In Defence of the No Makeup "Selfie"

(Image from breastcancercampaign.org)

If you spend any amount of time engaged with social media, you will have no doubt noticed the rise of the no-makeup “selfie” to raise awareness for breast cancer.

If you spent a second longer, you will probably also have noticed the rise in non-participants moaning about them.

First things first – yes, it’s fine to moan if your newsfeed is full of photos all of a sudden and not whatever it is you are used to seeing there. The odd grump though is a world away from some of the vitriol I’ve seen aimed at the trend.

“Why don’t they donate money instead?” – well, how do you know they aren’t doing so? And given that the campaign so far has helped Cancer Research UK alone raise over £1 million from in excess of 800,000 text donations, I would hazard a guess most people in fact are doing so. Besides which, what business is it of yours how another individual chooses to go about raising awareness of a cause? When last I looked, nobody was attempting to chain you to the bandwagon and drag you bumping and stumbling along behind it.

Cancer (in any form) has touched or will touch us all in some way throughout our lives. Macmillan Cancer Support’s oft-quoted statistic is that one in three of us will be affected by cancer. That doesn’t just mean contracting the disease, but includes the friends and family surrounding us.  The likelihood is therefore that for a lot of the people posting those pictures, cancer is a pretty big deal.

All those questions of “What’s the point?” or the roll of the eyes-inducing “It’s not face cancer so it’s not relevant” sort of comments are in my eyes missing the most important part of awareness – the need for people to talk about the cause.

In broad terms, there’s no difference between posting said photo, moaning about people posting the photos, commenting on how amazing (or mad, depending on viewpoint) people participating in sponsored activities are, or if like me back in January you were in the camp of wondering why Dryathlete was worth sponsoring because if not drinking for a month is really that much of a challenge for you then charitable leanings aren’t going to help you.

The uniting factor of all those scenarios is that no matter your feelings you’re talking about it with others, who may then talk about with further others, and so on and so forth. No matter the method, the end result is the same success. A crucial part of raising awareness is getting people to discuss and engage with the topic at hand.

It’s the same reason people write blogs, join communities, get involved with organisations such as WEGO Health in hosting web chats and Twitter discussions and generally share their experiences with regard to any illness large or small. If you wish to educate people on the topic to achieve better understanding and greater awareness then the first step is the initiation of conversation. Lack of it will only hinder any advances, and silence is the anathema of progress and the bane of understanding.

I’ve seen a few people posting the breast examination poster instead of a photo, stating that “this actually helps cancer awareness” and I’m sure despite the smug tones that this comes from a well meaning place, but it belies a critical lack of understanding of how people engage in social media. If they aren’t interested, then they’ll scroll right on past your informative poster in the same way they will a photo, whatever the caption or explanation you’ve shown alongside it. You may think you’re being more helpful, but in reality you are no more or less likely to promote discussion and raise awareness than the people you’re deriding.

(There you go, me without makeup. I may or may not legally be a ghost.)

It's the same with The Retired Bridgeburner. I could be talking about something absolutely catastrophically world-bending (unlikely, given my last post was about Munchkin) but if you weren't interested you'd have scrolled right past the various places on social media where it can be found without a second thought. It’s the nature of the beast.

Something to remember is that whilst sponsored athletic exploits are phenomenal and certainly worthy of a great deal of respect (and no small amount of awe in some cases), not everyone is capable of completing such feats. Not everyone's health can meet that challenge, and that's no reason for turning one's nose up at smaller efforts. Even things that are relatively effortless are worthy if the intentions come from the right place.

Then of course there’s the darker side of the complaining – I’m sure we’ve all noticed that it has allowed the rather ugly matter of how much or how little makeup women should be wearing to raise its weary head once again. I try to avoid stereotyping as much as possible, but sad to say at least in my experience so far it has been mostly men who are commenting in this way.

I’m going to put this very shortly and simply for the benefit of the prat at the back and all their friends. I’ll try not to use big words because it seems to be a very difficult concept for their very narrow view on life to tolerate.

We are not wearing make up for you. We are not forgoing wearing make up for you. We are not wearing or choosing not to wear makeup for any person other than ourselves.  

When the outside edges of your world view have ceased to shudder, maybe you will consider that by taking the photos as an excuse to assert views on what a woman looks like with or without the accompaniment of makeup (because as women we certainly aren’t tired of the assumption that our appearance is our one and only contribution of note), you’re doing far more damage to the cause of raising awareness about cancer than any of the subjects of the photos are by posting them.

You might not agree with their methods, but they’re doing something, even a very small something to open up conversation. Turning the matter into an excuse to trot out the incredibly tired makeup debate is preventing that conversation from happening.

In conclusion I will offer one thought – if you’re one of the moaners questioning why women aren’t donating to cancer charities instead of posting photos, I direct your question back to you.

Why aren’t you donating instead of moaning?

If you are, then I applaud you. If you’re not, consider that some food for thought.

Still amused by how ghostly I am, and wishing you all many spoons xxx

Adventures in Temperature

I've gained a new symptom.

I think so at least, either new or a furthering of an existing one. Usually my problems with temperature rest in the colder and damper part of the year where I struggle to get warm and end up waddling around in multiple layers looking like a very small Eskimo. It does however mean I get to indulge my love of knitwear, and for that you will never hear me complain! I most recently bought a really thick over-sized purple creation and this sort of thing reliably induces “child at Christmas” mode.

(Over-sized knitwear makes me happy. And a little brave.)

However, the last couple of months my ability to regulate my temperature at either end of the spectrum seems to have vacated the premises.

