You can't take the sky from me

This is something I did a while ago just for myself, and I thought I would share it.

I grabbed some of the clothes I've been too terrified to wear whilst being ill and put them on, and took pictures. I hadn't worn them because of the physical changes going on in my body - I didn't like the way they looked post-change and so was too frightened to get them out and try again. I'd had an ironing board stomach for the last five years - I mourned the even temporary loss of it.

It was a big step forwards and I did feel quite palpably better for having done it. It served as another reminder that everything could indeed be so much worse than it is. 

In the first twelve months of being sick I lost nearly a stone in weight before I started to get my bowel under control - I still don't actually know what's going on with it, but it's not as crazy any more so that's something - I no longer had hips, just sharp edges and flat planes at the top of my legs, and my collar bones and top line were very prominent. When the weight finally crept back on again (most of it anyway) I started to suffer with bloating and generally wanted to avoid fitted clothes for all of this period.

Then I hit on it - why was I letting the "before" dictate the "now"? Just because they were different didn't have to mean the now was bad or indeed "wrong". It was just that - different from before. 

I think in some ways there's something of a lesson to learn which is specific to the chronically ill - just because the inside is being frankly disgusting doesn't mean you have to project it onto the outside and hurt yourself with that projection. I've never had the best self-image in the world to begin with, but it certainly suffered for some time after falling ill. I knew the condition itself and its effects were invisible, but I knew how ugly and horrible I felt and thought this must be coming off me in almost tangible waves. I struggled for a long time with the feeling of being unable to get properly clean (saving having just literally gotten out of the bath) because of bowel and bladder histrionics, and this certainly contributed to my general "I'm disgusting and yuck and eurgh" moments.

In time I learnt to accept that the weight wouldn't go back on where I wanted it to (I still don't have hips really) and that there was nothing I could really do about looking a little different than before. Bodily functions were still different than before, but they became the new normal and I began to feel a little less affected by them. If you try hard enough there's usually some element of humour to be found however deeply buried - and I suppose there is something a little humorous about being constantly kept on your toes by "natural" bodily function. I'm fairly convinced there's a tiny little person with a hammer living behind my bladder who hits it occasionally - as good a theory as any on the sudden "NOW!" demands it gives me. 

Moving away from physical manifestations and tackling the psychological side of the issue, one of the things I find most upsetting is when I see other Spoonies referring to themselves as "broken", or worse still when other people call them that. 

Let's look for a second shall we? To the dictionary!

Broken: fractured, damaged and no longer in once piece; forcibly separated; rejected; sundered; incomplete.

Not one of those possibilities has a place in a healthy outlook towards a chronic illness. Each and every condition comes along with its own quirks, foibles and down right inanities - but you're still in one piece. I firmly believe there's a choice of outlook here, and the much healthier option is to drop the ugly/broken/damaged ideas and opt for some more positive ones. As with all things it takes time, but it's more than likely worth it. 

And as for being used as an insult? Well, there'll always be oxygen thieves about I'm afraid. 

You're not broken. The human body is an incredible biological machine - if it starts to react and change, it's because it's attempting to fight whatever is happening to it. It will continue to fight for just as long as you are drawing breath - it won't give up. Nor should you. Not broken, merely different than before. 

Oh, and one last thing. The final photo I took that day was for Petunia herself:

I'm going on an adventure....

Well I would, but it'd require moving. I'm not moving. You can't make me. 

(Yes, Hannah is having one of those days.) 

We all know this one!

When you make plans, do your best to behave in the days leading up to the plans, and your body says "NO!" regardless. It's relevant for me right at this moment but I wanted to make a post while I'm thinking about it, as it ties in neatly to what I've said in a previous post about people-pleasing. 

There's no getting around it - you're bound to disappoint someone eventually with your not turning up. Someone's feelings are bound to be hurt somewhere down the line - it's unavoidable. There will occasionally be a really important event and you are unable to leave the house. We can take all the precautions we like, be just as careful as humanly possible and this will still happen. It's a fact of life of any illness, chronic or not. It's likely that one day you will catch a bug that leaves you on elastic attachment to either the bedroom or the bathroom on the day of an important event - in short, it happens to us all. When you have a chronic illness, the cycle just appears to be set to repeat. 

The point I wanted to make was about the attitude with which we face this fact. I've talked about being a people pleaser and people have responded saying they feel they are the same. I think at some point you have to realise your health is the most important consideration in your plans - as galling as that may be to your inner nature. You're the one who could end up in bed for a week because you overstretched for someone else's benefit - and is that really fair?

I think there will always be some events that we will all just decide to be a little silly for. Everyone has an importance threshold for which you're prepared to burn all the bridges of your carefully planned out routine and go "sod you body" for.

However, my point was that feeling guilty and beating yourself up in response to missing something will not help you or anybody else. At some point, acceptance arrives. Your life is the way it is now - to quote the tirelessly upbeat Hank Green, this is your "new normal". For your own sake, there has to come a time when the over-explanations and the platitudes and the apologies must cease and calm must reign. 

I'm saying all this, but I'm still in something of a halfway house with my attitude. Some days everything is zen and I am a serene mountain lake (as if, it'd be bloody freezing) and others I'm plagued with guilt and feelings of inadequacy because I've had to let someone down. 

