Adventures in Adulthood

(Casually rejecting adulthood in all its forms)

There are some things in life you can never avoid. There are other things that are worth it in the end but come with a list of inevitable side effects and unpleasant aspects you wouldn't wish on anyone.

I found this to be one of the earliest lessons of life with a resident internal prankster. You rather quickly end up in an endless cycle of analysis and decision making about what is or isn't worth the predictable side effects and the necessary days of recovery.

Most things in life you can apply this to. Nobody likes to miss events like birthdays, weddings and family occasions, but sometimes such things are necessary. We all have different things for which we are most prepared to throw caution to the wind.

However, some life events answer to nobody's schedule, analysis or planning. This I have discovered in the process of buying our first house.

Firstly, we're about to exchange contracts so we're almost there. The conclusion cannot come swiftly enough for my liking, and despite having the chance to party I would hazard a guess that even Her Tempestuous Majesty wouldn't say no to a bit of a well-earned rest.

Secondly, the whole conveyancing process has revealed some control issues I've successfully kept hidden up to press. I do not do well when things which have a huge impact on me are completely outside of my influence.

What has become apparent is that we don't have the best legal representation in the world. I won't bore you all with the details but plenty of things have been less than confidence inspiring. It also transpires that no amount of coercing makes said legal representation better. We haven't hit threats of impending doom yet, but I'm not convinced even that would raise so much as an eyebrow.

That this situation is unpleasant and stressful is one of the only things Petunia and I are wholly united on. It's also firmly in the category of unavoidable - it will be finished when it is finished and not one moment sooner.

To give the short version, I've been in virtually a permanent flare up for the last month to six weeks. I've just about managed a routine of very early bed times which keeps me functioning enough to go to work, but little else.

Outside of general day to day, a recent wedding was from an illness perspective completely disastrous, but more positively I managed a small corset-laced excursion to an Edguy gig with friends. Tired or not, fun is a must for keeping the spirits up when larger matters are out of your hands. For me there is little in the world a good power metal gig cannot temporarily improve.

(Proof that both corset and outing happened, because at this rate I may dismiss this whole period as a bad dream...)

I've been off my food frequently, bursting into tears with little provocation and my sensory overload symptoms have been virtually unceasing. Every little innocuous noise at home has been almost panic-inducing and it feels like surviving mere existence is exhausting. I am so excited about moving to a tiny country village and wholly ready to embrace the comparative quiet.

The upshot of this is that the outcome will be so worth it. We're buying our first home together, a quirky little house in a beautiful village in the West Yorkshire countryside, and having been checking out the area I can only opine that Yorkshire isn't called God's own county for nothing.

What do you mean I'm biased because I'm from here?

Some things are inescapable, and it's all about how you meet the challenge they present. When nothing will make the stimulus change, it's best to be as positive and health-conscious as possible until it passes.

So, I'm resting a lot and trying to steal small pockets of time for myself with a book as often as possible. Much and more Tolkien has been devoured.

One of those things is gaming nostalgia a la the Forgotten Realms. Most recently it's been Icewind Dale 2, sequel to my favourite piece of nostalgia gaming on this good Prime Material Plane.

One thing though, IWD2?

"Rest until fully healed", you say?

Chance would be a fine thing. The first order of business for our gorgeous Upside Down house may be to make a solid attempt at such a thing.


What life events have inevitably affected your health? How did you cope with them?

Hefting my adventuring gear and wishing you all many spoons xxx

King of Fools

We are never gonna be like you,
We don't follow - King of fools,
You are the blind who lead the blind.
You are the King of Fools.

Edguy - King of Fools

Diet and exercise – the two things most likely to irritate me as suggestions for how to make Petunia behave. Simple, obvious and perpetually ineffective.

The problem for me is two-fold. The assumption that everything that is wrong with a person’s health can be fixed with a mixture of the two is both tiresome and in some ways quite rude – there’s an unspoken assumption there that the person is too stupid to have thought of those things themselves and therefore is wholly responsible for their own problems. That also bolsters uninformed opinions regarding patients “attention seeking” and that they just refuse to attempt to get better and are in fact happy being ill.

Yes, we thoroughly enjoy it, and personally if Petunia were tangible I’d marry her, I love her that much.

(My lollygagging is becoming a real issue. Image from Tumblr, source unknown.)

(If I ever say that to you I suggest you duck, because eventually it’s likely that it’ll be swiftly followed up by something being thrown.)

So, I ask of all the pseudo-experts out there, what should I do when having a clean, healthy diet and doing regular exercise don’t work and in fact causes as many problems as they solve?

