Eye of newt and toe of frog...

I thought I’d write a post about some of the supplements I’ve been trying – despite the title I promise I’m not doing dubious things with bits of animals, my thumbs aren’t pricking and none of it will make three hags on a moor scream “Thou shalt be King hereafter” either. It’s just the passage which wandered into my head on thinking about this.

I admit it; I was one of those strange children who actually enjoyed Shakespeare when I was at school.

Whilst you’re all digesting with horror the concept of just how little street cred I ever had, onward with no more ado!

(Me at school. Little has changed.
Gif courtesy of Buzzfeed.com)

Multivitamins

I like so many others before me roll my eyes continually at the idea that taking a one-a-day multivitamin will solve all chronic health woes. I find I am incapable of dealing with that level of stupid, so I tend not to say anything any more. I don’t get angry and the stupid person lives to be erroneous another day. Everyone wins except their next victim.

However, it’s one of the few cheaper options in terms of things which may provide a little relief, and even the smallest signs of improvement are a big boost. A GP or a quick bit of internet research should reveal what vitamins and minerals are particularly key for whatever your condition may be – for Fibromyalgia it’s the B vitamins and particularly B12. Fish oil is a pretty solid option too.

So I’ve been taking a multivitamin with all the complex Bs in it along with magnesium (also a good bet) and a fish oil capsule once a day. I’ve been doing so for about six months now, and whilst there’s no huge difference I do seem to be feeling a bit brighter most of the time. This might be psychological, but I’ll take the improvement whether it’s real or not.

Some other options for Fibromyalgia I haven’t tracked down or tried yet include brown seaweed extract, Ribose (a type of simple sugar) and SAMe (S-Adenosyl methionine) a compound which supports immune function.

Fibre Supplements and Probiotics

What’s that I hear? Groaning because I mentioned the f word?

Fibre is my favourite argument to have with GPs. As regular readers will be aware my problems first arose in the form of wacky bowel function. After much time and effort and rather too many cameras in dubious places I hit the Wall of IBS.

What’s this Wall? Seemingly hundreds of bricks repeating “Just eat more fibre!”

Working on the assumption that I did indeed have IBS (I don’t think I do, just for clarity’s sake) I was prescribed Fybogel powder drinks and an anti-spasm medication called Mebeverine. The Fybogel was orange flavoured, the packet claimed. I very quickly started referring to the horrible stuff as “Chernobyl Orange”, because it looked radioactive and tasted awful. Next came a Fybogel drink which had Mebeverine in it to save taking the tablet. This was not an improvement in the slightest and quickly became “Fizzy Chernobyl Orange”.

Aside from giving my inner child the opportunity to think up silly names neither option did anything at all. Probably because I eat a pretty good diet in terms of daily fibre intake as it is, and the pain wasn’t spasms in the first place.

("Fizzy Chernobyl Orange")

The next thing I tried (anything to get away from Fybogel) was a vegetable fibre supplement called Life Plan which is available in most larger chemists and comes (hurrah!) in tablet form. It contains three different strains of fibre the body needs and is mostly vegetable matter in composition.

Never, ever again.

The problem with this heavy fibre approach is my body just doesn’t like it. I don’t care how many times it’s been pointed out that on paper this is the correct answer. Seemingly injecting more fibre into my diet just causes utter havoc.

This fact was what sent me off on a different route. It might appear on the surface that I have symptoms of low fibre intake, but that’s certainly not the case with my diet or indeed does it appear to be the source of the problem. Normal rules just don’t seem to apply and so I started to investigate the area of food intolerance, having had a particular brand of test recommended by a friend. This is definitely something I intend to do once money allows it in the future.

Another friend mentioned having started on a probiotic and it helped to clear up their health issues, so I thought this had to be worth a go since I had a first hand account of its usefulness. The one I’ve been taking is called Acidophilus and recommends 1 or 2 of the 100mg capsules a day with a meal.

