Thursday, 24 April 2014

Why Petunia is not allowed an opinion.

This could be my record attempt for my shortest ever post, because in summary I could just say “Because she’s a moron”.

One of the things I’ve noticed over time is a seemingly insidious sense from her that she can adapt – clearly in a previous life she was a Galapagos finch. Whatever I try seems to work for a while, and sometimes quite a long while, but it’s as if one day she wakes up having figured out a way to defeat my new strategy and things on the health front will return to the erratic nonsense that is their norm.

There is only so much anyone can take of this before they start to get pretty fed up. She can’t be reasoned with and she can’t be talked round, and each thing I try she manages to work out how to beat it or simply ignore it. Maybe I just haven’t found the right strategy to attempt yet, but I’m running out of feasible options rather quickly.

The real reason for the bad taste left in my mouth about it all is this though; science and current medical thinking would dictate that these things should be working. There doesn’t seem to be a logical explanation for why they aren’t doing so, or at least not on a long term basis. It’s as if she just ups and decides that she doesn’t have to pay attention.

(Except she's not listening. Image from

My latest attempts were going gluten free and adopting a new exercise regime. The switching to a gluten free diet has not been anywhere near as difficult as I was at first expecting. Yet again I have reason to be thankful that my parents (and therefore me when I was growing up) were typically British in their eating habits. Not many things in sauces and a lot of plain but good food. Italian was about as far as we stretched to foreign cuisine when eating out.

Once I’d gotten my head around the mind-boggling array of unexpected items which contain gluten (yoghurts – really?) I actually found the transition to be relatively painless. I’m off bread completely and so not attempting the gluten free alternatives, and only occasionally having pasta for which I don’t mind the alternative at all. I’ve also discovered some lovely supermarket brand gluten free ginger cake slices – unlike most gluten free sweets and cakes they’re not terrifyingly bad for you and they’re just the right size that one is enough to give me a little bit of a treat rush without impacting my otherwise healthy diet very much at all.

Did I mention they’re beyond delicious? I should have, because they are.

Of course the main question at this point is whether this is working. At the moment, after three weeks I can tentatively say yes. There are some definite improvements with bowel symptoms and thereby as a result I have experienced comparatively little bloating and discomfort since making the change. I was expecting it to take much longer for any change to have impact and so for the first week or so of improvement I was understandably suspicious and waiting for the pendulum to swing back.

Thus far, touch wood, it has yet to do so. I still get a certain amount of pain from the same areas as before (upper and lower left quadrants) but the difference is wonderful. By proxy, my diet is probably also cleaner than it has ever been and I’m certainly feeling like I have a bit more energy than I have had in a long time. I no longer have the “food nap” sensation after meals. I still have days where I feel like I’ve woken up with the spoon count already in the negative – negative spoons are a thing, I’ve discovered – but my “normal” level of energy is still noticeably improved.

What about that exercise regime though?

This is the story of when Petunia met Jillian Michaels. They did not part as friends

To begin with, I will just say that I’m not going to go into this write up recommending Jillian Michaels’ workouts to anyone. They’re hard work and very taxing on the body – and I would suggest that would be true for the 100% well let alone those with chronic ill health, so please don’t take my successes with the workout as an automatic green light for you. Most of her workouts are available to watch on Youtube – I really can’t stress enough the need to watch them through before you think about putting them into practice, and if you’re still not sure then you need to speak to your doctor.

There are also parts of the workouts I modify and switch out, purely because (sorry Jillian) she’s absolute murder on the knees in particular. Some of the exercises I watched and knew better than to attempt from the off – another reason I say you must watch them through before you try them. This also helps to ensure you’re picking up correct form, too.  

I would also say that I don’t consider Jillian to be a human being so much as I do a walking and talking embodiment of the “no nonsense” approach. She takes no prisoners at all, and whilst I love the effect the workouts are having on my let-go-a-little-through-winter body, I still expect her to remain a permanent fixture on my hit list.

