A not so cunning plan

This wasn't a subject I ever expected to have to touch on. In fact the need for a post brought me back to the age old phrase “common sense”. Whoever first called it “common” probably needs to be sued for false advertising, because it doesn't seem to be that common at all.

The topic? Playing about with medication.

(Yes indeed. Image from keystone-wealth.com)

However frustrating a relationship you have with your doctor, they are there to help you. I can understand the frustration – I remain resolutely unimpressed with my GP surgery and their apparent allergy to reading notes but all I've needed for the last six months are repeat prescriptions so there’s been little room for them to mess up or indeed improve. However it doesn't matter what you think of them – they still know more about the cocktail of medication you might be taking than you do.

Dealing with combinations of medicines isn't as simple as sticking “don’t consume alcohol whilst taking this” or “this interferes with the contraceptive pill” labels on things (and even the latter isn't so simple, given thinking has changed in recent years with regard to most antibiotics, and not everybody you meet in the medical world has caught up yet!). There are many different factors to consider in what can be prescribed to a given patient.

The peculiar problem with chronic conditions is that a lot of patients end up on more than one form of medication, and some are taking so many tablets a day you’d expect they’d rattle if you picked them up and shook them (no, that’s not an invitation for anyone to pick me up and shake me. I may not rattle but I will punch you in the face.) What you then run into with multiple different drugs is the concept of interaction.

Put simply, some medications behave better when they are combined with other drugs than others do.

Hands up if you've ever heard of Serotonin Syndrome? No, neither had I until the topic of medications interacting came up on a page I frequent recently.

Serotonin Syndrome is a potentially life-threatening reaction to drugs which affect the body’s natural level of serotonin, such as some SSRI antidepressant drugs and some opioid painkillers such as tramadol (a usual suspect for severe cases). It occurs when drugs are incorrectly combined or can be the result of an overdose of a single drug. Symptoms range from headaches to total renal failure and include uncontrolled muscle twitching, nausea and diarrhoea, hypothermia and tachycardia.

Something else you should probably know about Serotonin Syndrome: severe cases can and do kill.

The phenomenon gained widespread attention with the death of a college student in the USA in 1984. Libby Zion died of undiagnosed Serotonin Syndrome caused by the combination of the opioid pethidine and phenelzine which is used in the treatment of major depressive disorders, mistakenly combined by a medical intern. Her case led to the implementation of laws on the hours interns are allowed to work and greater supervision by their seniors.

(Just one Google search comes up with this table - a lot of those drugs are common in the treatment of chronic illnesses. Just something to think about.

Image from uspharmacist.com)

Why this rather depressing interlude in the usual sunny climes of TRB? Well a message appeared on said page involving someone deciding they knew better than their doctor and ignoring the advice they had been given to not combine tramadol with their existing medication. The person then blamed their doctor for the plethora of symptoms which resulted from the toxic combination.

In short it could be deduced from the symptoms and medication involved that they’d given themselves an attack of Serotonin Syndrome. They wanted sympathy for this, but they most certainly did not get it.

One of the reasons I’m still only taking the one form of medication is that the reasonable options left either would interact with the amitriptyline (which has been so effective I don’t want to be taken off it) or are incredibly strong and not suitable for long term use. One of them in fact can only be used for about a year and then the withdrawal symptoms include seizures. Ouch.

Needless to say that while I can manage without such medication I will do so. I did take tramadol for a little while, and whilst I didn't suffer the drowsiness and confusion a lot of patients report as side effects it did upset my insides rather a lot and so was vetoed.  

The heart of the matter is that this is something that very much rests in the hands of medical practitioners – not patients. I definitely thinks it’s wise to smart up about what you’re taking so that you’re aware of what you can and can’t take with it (the label inside the packet should tell you a fair bit) but it’s idiotic to start taking your life into your own hands and combining, particularly when you have been told not to.

The same goes for taking yourself off medication without your doctor’s knowledge and therefore usually without the advised “weaning off” period. Going cold turkey from powerful medication is never going to be a pleasant experience, and it’s just not wise to do it of your own accord. 

I know it’s a phrase oft-repeated that chronic illness patients know more than the doctors who treat them, and that can lead to some complacency on the part of patients as to the role of or indeed need for their doctor, but in this instance it couldn't be further from the truth.

Nobody likes a smart arse. Particularly one they discover is not actually very smart at all.

Wishing you all many spoons xx

Love is for Suckers

(It’s a great song and I can’t take myself seriously writing something even slightly soppy unless I've taken the mickey just a bit.)