The problem certainly isn’t fixed, but it does seem to have calmed down somewhat. I’m definitely getting less of the swinging wildly from one end of the spectrum to the other and float a bit more around the middle, and certainly I’m much closer to normal function than I have been in a couple of years.

The one slight problem with all of this? Our old friend Fibro Fog. This relies on me remembering to take them, which isn’t such a given any more. At the moment I’m experimenting with where I leave them, trying to make sure that they’re somewhere conveniently in eye line whilst I’m cooking so I remember to grab them when I eat. This works reasonably well, providing I remember to move them there in the first place.

Oh what a noble mind is here o’er- I’ll stop it, I promise.

Is anybody else taking any supplements or similar things? Are you finding them helpful?

Wishing you all many spoons xx

30 Day Chronic Illness Challenge: The End is Nigh!

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

1. Holding down a job

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

2. Making it to important occasions

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

3. Remaining active

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

4. Writing the blog

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

5. Grim determination

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


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

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

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

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

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

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

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

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

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


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

Wishing you all many spoons.

30 Day Chronic Illness Challenge: Day 27

Day 27: What's the best piece of advice have had?

Don't be afraid to ask for the help you need.

I'm by nature both independent and stubborn - I don't *lie* needing help, or indeed asking for it. Firmly in character I spent the first few months not really knowing what to do, pushing myself too far because I didn't want to admit I needed support and then naturally making the whole situation worse as a result.

Slowly over time the thought occurred to me that nobody gets hurt if I ask for help. Nobody has to sacrifice limbs or fall on their sword, least of all me.

In fact all that happened generally was that the people I started to go to were relieved I was finally asking, and I was saved from the cycle of over-doing I'd brought on myself.

Being completely honesty, I still don't like it. Wise move or not, the necessity sticks in my throat quite a bit. This probably isn't helped by the unpredictability - to go from a couple of days of being able to do everything to suddenly needing help with the simplest of tasks again really makes me grind my teeth.

Today is one of those days. I woke up feeling quite active but this went down the pan after a couple of hours. As such the ironing will just have to wait and I've done very little beside empty the dishwasher and open the windows. Yes, opening the windows was about the extent of my capabilities. Fate, I find your sense of humour most distasteful.

So, I'm taking a leaf out of my cat's book and settling down for a snooze, and whilst awake getting reacquainted with an old friend of mine - it's been years since I re-read the Harry Potter books, and they're nice for when I want to take my brain out of gear.

(They say pets resemble their owners...)

30 Day Chronic Illness Challenge: Day 25 and 26

Day 25: Name five activities you have managed to pursue whilst being ill, and five activities you may not have done had you not been ill.

I'm only doing three instead of five, as it's becoming increasingly difficult to not repeat myself. 

1. Reading

I'm aware from other people with similar conditions that they run into problems reading - the words move about, they can't focus and concentrate or it brings on headaches and the like. I couldn't be more grateful for the fact that this doesn't happen to me (touch wood).

I know myself well enough to recognise the fact I would go absolutely crazy if I couldn't retreat into a book whenever I needed to. There's nothing I love more in this world than a good book.


2. Pilates

I'm lucky in that eighty percent of the time I manage to at least do a little bit of the workout I use. I struck gold in finding a workout that isn't just pure Pilates and incorporates a little bit from several other disciplines - stretches from a particular form of yoga (I forget which) and some moves from classical dance training. Through a mixture of grim determination and no small amount of pig-headed stubbornness I've kept going with it and if anything my overall flexibility is better now than it ever has been. The downside is I do find I have to do it as close to every day as possible to keep that flexibility and low pain level, but it's a small price to pay for comfort.