I mentioned in my post covering exercise that I love to follow it up with a long soak in a hot bath. After my years with a back injury I got used to having the water as hot as I could stand – just shy of scorching – and have continued with this. Recently though a very hot bath has caused my core temperature to rocket upwards to the point of being faint and pouring with sweat. Hardly the result you want from a bath.

Please feel free to leave me a comment below if this is something you encounter, as it’s completely new to me. It makes a sort of sense that if cold temperatures cause problems then hot ones will too, although I survived our unusually hot summer without trouble at all. Possibly it’s the sudden change in temperature provoked by so much as stepping into a bath which causes the problem.

In light of this I’ve also found my temperature is jumping about a bit during the day regardless of stimuli. Layers are fast becoming not only an option but a necessity. The temperature of the office I’m working in certainly doesn’t change, but my temperature just won’t settle.

Having recently been burying myself in Unfinished Tales and The Silmarillion, it’s almost as if Petunia, ever one for extremes, has absorbed the sprawling vistas of Middle Earth and decided “The cold of Helcaraxë or the fires of Mount Doom? Pick one.”

("Fingolfin Leads the Host Across the Helcaraxë" by Ted Nasmith)

Cheers, madam. You missed all the nice gentle places like Rivendell and Doriath then?

This was particularly bothersome last week, it being the time of the month when dysmenorrhea leaves me pretty much gritting my teeth and trying not to scream for a week. Usually I’d grab my wheat bag or hot water bottle and a blanket and just settle myself down for a bit until things calmed down - except that didn't work because I couldn’t stop fidgeting about as a result of my indecisive temperature. 

There are days when I really do wish all these conflicting symptoms would just kiss and make up, or in the very least conduct their squabble in such a way that I don’t have to deal with it!

Thus far I’m resorting to wearing layers most of the time so I have some leeway and having cooler baths, although it seems to depend on the day as to where the line of “too hot” lies. What was fine one day won’t necessarily be so the next.

Just to make baths even more interesting, Misty has recently taken to standing next to the bath with her front paws on the side and looking as if she’s considering trying to leap over the bath and onto the windowsill.

She’s tried that before. It didn't go well, and I was amused with the resulting sogginess even if she wasn't.

Uncomfortable I may be, but at least I’m uncomfortable with the strong possibility of entertainment!


Does anyone else find they suffer at both extremes of temperature? Have you found any ways to make this a little easier? Feel free to comment below.

Wishing you all many spoons xxx

With Strength I Burn

I return from intrepid adventure!

For some five years almost without exception I've made my way to Catton Hall on the second weekend of August for the Bloodstock Open Air heavy metal festival. I went along last year still undiagnosed and for the purposes of brevity let's just say it was an unmitigated disaster as far as health goes. Armed with lessons learned, a diagnosis and a new approach I've been waiting for this year's festival seemingly all year for a chance to unwind and spend time with friends I only usually have that once-a-year chance to see.

So, what were my precautions?

To start I don't think I've ever packed so many clothes for one weekend in my life, and as a typically low maintenance sort of person this did leave me somewhat boggled. However the key for me is to never allow myself to get cold, so layers and many of them are the order of the day. I'd also packed for every extreme of our wonderful British weather - sun scream, after sun and sunglasses wrapped up in a waterproof certainly seemed typically British enough to raise something of a chuckle from me. I packed the heat gloves, painkillers, a heat pain relief gel and a few other things in an attempt to cover all my bases.

The strange thing was I never needed them.

(The aviator twins.)

Now I don't want to give the impression that I spent three days bouncing about like the Duracell bunny and somehow came away unscathed. I was in fact exceptionally well behaved and spent a good deal of time sitting down relaxing and taking things at a very leisurely pace. I also cannot express the kind of difference being in a hotel makes. A hot bath and a comfy bed really did solve most of the problems of the previous year, and there's nothing like sitting up until 2am with tea, biscuits and girly chatter to put you in a very relaxed and glowing sort of mood for the next day's festivities.

I have to stress another large bonus was knowledge of a brilliant food stall to go and eat at, thereby avoiding stereotypically questionable festival food. Given how funny my insides can be on a day to day basis, the existence of the Deli Kate stand is and has always been nothing short of a god-send.

More than anything though, I was conserving my energy for the next to last set on the Saturday - the one and only Avantasia. I confess I became very silly indeed for that hour and a half and I'm definitely starting to feel the aches and twinges which precede a flare up as I write. I've said before some things are always going to be important enough to be worth it, and their first UK appearance certainly counted amongst those rare occasions. Their set was only topped later in the night by the announcement of Emperor for next year - yet another band I was convinced I would never be able to see. 

I make quite a big thing on this blog of psychological welfare and the crucial role it plays in the battle with long term ill health. Nothing could have proved this to be true more than my festival experience this past weekend. Not only did it mean spending time with a very close friend I don't see as often as I'd like since moving, but more important still it meant reuniting with what I've increasingly begun to see as my second family. I'm fortunate in that I know a lot of truly lovely people who attend the festival and wiling away hours on talk, laughter and general shenanigans is an incredibly large part of the whole experience for me.

There's no getting away from it, I'll have a flare later this week which will probably be quite a spectacular one, but the fact Petunia held off the spite for three days so I could enjoy myself means it will all be completely worth it. I don't think I've ever been grateful to her before, but there's a first time for everything. Common sense dictates attendance is a silly idea, but I was pleasantly surprised at how relatively healthy I remained throughout the weekend. Even had that not been the case, I adore this festival and it's something I am just not prepared to give up unless it becomes absolutely impossible. As regular readers will no doubt have realised, I am not one to quietly admit defeat, and whether it be fluke, happy accident or in fact a result of all the changes and planning I think I've been proved somewhat right on this occasion.

