingly does, which makes me chortle even more) so I have to filter heavily whenever we speak. Ditto Doctors, consultants and other medical professionals, at least until they’ve got to know me a little.

In fact, it’s probably best to keep it un-sweary whenever you meet ANYone new. But sometimes there is something just SO satisfying about saying “fuck!” that I can’t resist. It’s such a meaty, expressive Anglo Saxon word.

There are many, many adjectives applicable to fibro, but “fucking fibro” also has a second meaning. On those rare days when I feel as though I have finally managed to achieve even a minor breakthrough, I can use it as a verb, and tell myself I am fucking fibro, Lol.

Well, it makes ME feel better, anyway!

Fibro Diary, Fibro Life, Fibro Thoughts

Not A Clue What I’m Doing……


No idea how any of this works – I’m already lost just with trying to find a theme and colours I like! Also seem too dense to work out how to fill in the About Me bit, so I’ll do it here instead.

I had a “mystery illness” from my childhood years onwards, which grew worse and worse, and less manageable as time went on. By the time I was in my 30’s, I was so sick of letting my boss down with this vague “I don’t know what’s wrong with me, I’m just so TIRED, and miserable, and I can’t think, and everything hurts…..no, the doctors don’t know what’s wrong with me, either,” that I left full time work and became self-employed. I figured that being in charge of what days I worked would mean I could go back to bed and stay there when I had those days when getting up seemed like climbing Everest whilst wading through treacle, in a headwind.

I also, naively as it turns out, thought that once someone – a doctor, a specialist, me, ANYONE, had diagnosed what exactly was wrong with me, I could then be fixed. Be normal. Be well. Wake up feeling like I’d actually slept.

My DX finally came in 2011, following my body’s lousy reaction to breast cancer treatments some 4 years earlier. Every symptom I’d ever had intensified, magnified, and became very much UNmanageable. My oncologist, irritated by my constant whingeing about my muscles hurting, referred me to Rheumatology.

The rheumatologist knew within minutes what was wrong, and said so. I snorted with derision.

“You’ll be the first person in more than 30 years of asking who does, then.”

Whereupon he got me painfully up on to the couch, and proceeded to stick his fingers into bits of me that, previously, I’d had no idea could hurt quite so much.

After he’d scraped a screaming me off the ceiling, he told me I had “severe fibromyalgia”.

I looked at him in disbelief. All I then knew about fibromyalgia was that I’d once seen it listed as one of the ailments on the back of a box of Anadin, and that it basically meant “stiff muscles”.

“Stiff muscles??? Seriously?”

“Oh, noooooooooo,” he said. “You need to go and do some research, read up about it. But you’ve definitely got it. You jumped at nearly every tender point there is. Plus I already  knew from your description of brain fog, exhaustion, depression, and wading through wet concrete.”

So, diagnosis complete, I went home quite excited. I was going to be well again! Yay!

But, if you’re reading this because you, too, have had a dx of fibro, as those of us familiar with this vile little illness refer to it, then you’ll recognise the crashing disappointment you suffer when your doctor and your specialists, and anyone else you can find to ask for help, all tell you that there is no cure. NO CURE.

They tell you, at the start of your dx, that it “isn’t progressive.”

Bollocks, it isn’t!

They told me, at the start of my diagnosis, that it IS “treatable” – except that one of my biggest problems with fibro is that my system is utterly shite at detoxifying substances which every normal body finds easy to get rid of and or render harmless, so I react in perfectly ridiculous ways to an awful lot of prescription drugs. This includes every single recommended fibro management drug (you should have seen me in chemo!) so there’s no help for me there.

They also tell you that some people recover, and I’m sure some do. But go onto any fibro forum, and beyond the initial posts of the fibro newbies who gaily declare that they won’t let this thing beat them/grind them down/change their life, there are posts from people like me who have had it for decades, and who only get more sensitive to any treatment options.

I’m all for not wallowing in it, for researching and trying new ways of getting well, I truly am (I even recently got told off by a doctor for spending too much time reading medical papers and trying to get well!) so I hate to be the one who tells you this, but unless your fibro is a) mild, and b) caught early enough that you can tolerate and benefit from the recognised fibro drugs, you are pretty much stuck with this thing.

Sorry! You have NO idea how desperately I wish that wasn’t the truth. X