3. Day tripping

I can't do this very often any more, and nowhere near as much as I would like, but through careful planning I have managed a few trips since falling ill. The most recent excursion was to Chester to see friends, but also to tick off both my biggest loves: animals and in my own words "things that are a few thousand years old and have fallen over". I really recommend both the city itself and Chester Zoo. The partner in crime and I also managed days at Warwick Castle and Thorpe Perrow Arboretum in North Yorkshire. I miss the ability to wake up on a nice weekend and just throw things in the car and head off, but being able to do some things is always better than nothing.

(Roman Gardens, Chester.)

Day 26: What impact has this had on your friends, family, partner, parents etc?

I'm going to refer back to Day 4 as I've inadvertently answered this already:

30 Day Chronic Illness Challenge: Day 4

30 Day Chronic Illness Challenge: Day 23 and 24

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

It could be a good deal worse.

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

There I go again.

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

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

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

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

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

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

Through the good fortune of having extremely understanding friends.

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

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

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

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

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

Rainmaker

"You tell me we can start the rain

You tell me that we all can change

You tell me we can find something to wash the tears away."

Rainmaker - Iron Maiden

I did something today which sounds small, but as a gesture towards the well being of the inside of my head I think it was deceptively momentous. 

I threw out all the clothes which no longer fit me or aren't comfortable post developing my array of chronic quirks. For the most part this means I've turned my back on jeans and given up on trying to fit into everything I used to wear with ease to just to try and prove a point to myself.

I know, it sounds like nothing more than a part of a normal spring clean. I just realised part way through that this was me finally letting go of my old body. Whilst I've moved forward in my thinking with my limitations, my dietary issues, the aches and pains and all the other symptoms themselves, I hadn't until now quite moved ahead with how I felt about the changes to my body.

Filling that bag was piece by piece putting all the worry, anger and upset away and affirming that I don't need it any more. Subconsciously I suspect I'd been clinging to the hope that somehow I'd wake up one day and my shape would have returned to what it once was, which was as foolish as it was unhelpful.

I've said on numerous occasions my only consistent pain relief is exercise. Now, when your diet doesn't change or maybe even cleans up a little and the amount of exercise you do increases, one of two things happen. You lose weight, or you build muscle. I've never carried very much in the way of excess weight so this left me with only the latter option.

The beginnings of a visible six pack? That I can live with and some days I'm even slightly proud of it. And to be honest with some thought, once the initial "Oh good lord, more leg muscle means bigger thighs" anxiety passed, there's nothing to be ashamed of in legs with a bit more shape to them - even when unplanned.

It occurred to me that fighting with very close fitting garments when you possess an alarming tendency for bloating was only ever going to be a losing battle and only served to be a stick I could continually beat myself with.

Well, said stick has been made into kindling for me to burn at my leisure.

The reality is whilst it's the only thing that works I cannot afford to let up on the exercise, and given that my body adjusts I seem to gradually need to do more of it to achieve the same effect. Given that these changes are only going to continue and it's about time I commanded the reins of the chariot of my confidence and swapped the horse of positive self image into the right hand harness.

So I don't look like I used to. Why does this have to be a wholly negative scenario? It doesn't, but for some reason I'd let myself believe it did. If you use the internet with any regularity you'll no doubt have seen plenty of body positivity messages about loving yourself flaws and all - as with many things it turns out it's an ever changing learning curve. Just because something changes doesn't mean you can't like the new as much as you did the old.

This seems a little wide of the mark in terms of relating to illness, but I assure you there's a purpose here. I've always believed your mental well being is one of the most important aspects in allowing you to find how to cope with chronic illness and all the challenges it brings. Allowing myself to keep raking over the same ground with my self image let the thought become insidious, and it started to have wider reaching effects on my overall outlook.

What brought all this introspection and new resolve on, you ask? I bought myself an Iron Maiden dress. Reading the measurements I realised the changes would actually make it a better fit rather than a more difficult one.

(The rather lovely handiwork of kittyvampdesigns on Etsy.)

When you find a lovely dress you can't help but fall in love with and unintentional muscle development will make it look nicer than it may have done previously, there are only two things you can do.