In conclusion I can say only that planning, caution and common sense will get you so far, but friendship and doing the things you love (and hang the consequences!) can sometimes take you even further.

(Roll on Bloodstock 2014...)

Wishing you all many spoons xxx

30 Day Chronic Illness Challenge: The End is Nigh!

Day 28: Name five things you have achieved despite your illness.

1. Holding down a job

I'm on short term temporary assignments at the moment, but touch wood chronic illness has not led to my being unable to work. It's something I am not prepared to part ways with unless absolutely necessary, as having a job for me is an incredibly strong link to "normality" as it were. It isn't always easy, my sickness record is far from perfect but luckily I've worked in some very understanding companies thus far. Long may it continue.

2. Making it to important occasions

I've had three weddings this year with a fourth coming up. The law of probability would suggest I was bound to have a flare up for one of them, but this has not been the case. I sincerely hope this hasn't jinxed the fourth one in just under three weeks time! I've certainly been worse for wear after all of them and needed a lot of rest, but it has been such a lifter to me to get there for each one.

3. Remaining active

I might not be as vigorously active as I was and the exercise certainly has changed in method, but I've been really pleased that I've been able to keep some of the momentum going. Pilates really helps against the deep seated aching and morning stiffness, and I am incredibly grumpy on days when I have to give in and accept that it wouldn't be a good idea to make the attempt. Mostly I try to do at least a part of the workout every day, except for the one week a month when dysmennorhea makes it impossible.

4. Writing the blog

Blogging in such a focused way wasn't something I'd ever tried before and I had my doubts as to how long I'd be able to keep up momentum and find interesting content to write about. Thus far though it's been a far more natural process than I expected - I've never really had to force it or struggle for content - and I've thoroughly enjoyed both the writing and the discussion it provokes.

5. Grim determination

There are days, and I'm sure we all have them, where I just want to go back to bed and give up because it all feels too damned difficult. I've never actually let myself yet. I'm not sure where all this willpower has come from (I suspect it was always there and just needed a bit of a focus) but I'm certainly not complaining.


Day 29: What has helped you cope with the stress of the situation?

I'm blessed with a really strong support network around me and their presence actually tends to lead to me asking for help less. That sounds odd, but the knowledge the help is there should you need it is a great comfort in itself. Mostly though, it's an unwillingness to give in and be overwhelmed purely because of the flare up I know is waiting around the corner of that particular road. Stress, worry and anxiety are not kind of conditions like Fibromyalgia.

That isn't to say I never lose my temper any more and that I never worry about anything or get upset - of course I do - I just try to keep a very firm hand on it. I've learnt over time to be quite in tune with what I need to do to alleviate stress and I make quite a conscious effort to switch off and do some of those things until I feel better.

Usually it's escaping for a while with a book - now that was a surprise to you all wasn't it?

Another big aid for me is the involvement I have with the wider chronic illness community. Having people with the same experiences to talk to and bounce off is both a comfort and a pleasure.

(My idea of heaven - image from jebbie74.wordpress.com)

Day 30: Finally, starting at your toes and working up, name each part of your body and how your illness has affected it, followed by something you like about that part of your body.

Am I allowed to just get away with "Everything hurts and is a bit broken but all will be well?"

Generally speaking, all of me hurts and gets stiff and unhappy. My knees, hips and shoulders get particularly grumpy. However, I do like my body a lot more than I ever did before. I spent too much time as a teenager (like many of us) caring about what I looked like, or possibly more what other people thought of what I looked like. Now I'm just appreciative of all the things my body can do despite the fact my immune system is attacking it. I really appreciate its strength and flexibility, and as an aside with all this exercise I'm in the best shape I think I've ever been in. I'm not sure why becoming ill was such a trigger for losing the superficial worries but I'm grateful for it.


That's it folks! Challenge over. What did you think of it? I'm considering writing a new one for next year to try and iron out these repeats, and I'd love some feedback or suggestions for alternative questions - the more the merrier!

Wishing you all many spoons.

30 Day Chronic Illness Challenge: Day 23 and 24

Day 23: What do you say to yourself when you need a pep talk?

It could be a good deal worse.

I know, I'm committing a terrible act of cliche. However if it isn't broken, don't fix it.

There I go again.

Quite honestly though it's a mixture of that and quietly thinking about everything I either have managed to do or know I can do in the future. If we present the coin of chronic illness, I believe either outlook of looking at what can be done or thinking about what can't be done are very much the two sides.

Also as regular readers will no doubt have noticed, I tend to find something in the situation to laugh at. Getting simple words mixed up, misplacement and loss of things which were in your hand all the time, random physical quirks and every other colourful part of my conditions are at the same time somewhat depressing and downright hilarious. It's to my mind at least a matter of where you choose to focus - laughter is healthier for me so I lean towards it. That isn't to say I don't have low moods or bad days - of course I do - but for the most part I try and make the decision a conscious one.

I remember a teacher once telling me that the way you respond to the question "how are you?" can actually affect your overall mood. If you say "not great" then you'll feel somewhat downcast afterwards. "Okay", "pretty decent" and such are better, but if you make the transition to saying "good" or "great" then you'll feel better.

That isn't to say I lie on a bad day - I don't believe there'd be a great deal of point to that approach - but it's something I do try to keep in mind. Whether it works because the observation is a true one or because I expected it to work after hearing about it, I'm not overly concerned. The fact it does work is good enough for me.

