Let it go

(Yes, I love the song. No, I don’t think much of the film. Next query?)

I thought I’d tackle something a little difficult this week to mark a return to normal posting after my absence. It will sadly probably be familiar to plenty of readers.

One of the most oft-repeated pieces of advice you receive in chronic illness circles is to avoid stress and extremes of emotion such as anger. I can’t really bemoan that as it is sound advice, since anything stressful is toxic on the system and plays havoc with symptoms. There are all sorts of methods and tips various people suggest in terms of limiting or managing stress and anger – removing yourself from toxic situations, taking time to yourself in a calming environment, practicing yoga or similar. The list goes on.

However, nobody ever warns you about grief.  

In the last few years I have certainly encountered stressful situations and scenarios which made me angry or upset, and this had a subsequent transient effect on my health. Petunia essentially had a party on each occasion.

This is the first time I’ve had to deal with grief since falling ill. I know enough of Petunia’s habits now that I fully expected a flare up and I was pretty accepting of the inevitability. Pets are a part of the family and it would have felt very strange indeed to have not felt any physical side effects after losing Misty. In some sense I suppose it would have felt wrong given the extreme of circumstance.

I wasn’t in any way prepared for what actually came. I now fully understand and appreciate when people describe their symptoms as “feeling like having been hit by a train”. I got myself into work for the rest of the week, mostly because I knew I needed the distraction of being busy to take my mind off what had happened.

However, it marks the first time I’ve struggled to walk. I managed but with a very pronounced limp. That was definitely the most bizarre and violent flare up I’ve experienced thus far – bizarre in that for the first couple of days it only really affected my left side. My hip stiffened up so much that moving my left leg was painful, and spending an evening sitting with said leg resting on a hot water bottle with a wheat bag on top of it under a blanket did nothing to relieve the tightness and pain. I was pretty solidly in zombie mode for a couple of weeks. I didn’t want to see anyone outside of my family and a couple of very close friends and generally felt like wanting to stop the world so I could get off for a bit.

(Grief does strange things I suppose.)

This was four weeks ago. I’m not quite back to normal but I am at least better. The extremes of the pain and exhaustion have passed, in much the same way the sharp edges of grief are fading. We scattered Misty’s ashes recently and I think that helped in terms of closure. We chose the local university campus which is set around a lake and the surroundings are very green and picturesque.

It’s also a bird reserve, which means in life Misty chasing the birds and causing mayhem would definitely have been forbidden – and that certainly means it would have appealed to her all the more!

The point I think I wanted to make with this post is that not all situations which prove telling on your health are avoidable, and more importantly not all of them should be avoided. To not grieve for a companion of some thirteen years would have been entirely wrong, and an insult to the relationship we shared and the memories we have of her. All the upset is therefore a necessary and more importantly “right” part of the process of saying goodbye.

There’s a lovely quote from Tolkien’s Lord of the Rings which applies well here:

“I will not say do not weep, for not all tears are an evil.” - Gandalf

I am better than I was, but I am not whole yet. That part will only come in time. However, I can’t complain or indeed poke fun at this most recent flare up as I usually would because it frankly doesn’t deserve that. It was something that naturally had to happen, and therefore I shall keep my sharp tongue in check until next time.

In closing, there are definitely signs that we (my partner and I) are healing. There was never any doubt from either of us that cats will be a part of our lives in the future. It won’t be until our living circumstances change, which means it won’t be for quite some time. I wouldn’t want it to be too soon regardless – I want the time to miss her and it wouldn’t be fair on another cat to be living in Misty’s shadow.

However, we already know the name of said future cat. If it’s female then Alex gets to name her, and he wants to call her Caithe after the Silvari member of Destiny’s Edge in the Guild Wars mythos.

This means of course that I get to name the cat if it’s male. I didn’t even pause when asked for my choice of name – I certainly hadn’t thought about it, but the answer was there anyway. Alex knows me too well to be surprised that I went for a name straight from the Malazan Book of the Fallen.

A male cat will be called Fiddler. 

Has anybody else found grief wreaks havoc with symptoms? How did you deal with this?

Wishing you all many spoons xxx

Runereader

Read the lines that no one reads
They are written everywhere

Elvenking - Runereader

Something I’ve had numerous conversations about recently is the subject of treatments, and in fact the sheer range of weird and wonderful alternatives which are available and subscribed to alongside the traditional doctors route. Two main points came out of all this and I’d like to address them both. Firstly, the fact that something that works for one person might not work for another and that doesn’t invalidate anyone’s choice, and secondly bulldozing in with your opinions of other’s treatment is usually neither welcomed nor helpful.