One of the things I read a lot about across the communities and pages I frequent is people who feel cut off from their partner by their illness, or who feel they’re not understood and supported for whatever reason. I’m drawn to genuinely offer support because reading such things makes me very sad indeed, because your partner is the one person you should be able to tackle a large hurdle like long term ill health with.

It also makes me powerfully aware of just how lucky I am.

Alex and I met in a field.

As much as I’m tempted to leave it there for entertainment value, I’ll clarify that this wasn’t just any old field and was in fact the Bloodstock Open Air festival which regular readers are probably a bit fed up of me mentioning by now. We’d talked a bit online before that having hit it off as friends over the festival’s forum, but that was the first time we met properly.

All he did was jump up and down like a child at Christmas and shout “Hannah, SAXON!” at me for about 30 seconds (Saxon had just finished playing; he’s not quite that much of a raving lunatic).

If anyone was looking for any tips on flirting, for whatever reason it would seem this approach works rather well!

We got together at the end of that year (2009) and started to live together in February this year. Somewhat surprising to him at least is the fact I haven’t murdered him yet (That’s a self-deprecating reference to some of his more annoying tendencies and not a hint that I’m a psychotic axe murderer, I promise.)

(An old one while I was still well. I'd say I was completely sober here, but it's a lie and you all know it.)

The biggest point I wanted to make here is that for well over eighteen months he had a perfectly healthy girlfriend.

I’m not for a moment suggesting that starting out with someone with long term health issues isn’t just as daunting, but I can’t imagine that suddenly being thrust into the new reality of me not being anywhere near as able was an easy thing to deal with, especially coming out of nowhere overnight the way it did. It can’t have been any easier to watch the situation deteriorate over the next twelve months either.

You really wouldn’t know though.

I’m not that easy to live with, particularly in the winter months when I’m at my worst. I’m awkward to plan around, can’t always pull my weight with jobs about the flat (and even when pulling my weight it’s still weighted somewhat against him) and particularly when pain levels are running high I’m cantankerous and extremely short of temper. If pain and allodynia or sensory overload combine then I’m impossible and should probably walk around with “Danger, do not engage” branded somewhere about my person.

I never feel like me apologising or any amount of understanding that things are difficult takes the sting out of me being a bit of a cow, but luckily for me Alex is very good about it all. It’s also a big lifter for me that even though he’s the first to admit he can’t really understand to a full extent what Petunia’s doing to me, he reads this blog and takes an interest even when I’m waffling on and musing aloud.

With the amount of musing aloud I do about anything and everything, you’ll just have to take my word for it that he has nigh-on the patience of a saint.

I’m a hugely sensitive soul, and the person I get most upset with most often it myself. I still get frustrated with things I can’t do, and particularly with the amount of times I get muddled up or forget things. As a highly intelligent person this gets to me more than anything else. Not only does he listen, but he tells me off when I need it too. So not only has he had my back in the couple of instances where someone else has had a go about my health, he even defends me against myself on occasion. That’s a skill.

The first thing he’ll do when he reads this of course is tell me I’m not that bad (I’ll come back and confirm, but I’d lay a substantial amount of money on that being the case).  

I often feel like the role of your significant other doesn’t get the attention it deserves in respect of chronic illness – they might not be suffering the plethora of symptoms, but in some ways they do suffer with you and it’s hardly an ideal situation for them either. Naturally all he wants to do if I’m upset and sore is give me a cuddle – if my allodynia is awake, he can’t so much as touch me let alone put arms round me. I also don’t like thinking what a psychologically horrible thing it is to have to help your girlfriend who was completely fine yesterday up off the floor where she’s gotten stuck today.

So, in summary Alex deserves a huge amount of credit, and we really have a lovely life in our little family (us and Madam Dovakhitty) despite everything.

If love is indeed for suckers, at least we’re suckers together.

(And now.)

Wishing you all many spoons xxx

Let's get down to business

Yes, “To defeat the Huns” did just run through my head. Mulan ruined that phrase for me. I also can’t pack anything substantial without “Hockety pockety wockety whack!” skipping through my head either (“Books are always first you know!”)

(Growing up is overrated anyway. Image source unknown)

Stop it with your raised eyebrows, I can see you.

As I promised – an exercise post!

In light of my previous post I feel I should set out why I engage in the amount of exercise I do, which is a fair bit. From childhood I’ve always been very active – we had a dog to walk every day, and also lived just over the border from the Peak District which as anyone who has been will know is a beautiful part of the world and also the biggest and best kind of adventure playground when you’re young. Like most active children I tried plenty and not everything stuck, but the two main loves were horse riding and skiing, both of which I’d pretty much given up by the time I started looking into Pilates.

