"All you have to decide is what to do with the time that is given to you."

(Because it's not as nerdy if it's not in Elvish. Courtesy of Quenya101.com)

I’ve pondered over this post for a while, and in writing it I feel it’s going to be of more appeal and/or benefit to women than it is to men, though that is in no way intended to belittle the fact men suffer from self image issues related to illness or otherwise. It’s more a gesture to the fact that in my experience we women tend towards being a little more neurotic about it.

One of the trickiest parts of a post dealing with how my illness has affected my self image and overall self confidence is that it requires me to separate what is directly resulting from being ill, and what already existed as one of those demons we all have which comes out to play from time to time and raises merry Hell.

The best way I think is to give a very short background of the place I was in mentally with this kind of thing beforehand and then go ahead with comparison. I am by nature not a showy individual. I consider myself fairly ordinary to look at and I’m for the most part happy that way – I don’t really like being the centre of attention (mostly because it’s embarrassing and I haven’t a clue what to do with it) and I’m of the sort who does one of two very distinct things when presented with a compliment:

1) Go bright red and do a remarkable bunny-in-headlights impression then flail about for something to say or;

2) Mumble a “thank you” whilst very carefully studying my shuffling feet. And going bright red, naturally.

Aside from an occasion such as a wedding where dressing nicely is expected, it takes a lot of effort on my part to get out for anything less and deliberately “dress up”. Any instance takes a good week of battling with myself about it beforehand and generally some good-natured just-shy-of-bullying from a couple of friends who think I need this drumming out of me. Honestly? They’re probably right.

There are reasons which have contributed to my being like this of course but this is The Retired Bridgeburner, not This Is Your Life.  

(None of that, thank you!)

So, I think I’ve successfully established that I was not in any way starting from a place where I felt I was a great beauty. I’m not, and that’s absolutely fine. I never walked into a room knowing or expecting that heads would turn, and often jumped to the conclusion I had one of those pesky “kick me” notes somewhere about my person on the odd occasion it did happen. I don’t think that’s ever actually been the case but one can’t be too careful.

For me I think the biggest issue in dealing with the way an illness changes the body is learning to accept that these changes are beyond your control. You may be able to reverse them, but you also have to deal with the possibility that things will never return to the way they were. I think it’s a perfectly natural thing to be somewhat begrudging towards changes you had no part in.

At what point was I consulted about the sudden lack of hips, and I certainly don’t recall acquiescing to the bouts of wild bloating which affect both the fit and the comfort of half of my clothes either? Anything to say for yourself Petunia? Nope, thought not.

Now, I have my fair share of capability to be unreasonable and somewhat neurotic just like most people. I always hoped the weight would arrive back on my hips at some point. It’s just not in my build to have fabulously wiggly hips, but it’d be nice for them to have a bit more shape again. For me, a girl who lacked much shape until I hit 20, this caused a fair bit of resentment and frustration. To this date, I still don’t really have proper hips but they’re less alarming than they were this time last year.

The bloating however just made me want to scream. I led a very active youth and my general build reflects this. I’ve had an ironing board stomach for the best part of five years now and a reasonable amount of waist definition. I didn’t want to accept the illusion of lack of shape caused by this bloating, and what is probably not actually a huge difference in the grand scheme of things became a whale of an issue for me. I felt like I was right back at being the gawky fifteen year old who like so many others looked in a mirror and couldn’t find anything to like or love in what she saw. Being only 5’3” and slight of frame I felt the illusion was made worse by my comparative lack of height. I went through a fairly long stretch of time when every time I bloated I didn’t want to go out at all – I didn’t want to be noticed or judged by comparison to the healthy me of two years ago.

She isn’t here anymore, and the comparison would have been unforgiving in the extreme.

I also came up against changes you’d expect would be positive, but I’ve been wrestling with them nonetheless. My Fibromyalgia to date is best controlled by exercise and careful pacing of whatever I’m doing, but mostly the exercise seems to be the key.

Now, we’ve all had it drummed into us that if we eat too much cake, our clothes stop fitting – a sweeping generalisation which infuriates me in the context of conditions like Fibromyalgia, CFS and ME which can often cause a profound restriction on your potential for activity. I’m passionately against any sort of weight policing because it’s nobody’s business but the person themselves and nobody else knows their circumstances unless told.