I eat pretty plainly in order to try and calm my insides down. Most of the time I aim for a good balance of protein and vegetables and a reduction in carbohydrates in a meal – I don’t cut out altogether, but I do cut down. I don’t drink because of the dual reasons of medication interaction and the fact the Interstitial Cystitis side of Petunia’s personality would no doubt explode if I did. I drink plenty of water (too much at times) and I don’t drink caffeine during the day. I don’t snack much except for fruit and mostly keep sweet things for weekends only. In essence I am pretty damn well behaved on the diet front.

I also exercise as much as I’m able. Due to my recent dip that hasn’t been as much as I’d like but it is slowly coming back and I hope to over time work up to the point where I’m working out three or four times a week again. This doesn’t include general walking about such as walking to work. I’ve just purchased a couple of Jillian Michaels’ more cardio-driven exercise DVDs to give myself a bit of a change and I’m hoping in a few months I’ll be back to being able to take this amount of exercise regularly once more. This will obviously be made easier as we move into Spring and things start to warm up too.

The second problem however is that this has become habit forming. There’s nothing wrong with that in itself, except that I’m a little concerned just how much worse I feel when I need to have an evening off. I’ve spoken about giving myself the evening off as a gift so I don’t feel like I’m just being lazy, and this is mostly effective. However it doesn’t change the fact that I physically feel sluggish and lethargic whenever I’m too tired or sore to exercise, and I don’t have an unrealistic idea that one day I will banish this problem. I have Fibromyalgia – I’m never going to be able to keep the routine all the time.

I wrote a post some time back about what I considered to be the negative and dangerous aspects of the “fitspo” fad – a wealth of articles, memes, diet and exercise plans constantly telling you that if you aren’t following exactly, you’re weak, lazy, fat and an altogether useless sack of flesh.

The thing is just avoiding fitspo related websites doesn’t keep you away from this sort of attitude. It's more than a little disturbing how quickly I’ve started to feel lousy in myself when I can’t complete my exercises as planned.

(Whilst I realise it's not all bad, I am predominantly very anti-fitspo, because as illustrated it can be sodding dangerous. Image from pinterest.com)

There is something very insidious about being at the top of a slippery slope where your self-worth becomes completely tied into your diet and how much exercise you do. Constantly being told it is the way forward (even when you know it isn’t) will wear anyone down eventually, and it’s surprisingly easy to start to question yourself when faced with a relentless onslaught of pseudo-expertise.

Sometimes, it does just feel like far too much effort to keep explaining yourself and once you reach that point you start to wonder if it’s too much effort to explain because you are in fact incorrect. The pseudo-experts start to sound like they possibly make sense.

The slippery slope I just mentioned, do you know what is possibly waiting at the bottom of there? At the point when the apparent army of inherently arrogant “experts” and their unasked for opinions have won their battle with their victim's self worth?

A variety of different mental illnesses, self esteem problems and anxieties which tear people's lives apart.

I repeat myself a lot on this blog in terms of the topic of "think before you speak", but it really can be of vital importance. If even one person takes that thought away from this blog, then I'll feel like I've achieved something. A few would be lovely, and lots would be phenomenal. In a generation of trolling and keyboard warriors where people seem to feel that their opinion is the only important and worthy part of any discusion, it's a lesson that only becomes more necessary. The art of civilised discussion has seemingly long since disappeared into myth for most.

There are very few scenarios where you "have" to say something, so when you've ruled out necessity consider this:

Just because you can say it doesn't mean you should.

Wishing you all many spoons xxx

"I'm not like you and I don't wanna be...."

I’ve been meaning to write a post about the exercise I do to help with my Fibromyalgia for quite some time, but I’m going to hijack it as something most irksome links in with it and frankly I’m in the mood for a rant. I’ll post the intended subject another time.

I’ll let you in on a little secret: I absolutely can’t abide this current fad of “fitspo” or “fitspiration”. It couldn’t crawl under a stone and die quickly enough for me.

Now that might seem like a bit of a juxtaposition coming from someone who exercises regularly for the benefit of her overall health, but I shall explain. Firstly, I do appreciate that there is a certain brand of fitspo imaging which can be positive, and as I’ve said before if it isn’t broken then there’s no need to fix it and different things work for different people.

However, my distaste is reserved for the vast majority of the material which isn’t beneficial and can in fact be downright frightening. You’ve probably seen some of this even if you don’t recognise the term – a photo of a professional fitness model or athlete, cleverly lit if not airbrushed out of all reality and covered over by an “inspirational” quote.

