Posts Tagged ‘Work’

Madam, I Have a Cure for Your Fibromyalgia, You Just Have to Wait 20-30 Years

Friday, July 4th, 2014

I had a meeting with the daftest, well meaning doctor I’ve ever met at pain clinic today. I met him after I met the nurse who listened while I described that my pain radiates from my spine like a cruel gnawing octopus, its tendrils creeping up and across my back making it feel on fire, irritated, poisoned; that my tender feet feel every bump on the pavement; that I’m so tired I drive the length of my street so that I can catch the bus; that my skin crawls at the thought of someone touching me or giving me a hug, that I can’t think of the words to speak when talking to people and find focussing hard, and that if she looks at the picture of the human form on the ‘how’s your pain’ questionnaire she would be hard pushed to find any area that’s NOT shaded to show where the pain is. She was great, patient, positive and concerned when I told her that I’m struggling with a decision of whether to reduce my working hours or not, unwilling to let go of the probable illusion that I’m somehow coping if I work full time. So, after I’d spoke to her she sent me back to the waiting room to see the doctor. If only she’d thrown in a description beyond his title, like ‘madly unrealistic’ or ‘never having suffered the kind of pain you suffer’. If she’d done that I would have braced myself.

He smiled and showed me in. His opening gambit was that there was ‘good news’, and that is that Fibromyalgia goes away in old age, NO old people have fibro….(throw caution to the wind there doc, not ‘some’ old people but NO old people). I was so blown away by this ‘fact’ that I said ‘Oh that’s nice for them’ (me not being old and finding the thought of waiting 30 years for a miracle seemed a bit less than ‘good news’). I said my mum has Fibro and he dismissed me, oh that must be ‘secondary’ fibro (which is clearly a totally different disease because an old person has it). He also told me I could think my way out of unbearable pain by thinking happy thoughts and that when I am exhausted and in bed at weekends so I can manage to stay in work in the week that all I actually need to do is ‘find’ my extra energy and it will come. I explained that whenever I ‘find’ extra energy I am actually borrowing it from the next day or day after. He shook his head like he’d heard the spoons theory and dismissed it as horse manure (when I read it, I thought ‘my god that’s my life – I certainly didn’t develop a set of symptoms to fit a theory I’d never heard of) and he said no, no, it doesn’t work like that…I told him he was wrong because that’s exactly how it works for me and I have been digging deep to find extra energy from a shrinking reserve for years and for the last 8 -12 months I have found that I can do less and less outside of work and even the things I enjoy, like my music, are difficult; that I can’t do a big trolley of shopping because I’m exhausted before the trolley is even filled, I can’t continue volunteering for Childline, I don’t go out visiting people, struggle with days out and actually struggle with staying in work now, which is horrifying because it makes me feel useful and makes an important contribution to our income and to my children’s role models, thinking of reducing my work time is an extreme decision for me. He said ‘what you need to do is think happy and then the pain will be less and the energy will be more’. I told him I have been thinking positive for many years in the face of increasing pain which was undiagnosed for most of those years, and that right now the drugs they give me are less effective than 2 years ago and I am in more pain, more often and am more exhausted and that a ‘cure’ of old age is no cure at all, if it’s 20 year away (and if it exists at all – but I didn’t say this). I also told him that when the pain was managed and the exhaustion was under control I am very happy, people would vouch for me, I am very positive without the hindrance of confusion, energy and too much pain. I am going to take him all the leaflets and booklets given to me by his colleague, the specialist who diagnosed me, who told me that there is no cure but lots of things can help (like medication, pacing, reducing stress). All those pamphlets (and the NHS website) say that Fibromyalgia is a condition without a cure, which may occasionally go into remission (not age dependent) but is progressive. The fact is, some people’s Fibromyalgia DOES go away when they’re older, but then again some women find it goes away when they’re pregnant, for so many others it stays and for unfortunate few it gets worse, and I hope I’m not one of those. gah. On the plus side, he did offer me the lignocane infusion. I am on a 3 month waiting list…pain clinic, where you get to wait and think about your pain for 3 months while your drs go on their summer holibobs (yep, that’s what I was told). In the spirit of being fair(ish) I did some research of my own tonight and found this article which is clear that age is not the miracle panacea he would have me believe.

Snip Snip

Thursday, April 15th, 2010

So there I was, sitting in my very uncomfortable office chair thinking about whether to apply for another job, again. In the middle of a difficult decision about coffee or hot chocolate with my mid morning toast I had a phone call from home. I almost never get phone calls from home, mostly because the kids are usually in school, the au pair likes the gym and the dogs, as clever as they are at opening bins, cannot yet use a phone.

Sobbing greeted my ear followed by a very distressed message from my eldest daughter telling me that my youngest daughter, aged 5, had decided to restyle her hair completely, with scissors.

Me: is it bad?

Her: very bad

Me: will I be upset?

Her: I’m upset for you

Me: send photos

A very long 30 seconds pass.

The phone vibrates

the vision of a child's hair after a creative moment with scissors

I Cutted My Hair

(please notice how long it *was*)

I texted back: send me a picture of the front.

30 more tortured seconds gazing in disbelief at the first picture were interrupted by another vibration.

solemn child with terrible self-cut hair

I'm Sorry

(check out the tuft of micro-fringe that no longer hides the solemn expanse of forehead)

I took a deep breath, made a phone call and texted back: meet me at the hairdressers at 5pm

My colleague was almost on her knees in a puddle of unrestrained laughter and piss, obviously entirely at my expense. Thanks chum. I was on the edge of sobbing when I suddenly realised I had to tell Beardieboy. I went over the edge and sobbed. Then, being the woman that I am I made the decision: coffee. I drank the coffee and made another call. Beardieboy answered sounding like he was on top of the world. Poor sod. He went from hyper-happy to utterly appalled in a  matter of seconds. Poor sod. His beautiful child mangled by a misadventure with some kitchen scissors. I refused to send photos and said I’d sort it. I had a plan, it would work. If it didn’t work, in my mind I planned a Stephanie style pink wig. ‘It’s a fun wig, you’ll have fun in it, your friends will think you’re a hoot’.

5 O’clock arrives. The hairdresser took a very deep breath and on at least three occasions put her scissors down and walked away to compose herself. Every time she thought she’d solved it she discovered another hack or tuft and yet more had to come off to blend it in. Meanwhile I sat there rubbing my face like a neurotic. The salon manager came to the rescue with yet more coffee. The coffee helped me, and training evidently helped the hairdresser. She toiled for 20 hard minutes before giving me a brief lesson on styling to hide bald patches. Now I wouldn’t like you to get too close and study this for tufts but with a bit of hairspray this will work. She even has a bit of Parisian chic going on.

A relieved child after a professional snipper has rescued her do

Post Haircut Haircut

A handful of disney hairclips and everyone will think we’ve gone for something radical for spring.  Our house is now sleeping beauty but with scissors not spinning wheels. We ceremonially collected all the offending articles up and we’re locking them in the west tower until she’s old enough to know better and if she still decides to screw up a perfectly good haircut at that stage then good luck to her.