(The only option yielded by a "smile" search in Google which wasn't at least a little vomit-inducing. The things I do for you, lovely readers!)

Day 24: How have you managed to juggle your social life through your illness?

Through the good fortune of having extremely understanding friends.

When I decided to cease bothering with alcohol to see if it would calm bowel issues down a bit - this was before having any inclination about my Interstitial Cystitis - I met with a couple of people who delivered the "YOU DON'T DRINK??!" exclaim of surprise with rather the same manner I'd have expected if I'd announced I'd discovered the meaning of life.

Now everyone's choices are their own and I appreciate it was much easier to give alcohol up coming from a place of never really having caught the "bug" if you will. I'm generally not a terribly judgmental person by nature, but the people who seemed to equate giving up drinking with loss of a limb really make me believe they need to take a good long look at themselves.

That thought aside, my friends were incredibly understanding that as a sober person there comes a time in any night when everyone else is too drunk for you to still be sober and I'll take my leave. I'm absurdly grateful in the face of all that ridiculous shock for the way this was just accepted and not even once thought to be a problem.

I'm lucky in that I am no longer surrounded by people who read an ulterior motive into my sudden cancellation of a get together, or those who think the correct way to respond to my being too ill to meet them is to make snide comments about their own comparative importance in my eyes. I've said it before and I'll say it times many again no doubt.

You don't need to tolerate people like that. If they can be shown the error of their outlook, then educate them. If they can't, don't waste valuable spoons on fruitless endeavour. Give your time to the people who deserve it.

30 Day Chronic Illness Challenge: Day 18

Day 18: Do you think you have become a better person through being ill? Explain

I have mixed feelings about this. I understand the way in which the question is meant, but I’ve also seen it tossed about very lightly in the past and so it makes me a little wary.

For example, I once knew a person who had something which lasted a fair few painful months and was thankfully fixable. They said very flippantly to me that being ill had made them a better person, but then continued to be the epitome of lack of compassion and sensitivity to the point of preaching to others how much worse their situation was and had been. Despite their belief to the contrary, I don’t think their period of ill health made them a better person at all.

The point of this anecdote? It isn’t something granted purely by the state of being ill as that individual seemed to think. It's not an automatic diversion onto a different path. To me being a “better person” as a result of being ill is about the way in which you look at the world and the things you say being different.

(Yep, sure. Image courtesy of studioknow.com)

Am I a better person? I’m not sure. Certainly there are aspects of the way I think which are different than before. The main thing I could hold up as “better” is that having an illness classed as invisible has without doubt taught me to be less judgemental purely based on what my eyes can see. If I ever feel like dismissing something as untrue, I find myself stopping and considering what I felt like when people accused me of making the whole thing up. So I suppose I’m a little more open minded than I was.

The example most people seem to give for this question is that they’ve become more compassionate. I’m not sure if that’s true of me or not as I think I’ve always been compassionate and ready to listen. I would say that I’m more patient with things I don’t understand now than I was.

As a person I struggle to call myself a “good” person no matter what anyone else tells me – my aforementioned perfectionist streak sets itself squarely in the way – so I have the same problem in calling myself “better” too. Maybe someone will read this and give me a frank assessment!

30 Day Chronic Illness Challenge: Day 15

Day 15: What would you say to people newly diagnosed with this illness?

Research, research and more research.

One of the things you will have to get to grips with quite early on is the fact you are going to have to do most of this by yourself (unless you are extremely lucky in your doctor and/or specialist), so the best thing to do is to get on the internet and do some research about different ways to help yourself.

For Fibromyalgia I very much recommend (if you're in the UK) FMA UK. They are a registered charity run by unpaid volunteers to help further the cause and raise awareness of the condition. As well as offering information on the condition itself they have some fantastic resources to help you find the right medical attention in your area and also to find local support groups attended by and run by other FM sufferers.

Interstitial Cystitis has been thoroughly de-mystified by The IC Network, and one of their key resources and probably your most sensible first port of call would be their 13 page food list. Grouping foods into "Usually Bladder Friendly", "Foods Worth Trying" and "Foods to Avoid" the list is a wonderful resource to help you start getting to grips with what you should start eliminating in order to hopefully calm the irritation down.

Whilst the internet definitely has its faults, I think it's a invaluable tool for patients of long term oft-misunderstood health problems. I recommend finding blogs, forums, online groups and if you're a little braver sites like Health Rising who keep track of the latest developments in research and treatment options.

It's also a key thing to bite the bullet early on and start to be firm with your doctor, or find another one if your usual one is obstructive. You as a patient have the right to request certain treatment, and crucially you always have the right to a second opinion if you are not happy. The sooner you can start to be a strong advocate for your own health, the easier the process will start to be.

The biggest key point though? You're not alone. There are plenty of us out there who are ready to listen and to try to help you.

Don't suffer in silence when you don't have to.

30 Day Chronic Illness Challenge: Day 13

Day 13: Has your physical illness had any effect on your mental health? Explain.

My inner child really wants to answer any statement ending in "explain" with "No!" However, for the benefit of my lovely readers I shall behave myself.

I don’t think something so all encompassing could *not* have an effect, really. I think for me it has manifested in two ways – and on a side note, I think I’ll have had my fill of self-examination for a  good long while when I reach the end of this challenge!

I am by nature a bit of a people pleaser, and all those tendencies were heightened dramatically for some time after falling ill. As much as I’m trying to tame it I do have a bit of an impulse to put myself out and not speak up to make it easier for everyone around me. With that in mind, as mentioned yesterday the thought of having to explain why a particular situation is a problem to someone unfamiliar with my health fills me with absolute horror.