My relevancy point? I have a hen night this weekend. Well, it's more of a hen day-and-night which I'd planned to attend all of, but since I've spent all of this week so far perpetually tired and aching and in the "I'm not moving, you can't make me" frame of mind I referenced above, it seems a silly thing to do. I'm still going for the evening though -  that's some consolation. Originally I thought "Hannah, you're doing it again", but as time has gone on I've thought "No, your body is telling you what it needs you to be doing or not doing - give yourself a break and listen to it." I know it would be a step too far - so I have to put myself first and other people second (it still leaves a bad taste in my mouth) and do what is sensible. Eurgh, sensible. That sounds so horribly adult - I'm 23 with delusions of continuing freedom, make it stop! 

I'm superbly lucky - my friends are really wonderful in their understanding and acceptance of the fact I am not that reliable any more (involuntarily so, after all) but they know it's not because I don't want to be there. It's because Petunia is a grumpy teenager and likes to throw tantrums. 

In short - be a little kinder to yourself. So, the "new normal" is a little quieter than the old one - quiet isn't always a bad thing. It's not in any way as simple a thing as clicking your fingers and looking at something in a new way - but I do believe there is something of a choice involved. A choice to let yourself have some breathing space and to make decisions for your own good without arbitrary self-chastisement later. A choice, in effect, to be content with the things you can do and to not focus on those you can't. It's not easy, it doesn't happen overnight and it isn't some sort of surreal bubble where you never have days where you feel low - but it's not a bad thing to reach in the long run. I'm not there yet - but I'm working that way slowly.

Case in point - I've decided not to beat myself up about the hen night. I'm going to go and enjoy the bit I can make and then hopefully feel OK the following day after a good sleep because I won't have pushed things that step too far. Everyone wins - at least a little bit.

Is any of this sage wisdom going to stop me attempting to do some housework today? No, but I decided some time ago I was a mule in a previous life. There's no way this amount of stubbornness is natural, right?  

Putting on my Fighting Trousers

The title is a tad ridiculous if I'm honest - I'm not putting on any trousers today. Today is another dress day for definite - seams are evil and painful and must go away.

I've been planning a post about this for a while, and was spurred on by discussing it with a friend last night. It's something I find intensely annoying and often sickening, and I'd be interested to see if anyone else has come across similar.

And what is it you ask? The insane idea that illness is somehow a competition.

(Or walk into Mordor, oddly enough.)

The nature and quality of your particular illness will not score you any points. Life isn't Dungeons and Dragons - you won't level up for illness experience. There's no cap at Level 40. You won't be awarded Daedric Smithing for raising your Illness skill to 100.

What's that? Too many gaming metaphors? Well really now!

I'll start with the most obvious one - "well it's not cancer!"

Not a single one of us is belittling the "Big C" in talking about our lives. Nobody would wish for cancer or wish it on anyone else, and as someone who has lost loved ones to it I find it a particularly sickening thing to say. However, when did cancer become the benchmark by which we are all judged? When did every other disease, condition or syndrome become illegitimate on the grounds of not being cancer? I'll make a general comparison point - do people say "it's not cancer" to people complaining about a cold? So why is it OK to say it to people suffering chronic conditions?

The truth is it's not OK at all.

What's also completely unacceptable to my way of thinking is to compare different conditions against one another. People who suffer the same condition can have wildly different experiences, so trying to compare *different* chronic conditions is a completely futile and pointless exercise. So, you know a person with X and you think that's worse than Y - why do you think that gives you the right to criticise or judge the person with Y? If you're making comments like this the likelihood is you don't understand the topic at hand and nor have you taken the time to try. A friend of my family had a very good saying which I always remember - "Better to let them think you're an idiot than to open your mouth and confirm it for them."

In other words, you're probably better keeping your appalling ignorance to yourself.

One-up-manship is another silliness which makes my hit list. We've no doubt all seen other ill folks sitting on blogs or on social networking sites telling other people to "be thankful you're not like me", to "count themselves lucky". I try to be patient and sympathetic with others - treat others how you'd like to be treated, y'know? - but that attitude fast loses my support. It's not helpful and especially distasteful when coupled with the assumption of automatic authority because their X condition is more severe/worse/less understood than anyone else's Y. It was fairly surprising to me that there are a number of ill people out there who are just as devoid of compassion as the ignorant fools I mentioned above - more worthy of note as I expected those who suffer with chronic conditions to be more understanding and supportive. Thankfully, 99% of those I have encountered are indeed wonderfully compassionate and helpful individuals - but the existence of that rather vocal 1% still took me by surprise.

And worse than any of these? For me, the worst thing is when other people use your illness as a stick to beat you with or as an insult. To use something that is little more than an unavoidable poor toss of the dice of fate in such a way leaves me rather speechless in rage. It's the classic playground bully mentality - sniffing out a weakness and then trying to use it. I think part of the reason this annoys me is because it's happened to me - the malice was against me personally and yet the whole rant was constructed around my illness and the way I coped. That kind of behaviour sickens me when it happens to anyone, not just me, because it's not as if the victim has a great deal to defend themselves with - they can't exactly sit there and say "but I'm not ill!" in the manner of responding to any other insult. All bullies are essentially cowards - and this is one more situation which proves the adage.

Being patient with another person, offering to listen and saying "I understand" is a gift which costs you nothing and yet can mean everything to the person who receives it. We'd all be a little better off if we exercised a little less judgement and a little more compassion.

In a short summary: unless you are in the exact same position as another person, you have no right to judge them. If you're not ill, you have no right to judge an ill person or try to police how they cope. If you are ill, you have no right to do so either.

....part two.

So, my post this morning attempted to put into context exactly what suffering from chronic pain can be like in the most extreme cases. I'm not always (thankfully) as bad as the scenario I described, but if you're going to try and make people think I see little point in giving a "best case" scenario. Pulling the punches will not yield the desired result. 

