30 Day Chronic Illness Challenge: Day 16

Day 16: What's your favourite inspirational quote?

(Anybody any idea what the heart on the fence is about? Good, glad it's not just me.)

I think I first came across the quote in a film as a teenager, and it took me a long time to come to the realisation that it not only applied to other people, but to yourself also.

I often think (speaking as someone who was a neurotically insecure teenager) that we’re our own worst enemies in this regard. Human nature often dictates that out of one hundred experiences, we’ll ignore the ninety-nine positives in favour of paying attention to the one negative one. I definitely possessed an unparalleled ability to talk myself into believing this sort of thing. It’s taken me until recent years to discover that I’m just as capable of flipping the coin and arguing the other side of the issue.

Whilst you have the power to not let what other people say affect you and make you feel inferior, you also have the power to stop yourself perpetuating the problem. This certainly applies to the chronic illness experience as I know I’ve been guilty of allowing myself to be convinced it’s all my fault and spiralled downwards from there. However, I don’t allow myself to do it any more.

Time we were a bit kinder to ourselves, I think.

Although I must admit in passing it's not my absolute favourite quote. That one is from A Knight's Tale, which as gleefully anachronistic historical comedy goes is hard to beat in my book. It makes no sense out of context, so you'll have to take my word for it that it's funny. Better still - go watch the film!

(Paul Bettany as Geoffrey Chaucer: The Lily Among the Thorns
Image from cinelstudio.com) 

 

"Yes I lied, I'm a writer - I give the truth scope!"

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 14

Day 14: Give five things you are grateful for.

1. Friends and family

You don't realise how important a support network is until the moment you need it. I've spoken about the friendships gained through the common ground of ill health (joining in mad schemes and otherwise...) but I don't think I've necessarily given those who have always been there the credit they deserve. I won't sit and list, this isn't Myspace and we're not 12 any more, but you all know who you are and I feel very lucky to have you. I remember a school teacher once saying to me that we have different friends for different reasons - so whether you're a friend I come to for advice, someone I only see once or maybe a handful of times a year or someone I just want to be silly with, it's all a part of that same support system and you're all equally appreciated.

2. Escapism

If I sat and listed all my go-to books, films and games which make up my own particular brand of much needed escapism, I'd be here all week and you'd all be asleep for sheer boredom. More to the point if you've been reading for a while or read back across my earlier entries I'm sure you'll have formed a pretty good idea of what they are. Suffice to say as something of an introvert I have always needed time to myself to "recharge", and this has become an absolute necessity since becoming ill. Contrary to most peoples perceptions on introverts I'm a very sociable person - I just need quiet time to recover afterwards. Working on limited energy to begin with has made this even more important.

3. Comparative luck in the severity spectrum

I'm sure from reading this blog you've gathered life isn't a picnic compared to when I was well, but in the spectrum of the bigger picture it could be a great deal worse. I'm not bedridden, I'm not disabled and I can hold down full time work and a social life of some kind (albeit with a less than perfect sickness record, but expecting anything else would be foolish). I decided some time ago I could sit back and grow bitter over the negative impact on my life, or I could reflect and be grateful for all the things which aren't happening to me that people I know with the same condition suffer through. I don't think it always comes easy, but perspective is a very helpful tool in safeguarding mental well being - as mentioned in the previous day's question and answer.

4. Amitriptyline

The medicine of the gods as far as I'm concerned. That isn't to say it works for everyone and doesn't have side effects (of which I am thankfully free) but after a week or so of building up in my system I had my first full unbroken night's sleep in around six months. When I woke up in the morning with my alarm I could have wept for joy. It wouldn't be true to say I don't have bad nights any more, and I still have days when I wake up without feeling refreshed in the slightest, but for me finding a way to get a full night's sleep was probably the biggest and most important step.

5. The Retired Bridgeburner

A name combining a play on a love of Malazan, a stubborn attitude and medical retirement, this blog came into being in response to a realisation that a lot of people were too frightened to talk about what they were going through because of negative and hurtful reactions from people around them. I've had a share of that, but I realised helping to stop people from feeling alone was far more important than worrying about the opinions of the ignorant and the petty. Writing the blog has been cathartic and enjoyable for me, but also I find it difficult to put into words how happy I am with its success and the overwhelmingly positive response it receives. I said when I started to write that if I made just one person smile or feel a little bit better then it would be worth every bit of negativity anyone could throw at me.

If my Tumblr inbox, comments on here and personal emails are anything to judge by my whimsy seems to have helped far more than that one person.