I’m working on being more assertive with this – you do I think eventually arrive at a place where you realise your health is too important to play meek and mild with it, and pretending there isn’t an issue when there is helps no one.

To be completely candid, I’m also not the queen of self confidence in general. I’m not virtually crippled with lack of it as I was when I was younger any more – I’m told I’ve come a long way in the last couple of years in particular – but I don’t think I’m ever going to be a tremendously forward or assuming person. It’s not in my nature, and to digress slightly I don't think that's a problem. I really resent this idea that we should all be super confident and super socialised - who would get a word in edgeways if we were all the same in that regard?

So whilst the issue definitely existed beforehand, falling ill very much extended talons of self doubt and anxiety. I’m no great beauty but even so, I could do without the bloating, facial rashes and the haggard sunken look I briefly took on. Would that be OK, body?

Not a cat’s chance in hell? Oh.

Physical appearance aside, I did go through a stage of feeling guilty and miserable in response to it all. I felt like I was a problem for the people around me and I did go through a horrible phase of fearing to talk about it for anxiety about the way it would be perceived. Thankfully it didn’t take me long to realise that firstly I needed to speak about it for my own well being, and secondly that doing so in a wry and joking fashion not only proved cathartic for me but also seemed to have a calming effect on those around me – if I was able to laugh at it then maybe they didn’t have to worry so much.

On the flipside I’m naturally a very determined and positive person and the attitude of “you won’t beat me” spread deep roots very quickly – it gave me something to really sink my teeth into, and a chance to unleash my very best stubborn tendencies. Since then I’ve almost turned mulish digging in of heels into an art form.

As self-deprecating as it probably sounds with the way I write, I view this as something good. It has (touch wood) kept the wolves of “becoming my illness” and ending up a spectator of life far from my door.

A tidbit - from this attitude came the name of this blog. In a round of messaging which made my inner nerd far FAR too happy, some of my fellow Malazaners on Tumblr named me a Bridgeburner.

I'm giving up. I've already won at life!

(This so beautifully encapsulates my attitude. Image courtesy of sparkplugpeople.com)

30 Day Chronic Illness Challenge: Day 12

Day 12: Briefly explain to a healthy person what it is like to live with this illness.

This was again a surprisingly difficult question to answer. Outside of family and close friends, I don't tend to explain very much to healthy people. That's not because I expect adverse reactions, but just because I'm far more comfortable explaining myself to other people afflicted with ill health because the oddities aren't quite so strange to them.

Fibromyalgia

If you’re a fantasy literature fan like myself, you’ll no doubt have come across the concept of wizardy folk who can make people “feel” pain by some sort of nefarious means.

It’s like being followed around by one of these dastardly characters, who’s invisible and bearing a grudge.

In more mundane terms there are well over sixty different individual symptoms which are recognised to be a part of FM or to frequently exist in co-morbidity. My main issues are the very typical deep seated aches and pains with accompanying stiffness and loss of dexterity, unreasonable fatigue and exhaustion, bowel problems, sensory overload (particularly sound), cognitive dysfunction (“fibro fog”, impaired memory and concentration and inexplicable blank moments), pronounced dysmenorrhoea, difficulty regulating my temperature and phases of severe allodynia, both static and dynamic.    

Oh, and if you have ambitions in the Game of Thrones I suggest not being a Stark. Inevitable though “winter is coming” might be, it’s damned unwelcome for FM patients.

Interstitial Cystitis

You’re not attached to unbroken nights of sleep and non-hyperactive bladder function are you? Good, because in terms of IC the logic of those two normalities does not compute.

Before being placed on medication which has thankfully calmed things down a good deal, I hadn’t had an unbroken night in nearly six months. I was up four or five times a night every night.  

Although it’s not entirely accurate the best way I can think of to describe it (at least for me, although I’m  not a yardstick as mine isn’t severe) is to think of having constant symptoms of a low-grade water infection, accompanied by the existence of a tiny little person with a hammer who has decided your kidneys make handy anvil substitutes.

As a result I have to be careful what I eat and drink and the goal is to limit exacerbation and irritation as much as possible. For me this means eliminating anything citrus – I cannot put into words how much I miss fresh orange juice in the current glorious weather – alcohol, carbonated drinks, cranberries and any derivatives and limiting caffeine intake to a minimum.  There are plenty more, and the aim is to eliminate acidic substances from the diet to sooth the constant irritation.

In closing, I’ll offer this take on autoimmune disease because if nothing else it made me chuckle:

 

(I am far too easily amused. Image courtesy of quickmeme.com)

 

30 Day Chronic Illness Challenge: Days 7 and 8

(I was back at home in Sheffield for the weekend, hence the double-up for the day I missed!)

Day 7: What was the biggest realisation you've had?

This was a two-fold realisation I think - firstly it was the discovery that nobody can truly understand the nature of a chronic pain condition unless they are experiencing it themselves and that it isn't my fault for poor explanation or not quite being able to articulate it in a way from which an epiphany could spring.

Secondly and I think more importantly it was that this is, in fact, not always a big problem. As long as I can make the people who need to understand do so - and I really have adopted a "take no crap" approach to that - I'm fairly accepting of the fact most people can't really understand.

Providing nobody outright tries to accuse me of lying, or tries to assert that they know better than I do about my own body then I really don't mind most of the time. I'm almost uncharacteristically assertive with those who are on the "need to know" list - my work, for example - but otherwise I revert to type as a very un-showy individual and actually don't really want that many people to know and understand in depth and detail what's happening in my weird and wonderful body and brain.