Coping, however? Now there's a thornier issue. How we all cope is as unique as the individual people we are. 

Some days there is literally no other option but to go to bed and try to go to sleep, in the hope sleep will yield relief and be the healer medical science claims it always is. I personally have no prescription painkillers for my Fibromyalgia, and I'm sure I don't need to tell anyone reading this blog that paracetamol and ibuprofen are in no way effective whatsoever. Thankfully though I am sometimes able to sleep off my flares.

Today has been a "recovery day". For me this means I've overdone it the previous day, or possibly it's a general build up over a few days of activity. Today is the result of seeing a friend from out of town for lunch, and then going out a second time to visit another couple of friends and their gorgeous new ten week old kitten (who am I to resist things both small and furry?)

On a recovery day, I do as little as possible. Today has been spent mostly curled up under a blanket with my wheatbag and a book wearing my heat gloves. The pain hasn't disappeared, but forced inactivity seems to have kept it from degenerating to the point of being incapacitating. I've done a little bit of cleaning (followed by a few hours rest) and made a crumble (again followed by rest and my partner cooking dinner instead of me). When I've finished typing I'll be having a soak in the bath (I have the water as hot as I can stand it, this seems to help me a little) and going to bed early.

How to cope with constant pain on a general basis though? I'm afraid I'm of little help in this regard, as I really do just grit my teeth and get on with it - because I'm not at the severe end of the spectrum in which sufferers can be completely bed bound, I can manage this way. In an odd way there's a small amount of gratitude here - I've discovered a situation where my stubborn nature is a help and not a hindrance. Who knew, eh?

I often find myself trying to mask my pain and discomfort for the sake of others, and recently I have been trying to break myself out of this habit. A quote I came across on Tumblr earlier today sums up the reasons I try not to do this any more:

“It’s okay to not be okay. It’s okay to hurt and cry. It’s okay to feel sad and wounded and angry. It’s okay to feel these things simply because you’re feeling them. No matter what anyone says, your feelings are inherently valid. They’re real to you, and therefore they’re important and deserving of being expressed. You’re feeling this hurt for a reason, and in order to heal, you need to give yourself permission to feel your feelings. You don’t have to hide your pain. You don’t have to put on a happy face or bury your tears. You don’t owe anyone a smile or an explanation. But you do owe it to yourself to be true to your feelings. You owe yourself the chance to heal. Don’t let anyone’s judgement rob you of that — including your own."

- Daniell Koepke

I realised I was apologising constantly when I needed to ask someone to help me or to do something for me, or saying sorry if I needed to leave a gathering early or couldn't make it at all in the end. My eternally understanding partner and some very good friends all sat me down and took me to task for this, reminding me that they do know what's going on and that they don't need an explanation or an apology from me. It's actually more difficult than I thought to stop myself - I'm a people pleaser by nature and it seems to be my almost automatic setting to feel I am a burden. I am slowly working my way out of this - trying to once a day just ask for something without explanation or apology, and then build up from there.

There are certain everyday tasks for example which my joints cannot cope with any more. I enjoy cooking and am completely unable to grate cheese - my wrist can't handle the movement even for a short time. I'm quite stubborn about chopping and try to do this myself, slowly coming to accept that it takes me far longer than it used to. I sometimes have to stop myself mid-flow of frustration and remind myself that nobody's going to die if chopping vegetables for my ratatouille takes three quarters of an hour instead of ten minutes. It's OK. No harm done. Occasionally though, I give in and ask someone to help or possibly finish it off for me.

Whilst on the homey subject, ironing has to be done in small bursts with rest periods - believe it or not, even a half full iron becomes too heavy and subsequently painful otherwise. Cleaning can be much the same, although we do now have a very light hoover which I can move with relative ease. It's taken some firm mental re-training (still ongoing) for me because I'm a person who likes to clean the whole place in one burst - that simply isn't possible any more. At the moment while I'm not working I'm setting myself a one room a day target. This is the reverse of a normal target - I don't have to do one room a day, I'm simply not allowing myself to do *more than* that one room if I do any at all. 

I also essentially kick the rule book every so often. I suspect this wouldn't be possible for those more severely affected than myself - according to my doctor I'm about "middle of the road" - but I find it helps from a psychological point of view to pick a good high energy day and:

I have to be careful - this only really works in a small burst and if I have time for recovery days afterwards. It might not be for everyone, and I suspect it isn't for most. Psychologically though, I've found this is good for me. It's a part of the whole makeup of the way I look at my condition. She's called Petunia - an unfortunate comment on my part of "it's like having a stroppy teenager inside you" led to the teenager being named by a friend, and this then stuck. In my own private thoughts I treat it as a game which nobody but me is going to win. I call her names and I direct some incredible sass her way. Each small victory of hers is merely the battle and not the war. With this in mind, "kicking the rule book" is effectively giving her a slap in the face every now and again. She needs putting in her place, after all. 

To this effect I have some touchstones - they can be quotes from just about anywhere, song lyrics or just about anything which amounts to a source of comfort. Some of mine I have never made exact sense of when or how I came to link them to my condition, but if it ain't broke then don't fix it.

One example is the Bruce Springsteen song Wrecking Ball, in particular the following lines:

Yeah we know that come tomorrow none of this will be here

So hold tight to your anger, you hold tight to your anger

Hold tight to your anger, and don't fall to your fears.

Now when all these steel and these stories, they drift away to rust

And all our youth and beauty, it's been given to the dust

When the game has been decided and we're burning down the clock

And all our little victories and glories have been turned into parking lots

When your best hopes and desires are scattered to the wind

And hard times come, and hard times go

And hard times come, and hard times go

And hard times come, and hard times go

And hard times come, and hard times go

And hard times come, and hard times go

Yeah just to come again.