My problem with the vast majority of this rubbish is that if it isn’t telling you that you’re not good enough or making you feel guilty for not spending every minute of every day exercising to the limit or carefully measuring out your super clean meal plan, it’s giving misinformed and sometimes dangerously bad advice.

I’m going to paraphrase this example as there are a few different versions “Crawling/sobbing/vomiting is acceptable, quitting is unacceptable.” If you’re actually exercising to the point that any of those rather unhappy things occur, then you’re pushing your body beyond its limits and you’re also massively increasing the risk of an injury.

(A version of the above. Oh, with added blood. Even better *sigh*)

Your body has those limits for a reason, it would be wise to listen to it and not risk further problems just because you’re being sold the idea that you’re somehow weak or not putting the requisite effort and dedication in unless you reduce yourself to a nervous wreck each and every time you work out. It might be disguised under a veneer of “inspiration”, but it’s actually both demeaning and insidious in its preying on insecurity over body image with those ever so unrealistic photos as a backdrop.

What fitspo is is yet another layer of imperfection placed on top of all the other things we’re told we should feel insecure about. Go out and buy our expensive workout gear, because you’re not good enough. Go and get an expensive gym membership, because you should feel guilty if you don’t.

It’s size zero with a protein shake and a sports bra, and it will end the same miserable way with plenty of people who are crippled by their insecurities and poor body image because they don’t look like the people in the photos.

This sort of thing can be even more toxic when you suffer from a chronic condition which prevents freedom of exercise. You’re already “just lazy” if you can’t exercise after all, so how are you supposed to compete against all this mass market insecurity peddling?

The answer is you don’t and you ignore it.

I think the question at the heart of this to ask yourself is why indeed you want to exercise and are doing so?

For me, I was always active and discovered Pilates about six months before beginning to have problems. It was something I could do cheaply via DVD in my own home and when I developed Fibromyalgia it remained a form of low impact exercise which I could tailor to suit. It’s very good for flexibility and stretching, which is key for me and my tendency towards appalling stiffness. I enjoy it and if I’m careful it can take the edge off some of the pain associated with Fibromyalgia.

My point is that you do it for you. Whatever form the exercise takes and however little you are able to do, make it a choice you make for your own enjoyment and well being. If you “clean up” or change your diet, do it for the same reasons.

The peddling of one body type and one diet as correct for all is distinctly unhelpful as well as being plain nonsense – body type is in some part down to genetics regardless of how much work you put in, and a lot of conditions prevent the consumption of certain food and drinks and so mess up that perfect diet you’re being sold. What if you can’t eat enough of the nutrients you need because of your illness and are limited to the formulated drink products doctors prescribe?

Different forms of exercise also have different impacts and affect people differently, but it’s yet another thing that gets watered down into this idea of one correct and “best” form that everyone should participate in. One fitspo image I came across was someone posting the picture below over and over again to promote the fact she’d taken up weightlifting:

(I realise in some contexts this is a lighthearted joke, but not in the context of oneup-manship. Image from crossfitriverside.com)

Charming. What if zumba is the only thing that helps your particular condition, or it constitutes one of the only forms of exercise you can manage? What if you can’t actually exercise at all? Does that make you any less worthy a human being than someone who spends hours of each day in a gym?

Can people not see what utter madness this is?

We come back to the same point – one size NEVER fits all, and particularly not bridging the gap between healthy and ill with the myriad of difficulties illness can present. We’re also into the territory of my favourite comparison game – if you’re insulting one body type, one exercise form or one diet in comparison to a different one to make it appealing, then you’re helping absolutely nobody and you’re contributing to the underlying problem.

I personally think you should do whatever you need to do to “feel” healthy. That will probably be a little different for everyone, and in the case of chronic illnesses the difference will probably be quite substantial. There’s no right answer or magic formula, it’s something that’s as individual as you are and comes down to what makes you feel good and what constitutes you feeling at your best.

The thing to strive for in my view is to be in a place where you feel happy and as healthy as possible, and you are doing whatever you can manage for enjoyment and to promote good well being overall. Weightlifting every day? Brilliant! Doing ten minutes of gentle therapy once a week? Wonderful! If getting out of bed at all was your biggest achievement? Great!

Sitting with your feet up and eating cake because that’s all you feel like doing today? Even better*!

If it involves accepting you look nothing like the unrealistic and airbrushed people in the “fitspiration” images and living your life your way and not the way they try to tell you to, then I say good for you.

(Fixes everything worth fixing. Image from bakecookeat.blogspot.com)

*My friend and I have a saying which we often repeat to one another when we’re fed up of what our bodies are doing to us – if it can’t be fixed by cake, it’s not worth fixing. Amen to that!