Somewhat naively by comparison, I never thought about the other less-spoken truth that if you suddenly increase your exercise routine your clothes may also stop fitting.

I think the reason I have difficulty with this in my head is that had I increased the exercise to deal with my condition, not to build and gain muscle. Had I set out with that goal I’d probably be over the moon right about now, but I didn’t and so I’m still unsure as to quite how I feel about it.

The long and short of this is that me and jeans are no longer strictly on speaking terms. My legs are not any visibly larger, but what they are now is incredibly solid. They’re totally unforgiving in the scenario of squeezing into things. The only real monitoring of the exercise I did was in marking how the pain levels fluctuated – it took me six months to have a look and go “Oh, well that’s different!” in terms of shape and muscle. I’ll be clear, I’m a typically British lady in shape and also extremely typical of my Mum’s side of the family, so I’ve always had reasonably big thighs by proportion to my build as a whole. It’s not completely new, but it’s still something I view as beyond my control and not something I ever intended upon.

In light of this, femininity has crept up on me at last and got her claws into my inner tomboy. Whilst I can still get away with some loose fitting linen trousers, for the most part I have been dragged kicking and screaming into swearing allegiance to skirts and dresses.

So, how do I go about coming to terms with this?

There’s no magic formula I’m afraid. There’s no Felix Felicis to add some luck to your endeavours. There are as I see it two major points, at least to my particular way of thinking.

(If this stuff existed, you know we'd be all over it. Courtesy of r-o-b-a-n on DeviantArt.)

Firstly: looking past the physical. We’re all as human beings capable of being shallow and getting lost in the aesthetic unable to look and appreciate any deeper. We’ve all done it, we’ll all probably do it again. However, we can choose to look further.

I’ve spoken elsewhere in this blog about the process of accepting your new normal, and using that as a springboard to finding your own strength and courage in the face of whatever your chronic illness may be. It takes some soul searching and a lot of thought and patience, but it can be done. It is infinitely worth finding, particularly in the face of days when you feel you look like something the next door neighbour’s cat threw up..

Strength cannot be hidden by bloating. Courage isn’t eradicated in the face of looking tired. “Coping well” (in whatever parameters apply to you personally) is not controlled by a number, be it weight or dress size.

All of us, ill or healthy, have much more to offer the world than our transient and changeable physical appearance. For our own well being it is worth remembering that and thinking about everything else we are, every other facet of our beings. If we try to find it there’s usually far too much to be happy about to continue dwelling on something temporary like a bloated abdomen.

The second thing is time. It’s cliché to say time is the great healer and leveller, but it’s the truth in the case of something as all consuming as incurable ill health.

This sort of making peace doesn’t happen overnight ever – nothing worth having is given that freely and that quickly. I also think it’s a constantly evolving process in which we don’t stop learning. Each new challenge presented to us needs a new strategy or a new way of thinking to overcome – in this way, nothing is static and is always fluid. I personally see this as a good thing.

I believe I’ve made mention previously that part of my coping strategy is to lose myself in literature which means something to me or provides catharsis just as often as I possibly can. In terms of my discomfort and awkwardness with how I look, be it a good or bad day illness-wise, I go in search of the characters which helped me through teenage-dom.

I turn most often to a woman who was so uncomfortable in her own skin because she lacked traditional beauty that she rejected everything feminine and learned to be a warrior. She became tempestuous and miserable until someone loved her for her, warts and all.

Had someone given teenage me the opportunity for armour and a sword I think I would have bitten their hand off, but no matter the particular differences the depth of the character and the reasons she was the person she was struck a chord.

David Gemmell fans will recognise the description of Virae, heir to Dros Delnoch in Legend and of no small comfort to me. She doesn’t have to be a real person to offer such comfort – it’s the idea which strikes the chord after all.

So, as in the title. All we have to decide is what to do with the time that is given to us.

My story does have one up which looks irrelevant to most but is wonderful to me. Being forced into femininity means I now have no excuse not to wear my pride and joy at every conceivable opportunity – my map of Middle Earth skirt.

Because few things in the world are better than a Middle Earth skirt.