Bring on your wrecking ball

Bring on your wrecking ball

Come on and take your best shot, let me see what you got

Bring on your wrecking ball.

Something now firmly burned into my memory was my being lucky enough to see Springsteen and the E Street Band in concert last year. Having been in A&E all the previous day, making it to the Etihad Stadium was just that little bit more precious - I was fulfilling a childhood dream I had never thought possible. When the opening notes of the song were played, I wept with a smile on my face until the final note died. I didn't care about the fifty thousand other people in the stadium with me - that song was something completely liberating for me. I paid for my exuberance at the concert for over a week afterwards - and every stab of pain mattered not at all. 

The other two examples I will share are quotes from Steven Erikson's glorious Malazan Book of the Fallen. The characters are not talking about illness - they're talking about nothing of the sort as far as I recall. It doesn't matter - the words mean something to me and I often say them in my head to myself when I'm feeling particularly low with the pain. Since when did something have to be logical to serve a purpose? 

First in, last out. 

The motto of the Bridgeburners - the origin of my moniker. 

Ambition is not a dirty word. Piss on compromise, go for the throat. 

From Erikson himself, as I've just been informed. This makes some small amount of sense to me - my ambition of beating this condition isn't dirty at all, and there is no room for compromise.

There you go - a window into the way I think about these things. If you're not now terrified and utterly convinced of my impending insanity, keep an eye out for my next posts!

Still the orchestra plays....

I decided it was about time I tackled the tricky subject of constant pain. When I say tricky, I refer to the difficulty in finding something constructive to say about it. I could of course sit here and say "I'm in pain all the time, it's pretty rubbish" and there'd be nothing wrong or dishonest in that, but that's not what this blog is about. I will follow this fairly short post with my thoughts about how to combat the contents, but I wanted to hopefully give people something to think about themselves before I add my own thoughts.

So, I'd ask the reader to visualise their morning routine: got it? Now break it down into each individual action and think of each different pair of joints and each muscle group you are using for each action. 

Let's go through mine - getting out of bed. Well that's most of your body straight away. Making breakfast - predominantly the hands and fingers, and of course the jaw whilst you eat. Getting dressed - again, lots of hands and fingers, but also the rest of the body too. Brushing teeth - most of the arm, wrist and hand. That's all before leaving the flat. And let's not forget the amount of general walking about between rooms during this period. 

Now take your own equivalent, and imagine that every movement of each joint caused white-hot pain to shoot through the affected joint. Imagine that each movement of a muscle caused the dragging sensation of over-work, meaning the muscle is heavy and the movement tiring. Imagine that each time you picked something up, your fingers only just had the dexterity to keep hold of the object. 

Imagine this isn't occasional. Imagine this for every single move you make - every forgotten and casual movement, every little necessity, every time you need to get up. Every time you need to do anything at all.  

Now imagine that when you're not moving, all those muscles hurt anyway. They ache as if overworked, they twitch and spasm causing renewed pain.

Imagine lying in bed perfectly motionless, and still feeling as if every nerve ending in the body is on fire. 

Imagine if all of this was invisible, and people refused to believe what their eyes could not verify for them. 

Never gonna give you up, never gonna..... shush Hannah.

Believe me, nobody would appreciate my bursting into song!

Whilst rambling away on Tumblr last night I came upon the inspiration for this post - what have people had to give up as a result of their illness? As it's something that seems to differ wildly person to person, I thought it would make an interesting topic for a post.

I had to sit and think surprisingly hard about this - changes become part of your "new normal" after a time so it's hard to remember them!

• Alcohol - no big loss to me as I was never a big drinker, but I gave it up out of choice when I started having bowel issues (it seemed sensible), and then on being diagnosed with IC and placed on Amitriptyline I then had two very good reasons to make it a "no" permanently. The only time I find this to be an issue is on nights out - I definitely think there's a point where everyone else is too drunk for you to be sober and I end up quietly taking my leave!

• Citrus fruit and citrus fruit juice - citric acid is a huge irritant for the IC bladder, so I made this change pretty quickly. This combined with the amitriptyline and my efforts to drink less tea (I don't like coffee, but I am a tea monster!) seem to have to calmed it down to a manageable level. I don't like apple juice so struggled to find a viable option to scratch my fruit juice itch for a while - Morrisons eventually came to the rescue in the shape of their fresh red grape and pomegranate juice - it's lovely!

• Diet - I haven't found many specific things which affect me (except onions, but the dislike is mutual) however I've found I don't enjoy food the way I used to, and that's a little upsetting. I think it's down to the fact that I always have in the back of my head the thought of how my bowel may behave afterwards, and there's the bloating and pain as well. However, whilst I never had a particularly unhealthy diet to begin with it has given me the incentive to really clean it up. I cook with meat less than I did before, substituting it with vegetables where I can and this seems to help. Also, it's pretty tasty! 

• Horse riding - strictly speaking I gave this up voluntarily to learn to drive when I was 18, as money would only stretch so far. I had always hoped to go back to it though as I love horses and after riding for twelve years I'd achieved a pretty good standard, but I've had to give this dream up. There's just no way my joints would stand the pressure and high impact nature of the sport any longer - also, one fall could set me back weeks of recovery time. As much as I've been tempted to throw caution to the wind on occasion, I'm sure we've all found that some things are just not worth the risk.