The highway's jammed with broken heroes....

Excuse me while I casually hum the rest of Born to Run before I think about completing this post.

If you hadn't figured out I'm a huge Springsteen fan yet, then you either haven't been reading enough of the blog (disgraceful) or haven't been paying attention (only marginally better).

I've been thinking about the practicalities of driving and the need for a car in terms of a post for The Retired Bridgeburner after discussing the topic last weekend. My original plan on moving to York was to let the car go - I thought I could get along well enough without it and it would be saving plenty of money on insurance, tax, petrol and unsightly repair bills. The lack of those unsightly repair costs alone would probably also have done wonders for my nerves.

Yup, KvltKa is nearing the end of her road life. Fairly obviously she's a Ford Ka, and she manages to be a particularly fine example of all the things wrong with the model. Being the bottom of the hierarchy the parts are comparatively cheap but don't last, and at ten years old she's very definitely succumbing to the model's infamous issues with rust. However, I grumble affectionately. I really do love that car.

(KvltKa: raised by wolves in deepest darkest Norway, master of all things ice and snow.)

Upon moving to York in the middle of what proved a long winter by British standards I soon found that the car was a necessary evil. Whilst I do relatively well throughout the months when it's warmer, the Fibromyalgia does not enjoy the cold. Even a fifteen minute walk to the shops for supplies was beyond me on far more days than I'd like to admit to. I forced myself outside as much as I could (stubborn Northerner that I am) but I was painfully aware that certain necessities would have been impossible had I not kept hold of KvltKa.

As I'm sure many readers will be aware, the act of driving itself can be fraught with issues. If I'm completely honest I have the potential to be a proper petrolhead - I love driving. That is, I love driving when I can drive properly. I crave nothing more in the world than a great big windy 60 road with nobody else on it. As many of us have complained and will do so again: other drivers tend to take the fun out of driving.

However, I'm now far more reluctant to drive alone than I ever was before. I've had a couple of very painful episodes whilst driving - mostly due to being stuck in traffic and unable to stretch already overworked muscles, but it makes me tend towards having a passenger where possible. I'll drive familiar routes alone - between here and both parents' houses, for example, because I have all the places I can pull over and stop if necessary memorised. The necessity of travelling on new routes tends to find me sitting around doing much Googling and much reading of the Ordnance Survey to try and alleviate the necessity for panicked searches for stopping points.

Sudden movements by other cars can set the edges of my sensory overload off - I err on the side of caution and I'd rather cover my back in case the idiot *is* going to pull out without looking than choose to not react and suffer the consequences. However, whereas this is all normally a part of hazard perception and nothing to get excited about, these things can now make me jump and I remain jumpy and on sensory-overloaded edge for the remainder of the trip. I've never been a perfectly even-tempered driver, but this sort of thing certainly tends to make me more irritable.

I have been known to utter a few of the sort of "GET OFF MY ROAD!" curses which would make Jeremy Clarkson proud.

I try to combat this by leaving sufficient "non-driving" days in between necessary longer trips. Generally the worst of the overload comes at the end of long journey when I'm starting to get fed up and a little tired. I know my own energy levels well enough to know the difference between this sort of tired and the tired which requires me to pull over, but the former does tend to be the forerunner of jumpiness and a feeling that the cars moving around me are coming too close too fast.

I'm learning to recognise this and  combat it slowly. I'm quite proud of my driving and it's something I like to feel I do well, so I treat this as a new obstacle to learn my way around effectively - it keeps me on an even keel with it rather than becoming upset at the problem.

(Current favourite driving music... and the windows mean that nobody knows how ineffective my singing along is.)

I try and remember to always have something to drink in the car (lesson learnt from my disastrous trip mentioned in Fate is Inexorable) and I'm fond of driving with music on. Whilst it doesn't distract me from driving (I rarely change CDs whilst driving, that's what passengers are for) it can distract the sensory build up a little bit. It's not for everyone, but I've found singing along to something (thank heaven nobody but me has to listen!) can not only interfere with the build up of overloaded senses, but can also prevent you from getting too worked up too.

However, following a particularly sluggish trip back down the A64 this morning due to traffic, the next dozy fool who doesn't pay attention to what's happening in front is in danger of receiving the sort of language my parents (and many friends) don't think me capable of.