Firstly let’s tackle the idea of treatment choice. It definitely seems to be a topic where everyone has an opinion whether they have any relevant experience or not. One of the areas you see this most in is alternative medicines and therapies and such things such as homeopathy. The central complaint is that it doesn’t work. In a strictly scientific sense that’s correct, but there’s a side to alternative treatments that I think a lot of people don’t consider and it is particularly relevant to chronic incurable illness.

The oft-heard refrain is that alternative therapies will not cure you, but I ask you to pause for a moment and consider the fact that in most chronic illness cases medical science cannot cure us either. Most current treatments are geared towards managing symptoms simply because we do not as yet have the understanding to tackle the illness itself at its source. In many situations this means medications with a roll-call of unpleasant side effects almost as long as the symptom list they are supposed to combat. It isn’t uncommon to hear people say that their medication makes them feel worse than their condition did in the first place.

That covers medication. The other traditional suggestions are basics such as exercise and “getting some fresh air”. Sound advice, except those things aren’t always possible for everyone. What people forget is that just because one person with Fibromyalgia (an example, but it applies across the board) is up and about in full time work doesn’t mean that another individual with the same condition can’t be bed-ridden.

However unpalatable it may be, we are in the realm of diseases that seriously reduce and even destroy sufferers’ quality of life. In my absolute worst flare-ups moving about in our flat is the most I can manage – imagine how much worse it is to not even be able to manage that on a day to day basis. In those scenarios, which sadly aren’t as uncommon as we would all like to hope, suggestions revolving around exercise and being outside are sheer folly.

In our hypothetical scenario then, we’ve exhausted the basics and the medication side of the story. Is it really such a bad thing that people in just such a situation turn to alternative therapies?

(A handy simplified guide from triaxl.com)

Whatever you may personally feel about any or all of them, in my view if it makes someone feel better then it can’t be wholly a bad thing. At the level where most options are unsuitable it really does boil down to the psychological and to comfort rather than successful treatment.

I’m not suggesting people can’t have negative opinions of any alternative therapies at all – from a personal perspective they aren’t something I can see myself trying. The point is that as always it’s rude and narrow-minded to make sweeping assumptions that people who choose to engage with those things are doing so rather than “doing something useful” for their health. You have absolutely no idea what they are or aren’t doing. How do you know they haven’t already exhausted every other option available to them and so are making the best of things in whatever way they can?

The real point of this is that when the only choice is to manage the symptoms with no hope of actual relief or cessation then what people decide to do to help themselves really is nobody else’s business.

This leads me nicely into my second point, which is when someone says they’ve started a new treatment or seen a new type of specialist and the other person chimes in with comments along the lines of “Well they’re rubbish. They don’t do X, Y and Z and you won’t get anywhere with them.”

With all due respect, who asked you? Unless I specifically ask “What do you think?” I am in no way inviting your opinion, and if I’m not inviting it then the chances are that’s because I don’t want it.

I can appreciate the use of specific examples of things to watch out for with a type of treatment, as shared experiences are often the only point of reference possible. However to flat out deny something will work with no further thought is beyond unhelpful. Frankly I’d say it’s more about you venting your spleen than it is about offering anything useful to the other person.

New treatments are a funny business and psychologically they will promote a mixture of hope and expectation paired with doubt and an attitude of “not this again”. Bad experiences will obviously taint anybody’s view, but that’s no reason to impose them onto another person who has just set foot on that particular road. It’s much more considerate to let them find out for themselves whether the treatment in question is for them as in their instance it could be helpful – just because it didn’t work for you doesn’t make that experience universal.

I know myself with treatments that take a long time and are not guaranteed to succeed it can be extremely easy to be swayed by others’ experiences – because you haven’t seen results yet, it’s very easy to allow that negative feedback in and therefore not engage fully with the options presented. Blasé comments of “Oh it’s rubbish” without any qualification could in fact jeopardise someone’s experience with a treatment that may have proved successful if they hadn’t been set against it by such thoughtlessness.

The key lesson? An individual’s treatment, however long or short the process and however many options they may have to attempt, is about them. It is their decision and it is in their hands. This means therefore that it’s not about you and your opinion, however over-inflated a view of its importance you may have.