• Gigs - I haven't given this up entirely, but I've had to become much more picky in terms of what I go to and how often, as well as having to carefully consider the travel aspect. I find as long as I'm careful and don't end up right at the front where all the pushing tends to happen I'm good for a couple every now and again as long as they're evenly spaced with plenty of recovery time inbetween. We're off down to London next month to see my favourite band, power metallers Serenity, and this will be the first test for a while. 2013 also marks my second attempt to attend a festival since falling ill. What is this madness, I hear you say? We're in a hotel, know a good stall to eat at and having had the disastrous first attempt (last year) we now know what not to do! I'm hopeful this year will be much better. I've been attending Bloodstock Open Air since I was 18 and it would be a shame to lose what is now an annual tradition.

• Exercise - whilst there's very little that's entirely specific, this bears a mention. I used to walk everywhere I possibly could and living on the edge of the Peak District when I lived with my Dad meant I had a great love of walking for pleasure. I struggle to do this now as my knees and hips don't respond well to the pressure of uneven ground, and I tire very easily much to my frustration. I have found Pilates to be a good alternative - not only can you do it inside in the warmth and comfort of your own home, but it's low impact and also good for flexibility and strength. I'll go into more detail with this in another post. Now I've moved to York I do intend to re-take up pole dancing - it sounds a bad idea on the face of it, but I didn't find it painful for the six months or so I engaged in it before, and it is fabulous for strength building. It's an often misunderstood and yet entirely valid form of exercise - I digress, and I sense another future post in the offing there!

• Socialising - I've said over on my Dramatis Personae page that I count myself fortunate in being able to maintain a social life - the main difference for me is having to plan. Two nights or days in a row doing something is now no longer an option, and I have to weigh up how close events fall to one another quite carefully before making any decisions on attendance. There will of course always be times when two important things fall close together and I will need to just grit my teeth and get on with it, but I'm hoping being sensible in the mean time will hopefully stop those occasions from being too damaging. I'm hugely lucky in having a fantastic bunch of friends who are very understanding if I have to cancel at the last minute, or unfortunately have to decline based on proximity to something else so thankfully nobody gets offended. 

What has everybody else had to give up? I'd love to hear about anyone else's experiences.

The Scotch Mist Is Coming....Please Accept This Shortbread!

(Apologies for the appalling Garth Marenghi's Darkplace reference. It's 8am, that's my excuse.)

The above image is from Chronic Illness Cat, a submissions-based Tumblr blog offering a humorous take on being chronically ill - in all shapes and sizes. I thought I'd write a post today about the dreaded "Fibro Fog".

Fibro fog, or brain fog, is an umbrella term for the cognitive difficulties caused by the condition. These include lapses in memory and concentration, mixing up often simple words and general confusion. Brain fog has been the subject of extensive study and the prevailing theory of the moment seems to be that, from the results of functional MRI scans of the brain, the part of the brain dealing with emotion never switches off in chronic pain patients - it is constantly active and attempting to process everything in the surrounding environment. This is thought to effectively "wear out" neurons in the affected areas and generally affect the balance of the brain as a whole. (Arthritis Today)

The above somewhat tongue in cheek example is actually pretty accurate for me. I do have blips such as that - picking up a perfectly run-of-the-mill object and for a few seconds being unsure what I'm supposed to do with it, or even why I picked it up in the first place. I'll be honest, these instances amuse rather than frighten me. It's as if the brain inside my very dark haired head is taking the opportunity for a "blonde moment" while it has the chance.

The scarier instances for me are when I can't remember how I arrived somewhere. The best example I can give is from a day at work, when roughly three hours after arriving in the office I spent ten minutes panicking because I couldn't remember for the life of me how I got to work - whether I'd brought the car or taken the bus. It turns out I'd caught the bus and that was why I couldn't find my car keys or the yellow token for the multi-storey, but for those ten minutes the entire hour and a half from leaving my front door to arriving in the office reception was completely missing from my memory. It's one of the reasons I now don't like travelling in the car by myself, in case it ever happened whilst travelling and I forgot where I was or where I was going. It hasn't happened yet, but the very real possibility is quite a frightening one.

So how do I deal with this? Probably not that well all told, but I'm still learning. I try to take deep breaths and count to ten, and remind myself that the memory will come back (it always has done in the past, though I'm not sure if this matches others experiences) in its own time. It would be nice if it didn't disappear at random, but I just have to wait for it to reappear.  The best thing I find is to try not to panic - this only serves to heighten the disorientation, and as we all know anxiety isn't all that great for future pain levels. Momentary lapses in concentration and discipline result in days of recovery later.

My specialist recommends working the brain and memory as much as possible to combat this, or at least to hopefully slow down any deterioration. I'm a quiz fanatic so like to do general knowledge quizzes (any instance of breaking double figures on University Challenge is legitimate cause for celebration in my book). The main thing she recommended however was word puzzles - wordsearches and crosswords, or games like Scrabble. Anything that puts your mind and recall to work will do.

On this note, I once spent three hours teaching myself the entirety of Skyrim's "Dragonborn" theme - in the dragon language. I'm still wishing I had a good excuse for it, but it did keep me occupied and I remember probably 90 percent of it now without looking at the lyrics - not bad eh? Useless, granted, but still not bad.

I promise this is not just an excuse to further my nerdy love of gaming (well, it mostly isn't?) but I often find that particularly immersive computer games are a help in this light - they require concentration at a given level for however long you play. Roleplaying fantasy games such as titles from the Forgotten Realms and Elder Scrolls series are particularly good examples - also, taking your frustration out on a roving band of orcs has never made anyone feel worse.

I admit it, that gives me a sound excuse to play more Skyrim and stop blogging. As such I ask your forgiveness and for a little indulgence.