(The beautiful handiwork of NerdAlertCreations on Etsy.com)



Illegitimi Non Carborundum

(The lovely work of DolphinMoonCreations on Etsy.com)

I figured the NHS was a subject I would have to tackle eventually. Judging on those I’ve spoken to I don’t think I’m the only one maintaining a peculiar love-hate relationship with it as an organisation. Whilst I understand some of this will not be relevant to readers outside the UK, I do intend to round up with some general tips and tricks I’ve found beneficial which will hopefully be of use across the board.

So, why the love-hate? I think as with so many other things in life experiences with the NHS are all a matter of luck. My experience has been frustrating but I would say mostly positive – I know others who have not been so lucky. One of my ideas for this blog was to ask for guest posts, or links to posts elsewhere (I have a couple of friends with blogs of their own on here) about others experiences, so that will give a much wider appreciation of the NHS’s role in dealing with chronic illness.

The main negative I’ve come against is the utter lack of communication between the many parties I’ve ended up involved with. To say that the NHS has a central hub computer system, the right hand still spends a lot of time blissfully unaware of its left counterpart.

My road to getting diagnosed with Interstitial Cystitis best illustrates this, so I’ll put the Fibro aside for the present. I had several visits to hospital within a two month period last year and in the run of regular tests I showed up as having a UTI every single time – even straight after finishing a course of antibiotics. Five courses of increasingly strong antibiotics later and I still seemed to be the only one involved thinking there had to be something more to this than a particularly stubborn infection.

The key for me was that I had three actual UTIs in 2010, and this didn’t feel like those. It was certainly similar in some ways, but with enough difference for me to have my doubts in the constant “oh, it’s just a new infection” approach.

If a friend hadn’t made mention of an acquaintance of hers with Interstitial Cystitis, I think I’d still be on an ever-rolling course of antibiotics to this day. In doing some digging of my own on the internet (I don’t always recommend this approach, and I’ll elaborate further later in this post) I found a condition that in many ways behaved similarly to a UTI, but was in fact a different thing altogether and unresponsive to antibiotics. Bingo.

Armed with this, I made my next trip to the GUM clinic at Sheffield’s Royal Hallamshire Hospital and spoke to a specialist there, having become sick of my obstructive, deaf-to-all-but-the-simplest-answer GP surgery. After explaining the situation to the doctor on duty there, she immediately drew up a referral to Urology to send to my GP. Who promptly lost it.

To cut a somewhat angry and frustration-filled story short, it took me changing GP surgeries and raising the issue again before I finally got my referral to Urology. The new GP listened to me talk through the situation to date, and to my delight responded without argument and with a reassuring “don’t worry, we’ll find out what’s wrong.”

That particular story ends quickly and happily – Urology diagnosed me in five minutes flat with a mild case of IC, put me on a trial course of Amitriptyline and directed me to the IC Network website for dietary advice. I’m pleased to say it has caused very little problem since aside from the occasional flare up.

And so I come to my first more general point – if your GP isn’t listening, find one who does. I’m unsure if this transfers to other countries, but certainly in the UK you have the right to choose your GP. I cannot put enough emphasis on what changing surgeries did for me in terms of the road to diagnosis. The previous surgery I’ve gathered are a little indicative of the “old-school” – they don’t like patients telling them what they think is wrong or making suggestions, and it takes a sledgehammer to move them away from the assumption of the simplest, least costly option. Certainly there is no acceptance for the concept of “you know your own body”.

To my understanding, a GP should serve a gateway function in terms of accessing more specialist knowledge where needed.

Dealing with them was like facing up to Jörmungandr The Midgard Serpent as a guard dog.

(Amon Amarth's Twilight of the Thunder God
Who's a good doggy?) 

There’s a phrase which is popular amongst the CI blogging community, and that’s this one; being an advocate for your own health. I’m a firm believer that a good GP or specialist is a partner in your care – and if one half of the partnership isn’t pulling their weight, they need to be replaced. There are still things I feel patients can do too to ease the process too, however.

With long running conditions (particularly in the case of those which affect cognitive function) it can be difficult to remember what has been said previously, things which have already been tried or suggested and things as simple as whom you’ve seen before.