(This is turning into something of a complex love-hate relationship. Image from

Most of what I’m doing is the 30 Day Shred DVD. It’s hard. However, it does deliver the results promised. I’m about half way through and I can see visible difference and clothes fit better already, so I look forward to the results at the end of the month. It’s also getting me into the frame of mind of exercising most days which I’d like to try and keep up because it does do good things for my energy levels overall. I’m having at least one day’s swimming a week instead of the DVD and at least one day’s rest – ideally you should have only one but there’s no sense in working beyond my capabilities. My body won’t do six days straight no matter what incentive you give it.

At the moment then, I’ve conquered the wild beast and she lies asleep and tame once more. I don’t know how long this will continue for but I’m determined to keep up the mostly gluten free diet (the odd treat to accommodate eating out with friends and what have you) as even if it doesn’t solve the specific symptoms I was aiming for long term, the renewed energy and general feeling of “better” isn’t something to be sneezed at.

Long may it continue.

Definitely not sneaking off with another ginger cake slice, and wishing you all many spoons xxx

Thursday, 17 April 2014

“…To be good great and joyous, beautiful and free.”

Regular readers will know from previous posts like New Horizons, Rainmaker and "All you have to decide..." that I have some very strong feelings on the topic of self confidence whether related to chronic illness or not. It’s a delicate and sometimes elusive sense of self that I believe everyone has the right to be able to find. Poor or shaky self confidence can have a negative impact on so many aspects of a person’s life, and I really think it’s something that should be treated with more importance and compassion than it generally is.

In approaching the question of whether suffering with a chronic health condition affects self confidence, I think it would be incredibly foolish to suggest otherwise. No matter what it does to you physically or mentally, it’s not likely to go away or if it does it won’t do so for a long time. Some people’s conditions can be managed well; others can barely be contained at all. Often the health professionals we go to for advice cannot help and long ago ran out of options for suggestion.

I think one of the particular ways this can manifest is when you have a partner, and even more so a healthy one. It’s surprisingly easy to fall into the trap of comparing everything they do to what little you might be able to manage and wondering at the fact you come up so short. It’s entirely human for both them and you to feel some frustration with this – but should any inkling of that surface then those feelings of anxiety and insecurity are only amplified.

One of the key things I think is incredibly important for this (and in a wider sense also) is to not put your self esteem into the hands of another person, whoever they are. In the same way you shouldn’t let the opinion of strangers have power over your confidence, although it’s harder it is the same logic to be applied to a partner or a close friend ill or otherwise.

More notably in the case of mental illnesses like depression and anxiety, it is important to remember the difference between the illness talking and the person behind it. There have to be boundaries in terms of unacceptable behaviour, but there should also be carefully guarded walls around yourself and your own confidence.

(Now this my friends is a wall.... The Wall From the South, Game of Thrones Wiki.)

I wouldn’t insult anyone by suggesting this is an easy lesson to learn. It isn’t, and I’m still in the process of learning it myself from both sides of the situation.

Furthering that note, for the ill person it’s equally as important to only be living within your own expectations and not those imposed or implied by others. Nobody knows your own body, your own condition and its entirely individual limitations the way you do – you live in and with it. Therefore you are the only person who should be setting expectations, and your thoughts on the matter are the only ones you should be paying attention to. When the expectations of others are unrealistic, you are not bound beyond all reason to attempt to achieve or exceed them. As important as it is to push and to try when dealing with long term ill health, it’s equally important to know when to say “no” to something and have the confidence to refute it and walk away before you risk yourself and your health.

When I say other expectations, mostly what I mean is the condescending kind lacking in any compassion. If you’ll excuse the vulgarity for a moment, it’s what I like to call “fix it bullshit”.

You’re too ill to hold down a job out of the house – make a job for yourself! You’re unemployed? Move to where there are jobs! You’re ill? Think yourself better! You’re unhappy with your life? Change it! I did X Y and Z which means everyone else regardless of circumstances can do the same!