Accept and embrace the changes, and buy the dress just as fast as possible.


Has anyone else had issues with self confidence and self image as a result of their chronic ill health? How did you overcome it?

Wishing you all many spoons xx

30 Day Chronic Illness Challenge: Day 20, 21 and 22

Apologies for the blip in regular posting! Should be back on track as normal now. 

Day 20: Have you met anyone with the same illness? Did it help?

Yes! I've met some lovely people (mostly through the internet) who have either Fibromyalgia or IC and their support is a wonderful thing. Often it's not direct, it's just about their presence and knowing that there are people out there within reach who need no explanation of what you're going through - they get it. I've said before that other ill people in general are good people to know without sharing the same condition necessarily - there tends to be a level of understanding regardless of the specifics. I do genuinely feel quite blessed in this regard.

To give an example of why this is important, I spoke to a new recruitment agency on Friday and booked a meeting for next week. On approaching the conversation "I was diagnosed with Fibromyalgia..." I was pleasantly surprised to hear in return "Don't worry, one of our consultants has it so you don't need to explain yourself. Do you need to work somewhere which has a lift?"

Completely unexpected and really quite wonderful!

(My old horse riding tutor used to say this all the time - whilst it's fine in theory it didn't stop me wanting to slap him each and every time. It's rather like saying "expect to suddenly involuntarily leave the saddle!" Image from www.123rf.com)

Day 21: What networks or websites have you used for support and information about your illness?

Originally I stuck almost exclusively to medical websites, mostly Patient.co.uk to try to get a feeling for the mass of symptoms associated with FM in particular and just for reassurance I wasn't going mad. I'm sure we've all considered that option at least once!

I was already a Tumblr user and soon discovered that the Fibromyalgia, IC and indeed chronic illness tags were full of people willing to share their experiences and offer any help they could. This progressed into finding forums and eventually Facebook groups.

I've listed the ones I settled with and think are the cream of the crop in The Warrens tab. I find the Facebook groups are particularly good as people tend to be very friendly and open in answering questions on just about anything, and idiocy and nastiness just aren't tolerated. Mostly though, it's lovely to log in on any given day and find my dashboard full of inspirational pictures, thoughts and words. An easy and inexpensive way to start the day well!


Day 22: How do you feel you have been treated by the medical system? Explain.

Whilst I definitely had my share of frustrations with the medical system, I think generally I was treated quite well. I was initially treated under Gastroenterology which turned out to be the wrong department entirely, but we weren't to know that at the time and they were incredibly thorough and I must say didn't mess about in making sure everything that could be tested was.

I was at first still under the GP surgery I had been registered with at birth and they were particularly obstructive - a very "old school" practice which was pretty rigid in its thinking. If it wasn't fixable in one appointment with one prescription they were quite happy to behave as if it was anyway. Once I upped and left, I had a much easier time. I firmly believe had I not moved to the surgery I chose to go to I would still be undiagnosed to this day. Only there did they decide to really investigate all the symptoms, hurry through relevant referrals onward without delay and think a little outside the box.

As much as I and other patients often have legitimate reason to moan about treatment under the NHS, I'm still incredibly grateful for its existence. I dread to think what that first round of futile testing under Gastroenterology alone would have cost me otherwise.

Fate is Inexorable

So says Merlin in Bernard Cornwell's The Warlord Chronicles, which I'm currently re-reading. 

As such I've been thinking about it quite a lot recently.

A warning as we start - this post begins with a bit of a moan. Sometimes unpleasant things happen as a result of being ill and I don't see anything particularly beneficial in cushioning that fact by surrounding it with rainbows and pixies. Whilst this blog is a place of positivity, I'm firmly against the idea of it ever becoming unrealistic.

Part of my new job is scribing for meetings anywhere in the country and this week's particular meeting was about 100 miles away. My hometown of Sheffield sits bang smack in the middle of the route so I decided to break the first leg of the journey up and take the opportunity to spend an evening with my Dad. I thought this would be a sensible move and would make things easier for me.