(Take note)

Unless specifically asked for, you and your opinion are not invited to this particular party - and that’s something worth bearing in mind.

Has anybody else experienced this sort of thing? How did you go about dealing with it?

Wishing you all many spoons xxx

The White Feather in the Tar

A somewhat different post from me this week, but I thought it might be useful for those whose skin tends to suffer along with the rest of their body at the hands of their chronic illness.

I have two separate recommendations for people to try – one a general skincare range, and the other a make-up one. .

I can hear the people who know me well giggling already at the latter. I am to knowledge of make-up what Jeremy Clarkson is to political correctness. It might be fun to flirt with it on occasion, but in general we just don’t get along.

The skin care is the Bodyshop’s Aloe range. A set of the cleanser, toner and day cream were gifted to me for Christmas and I have now been using it for about a month on a daily basis.

To give some context, I’ve tried a lot of the brands which recommend themselves for sensitive skin in the past to no avail. My skin became so angry with the Simple moisturiser for example that I was almost waiting for the day when the inflamed redness along my cheekbones would start to spell out swear words.  

However, the Aloe range seems to be the Holy Grail for my skin. One of the best key indicators was that none of the three products caused any initial sensation – usually, anything I put on my skin causes an immediate burning sensation. Anyone who tells you “That just means it’s working!” is wrong – it means your skin doesn’t like it.

The Aloe products don’t do that and thus far I’ve had no reaction at all. The redness across my cheeks is pretty much invisible, and albeit the unevenness underneath is still present it is nowhere near as pronounced as it was. Remarkably even when I was in a full flare-up following losing Misty my skin barely altered, whereas previously it would have been incredibly noticeable.  Price wise a full replacement set would be about £15 and using them daily the individual products would probably last a couple of months.

(Image from productreview.com.au)

 Now, the giggle-inducing part. My mum visited this weekend and we went ostensibly shoe shopping - yes, I’m nearly 25 and still can’t shoe shop on my own because shoes are terrifying and don’t make any sense. The shoe mission was painlessly successful in the end and I started scouting for a proper set of make-up brushes.

I’ve been slowly teaching myself a couple of “looks” as it were – I highly recommend Lisa Eldridge’s make-up videos on Youtube for anyone wishing to try this themselves – and had come to the inevitable conclusion I actually needed to buy  some half-decent gear if I was going to have any chance of success. I still view make-up as something to play with when I’m going out in the evening or to something special in the day – it will never be a day to day consideration. Having said that though, it would still be nice to learn a couple of things to a good standard.

Shoring up some courage I went to talk to a lady at the Liz Earle counter in John Lewis. The name actually meant nothing to me but it turned out to be an accidentally wise choice.

Previously I’ve always avoided make-up counters like the plague, mostly because when I was first flirting with the idea of make-up when I was in college, most of the make-up counters in our local Debenhams and similar were staffed by in majority young girls who had nothing better to do but tear apart their hapless previous customers for what they looked like and the stupidity of their questions. In my head they were therefore havens of hairspray-scented cattiness and were generally very unpleasant places.

It’s probably not surprising therefore that the reaction I expect upon approaching a make-up counter and admitting my lack of knowledge is one of “What idiot let this creature out?”

As it happened this couldn’t have been further from the truth. The lady in question probably spent the best part of an hour with us getting a feel of what I wanted and tailoring her advice to suit, as well as happily giving tips and tricks that were outside of the “official line”.  She then proceeded to try some of the products on me and I ended up coming over a little emotional at the results. The difference is staggering when somebody professional does your make-up. I don’t generally associate myself with the subtlely enhanced and rather pretty face looking back at me.

So, why do I think Liz Earle is a good choice for people whose skin is sensitive and flares up?

Answer: because you can’t feel you’re wearing it.

(Apologies, but I don't have anybody else's face wearing the make-up, so you're going to have to put up with mine.)

The make-up is so light and breathable that the only way I could fully tell I was wearing the product was from the slight cosmetic-y smell I kept catching on occasion. I couldn’t actually feel it. By the end of the try out I was wearing a base, concealer and blush on my skin and the lightness of it was tremendous. Score one against my idea of foundation being the sum of all evil and feeling like having wet cement painted on your face.