The best thing I’ve found is to keep a rough list with a rough chronology (mine is down to the month where I can’t remember a specific date) detailing who you’ve seen (GP, hospital department, specialist etc) and a rough gist of what was discussed and decided. Mine isn’t fantastic because I came to this idea quite late, but it’s a good thing to keep handy for when you need to see someone new.

Also keep a list of anything you’ve tried yourself, and how successful it was. If you have an appointment booked, make notes before you go about what you need to ask. It’s alarmingly easy to forget and get sidetracked once you’re in – you don’t want to have to go back twice to cover a point which could have been solved the first time.

An approach I’ve taken is to keep a symptom diary for specific things (I know, I can hear the groans from here). It seems to be the typical thing you are sent away with by a GP on your first attempt to raise a concern. But, if you keep a diary for a month and then take it to your appointment, you’ve beaten the first hurdle already and it’s much easier than trying to remember all the specifics yourself.

My new surgery in York are about to meet me for the first time tonight, and not in my most accommodating of moods. Calling me in regards to a repeat prescription request you’ve already cleared once (without looking at my notes) to ask why I’m taking my medication (...read the notes?) is not the most auspicious of starts.

Luckily for me (and unfortunately for them) I’m not the 20 year old who was still somewhat intimidated by doctors and specialists and did as she was told regardless of being quite sure it wouldn’t help. The one who didn’t argue or stand up for herself very much. The NHS and the chronic illness experience as a whole saw the back of her, in place of the rather more ballsy and self-assured 23 year old who knows much more about her body and what it needs. If it sounds like I’m spoiling for a fight without having walked through the doors yet...... well, when they called they didn’t know I had Fibromyalgia or IC at all. You can possibly see why.

Another experience of mine which helps illustrate the need for a co-operative GP was the period following my colonoscopy. Without going into horrendous detail, it was botched just about as badly as it could have been. Screaming, tears pain, etc. This left me with appalling internal pain for quite some time afterwards, and after collapsing unable to walk at home I ended up in A&E with a suspected ruptured bowel (thankfully not the case). The specialist there prescribed Tramadol as and when necessary until the internal trauma passed. Blissfully, it worked.

I made mention in For Freedom’s Sake that there were advantages to being 5’3” and tiny. There are disadvantages too... internal procedures illustrate a couple of them alarmingly well.

Anyway, I took this repeat prescription request to my GP surgery (albeit the old one) and this was refused on the grounds of “we don’t believe in using it.” Excuse me, what? All the relevant authorities clear it for use, a specialist who outranks you has requested it be prescribed and yet you “don’t believe in it”?

I’m an extremely peaceful person, but even I thought long and hard about sharp objects aimed in certain directions on that day!

I mentioned internet research and that I didn’t feel it was always a good idea. All I can really recommend is that everyone exercises caution and chooses their sources wisely. Wikipedia will have articles on most conditions – that doesn’t mean they’re going to be all that helpful.

(I make no apology - I love this thing!)

  

In my experience one of the best websites is Patient.co.uk– they give a good overview of symptoms, causes and treatments which strikes a good balance between information and fear-mongering. However, its key draw for me is the fact that medical professionals use and review it too. NHS Choices isn’t terrible, but it tends to list just three or four symptoms for each condition which are so painfully vague they could indicate anything from a poor night’s sleep to imminent expiration.

If you take nothing else away, for goodness sake stay away from Livestrong. Stick six inch red hot needles in your eyes instead. I guarantee it’ll be more productive and probably more fun too.

In short, things can be quite difficult enough without having to deal with obstructive medical professionals, and as many precautions as we can take for our own benefit there is no getting around that fact. Whilst it shouldn’t have to be, it is in some ways up to us to make sure we are listened to and can get the help we need.

If all else fails (fellow Malazan fans!), hire a sapper and make sure he’s armed with kittens.



Silliness of the Day

(Sahloknir - not a happy chap)

Otherwise known as "why Hannah shouldn't read medical articles first thing in the morning".

Having a quick skim read of this:

"A Workout Without Working (Much)"

I came across the word "sarcolemma" - the membrane around the muscle fibres.

My not-fully-awake-and-a-bit-foggy brain read this as "Sahloknir", which followers of Skyrim may recognise as the somewhat angry dragon you encounter just outside Kynesgrove in The Blade in the Dark quest.