Clothes are the Mind Killer

I'm going to surmise this is something other chronic pain sufferers especially will have come across, although it may be relevant to anyone who has bowel/bladder issues too. Clothes - or more precisely, close fitting clothes.

I don't seem to suffer hypersensitivity flares too often, but when I do they mostly centre around my legs and abdomen. This means some clothes (or indeed, most of them at times) are out of the question.

I realise there will be people who suffer with sensitivity more than me and even what I'm going to suggest would be too much, but I thought I would try anyway.

Particular clothing types I've found "safe" and may be something handy to look out for:

• Floaty tops - usually the material will be light and so forgiving on aching joints and muscles, and also they tend to skim out from the chest and so don't touch the abdomen and tops of the legs. I invested in one from Wallis last summer which was similar to this one in their current range, and I must say I love it: 

• Tunic dresses - the less form fitting the better. I'm struggling to find an example that's in any way close to the ones I have however. I've been living in a couple of woolly winter ones the last couple of days after a fateful trip up the road to the shops in jeans saw me laid up for the rest of the day. Never has a pint of milk been so difficult. 

• Loose trousers - thin linen ones or indeed combat pants are good bets. A tip a lot of people never seem to consider is that there's no harm in buying a size too big for the sake of comfort - I'm a British lady, so I know all about large thighs haha! This pair of linen blend pants have been at Next in one similar version or another for the last couple of years and are wonderful for comfort and in not hugging the legs. They also do the same linen blend in shorts for summer. 

• Loose floaty skirts - much the same principle. The less the material touches your skin, the less pressure and therefore less pain to be produced. The below skirt is from H&M and is similar to one I bought last year which had an elastic waistband and then thin floaty material to about knee length. Utter comfort.

• Two thin layers instead of one thicker one - I confess to some bias here due to my love of a chequered shirt over a vest, but it really is something I've found works for me as it reduces the "weight" if you will on particular joints or muscles by spacing it between two different shaped layers with different coverage. Obviously it's not so much use in winter, but it's a thought for when it's a little warmer. For winter, thin thermal base layers which you can find cheaply in any supermarket can serve a similar purpose.

Why I Talk About My Illness

This is actually a post made over on my Tumblr blog a week or so ago, but it had such a popular response I thought I'd put it in here too. It sums up what the message of this blog truly is and how I feel about the problems facing those who are ill. I hope it strikes the same chord here as it appears to have done over on Tumblr:

There’s a community online that a lot of people are unaware of, or willfully distance themselves from. We have a myriad of different problems but all identify together regardless. We’re the Spoonies – or for those unaware of The Spoon Theory and all it represents, we’re the chronically ill.

Chronic illness comes in all different shapes and sizes as with all aspects of life. You’ll no doubt have heard of some and possibly not others. The list to many of the spoonies is as familiar as the back of our own heat-therapied hands: Crohn’s Disease, Ulcerative Colitis, Fibromyalgia, Lupus (SLE), Ehlers Danlos Syndrome, Eczema and associated skin problems, Chronic Fatigue Syndrome, Interstitial Cystitis, ME..... All are different and yet they remain united by one crucial thing – the profound effect they have on the sufferer’s life.

I’m not writing this to talk about how much chronic conditions suck and I’m not here to moan.  I’m here to offer a perspective on why we talk about our problems as openly as we do, as it inevitably rubs plenty of people up the wrong way. I’m British, and we’re culturally supposed to maintain a stiff upper lip and not discuss anything problematic.

No matter how elegantly constructed and well-meaning the words, we always face the possibility of being accused of attention seeking, of begging for sympathy, of complaining too much. I would take an educated guess that not one person in the wider circles of those I interact with has yet to have this levelled at them. It’s usually thrown about by those who don’t suffer themselves, or possibly by those who know a sufferer who deals with their condition differently.

Of course everyone has a right to their own opinion, and good luck to them. However, that doesn’t bestow the right to try to police how others deal with what is a very personal and individual problem. The key here is in that individuality: some people deal with a problem by bottling everything up and never speaking out; others have to have a good moan to vent their frustrations. Neither approach is right or wrong on general scale: as long as it works for the person and they’re not hurting anyone else, that should be good enough.

One thing I have noticed however is that these individuals who are affronted by openness never ask the opinion of the ill person. They never ask them to explain their approach or why they feel it is the right one for them – they merely assume their own feelings to be of paramount importance and no alternative view to be of consequence.

So I’m writing today to give the other side of the coin.

Firstly, I have Fibromyalgia and Interstitial Cystitis. Interstitial Cystitis constitutes permanent inflammation of the bladder wall (I’d compare it to having the permanent feeling of having a water infection). I’m very lucky in that my IC is quite mild and controlled easily by medication. Aside from the odd painful and inconvenient flare up, I get by pretty much without incident. My main problem is the Fibromyalgia.

Fibromyalgia is a bit of a mystery to doctors. They don’t know why it happens or what causes it – they’re not even entirely sure how to categorise it. The prevailing thinking at present is that it has some elements of an autoimmune condition (tests confirm most suffers have abnormalities in their levels of substance P, a component of the immune system) and is also characterised by a profound effect on the nervous system and the way it and the brain interpret pain signals. This leads to the phenomenon of central sensitisation – an effective re-wiring of the nervous system so that even the slightest touch can cause pain and tenderness. Most sufferers find themselves to always be in a certain level of pain, with muscles and joints (or the fibrous tissue surrounding them) feeling constantly overworked even when they have done very little. Fibromyalgia also effects tiredness levels (sufferers lack enough REM sleep in their sleep pattern) and causess sensitivities to every day foods, sounds and smells, affects the function of the bowel and bladder and can also cause cognitive dysfunction and memory loss often known as “Fibro Fog”.