Knowing that is almost better than everything else in this list.

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: Day 11

Day 11: Why do you believe you have the illness? Bad luck, a higher power or something else?

Well, this certainly provoked thought. I can’t say that I’ve ever given consideration to the “why” of my situation. I’ve been too wrapped up in the “what” to do and the “how” to improve things to ever sit down and give it the time needed.

I don’t think there is a definitive answer for me. Around the time I first started to come down with symptoms wasn’t an easy or pleasant time for me, but we’ve all had plenty of those so I don’t think I can realistically pin it to that. Partly this question comes down to your personal thoughts on the nature of your illness – given that medical science has given us nothing conclusive, I’m sure everyone has their opinion.

I always remember a friend of mine, the lovely Hapfairy who lives here talking about the idea that eventually science may find some sort of underlying cause or factor of predisposition which will unite a lot of conditions given that there are so many curious similarities. I’ve always leant towards thinking there is an as yet undiscovered predisposition towards autoimmune problems, mostly due to the frequent hereditary links of both specific conditions and general autoimmune disease in families. There are autoimmune conditions on both sides of my family but none of them match mine to date, hence my addition of a possible general hereditary link.

However, I’m not a scientist and nowhere near arrogant enough to assume there is no possibility that I’m wildly off track and won’t be disproved in the future.

Luck? It’s not a concept I put much store into. To me you go out and make your own luck, and if you sat back and felt everything was down to luck or a toss of the dice of fate I can see that being a downhill slope to never doing anything. Yes, in some ways it’s bad luck to have developed chronic ill health, but I’ve spoken before in this challenge about the positive things which have happened as a result which may not have happened otherwise, so for me it balances and is about the way you look at it as much as anything else.

And as for a higher power, I’m not a believer and neither divine will nor life after death give me much pause for thought. In summary of this lack of thought I’ll quote something my Dad (self-confessed Tolkien nut) once said:

“I may as well believe I’m going to the Hall of Mandos.... because that’d be a nice place to end up.”

(Ted Nasmith's "Luthien's Lament Before Mandos" - based on "Of Beren and Luthien" from The Silmarillion.)

30 Day Chronic Illness Challenge: Day 10

Day 10: What little things make your life easier?

I have a few little things which help, and they clearly demonstrate that my answer to “weapon of choice” would be heat and as much of it as possible.

 

I have a wheat bag (it’s a bunny, naturally) for the microwave which has the added nice touch of being infused with lavender, and it allows a greater versatility than a hot water bottle in terms of getting to wherever the pain is. I definitely recommend them for sufferers who find heat beneficial.

 

It also proved to have an amusing secondary usage – my cat licks a lot and if I’m having a particularly allodynia-heavy day it’s not a pleasant experience. Enter the Wheat Bag of Cat Deterrence!

 

I also have some heat therapy neoprene gloves which are wonderful on days when my hands are stiff and painful. I’d advise to shop around – I settled on some which are thin enough to allow pretty normal dexterity but still have a close fit.

Other than that it’s just the everyday normal things that I’ve always loved and enjoyed. At heart I’m a person of simple pleasures – if I’ve access to a good book, some music and a hot bath I’m usually pretty happy. I recently chased down some books I read as a teenager which belonged to my Dad – Bernard Cornwell’s “The Warlord Chronicles” – and I’m happily falling hard and fast in love with them all over again.

(It's King Arthur Jim, but not as we know it! Heartily recommended. Image source unknown)

 

Continuing with all my old loves as much as possible seems to be a great help in keeping my mental state fairly neutral in terms of my illness, although I’d never be so dismissive as to say that chronic ill health doesn’t affect you mentally. Of course it does, but everyone’s different.

 

And in contradiction to what I’ve just said,my cat is definitely someone who “helps”. She’s a constant joy and an unconditional companion. On days when I’ve been stuck in bed she tends to come and sit with me, but seems to know not to sit “on” me as she usually would, and as any cat owner can attest to they do tend to make for chaos and hilarity on every possible occasion.

 

So, Misty should get a nod. Also known as Her Most Furry Whimsicality (she’s a very fluffy lady) and some of my Tumblr followers recently named her “Dovakhitty” due to her interrupting Skyrim in continually more inventive fashion. The current method is to sit directly in front of the monitor so I can’t see anything.

 

Alduin might not slay himself, but that’s of no consequence when it’s time for a cuddle.

 

(Dovakhitty strikes again.)