I wanted something I could do inexpensively in my own home – I had been swimming regularly but found there were too many opportunities to get cold in the process and that I was pretty reluctant to venture out in the middle of winter to get wet – there’s something about it being dark upon leaving work that makes me incredibly disinclined to go back outside.

About six months before starting to have symptoms I decided to try my hand at Pilates. I had a nasty fall from a horse at 13 which left me with a back injury nobody spotted until at 17 I had to start extensive physiotherapy to rebuild the interconnecting muscles in the lumbar region which, after years of being tensed around this hidden injury, had pretty much given up working. Pilates was sold to me on its central core strength elements and its low impact nature, making it a safe option for me as far as my back was concerned - although pretty much recovered I’m still very cautious.

I don’t exercise with a specific body shape in mind and I don’t have excess weight to shift (I don’t want to sound like I’m showing off but I may as well be completely honest) so in the first instance it was mostly purely for enjoyment.

Looking around on the internet I found many recommendations for the 10 Minute Solution series. I bought their “Pilates for Beginners” DVD and spent a few weeks doing the full fifty minute workout once a week (the workout comprises of five ten minute sections) and soon found it wasn’t particularly challenging. I progressed to the “Pilates Perfect Body” DVD and have stuck with this one since. The DVD’s five sections are:

• Arms
• Bum and Thighs
• Stomach/Abs
• Silhouette
• Stretch (I use this as a cool down personally)

(My DVD, available on Amazon for very few pounds. Image from fitsugar.com)

I’ll be honest that in the strictest sense it’s in no way pure Pilates. There’s a core element to every exercise, but the full programme comprises some moves derived from Hathi yoga and even classical dance training. There’s also more resistance work using your own body weight than you might imagine upon hearing the word Pilates. Most exercises have some modifications to make it easier if you need to – the leg section in particular makes plenty of allowances for knee and hamstring difficulties (my hamstrings are terrible).

I continued with the workout as much as I could through the pain and found it actually did work as a pain relief to a certain extent. What I failed to notice until the following winter (this one just past) was just how much stiffness I had now become prone to. I gritted my teeth and upped the number of times a week I completed the workout and slowly noticed improvements in flexibility.

This is in no way a miracle cure, I’m still in pain on a daily basis and I still have a lot of stiffness to combat, but every little helps and this is something which has worked to an extent for me.

At the moment I aim to do the full workout three times a week whenever possible, and have a tendency to do sections only on other days if I spot a particular problem. What I had to learn (and fast) was the difference between pain which could be alleviated a little by exercise, and pain that exercise would exacerbate tenfold.

I’m not sure if this is in any way typical of Fibromyalgia, but I’ll get it down and feel free to open discussion with comments below as I’d be interested to see comparisons. The pain associated with stiffness tends to be a dull ache that’s always there with occasional stabs of sharper pain upon movement. The other kind I think is to do with the weather as it seems to rear it’s head whenever it’s damp or cold, or due to be. It’s a much more deep-seated ache and throbbing and the only way I can describe it is “nauseating”. It completely invades my concentration and is pretty much a guarantee of a bad day or an oncoming flare.

It’s also why I hate the winter, as I spend most of winter riddled with the latter and with episodes of the former.

(If wishes were horses.... Image from uproxx.com)

What I’ve found is the latter just can’t be relieved and I have to sit it out, but the stiff and sharp pain tends to be lessened to a degree by doing the exercise. It’s not a perfect solution and I still muck up my judgement badly sometimes, but better to have relief some of the time than not at all.

I also used to pole dance, and I’d ask you to put aside whatever preconceptions you may have involving scantily clad ladies in nightclubs for the purposes of this post. It’s a fabulous strength exercise and I found it to be a surprising amount of fun. I had two friends who taught me on their pole at home in Sheffield, and I intend to pick it back up in York when I have the opportunity. Surprisingly, if done properly it doesn’t aggravate my joints, but mistakes are painful so it’s a great incentive to learn fast and strive for excellence.

I wanted to return to it this year but the day of the classes changed to later in the week, and as by about midway through Wednesday I’m usually dead on my feet it was a bit too much. It is something I’m keen to go back to though. There’s also a jive class my other half used to go to which we are going to try. I’ll know very quickly if I’m exceeding my limits and will be sensible if that’s the case, but it’s worth a try.