Unless of course either does something which has colossal comedy value - then I think that's fair game to share. I find laughing at my chronic quirks soothing and helpful, and the gift of laughter should be shared as much as possible in my view.

And if I ever particularly need attention brought my way (illness-wise or not), shouting "I've got a plan and it's as hot as my pants!" will usually do the trick!

(Blackadder references - both brilliant and necessary.

Image courtesy of www.disgracejones.com)

Day 8: Where do you see yourself in five years time?

I really do despise these sorts of questions. 

Most of the reason is that I really don't know. I achieved one of my main wishes this year in moving in with my partner in York, so I suppose I've rested on my laurels a bit since then. It's hard to make this entirely illness specific as well, as is often said incurable ill health does touch on and entwine with all aspects of your life. 

I'd like to be in a job where I'm happy enough and with enough leniency in key areas to allow my health to remain at optimum level (which has not been happening recently) - having this stress reduced is a very big priority as I am determined to hold down a full time job. It's a very large point on which I am not prepared to budge unless my health were to get significantly worse to the point where it would be unfeasible. To have an environment conducive to good mental and physical health and still be in a job which I find intellectually challenging sounds like a large ask, but I don't think it's impossible to achieve. 

One of my other long term ambitions is to take on a big walking challenge for a Fibromyalgia charity. Not everyone is physically capable of undertakings such as this in the name of the charities they hold most dear - that's the nature of chronic illness - but if planned and trained for carefully I believe I can do it. I've also always been one of those people who feels that those who can essentially should. I've looked into the Yorkshire Three Peaks and also into a 26 mile walk over the border from my native Sheffield in Derbyshire in countryside I am familiar with as I spent much of my childhood and adolescence exploring the wonderful Peak District. I am in no position to do so this year and probably not next year - training up for something of this nature would be a huge long term undertaking, and has to be preceded by what I've previously mentioned in terms of getting settled into healthy and challenging full time work. 

So, there you have it. In some ways I have never been a person who is content to dream small. 

And speaking of dreaming big, after 77 years we have a British Men's Singles Wimbledon champion. I'm not a huge tennis fan but I can always get behind a British champion of any sport. I will round up my thoughts for today with saying well played and well done to Andy Murray.

(Well deserved and a long time coming. Image from Tumblr, source unknown.)

30 Day Chronic Illness Challenge: Day 2

Day 2: How have these illnesses affected your life?

You’d assume this would be an easy question to answer, but it turned out to be somewhat difficult.

I think the simplest difference to explain was that prior to falling ill I was in the habit of tearing about at top speed doing anything and everything with little thought to consequence – a good night’s sleep would fix everything, right?

Now I have to plan carefully, allowing for day to day fluctuation, proximity of activity to other planned outings, weather and other factors. Nothing can be undertaken lightly any more. On the worst days I struggle to do even simple day to day tasks as the pain and fatigue become overwhelming. Thankfully I seem to be having less of these since I moved up to York to lose my weekend round trip of 130 miles to see my partner.  

Like many other people I’ve spoken to my social circles underwent some dramatic changes. For whatever reason not everyone wants to stick by the chronically ill – I’ve moved well beyond the point of wasting my time being angry about it. Instead I choose to focus on the amazing people who either stayed by me or stepped to the fore and became fast friends. It’s hard to feel negative about the changes when faced with such overwhelming reasons for positivity.

I think by far the hardest thing for me to accept was the dramatic effect on the things I loved to do with my spare time. I finally had to give up my long-held hope of ever returning to horse riding as there isn’t a chance of my being able to handle something so high-impact, and one fall could do tremendous damage long term. My creativity is not being wholly satisfied as my hands don’t allow for long periods of work (I’m a sketcher primarily) and a lot of the time I cannot summon the requisite levels of concentration. I had planned to create a Dungeons and Dragons inspired triptych (I can see you judging, desist at once!) for our flat but I haven’t even been able to begin yet. One day!

(A previous sketching effort - Sonata Arctica fans may recognise an attempt at the Reckoning Night cover.)

 

I am however tremendously lucky in a lot of ways in that I’m still managing to work and have a social life, albeit different to before. I was never a big drinker but now cannot drink at all – alcohol has even started to smell “wrong” to me after being sober for 18 months.

 

I can still exercise (in fact that’s the only reliable pain control I’ve found thus far) which is a blessing – I led a very active youth and I’m well aware I would be driven crazy by inactivity. However, having to exercise to avoid future pain has sucked the joy out of it for me, but my partner and I are about to start going to jive classes and that will give me something to do purely for fun again.  

 

Also, it has given me the opportunity to write this blog which is both cathartic, an excuse to be somewhat creative and a chance to meet and talk to other Spoonies. Whilst I started the blog in the hope of being able to help others I’ve actually grown quite attached to it for my own reasons also.  

So in summary I would say whilst the effect has been profound, it could be a lot worse and I'm very grateful for small mercies.

The Retired Bridgeburner: 30 Day Chronic Illness Challenge

This is something new for me, a challenge to blog for TRB every day for a month rather than just once a week. I also thought this would be a good opportunity for readers to get to know me a little better in somewhat quicker fashion than reading my more essay-like posts.

I'll still write longer posts as usual when ideas come to me, but expect a post a day for the next 30 days and I'll see how constructive I can make them.

Day 1

Introduce yourself. What illnesses do you have? How long have you had them?