I think that’s enough illustration of the attitude I’m talking about – which in other words means I’m going to stop typing it before I become too enraged with the stupidity of it all. In other words, it’s a complete refusal to live in the real world and understand that said world will not always dance to their tune no matter how self important they are.

That kind of attitude and expectation is potentially damaging to give heed to. We are all different and all faced with different challenges and situations in our lives. Not all of them are of our doing, and not all of them are within our immediate power to alter. Some things just have to be borne and cannot be fixed by just willing it to be so. There’s nothing wrong with tenacity and the will and drive to change your situation for the better, but it cannot be applied across the board to every circumstance. One size never fits all.

In the case of the chronically ill, our bodies and immune systems don’t want to stay in rhythm with the tune that we would prefer, and so we have to learn a new dance. That is a very different discipline altogether to the “fix it” approach – tapping your heels together three times and being whisked off to the Emerald City to ask the Wizard to fix it would be about as effective as “think yourself better”.

(I am unashamed to say that at six months away from a quarter of a century old, I still want a horse of a different colour.
Image from

There comes a point when you need to be able to recognise that working within your own limits and occasionally stretching them is still something to be incredibly proud of. The fact you can’t necessarily achieve what a healthy person could in your shoes should in no way be a cause to lessen that pride in yourself. You alone know your spoon count for the day, so you alone know what you can potentially achieve. You alone know when it’s time for a well-deserved day off also. You’re allowed those. Who is to tell you otherwise?

Your self esteem is yours and yours alone, and it is within your power to be kinder to yourself and to not entrust that esteem to the hands of others, no matter how close they are to you. You can reject what the wrong people tell you, and you can reject words said in anger and pain if you wish to. You do not have to listen.

In all the world there is only one you, and there will never be another. Each of us has a unique viewpoint and voice, and perhaps something only we can do. Each person has their own kind of magic. Each of us has it within ourselves to be as the title of this post – good, great and joyous, beautiful and free.

If your path to that doesn’t suit the expectation of those around you, maybe that isn’t worth worrying about after all.

Wishing you all many spoons, and just a little magic xxx

*The title for those who are wondering is an excerpt from the end of Shelley’s Prometheus Unbound. “This, like thy glory Titan, is to be good great and joyous, beautiful and free. This is alone Life, Joy, Empire and Victory”.

It’s a quote I’ve been quite fond of for some time, and for extra trivia it’s also a part of symphonic metal band Nightwish’s pre-stage ritual.

Don’t say I never tell you anything completely useless.

Thursday, 10 April 2014

You have chosen... wisely

(I still love this film. No shame.)

When you’re working on a permanently limited spoon count, making choices in terms of how best to use them becomes a daily task. I work full time and I take my exercise regime pretty seriously so come the end of the week I’m very much on energy rationing and that selection process becomes even more important.

What I’ve realised over time is that I’m very poor at spending said rationing on me. “Me” time or doing something purely for me is generally the last thing I think of to do, and in the long run this probably isn’t a good thing. Eventually I’m going to have to get better at it.

Take for example my creative hobby – I can’t remember the last time I sat down to sketch purely for my own enjoyment or to make something for me. I’ve been saying since I moved that I would make something to put up in the flat, but I’ve just never made the time. When I have been sketching it’s been for other people.

I’m completely aware of why that is so in this instance though. Whilst sitting with a pencil isn’t exactly wildly energetic I’m a perfectionist and so I work with utmost concentration, and concentration is like Kryptonite for spoons.  It just saps everything.

There’s an old saying that states hands and horses are the two hardest things to draw correctly, but I would suggest whoever said that never tried to draw water-and-foam wolves rising out of the sea or replicate a complicated logo in icing pen on a cake. The latter of which I’m doing again in a couple of weeks, because I’m an idiot. 