This turned out to be a bad move. Unbeknownst to me there was a huge incident on the motorway and so a huge of delay of at least four hours right on top of my junction of choice. The tail back reached some three junctions back northward and I escaped at the first opportunity hoping to approach Sheffield the long "back way" round.

As a plan this had little wrong with it - except the fact that most of South Yorkshire had the same idea. A journey of usually just over an hour ended up taking nearly three. It was 28° in my car which doesn't have air conditioning and the crawling progression allowed virtually no breeze to be built up via movement. The main problem however was that my legs, used to a routine of stretching and exercise each evening, locked up. The muscles burned and my knees and ankles started to feel like someone had taken a sledge hammer to them.

(No, really? If you hadn't clarified that I certainly wouldn't have noticed the miles of stationary traffic. Image courtesy of petrolblog.com)

When I eventually arrived my Dad had to lift me out of the car and carry my inside. To put that in some perspective the last time he had to do that I was 12 and had acute appendicitis. Having it be necessary again at 23 made me feel less than spectacular, it must be said. Thankfully with rest and heat the problem subsided enough to be bearable for the rest of the night. 

The point of this anecdote? An illustration of the truth behind the old adage: the more you plan, the more room you have for things to go wrong. 

Understandably as a chronic pain and autoimmune patient I do a lot of planning before undertaking anything particularly momentous or complex, and in essence that is sensible. That way I have more time to think through potential problems, weigh up risks and make a mental list of things I might need to have with me. Despite said aforementioned adage I generally feel better having done all that. 

The spanner in the works is that Petunia is a spiteful hag, and can and will play up whenever she feels like it and care not a whit how much planning I may or may not have done. 

I'm sure other sufferers will recognise this concept - the cold hard truth of these illnesses is that not only are they invisible, they are capricious and unpredictable to a fault. No matter how careful you are, this truth will eventually prove your undoing at one point or another.

My question to readers therefore is this: do we allow our lives to be put on hold as a result? Do we sacrifice all the things we'd like to do against that intangible possibility?

My answer? 

Over my dead body. 

I've said this before in previous posts, but I'm a firm subscriber to the school of the thought that, illness or not, life is for living and not just existing. If you never did anything which carried an element of risk, then sad to say you would never do anything at all. Obviously everyone's capabilities will differ because their conditions are wholly individual, and despite what I've just said everyone will inevitably have things which are completely beyond their health's capabilities. 

Regular readers will know my next big step coming up is attending Bloodstock Open Air - I don't want to come across for even one moment as if I'm assuming that sort of thing should be a standard for other patients. 

Generally speaking though, each morning you wake up with chronic ill health you could possibly have a flare up that day. You could also be hit by a bus, or win the lottery. You will never know until you try. In my eyes it's better to meet the likelihood of a sudden flare up with equanimity - these things happen, as we know - and continue on with whatever you set out to do. 

There are no standards except the ones you set for yourself. In some ways what I say and what one hundred other patients say is all just so much expended oxygen. 

On a related note, a girl approached me recently to give me her opinions on the blog. I've always welcomed feedback both positive and negative, particularly the latter as it gives me scope to improve. The girl was a complete stranger and suffice to say that her opinions were poorly informed and her manner quite rude. Her main point however was that I make a terrible spokesperson because "You have to be a damned sight more attractive than you if you want people to pay attention to anything you have to say."

Now, if I let her words be the standard I could let the risk of her being correct stop me writing The Retired Bridgeburner. Taken a step further I'd end up never leaving the house for fear that whatever I set my hand to my efforts would be completely wasted because I don't look like a model. 

However, I won't do so.

Sorry my dear, but I have a festival to get to!

(Metalrecrusants.com)

Do you have any thoughts on how you approach the inevitable unpredictability of your condition? Feel free to open discussion with comments below. 