I'm Hannah. 23 year old Brit living with my partner in historic Jorvik.

Tea monster, fantasy fanatic and spoony. Arguably spent far too much time slaying dragons.

(Me!)

I have Fibromyalgia with associated Costochondritis and relatively mild Interstitial Cystitis. I also have some sort of undiagnosed bowel issue (I personally believe it's a food intolerance of some kind, and I'm saving up for some lab tests to start the ball rolling to that end.)

It's hard to pin down when they appeared precisely. I started up with bowel problems and general malaise and tiredness just over two years ago, and because we have IBD in the family I spent about a year under a Gastroenterologist who unfortunately (or fortunately, depending on how you wish to look at it) found nothing. After the first six months or so the fatigue worsened and general all over aching and pain began to be an everyday occurrence. Phases of poor memory and concentration started to recur around this time also.

Around a year ago I developed what seemed to be an incredibly virulent and recurring UTI. Five courses of antibiotics later and it refused to vacate the premises. After a long battle I managed to obtain a referral to Urology, who listened to me talk through the chronology and symptoms for five minutes and diagnosed me on the spot.

I firmly believe if it hadn't been for an accidental (and fateful) change in the GP rota at my surgery the Fibormyalgia would be undiagnosed to this day. After listening to me the new GP did some reading about chronic pain conditions and came back to me with the pressure point test. A couple of minutes of me virtually bouncing off the walls later and we had our answer.

At the moment I'm taking Amitriptyline for the Interstitial Cystitis and a somewhat demanding exercise routine has been the only relief for the Fibromyalgia so far.

So there you have it!

Elementary, my dear Watson*

I'm sure many of you will have seen the article below in the last week or so, as it marks a possible breakthrough in research for Fibromyalgia:

Doctors confirm Fibromyalgia is not imaginary

In all honesty I have some difficulty with the article, as it seems to use the phrases "nerve endings around the blood vessels" and "blood vessel endings" interchangeably when they are clearly not the same thing. Also, whilst it's fantastic to have a proven pathology, there's too much focus on the hands and no clear indication of whether the findings would be consistent around the rest of the body.

Does anybody else suffer particularly with their hands? I have hand issues on and off but they are not and have never been my primary pain source.

Also, being by nature particularly anal about standards of written English, the article's poor grammar flicks automatic "disregard" switches for me.

However despite any misgivings it will be interesting to see where research takes us in the future. The question which came to my mind is that if the finding of these specific nerve endings is going to supersede the four quadrant and pressure point tests in the diagnostic stage, if this pathology is found to not be present where does that leave patients who have been diagnosed with Fibromyalgia using the accepted tests?

(This diagram from phys.org illustrates just some of the variety of symptoms found in Fibromyalgia patients - one of the reasons I find this sudden focus on purely the hands unsettling.)

I have my reservations about this new theory being widely accepted - the following is an article from 2008 which already declared Fibromyalgia was not a figment of imagination:

Fibromyalgia: a real disease

This particular research demonstrated abnormalities in cerebral blood flow to be part of the pathology discovered in Fibromyalgia patients, and also ties neatly to the pre-existing concept of central sensitisation of pain. It bothers me that previous findings seem to be disregarded wholly in the face of newer ones - why can both of them not be true? What makes them mutually exclusive by default, as seems to be suggested?

It's also worth bearing in mind that at any point in time, you can always find counter-balancing negative studies reported, such as the following:

Weather conditions do not affect pain or fatigue in Fibromyalgia

The Dutch researchers aren't dismissing the idea entirely, as the headline would suggest, but in their particular control group they found more evidence against than for the concept of symptom differentiation caused by the weather. I've covered this in my own post Winter is Coming, and I have spoken to plenty of people who react similarly to cold and wet conditions or to high atmospheric pressure.

I can't help but feel deep down that people have gotten carried away with this new hand research, when there is already a body of research present receiving little to no attention. It's far from the only research being carried out in this area, but for whatever reason it has accumulated much more coverage.

I read a statistic recently which suggested ground-breaking research in even basic science can take up to forty years to penetrate into medical practice and become part of accepted treatment. - on that basis I'm sure more will have been discovered by the time this research has had any chance to enter the popular medical conscience.

Whilst it can only be celebrated that we now have a widely-seen proof of Fibormyalgia being real (as if any sufferer ever doubted it for an instant!) I think it's easy to see why the community as a whole remains quite divided in their opinion of the new findings.

On a lighter note I wanted to share this as I'm unsure if everyone will have seen it - Christine Miserandino's Spoon Theory made the BBC News website here in the UK!

Running low on spoons

Well done Christine!

I'd love to hear what others have to say about the new research, or indeed any of the existing work I've posted. Please feel free to leave me a comment or contact me (The Green Moranth tab gives you several options of how to do so.)

Wishing you all many spoons xx

(EDIT: A friend very kindly sent me the full paper for the new research - it isn't ruling out anything, merely suggesting the hands were a source of the particular phenomenon being previously recorded and so chosen for use in this study. Short version: you apparently cannot trust ANY press to report scientific research accurately!)



* Yes, I'm well aware Holmes never said it, but who am I to fly in the face of tradition?

So Say We All

The aforementioned kitten post is delayed once more, friends!

I’m sure plenty of readers will have already seen this image of the note left on a young lady’s windscreen by a passer-by after she parked (rightly) in a handicapped space.

(The note left on Emelie Crecco's windscreen which she bravely shared.)

I’d dearly love to say it’s the first instance of such ignorance I’ve seen, but that would be far from the truth.