Whilst I do have a plan in mind for something for the flat (an A3 Middle Earth map won’t take long, right?) I think it will be a long time before I get into the habit of channelling my creativity into something that really benefits me above anyone else. I’m at least going to attempt to explain why.

I don’t create that often any more – I used to do so prolifically. Whilst it’s never going to be more than a hobby (I’m not good enough for anything more, and that’s completely fine) each piece is something special to me – note special, and not “finished”. Sometimes I think I have to give the end product away just to stop me endlessly tinkering with it to make it better. I remain resolutely terrible at finishing.

I think mostly this comes down to the fact that it is my only real skill. I’m not musical, and I’m not particularly good at working with my hands (even pre-Fibro) so being able to replicate an image my eyes capture is my “thing”. It’s the only way I feel I could give something I’ve made to someone and their appreciation be genuine, rather than a veil over them manically thinking up ways to file it in the bin without me noticing.

Also, I won’t create for just anyone either. For whatever reason I feel a peculiar attachment to the work of my own hands and mind, so while I don’t necessarily want to keep them (I just take a photo for me to keep) it’s not something I make or indeed give away lightly. It’s also a lengthy and tiring process, so if I’m going to spend the spoons on making something for you then rest assured you’re pretty darn special to me. I’ve only ever once gotten that decision wrong, but I still enjoyed making the piece in question so I can’t complain.

(*happy dance*)

My last effort was Thror’s map of Erebor from The Hobbit. If we count the time spent practicing the writing style on the map – which was wonderful fun as it’s a lovely flowing script once you find the knack – all in all it was probably about ten hours work. It was however tremendously enjoyable probably in no small part due to my attachment to the source material. I did get a small thrill when tracing out the words “Here of old was Thrain, King Under the Mountain”.

This also gave rise to my A3 Middle Earth map scheme. I loved replicating Thror’s map and I don’t want to relinquish the style just yet. Learning to take more time for me is going to be a very slow process, but I think one of the best places to start is with something I enjoy so much and takes up a huge portion of my energy.

Time to make something for me.

I have a couple of bits of game artwork outstanding, and one upcoming birthday gift I have in mind if not completely planned out yet – if you’re thinking words along the lines of “glutton” and “punishment” at this point that’s completely understandable – but I have some annual leave coming up and I’ve made the conscious decision that I’m going to make a start on said map. It will be a long time and many spoons in the making, but starting it will be half the battle. It’s a little bit of a psychological trick.

Half-finished pieces of art for me are like unfinished books: a somewhat unbearable elephant in the room and something in desperate need of completion and closure.

Except as I’ve already pointed out I’m very bad at finishing. This could be a very long project indeed.

"The Road goes ever on and on, down from the door where it began….."

Wishing you all many spoons xxx

Thursday, 3 April 2014

Who will rid me of this turbulent.... something?

If only it were as easy as having Petunia assassinated.

Mind you, if it had been that easy this would have been a rather short-lived blog. Swings and roundabouts as always.

By way of summary, I’ve decided to give in and go back to the doctors. I’ve been resisting this for some time as I really don’t take kindly to the thought of going back down the gastroenterology route once more. I’ve been telling myself I can put up with all the various shenanigans my digestive system likes to engage in, if only I didn’t have to go back and fight my way through all the lowest common denominator rubbish the GP would drag me through before actually listening to me again.

Truth be told though, I can’t. Aside from all the usual things, spending nigh on a month so bloated that my clothes don’t fit properly  and being in pain as a result of the most normal of bodily functions is just that one step too far. Actually, it’s several steps too far but I’m exceedingly stubborn. The fact remains I should probably have done this some time ago.

Nothing in my diet has changed in that time so there’s nothing I can point to in terms of why things have suddenly gotten so much worse again. Especially when you consider that up to the last couple of months I’d been without more than moderate trouble in this area for the best part of a year. I really don’t have even the faintest idea what has happened.