So, what’s changed? The improved flexibility has certainly taken the edge off some of the stiffness, even now the weather is turning damp and cold I’m not as stiff as I was last year at around this time. The downside is I’m far more muscular and what little fat I carried has slewed away, which does have the negative impact of heightening the allodynia when it’s bad as there’s little between the skin and the burning, aching muscle underneath. The somewhat intoxicating rush of endorphins released after exercise is also quite helpful in terms of pain relief.

I always follow up exercise with a bath as hot as I can stand it to soak in and then make sure to keep all the worked muscles warm for the rest of the day/night, and as long as I stick to this routine I find it relatively non-disturbing and I don’t have too many episodes where I regret it the day afterwards.

   

What also happened as a result of the jump from once a week to three times at least is my entire body shape changed. It took me a while to come to terms with this (nobody likes having to replace half their wardrobe all of a sudden) but I’m coming to like it now. I’m the slimmest and yet heaviest I’ve ever been because I’m becoming far more muscular, which wasn’t something I aimed for but it’s not a bad thing to gain some definition and shape.

Or to put it in the rather deprecating vernacular I usually use:

 “Great Scott, where did that arse come from?”

"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!

I Choose... The Retired Bridgeburner

Invisible illness isn’t a choice, but I choose… to share my experiences through The Retired Bridgeburner.

(The origin of the name of this blog, and a series for which I will know passion unending for the rest of my days as my touchstone. Image form ebookee.com)

I had to wrestle with myself for a fair while before committing to creating The Retired Bridgeburner back in February of this year, and I don’t think I’ve ever spoken very clearly on the blog about why I chose to do so. Given it’s in-keeping with the theme of this year’s Invisible Illness Awareness Week it would seem fitting to do so now.

Firstly, I’m going to try and explain why invisible chronic illness is an inherently lonely state of being, something it’s worth understanding in the context of the origins of my writing. As a patient suddenly struck down with these monstrosities you find yourself surrounded by people who for good or ill cannot really understand what’s happening to you. It’s not their fault for the most part; for the first year or so I didn’t understand, so how anybody else could do is beyond me. For a while I wondered if it was a quirk of my personality combining with the situation to create this loneliness, but on venturing into the chronic illness tags on Tumblr, finding forums and Facebook groups I soon realised this was a problem almost universally felt across the self-named “spoony” community.

Another thing I soon discovered is that outside of these small boltholes and safe havens most patients were quite reluctant and even scared to talk about their experiences – having at some point been on the end of comments along the lines of “You’re just attention seeking”, “You’re just lazy”, “If you’d just exercise and lose weight”, “You’re faking it/lying/your condition doesn’t exist” etc. and naturally had ceased to talk about it. Rather than put up with unhelpful or abusive reactions from others they suffered in silence.

What I soon realised was that suffering in silence was not acceptable. I understood why patients did, but at the same time I became increasingly angry at the general ignorance which drove them to do so. I began searching around for people who broke this mould and wrote open blogs – my search didn’t come up with nothing, but certainly with understandably slim pickings.

One such blog belongs to my friend Jenny, a sufferer of severe chronic eczema currently going through Topical Steroid Withdrawal in a desperate attempt to aid recovery. You can find out more information about her experiences and about “Red Skin Syndrome” on her most excellent page here.

A little reluctantly at first I came to the inevitable conclusion that if you want to make a change for the better, you have to be prepared to do it yourself.

The name walked into my head pretty much without thought. A play on firstly being ill, but most importantly a reference to the authority resenting, hard-as-nails band of soldiers who represent one of the last vestiges of the “old days” in Steven Erikson’s Malazan Book of the Fallen series. Why? Partially because they’re some of my favourite characters* but mostly because the series became a touchstone for me in the dark days of numerous hospital visits and seemingly innumerable dead ends.   

Armed with a name I started to think about what I wanted to do. It wasn’t enough (for me at least) to write long posts declaiming all the reasons Fibromyalgia and Interstitial Cystitis are not the most friendly of beings. That wouldn’t give patients anything they didn’t already know and would be likely to kill off any interest from healthy people who wanted to find out more. If I was going to commit to this and put the most vulnerable part of me out there on show, I wanted more than anything to be of some help.

Thus the most simple of ideas – to aim for positivity.

I had to tread a fine line with this – going for 100% positive all the time and refusing to acknowledge the rather long list of negatives would be firstly unrealistic and unhelpful and secondly likely to make me throw up. I’m a cheerful soul but I don’t do saccharine and sugar-coated. I wasn’t aiming to be fluffy, whiter than white and universally liked after all; I was setting out try to do something useful.  