The situation doesn’t directly apply to me – I’m not ill enough to be considered disabled – but I know people who are and they sprang immediately to mind upon seeing this.

Now, had the scenario been a traffic warden stopping the person and asking to see their blue badge (or whatever equivalent applies) I can understand – they’re doing their job. For a random passer-by to make such a judgement and then have the gall to act upon it is nothing short of rude.

To illustrate the point of invisible illness and disability somewhat further (although it never ceases to astound me that the concept of “invisible” needs explaining), the following is a list from DisabledWorld.com of SOME of the disabilities in existence considered to be invisible – they add their own caveat that this is far from an exhaustive list:

·         Allergies

·         Arachnoiditis

·         Asthma

·         Autism

·         Bipolar Disorder

·         Brain injuries

·         Charcot-Marie-Tooth Disease

·         Chronic Fatigue Syndrome/M.E.

·         Circadian Rhythm Sleep Disorders

·         Coeliac Disease

·         Crohn’s Disease

·         Epilepsy

·         Fibromyalgia

·         Food allergies and intolerances

·         Hyperhidrosis

·         Hypoglycemia

·         Inflammatory Bowel Disease

·         Interstitial Cystitis (aka Painful Bladder Syndrome)

·         Lupus (all forms)

·         Lyme Disease

·         Mental Health Disorders

·         Metabolic Syndrome

·         Migraines

·         Multiple Sclerosis

·         Multiple Chemical Sensitivity

·         Narcolepsy

·         Primary Immunodeficiency

·         Reflex Sympathetic Dystrophy

·         Repetitive Stress Injuries

·         Rheumatoid Arthritis

·         Scleroderma

·         Sjörgen’s Syndrome

·         Temperomandibular Joint Disorder

·         Transverse Myelitis

·         Ulcerative Colitis 

There are 35 different conditions in that list. 35 different reasons you cannot see for the use of that disabled parking badge. 35 different reasons why the person with the badge is not lying.

35 different reasons to think before you speak or act.

I think the point that annoys me most with snap judgements like this is that in a sense it punishes the ill person for doing well, for having a healthy mental attitude to their difficulties and doing their best to participate in a life as normal as possible.

You look relatively OK and you’re going about average every day business? Ah well, there must be nothing wrong with you then.

It becomes apparent sometimes that as a sufferer of long term ill health you are expected to be a spectator of life and not a participant – and no, you can’t step outside of that extremely narrow box, foolish Youngling!

If we ignore general ignorance and all the other negatives which tend to lead to those sorts of assumptions, I think a large part of the problem is that the psychological side of long term well being is disregarded by many, when to my mind it’s equally as important as the physical aspects. You can’t fight the physical cavalry if your mental infantrymen are all missing in action.

Why should you be expected to live life on the sidelines just to fit the narrow imaginings of other people?

I’ll use an example from my own experience. Whilst undiagnosed last year I went to the Bloodstock Open Air Festival – I’ve been going since 2008 and it’s become something of an annual tradition. I enjoy the music, the friendly atmosphere and the chance to see friends I may only have that once-a-year opportunity to catch up with.

(Sorry Doc, Avantasia are more than a good enough reason to be silly!)

Most people were supportive and thought my attending was a good thing – you shouldn’t give up without trying was the general consensus. However a couple of people did start with the “If you’re supposedly so ill, what are you doing here?” comments.

Now, there’s plenty in the cold light of logic which is impractical in attending a three day outdoor festival. However, impracticalities aside I chose to put my mental well being first for those three days and do something I love in the company of people I love.

It had nothing to do with how physically well or not I was– it was a choice based on the fact I’d already had to give up plenty, and that was one thing too many. I’ve said before that I firmly believe that occasionally you have to make logically flawed decisions for the sake of something which is important. You allowing yourself a break and setting boundaries in terms of allowing yourself to participate in life is not only healthy in the long term – I believe it is entirely necessary.

This was something of a lively argument I used to have with my regular GP before I moved up to York. He’d lay out all the practical issues with whatever I wanted to do, and I’d come right back with “With all due respect, I need to do it.” He eventually came to realise that I’m far from a fool and would take all the precautions possible including any suggestions he had to make. I’d make sure I rested up before and after said knotty desire of mine, and I’d do everything in my power to minimise the impact.

During my last appointment with him he wished me luck and said I’d actually had an effect on the way he viewed the overall complex picture in terms of when mental well being contradicts physical limitations. He agreed that sometimes if done sensibly it could indeed be a positive thing.

The Retired Bridgeburner 1, Convention 0?

What I choose to do for my own mental and physical well being is my business and nobody else’s. I respect the informed opinions of the medical experts I deal with, but that doesn’t mean I won’t challenge them if I feel the need to. Passers-by can make all the assumptions they like – nobody knows my body and my health limitations as well as I do, and last time I checked I was not obliged to run my own informed decisions past anyone else, however entitled they may feel to their opinion being heard.

Something possibly worth considering if you are an uninformed by-passer of any ilk – you are seeing only the final product in looking at the ill or disabled person being wherever they are, whether it be a heavy metal festival or sitting parked in a disabled parking bay. You have no idea of the process which led to that – the days, weeks or months of planning and preparation which may have been entirely instrumental in that trip being possible. How do you know if that isn’t the first time the person has gone farther than the end of their street in six months?

How do you know they haven’t gone farther than the end of their street in order to allow themselves to do what they’re doing now?

Think before you speak, and if necessary, don’t speak at all. Your assumptions could do more harm than you know, and they stick in the memory for far longer than you realise.

Wishing you all many spoons xx