Wishing you all many spoons xx

30 Day Chronic Illness Challenge: Day 19

Day 19: How do you feel about the future?

Mostly fine. I'm a bit of a worrier by nature - if there's the possibility of an issue I want to do all the thinking beforehand and inevitably the issue doesn't then arise and I feel pretty foolish. However, it just isn't in my nature to go along for the ride and trust in luck to see that everything straightens out in the end. It takes all sorts after all.

Oddly this personality quirk doesn't seem to extend to my health, a foible I'm very grateful for. One of the first things my diagnosing GP said to me was that Fibromyalgia degenerates with age - that fact is as certain as it is unavoidable. In my mind I could worry about the specifics of when and how this will come to pass, or I could do as I am doing and go forwards with the will to do as much as I can for as long as I can. I don't want to potentially reach an age where I look back and regret everything I didn't do with my former comparatively better health.

If anybody's seeing a pattern of a mulish attitude emerging in these answers, that's not a coincidence. I'm extremely stubborn, be it gift or curse.

(Alarmingly accurate given that I'm also rather small. Image courtesy of gelaskins.com)

Whatever the future holds, the gods of Fibromyalgia and Interstitial Cystitis will not be taking me down without a fight.

30 Day Chronic Illness Challenge: Day 18

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

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

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

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

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

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

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

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

30 Day Chronic Illness Challenge: Day 17

Day 17: How would things be different if you weren't ill?

In a general sense I'd be far more care-free, and I'd still be running around headlong not worrying about tiredness or pain and thinking purely about saying "yes" to everything, getting out there and doing it.

I had been considering an Open University degree, but there is no hope whatsoever of me being able to hold down full time work and commit to such an undertaking. However much I rail against the fact it remains true that I just don't have the energy any more.

A lot of the answer to this question is difficult to quantify - long term ill health touches on almost every aspect of day to day life, so whilst it would certainly be different it's hard to sit and list all the various ways. Domestically speaking I was always one of those people who wanted to clean and do housework all in one go, whereas now I have no choice but to do a little bit at a time. It frustrates me because I'm very bad at sitting and looking at things which need doing. I haven't quite kicked the habit of giving in to the urge and then running headlong into a flare a couple of days later.

I think the most prominent thing is feeling the restriction against what to do at weekends. We've had glorious weather recently and given free reign I'd have been jumping in the car and going to the coast or up into the Yorkshire Dales for walks. Now I have to sit and consider the driving time, what I'll be able to do when I get there and whether it is in fact worth it. Sadly, it generally ends up being a no.

I have managed a couple of excursions this year though, so it hasn't been a complete loss. I do sometimes find I'm incredibly angry with my loss of freedom though. Again, it proves the adage that you don't appreciate something so simple until it is no longer available to you.

On the flip side though, it has taught me to be organised, rather than running around like a headless chicken hoping everything would eventually fall into place and that triple-booking myself on a given day would turn out alright in the end.

Until I feel up to another excursion I'll continue to hole myself up with Battlestar Galactica. Even if I'm not getting outside, this gem of a show is keeping my brain working all the time. I recommend it to fans of Sci-Fi - and if you have seen it, no spoilers, I'm only in season three!

Nobody Expects the Spanish Inquisition!

.... and particularly not over their diet.

("Too inquisitive! Should have been the Spanish Casual Chat!"
"Circle", Eddie Izzard. Image from auntiemomo.com)

As we all know I put a fair bit of time into keeping abreast of things going on in the chronic illness community. Yes dear readers, I was one of those irritating children who always did their homework and even sometimes dared to enjoy doing so. Old habits and all!

Something I’ve seen a terrifying amount of is people (usually incredibly courageous in using the website’s anonymity function) expressing the opinion that chronic ill health only happens as a result of what the person is eating.

That’s it everyone, the mystery is solved! If we all stop eating chocolate, bread and milk we’ll be cured! Sounds legitimate to me, I can’t wait to start feeling bet.....