I say this only to illustrate that I am a person who understands – how can you not, when you go through the same thing 24/7?

We don’t talk on blogs about our conditions because we’re seeking attention. We do it to share experiences with the wider online Spoony community, who are one of the most tangible sources of support and guidance available to us. It is sadly true that in a lot of cases sufferers know more than the doctors who treat them about their bodies and what they need. Suggestions and tips come nine times out of ten from other Spoonies as a result. We also offer our own experiences so that other sufferers know they are not alone, and that a person is listening and understands. When you can’t leave the house and have the social life you had when you were healthy, the internet can be an important source of comfort. Loneliness and feelings of guilt and lack of worth are frighteningly common amongst those with incurable conditons – would you want to feel alone and ignored if that was how you felt day after day? It sounds like nothing, but a reply on a blog stating “I understand” can mean the world to another person.

We don’t update Facebook because we’re begging for sympathy. We do it to keep friends and family in the loop, to have the occasional ten second vent and to raise awareness. A lot of the conditions mentioned are "invisible illnesses". This does not mean as some people assume that they are made up and are actually non-existent because they cannot be seen - that's why they're called invisible, after all. One of the biggest problems faced by those who are ill in the wider population is the lack of understanding and the wealth of misconception perpetuated by those who do a quick Google search or skim read a Wikipedia article and assume there is no more to know than what they find there.

Eczema isn’t always just itchy skin when you’re a child. Fibromyalgia isn’t being a bit sleepy. Crohn’s Disease and other inflammatory bowel diseases aren’t just bouts of diarrhoea. Depression and anxiety aren’t just new “trendy” conditions to mask being a bit low.  Lupus isn’t just a joke on House.

A friend of mine is running 1000km in 2013 to raise awareness about eczema and to raise money for the National Eczema Society. He’s doing this because his partner suffers horribly with it and associated  skin conditions which have a profound effect on her life, and yet the standard response to a mere mention of this is either dismissal or “try E45.” (For the record, I don’t recommend E45 to anyone – it’s full of lanolin and that’s not a good idea for a lot of people with sensitive or irritable skin.)

For anyone who may be interested, his link is here: http://1000kmchallenge.tumblr.com/

And lastly, we don’t post merely to complain. Sure, we all complain occasionally which I don’t think is unrealistic or indeed unexpected – but why is it that when someone who suffers with a chronic illness posts, the instant go-to is “shut up attention seeking”? I’m sure we all have friends or acquaintances who post repeatedly about headaches and colds – why then is this different?

Personally I try to poke fun and laugh at my conditions – it’s part of my coping mechanism and often it makes other people laugh too, which is always nice. My own personal inner demon has a silly name granted by a friend which has stuck. The existence and popularity of blogs like ChronicIllnessCat prove that this is the method of choice for others too. Laughter sometimes is one of the best forms of medicine.

And remember that lastly if you don’t want to read someone’s posts about their illness, all websites have a hide or block function which you are free to utilise at your own discretion. However, if you took ten seconds to just re-read and think about what the person is going through and think about the varying reasons they could be making those posts, possibly you’ll find that you don’t really need it after all. 

Helpful things

Things which are helpful are entirely individual to each person, but I thought I would do a post highlighting mine.

1. Hot water bottle
It's such a simple thing yet often very beneficial for both a histrionic bowel and general aching. Mine lives in a fluffy hippo cover, because I'm a massive child at heart.

2. Toll the Hounds by Steven Erikson
This is more a reference to the entire series (The Malazan Book of the Fallen) than to that one book. Whilst I find reading anything to be a relaxing activity and therefore beneficial, the Malazan books own a very special place in my heart. I began reading the series just before falling ill, and it so happened that through each time I went in to hospital, each difficult appointment, each trip to A&E and each disappointing negative result I was reading one of the ten book series. The series is Tolkien-esque in both epic scope and seamless world-building and so provided me with a total escape from everything. I could forget about the pain and the fact I still knew nothing about what my body was doing to me and immerse myself in the world of Wu and its colourful cast of characters. In a way I find difficult to describe these books have become a tangible source of comfort and catharsis for me - I actually wrote to the author with the effect the books had on me and to tell him how much joy and comfort they gave me, and received a reply from him which I will always treasure. My pain management clinician told me that attachment to books, music, films and the like isn't uncommon for those with incurable conditions. Do you have any particular attachments like this? What are they?

3. A CD player
Music is a great escape and mood lifter. I like most people have quite a collection, but because I do quite a bit of work on my computer I devised a Youtube playlist to run in the background. Mine contains all sorts - particular bands such as power metallers Serenity, Edguy and Sonata Arctica, classical crossovers like Il Divo and Russell Watson, odd songs I really love such as Rufus Wainwright's Hallelujah, Bruce Dickinson's Jerusalem and Sixpence None the Richer's cover of Don't Dream It's Over, film soundstracks such as The Hobbit and The Lord of the Rings, game music from the Forgotten Realms and Elder Scrolls series as well as the work of Youtube artists Malukah, Peter Hollens, Lindsey Stirling and Miracle of Sound. There's no particular defining quality besides that they all make me smile. I have it playing now as I write.

4. Lavender bunny
It's not a cuddly toy, although it looks like one. It's a microwaveable wheatbag! As it heats it releases a relaxing lavender scent and is also easy to place on any part of the body or, especially useful for me as my Fibro likes to attack my hands, easy to sit with my hands around it. Heat is an absolute must for me when the pain strikes.