To further prove the fact, I took the make-up off last night and today my skin is clear. No redness, and it didn’t require the usual scrubbing away with water to the point of my skin actually feeling sore that I usually associate trying to remove make-up at the end of the night.

Liz Earle products get further plus points for their policy to not test any of their range on animals, and the fact that the make-up brushes and accessories are made from 100% man-made fibres.

The downside is it isn’t cheap. I spent a slightly eye-watering amount, but in hindsight it’s not as if I’d have to spend anywhere close to that amount in one go again in the future. You’re never going to be replacing everything at once (one hopes) and in my case the sparing usage will mean they last forever.

Talking about make-up and skin care seems to encourage a negative attitude from some people, that any interest in such makes you overly vain or alternatively that you must be attempting to hide behind the “war paint” because of crippling insecurities and confidence issues.

From a chronic invisible illness perspective, there's the even more irritating assumption that since the use of cosmetics can you make you look more lively and awake, "better" if you like, then you must be feeling better. If make-up is your day to day routine this can even lead to the assumption there's nothing wrong at all. I grow weary of the explanation of this, so I'll end with a simple thought.

Sometimes self-expression is just that and nothing more. 

I don't think I'm turning horribly conceited or hiding from anything (especially not my illness) in making some forays into make-up, I do look forward to on the rare occasions I want to look a little bit special being able to do so without the fear of angry, sore skin as a consequence.

I hope those suggestions are useful for others – please do let me know!

If anybody would like the details of the specific things I’m wearing in the photo or the Aloe skin products I’m using, please do shout up as I’m happy to share.

Wishing you all many spoons xxx

Life lessons learned from cats

1. Anything can be achieved with patience (and strategic begging)
But only if you're cute. If you have pretty markings and great big Puss in Boots green eyes, the world is your tuna. Most anything can be achieved by sitting very still in your human's eye line and keeping up a very pointed stare - thus distracting them from whatever it is they're doing. On the rare occasion this doesn't work, pitiful meows are perfectly acceptable for an extra nudge.


2. Always set your alarm by your stomach.
Or more importantly - set your staff's alarm by your stomach. Whatever this "weekend" nonsense might be, they should know when you want breakfast without all this unseemly noise outside the bedroom door. However, if your human leaves the bedroom door open, one has to admit it is rather fun to go in there and wake them up by rather less orthodox methods. Surely all that screaming is not necessary.


3. Shoelaces are far more deadly than we humans ever imagined.
With the number of times humans trip over their own shoelaces, one would think they would learn to be more wary of rogue laces. No matter how earnestly you chase, pounce on and seek to brutally murder the shoe lace they never seem to learn and put the damned thing outside. If it was a mouse, the whole thing would be over without issue. Humans really need to realise that shoelaces are far more dangerous than mice.

And no, I can't tell the difference between a rogue shoelace and a shoelace legitimately attached to a shoe. I'm a cat, not a scientist.


4. Illness on cue isn't cheating - it's practicality 
No, really. Timing when exactly you're going to throw up your recently-gobbled breakfast is actually clever. Nobody wants to spend all day inside with the unpleasant smell, so throwing up just as your human is about to leave for work ensures a most efficient service in clearing it up. Being sensible should never be considered cheating.


5. Every chair in the house is mine. It was never yours, you are surely mistaken.
Also, the bed is a chair.


6. Treat others how you would wish to be treated.
Just kidding. Treat every non-cat with disdain and every cat with suspicion. Particularly that tabby over the road - he's ginger. Allow your staff just enough affection to keep them happy whilst at the same time never letting them forget who is the ruler of the household. Humans are useless without direction, which it is your solemn duty to provide for them.

Yes, the directions to the food cupboard. Whatever did you think I meant?


7. When it's time to go, go out in style. 
And by style I mean bribing your humans to within an inch of their lives for treats, all the food you shouldn't have and all the cuddles. To do otherwise would make you less of a cat.

The blog will be quiet for a while, because as I'm sure you've gathered from the last lesson we had to put our beloved Dovakhitty to sleep. She had a tumour and there was nothing the vet could prescribe save being spoilt rotten for her last "weeks not months". However within four days of diagnosis she aged dramatically before our eyes and we knew it was time to let her sleep. Nobody ever said the kindest decisions wouldn't be the hardest.

What seems a lifetime ago my family gave a terrified little rescue moggy a home, and through two moves and various misadventures Misty gave us thirteen wonderful years. 