There's also the fact that lots of driving leads to lots of arm and leg ache. It's a sad inevitability (and believe me, my car steers very lightly indeed) but it's very much the lesser of two evils on a day when walking would prove just as problematic if not more. In my own experience I've never had the episodes of disorientation while driving that I know others have experienced, but if they ever do start to happen then it's going to require a lot of thought as to where we go in the future on the subject. Long may the lack of such continue.

I might not be over fond of the need itself, and it causes problems of its own also, but I found personally that a car was an invaluable ally in my independence and being able to still do as much as possible. Even if it is old (er, "experienced"), was raised by wolves and doesn't understand clouds.

(Full marks if you clocked that reference! Image courtesy of hayabusa.org)

Has anybody else found themselves in a similar position? Do you have any issues with driving? Feel free to open up discussion!

Wishing you all many spoons

We don't play your Headless Game...

Today's post comes from a place of some irritation for me, and it has something of a duality of annoyance about it. Not only does it touch on my world view in terms of societal pressures on weight and health, but this morning it crossed over into the territory of chronic illness and so tripped the rant switch.

I signed myself up to Patient.co.uk some time ago so I could access some more of the resources. I've mentioned elsewhere that I think it's one of the better information hubs on the internet. One of the features is a "My Health" target feature. This was the reason for the email I received from them this morning - I hadn't completed said targets.

What annoyed me? Well, here's the quote:

"We've noticed that you're yet to set your health goals on MyHealth at Patient.co.uk. We'd recommend you set them as soon as you can.

By setting yourself some goals you have far more chance of actually achieving a significant improvement to your health, and you're also able to track where you are in your progress with our progress trackers and action plans."

Still wondering why this irritated? 

I do realise it's a generic email sent to everyone, but it did just make me think about the implications. I can see the use in setting goals during a chronic illness in one sense, but I can also see the potential for it to be damaging and even dangerous. It's very hard to set concrete goals with a condition which can change one day to the next with no seeming rhyme or reason. 

It would require a lot of will power to not end up berating yourself for each missed "target", be it a product of a flare or just a bad day in general. To give an example from my own experience, if I have a full blown IC flare up (thankfully rare) I can't stray very far at all from the bathroom. It would present some difficulties in terms of meeting goals. 

There's a very real danger of getting too caught up in what you feel you "have" to do. With a firm hand realistic small goals could be set and I think this would be most effective on a daily basis. That way it allows you to assess what kind of day your having and tailor any "goals" to suit. 

(That's my excuse and I'm sticking with it!
Courtesy of Awareness Support on Facebook)

I've realised I do this to some extent without thinking in the sense of general housework. I give myself one task a day (for a good day) that I need to do or do part of. It still winds me up somewhat when I can't manage it, even though I know it's beyond my control. I'm getting there slowly, but I still have to sit down and remind myself that it's not something which can be helped. Even knowing what's wrong and having a general feeling of what my body is doing, it's hard not to succumb to "I'm just being a bit lazy" some days and end up expecting too much of myself. That road generally leads to pushing it too far and several days of needing a lot of rest.

Hence my point on the dangers of getting too caught up in targets. 

I think the phrase which particularly bugged was the "actually achieving a significant improvement to your health" - I know it isn't aimed personally, but it's almost like saying you don't try and that you need a rigid set of goals to bind yourself with because without it you will automatically fail.

Taking this away from the specific chronic ill health arena and into a more general sphere, it touches on something I feel quite strongly about. 

Life is not an attainment quiz. It's not a flow chart where you move down a level once you complete a prescribed "goal". There is no way I can imagine it to be healthy to live your life according a prescribed set of expectations which you can tick off. Your path is your own - it shouldn't be compared to anybody else's.

You are not failing your own health if you don't set religious goals. It touches on the "no pain, no gain" mantra, as if health is just one more gym visit away. I must return at this point to the community over at Chronic Illness Cat for a rather dry observation:

( *facepalm* )

Let me try to make this abundantly clear. 

By being a sufferer of chronic ill health you are not "quitting", and you are not failing life's little flowchart. By choosing to conserve your energy where necessary and having the strength and courage to make sometimes difficult decisions based on your overall health needs, quitting is the very last thing you are doing. You're just walking a path which is different from that of a healthy person. Their goals and yours won't necessarily match up or cross over, and that's completely fine.

There is no acceptance and well being to be found in building a cage of expectation and locking yourself within. I personally think it is more likely to be damaging than achieve any good. So open the cage door and take a walk outside. Why not?

"It's a dangerous business Frodo, going our your door. You set off, and if you don't heed your feet, there's no telling where you might be swept off to."

- Bilbo Baggins, The Lord of the Rings by JRR Tolkien

As always, wishing you all many spoons for the week ahead. xx