5. Fibromyalgia Serenity Prayer mug and Awareness keyring
I bought the mug from Cafepress because it made me smile. It's a version of the Serenity Prayer ending "And grant me the wisdom to hide the bodies of the doctors I shot when they said "You're perfectly healthy, it's all in your head." The keyring is from Zazzle and part of their illness awareness range. I like to make small purchases such as this to help the cause. It features the fibromyalgia butterfly (symbolic of metamorphosis and the lightest of touches causing pain due to our hypersensitivity). Other awareness symbols to look our for are the Cranberry Ribbon (fibromyalgia specific) and the Purple Ribbon for all autoimmune conditions.

6. Thermal base layers and ski socks
Heat is a must for me and keeping warm is of paramount importance. Those socks are leftover from my days as a skiier but any thick woolly socks work just as well. The base layers came from Sainsbury's, but any supermarket or clothing store should stock them fairly cheaply. They make a world of difference despite their deceptive thinness.

7. Heat therapy gloves
These fingerless gloves fit snugly to the hand and are made of neoprene, which traps heat against the skin. I found my hands feeling warm after just a few seconds of wearing them. They have been invaluable to me as they allow me to regain some dexterity when my hands are bad - which has been wonderful as one of my main hobbies is sketching. Here are a couple of different options:

http://www.easylifegroup.com/neoprene-heat-therapy-gloves-3215

http://www.coopersofstortford.co.uk/sku/D052BUNDLE/group_id/5435A32C-DE64-4370-895C-C46E68D8B61B/coopers-of-stortford-neoprene-heat-therapy-gloves-buy-1-pair-get-1-pair-free-prodd052bundlei/

8. A box of spoons
This was a lovely gift from my friend Jenny, a fellow awareness blogger who lives here: I Have Eczema. It's a little ornate box filled with tiny spoons. I have it sitting open on my computer desk and it always makes me smile.

What are your helpful things? I'd love to hear about them.

Greetings!

Hello all!

I'm The Retired Bridgeburner, and this is my new blog about all things chronic illness related. I aim to keep the complaining to a minimum and the awareness raising to a maximum.

For anyone who's interested, the moniker is a play on my medical issues and also a nod towards the superb Malazan Book of the Fallen, an epic fantasy series written by New York Times bestselling author Steven Erikson.

So, about me? I'm 23 and up to being 21 was a pretty healthy young woman, something I took (like most people) almost entirely for granted. Summer 2011 saw me initially come down with bowel problems and unexplained weight loss. After a change in doctors surgery (the previous one believing nothing but Irritable Bowel Syndrome was possible) I was sent to Gastroenterology. After a colonoscopy, gastroscopy and pill endoscopy later in Spring 2012 these problems was attributed to "functional bowel issues" and I was left pretty much to fend for myself. During this time however problems started to develop in other parts of my body.

I began to have what appeared to be recurrent water infections - or just one very persistent one that five lots of increasingly strong antibiotics couldn't touch. Through a friend of a friend I discovered the condition Interstitial Cystitis and further reading proved I ticked virtually every box. I was eventually referred to Urology who confirmed the diagnosis inside five minutes. I count myself lucky - it's relatively mild and taking Amitriptyline keeps it under control aside from the occasional inconvenient flare up. I do have slight amounts of stress incontinence (sneezing is my body's particular favourite mechanism) but nothing too major thankfully.

Whilst awaiting my Urology referral the muscle and joint aches and weakness I am now used to began to make their presence felt. The perpetual tiredness became more pronounced and my memory and concentration began to suffer. An alarming tendency to feel pain at the slightest touch surfaced, and I found myself suddenly hugely sensitive to sudden noise and any perceived lack of space around me.

Just before Christmas 2012 I saw a new GP (entirely by accident, which proved to be rather fortuitous) who seized on the muscle and joint problems and asked if I would be happy with her doing the pressure point test I'm sure fellow chronic pain sufferers will be aware of. After having me nearly bouncing off the walls with pain, she confirmed the diagnosis of Fibromyalgia. Upon reading through my records she attributed the ongoing bowel issues to being one of the peripheral effects of the overall condition and assured me that whilst I would never be cured (save for the possibility of leaps in current medical knowledge in my lifetime) I could successfully achieve some level of management.

I'm sure others will understand the overwhelming sense of relief which accompanies final diagnosis. Finally, you know you're not imagining anything. Finally you know you aren't going mad.

Finally, I had answers.

Currently, I'm in something of a better place. I quit my job at the end of January 2013 and moved in with my partner to achieve a more stable living environment and also to reduce the travelling. I had been looking for a job to relocate with for nearly a year, but we very definitely needed a swifter solution. Previously we made 130 mile round trips each weekend to see one another, and this inevitably took its toll on my health.

I intend for this blog to be a place of raising awareness and generally shedding light on the poorly understood world of the chronically ill.

For now, here are some links for you all to look at (EDIT: Please note these links and more are now available on The Warrens tab, my links page):

The Spoon Theory by Christine Miserandino, a wonderful way to explain chronic illness and its effect on day to day life (and an explanation of all the "spoons" references we make!): http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

FMA UK, the UK's national Fibromyalgia charity: http://www.fibromyalgia-associationuk.org/

The IC Network, an Interstitial Cystitis information hub with an extremely comprehensive food sensitivity list: http://www.ic-network.com/

Chronic Illness Cat, a Tumblr blog offering a humorous take on the quirks and travails of being a Spoony: http://chronicillnesscat.tumblr.com/