So, quite by accident I may have solved the mystery of Fibromyalgia.

We're just full of angry dragons.

Hear Me Roar!

(The lovely work of grimhrakkar.deviantart.com.

The Retired Brideburner - somewhat excited about Game of Thrones Season Three, if you hadn't guessed.)

This post is going to be as much about catharsis as kicking myself up the backside I think, but as we all have these kinds of ups and downs I think it’s worth documenting in here.

In short without wishing to jinx myself a couple of potentially exciting opportunities have arisen in the past couple of days.

What’s the problem, you ask? Well hold your horses.

The past week or so has been a little worrying. I’m unsure if it’s a bad phase (which I think we all have) or if this is actually a spike in severity that’s going to remain in place. In all honesty it doesn’t *feel* like a phase.

I’m aching all over more, and it seems to be the kind of aching my somewhat punishing exercise routine isn’t helping. The exercise isn’t making it worse, which is a good thing and means I can keep at it, but I suspect I’ve hit a plateau in effectiveness which might need a new approach to tackle. I am hoping to take up a new form of exercise in a couple of weeks time so I’ll see if that makes a difference before widening my search for possibilities.

Also, my bowel is just being silly. Pretty much as silly as it was when this all started. The problem with this is (potentially) if I go to my new doctors here with what’s happening, they’re going to send me back to Gastroenterology who are going to perform the same tests again (all of which were unpleasant) and I suspect come out with the same results. Whatever it may be, I genuinely don’t think it’s an inflammatory bowel disease. I’m reluctant to go through all that again, jeopardise future work opportunities with further hospital time and end up in much the same place as at the end of the last bout of tests – ie “we don’t know what it is, good luck.”

However, if I’ve gotten this far I am most certainly not going to give in now.

I’m wrestling with my own emotions and fighting to keep calm – we all know worry and anxiety are not going to be remotely helpful in this instance. For someone who is by nature quite highly strung I’ve been surprising myself with how “zen” I’m managing to be. I think I might be finally accepting that worrying about it won’t make it go away or indeed change anything for the better, so it’s a waste of precious spoons I could put to use in more productive fashion.

So, I’m maintaining the exercise (somewhat toned down today due to both knees making their displeasure felt) and keeping on eating and drinking regularly and healthily. I generally find food is the last thing I want when my bowel hurts, but I’m quite determined to not forsake my overall well being for as long as I’m physically able to keep in control of it. So I’m eating the pasta bake I had planned for tonight whether Petunia likes it or not.

I’m also putting my noticeably reduced energy levels into relaxation – which for me means long hot baths, music and a good book. When I go back to work I’ll have less time with which to do these sorts of things so I’m trying to train myself into doing them when needed now without apologising for it or indeed telling myself “you should really do that ironing” or “you haven’t vacced for a couple of days”. Whilst I like a clean house, I can accept spotless is beyond me nowadays.  I’m hoping this approach will mean it’s easier for me to come home from work, maintain regular eating times and still get the relaxation I need.

I find the little pieces of mind training are just as important as the larger steps in working towards combating a chronic illness. I could succumb to worry and allow myself to be anxious about my situation and what’s possibly going to occur in the future (some small part of me has accepted I will need to return to Gastroenterology and find some answers) – but it will make the present levels of pain and fatigue worse, so I don’t allow it. 

Whatever I need to do for adequate distraction I do at the moment. I won’t insult the intelligence of anyone reading this by suggesting that’s an easy thing to achieve – it isn’t and it takes hard work and a lot of discipline. I’ve found it is helpful and worth the effort though, and I have real hope it will stand me in good stead for dealing with returning to work in the future.

Whatever my body is going to throw at me now or one year or ten years from now, I have a quiet confidence I can learn to face and then beat it, as I’ve learnt (and in some ways am still learning) to do now. I won’t allow myself to be afraid or to consider any alternative but my being in charge – not Petunia.

And if all else fails my partner in crime introduced me to Good Old Gaming over the weekend, and I am now the proud (read: unashamed!) owner of a fully optimised copy of Icewind Dale, Heart of Winter and Trials of the Luremaster. So if nothing else, I’ve orcs to take my frustrations out on – now what could be more relaxing than saving the Ten Towns, I ask you?

Bless you, gaming nostalgia.