(Dovakhitty - my only allowance for "fluffy")

One of the things which becomes apparent in the chronic illness experience is that you never stop learning, and so I decided I’d share the things I learned and any helpful practical tips these led to. I soon found I couldn’t do so impersonally, and regular readers will know the blog is littered with unashamed geeky references, whimsy and my dry and sarcastic sense of humour. I’ve never been a believer in the concept of presenting an “internet persona” which differs from your true person, it’s dishonest and I neither like it nor have the patience to entertain it. I couldn’t be honest about my experiences unless I went about it being nothing less than myself, warts and all.

Now here we are today. The blog has certainly attracted its fair share of nay-sayers which was always to be expected, but from the intended audience I couldn’t have asked for a warmer or more appreciative welcome. She’s just broken 12000 views and to my delight some of the most popular posts are those in which I’ve mentally said “sod it” and waved my “geek girl” and heavy metal fan flags respectively.

So, why do I choose to be open about my most vulnerable side and write The Retired Bridgeburner?

Because it’s important, and every voice attempting to raise awareness and speak against ignorance is another step on the road to wider acceptance that invisible illnesses are real and just as deserving of respect, understanding and compassion as their more visible counterparts.

"Even the smallest person can change the course of the future."

The Lord of the Rings, JRR Tolkien

*If you’ve read the whole series and Fiddler in particular didn’t rend you into tiny little pieces at the end of The Crippled God, I’m sorry to inform you that you probably don’t have a soul.

Invisible Illness Isn’t a Choice, But I Choose To…. Invisible Illness Awareness Week 2013.

I choose to... continue with my creative hobby despite the difficulties and pain it presents in the face of my chronic ill health.

I accepted a long time ago that I’m a creative soul, and what I mean by that is that if I don’t have an outlet for creativity then my general well being suffers noticeably. I don’t quite feel like myself unless I can occasionally sit down and exercise ideas.

My particular strength lies in sketching, and in replicating what I see. I’d love to be able to create from my own head, but that doesn’t seem to be something I’m destined to do and I feel a mixture of awe and envy for those can. However, I’m happy enough with my ability to put down on paper with a pencil whatever is in front of me. In recent years I’ve turned my hand to replicating album covers, mostly heavy metal albums and particularly those with a dash of the fantastical about them.

Thus far I’ve taken on Trans-Siberian Orchestra’s Lost Christmas Eve, Edguy’s Hellfire Club, Sonata Arctica’s Reckoning Night and most recently King Diamond’s Abigail – a departure in style from my norm and something I enjoyed all the more for the novelty.

I’m one of those people who get a real buzz from buying art supplies – even if it’s just a new sketchbook to replace its full predecessor. I also own a beautiful set of Derwent Coloursoft pencils, a Christmas gift I still get somewhat giddy over using – I’ve been known to get them out just to look at them on occasion. If anyone is looking for a high quality set of pencils without paying a portion of your immortal soul to Faber Castell, I really recommend them.  

(MINE! Image from artifolk.com)

Why is this a choice? Sadly, my hands aren’t what they were, I have noticeably less dexterity and they protest painfully when put to work with a pencil. The first time I sat down to sketch and found this was the case was probably one of the lowest points in my journey with chronic illness. The one talent in which I wasn’t merely mediocre it seemed would be taken away from me. Though no small part of creative skill lies in the mind, I’ve always envisioned for myself that my talent sits in my hands, and it felt like my own skilled hands and been replaced with an ungainly, awkward collection of fingers which didn’t quite work. At the time I couldn’t see a way round it and so despaired for a while.

Since then I have found that with the help of neoprene heat therapy gloves (I had to try out a couple, and eventually settled on a thinner more flexible pair) and teeth-gritting determination I can still create. Some months ago I completed a composition around The Last Unicorn film for a friend, and in finishing it I took a huge step in my own recovery. It was difficult, and painful to the point of tears sometimes, but whatever the cost to find that I could still do what I loved was a relief I cannot describe.

(My attempt at King Diamond's Abigail)

It takes longer and it is inevitably painful – this most recent attempt saw my knuckles swell for the first time and I’m left with the residual stiffness and pain as I write now, but for the sake of my own sanity it does me the world of good to occasionally fight through the discomfort and indulge in my beloved creative hobby.

And believe me, nobody wants to see my take on “artistic temperament” when such an outlet is denied!

This has been my blog for Invisible Illness Awareness Week 2013, a contribution along with my guest blog last week. I hope you like it and hope to encourage other bloggers to join in throughout the rest of the week!

Wishing you all many spoons xxx