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