So, never one to sit around and wait for the solution to walk through my door (hurry up, would you?) I’m going back to keeping a diary so hopefully I can bypass some of those initial hurdles with the doctor and give them something to work from.

(Image from

I’m also going gluten free for at least a month to see what effect if any that has. I don’t expect gluten is the true source of the problem, but if cutting out bread and pasta and the like helps with the bloating (which I suspect it may do) then I think it’s worth a try. Once I’ve had my trial of that, I’ll try going dairy free.

When I referred to lowest common denominator with the GP earlier, this is actually where some of that feeling stems from. When I first started to develop bowel symptoms the first thing I was told was “Try a week without gluten and dairy and come back”.

Er, no. If you’re going to go free of something to test for an intolerance then do it properly. When you consider the fact an ex-colleague of mine (who was a diagnosed celiac) repeated to me that it takes six years for all traces of gluten to leave the system, what exactly do the doctors expect to happen in a week?

I strongly suspect with answers like those they actually just want to delay having to deal with you. Current thinking for those wishing to go down the Paleo diet route is that you need to remove the offending food groups for thirty days to see a difference. So, thirty days of gluten free here I come.

In light of this decision I went gluten free shopping last night after a quick horror-filled dash around our kitchen confirmed that almost everything in the known world has gluten in it. Aside from the obvious, the yoghurts we currently had in (Activia) contain wheat flour which came as a bit of a surprise. I also wasn’t too happy to find gravy was out too. However, I have now discovered Bisto Best (the glass jar variety) are suitable for celiacs, so that’s something of a blessing.

After copious amounts of eye-watering at some of the prices I encountered, I came away with some yoghurts which use tapioca instead of wheat flour (Shape in this case, but there’s a fair few about), gluten free pasta and some gluten free ginger cake slices so I have a go-to if I want a sugar fix, which I suspect I might. I also found some gluten-free self raising flour and a bag of ground almonds – thankfully there’s an easy equivalent gluten-free recipe for the apple and cinnamon cake I make, so the other half’s birthday cake later in the month is saved.

Other than that, basically I’m swapping sandwiches for salads at lunch time and having fruit and a yoghurt for breakfast instead of cereal. Main meals are planned to be mostly meat and veg so if nothing else I’ll be clean eating like a pro for the thirty day period. Here’s to hoping I see some results.

I’ve mentioned food intolerance tests before, but the main reason I have yet to have them done is the expense. A month has not occurred yet where I have £200+ spare to play with. This week however I discovered a company who live here who offer hair testing instead of blood testing, which if I understand the science behind it correctly is better for showing generalised patterns, whereas blood tests are much preferred for emergency or minute-to-minute analysis. 

I’m familiar with hair testing through work (it’s the preferred method to test for drug and alcohol levels) so know a bit more about it, but another large appeal is that it’s much cheaper. Over £120 cheaper than the previous best quote I’d seen in terms of blood testing.

I might just be on to something there!

I’ve also purchased a copy of Jillian Michaels’ 30 Day Shred DVD, since I’ve enjoyed the DVD I have from her series so far. I’ve heard good things in terms of results for 30 Day Shred and some of the appeal lies in the fact that there are three levels of intensity to the workout, so if the limits of the Fibro dictate that I have to stay at level one then that’s fine, but I’ve also got the opportunity to try something a little harder if I feel up to it.

(Could start being highly relevant after this 30 days.... Original X all the Y meme from Hyperbole and a Half)

Whilst I’m not under any illusion I have much in the way of excess weight to lose, it would be nice to feel that whilst I work against  all the extreme bloating and water retention, underneath it I’m getting into good shape. It would be pleasant to think that at some point in the future I’ll be rid of those side effects and maybe get the courage up to show off a little.

As it’s me than the latter is extremely doubtful but stranger things have happened at sea.

Now I’m thinking about it though, probably not very many *wink*.

Have you had any attempts at exclusion diets or experiences of food intolerance? I’d love to hear them and hope to share mine as I go forwards.

Wishing you many spoons