Good night beautiful xxx 

Strawberry Girl

And blue skies of promise opened before us

There in her eyes are the dreams of the world.

Blue skies of promise rained down upon us,

Life is so sweet with a strawberry girl.

Blackmore's Night - Strawberry Girl

Or, a study in mind-numbing stupidity.

I almost feel bad for using that song as a title for this post because I'm quite fond of it, but when trying to think of something saccharine it was the reference my mind conjured up. Sorry Blackmore's Night.

If you inhabit the internet to any degree whatsoever (and I'm rather pleased you do, because it means you can read this) you will no doubt have come across the idea that "positive thinking" fixes just about everything. All your upsets and triumphs are a product solely of the way you look at the world. It's somewhat akin to making your own luck and the "law" if you will that people with positive attitudes attract positive situations. 

I'm writing this because I want to illustrate the difference between the sort of positivity I talk about on TRB - essentially, if you can laugh or cry at your situation then you may as well laugh - and the above. I was falsely flung into the latter category recently and said mistake really made me look at the problems with the assumption that a positive attitude will solve all your problems. As such, I ultimately want to clarify that I'm very much not on board with such an idea.

What I mean when I speak of being positive is literally that - when neither positive or negative approaches or views will change the situation, to me it seems better to go with the positive side if you can. It's less stressful and toxic on the body. I don't for a second mean you should be unrealistically happy go lucky and carefree at all times. That's ridiculous. 

(Well put, he of the cunning hat. Image from elliedi.com)

In my own situation Petunia, Her Most Tempestuous Majesty, is going to be just that no matter what I do. It helps me to find as much humour in the situation as I can. That approach may not work for everyone and I'm certainly not saying you should be going along with it if it doesn't suit you. If you find it difficult to laugh at your situation, that doesn't make you a bad person. I'm not "right" with my approach any more than you are "wrong" in a general sense - it's about what is right or wrong for you specifically and hang what anyone else says or thinks. 

The "fix all" positive thinking however doesn't allow for those personal differences of mood and outlook and a person's overall nature. What makes me most uncomfortable about it is the unspoken suggestion behind it that you are in some way responsible for your own problems if you don't adopt such an approach. In short, do it our way or not at all. 

Also, lets just stop for a second and consider logic. If you're a subscriber to this sort of thing, I direct this question at you - do you really believe just "thinking happy" is going to cure an illness? If you do, I humbly suggest you go study the basics of human biology and pathology and be quiet until you have done so. 

An unrealistically positive outlook is never going to cure the incurable. If it did, there'd be no ill people. We'd have eradicated cancer, HIV, malaria, meningitis, leprosy and all the rest of the deadliest diseases on our planet many years ago. We'd be sorting out the little niggles like the common cold and hayfever by this point. While we're at this extreme positivity lark, how about we beat death too? It's all a matter of thought, don't you know. 

It's not just this fairytale-like refusal to accept reality that's the problem though. There's a deeper and darker unspoken assumption behind the "positive thinking attracts positive experiences" mantra. I doubt all of those who parrot this insanity have recognised it, but I have. 

There's an apportioning of blame lurking in the background there. Surely if all it takes is an aura of smiling superiority, then those of us whose lives are not sparkly and perfect are surely responsible for our own misfortune? Those patients out there with a myriad of chronic illnesses like myself, we're all perfectly capable of thinking ourselves better and so surely we're "choosing" to be ill? 

(This seems remarkably relevant. Image from vampirediaries.wikia.com)

As I said above, a study in mind-numbing stupidity.

I don't have an answer for why chronic illnesses exist and what causes them - I'm not a doctor. Come to think of it, no doctor I've met so far knows why either. I do however know what the cause is not, and the fault definitely does not lie with patients themselves. Some of the most cheerful and inspiringly positive people I've had the pleasure of meeting are sufferers of anything from chronic pain to cancer. If people like them can succumb, then so can anyone else. 

I realise illness and a hopeless lack of a cure is an uncomfortable and difficult concept for anyone, but wrapping the concept in a neat little box and then hiding it from view will not make it go away. All us patients will still be there, and we'll still be pretty annoyed with your insidious suggestion that it's all our fault.

On a more amusing note though, I'd love someone to put the idea to Her Majesty that she's an impotent by-product of a thought process outside of her control. She'd love that. 

Wishing you all many spoons xxx