... Anybody else seeing the problem?

Wait, you mean the rather colossal and looming one that goes something like don’t you think we might have tried that already?

To take this out of the chronic illness sphere for a moment, this touches on something I strongly believe in. Nobody else has the right to comment on what you eat or on the effect that has on your physical shape and health. Your diet is entirely your choice and I firmly believe it is therefore nobody else’s business. I’m sure we’ve all seen the sort of stupid comments which accompany photos on the internet – usually along the lines of “go eat a sandwich” or “who ate all the pies” dependent on how the victim doesn’t fit the incredibly narrow version of normality those commenting possess.

We even have memes backing it up. Hands up if you’ve seen the “Real men like curves, only dogs go for bones” one? The fashion and media industries are constantly piling on the pressure to be thin, the masses cry. Now I'm not saying for a moment that isn't true, but apparently this makes it OK to pour bile and vitriol upon thin people.

(Good old Philosoraptor.)

Can you honestly sit there and justify that one is any better or worse than the other? One body type has been demonised so now the demons are fighting back by inflicting the exact same thing on the body type opposite to their own. And so the dance goes on, and on, and on.

Here’s a novel idea: how about we accept everybody is different, that their diets are different, and leave each other alone?

Bringing this back on track in terms of chronic illness, in doing some research on the role of diet I found lots of references to “Leaky Gut Syndrome.” A more detailed look can be found here but to all intents and purposes LGS is increased permeability of the lining of the intestines, leading to not only toxins escaping into the body, but to malabsorption of essential nutrients which also escape. The theory goes that because a large proportion of the body’s immune system is located in and around the digestive system, this leakage causes inflammation and could be a factor in a lot of autoimmune problems.

Amongst the conditions listed as potentially linked to LGS we find Fibromyalgia, CFS (ME), Irritable Bowel Syndrome, Inflammatory Bowel Disease, Arthritis, Eczema and other conditions which are either lacking a clear pathology or in the least are poorly understood in terms of why they appear.

Despite my opening comments, I’ve never been against the idea that diet (and particular foods more so than others) have an effect on overall health. My problem is with other people passing comment as if coming from a place of superior knowledge, and as much as I hate to pedal negative stereotypes here on TRB it is usually the perfectly healthy who seem to feel the need to do it. 

On a personal note with the question of diet I recently decided to cut bread out of my diet during the week and allow a treat at weekends. In essence I've swopped my usual sandwich lunch for either vegetable batons and houmous or salads. The next step will be to go onto gluten free pasta as opposed to the regular product. I don’t have Coeliac Disease but I am fairly sure gluten is becoming a problem for my bowel nonetheless.

I’m excluding slowly in stages because my gut takes umbrage if I do anything quickly – several extremely painful encounters with this problem have taught me to take the “slowly slowly” approach. I’m going to do this over the course of some months and then see if I’m feeling any different. Eventually I plan to make the same attempt with dairy, and I still fully intend to save up for the food intolerance tests I’ve made mention of previously.

Having a quick read of the list of problem foods on the website for LGS, I was very soon struck with the idea that eating would become very boring indeed were I to keep to it exactly. Speaking for myself, I enjoy my food and I don’t want to lose that enjoyment. I’m willing to make attempts but I won’t go the whole hog and turn eating into a chore.

(A simplified representation of the link between LGS and chronic conditions. Courtesy of leakygutcure.com)

Given the views I’ve expressed over the judging of weight, diet and body type I’m of the opinion that there’s quite enough people with an unhealthy attitude to food – whether it be for themselves, societal pressures or the reactions of the people around them – without me engendering a poor view of my own.

And that decision is nobody else’s damned business.

Have you made any dietary changes? Do you have any comments on Leaky Gut Syndrome or on the opinions of others as to the role of diet in chronic ill health? Please feel free to add your comments below, I’d love to open up some discussion with this topic. 

Wishing you all many spoons xxx

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.)