“…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 ollygreeneyes.blogspot.com)

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.

30 Day Chronic Illness Challenge: Day 12

Day 12: Briefly explain to a healthy person what it is like to live with this illness.

This was again a surprisingly difficult question to answer. Outside of family and close friends, I don't tend to explain very much to healthy people. That's not because I expect adverse reactions, but just because I'm far more comfortable explaining myself to other people afflicted with ill health because the oddities aren't quite so strange to them.

Fibromyalgia

If you’re a fantasy literature fan like myself, you’ll no doubt have come across the concept of wizardy folk who can make people “feel” pain by some sort of nefarious means.

It’s like being followed around by one of these dastardly characters, who’s invisible and bearing a grudge.

In more mundane terms there are well over sixty different individual symptoms which are recognised to be a part of FM or to frequently exist in co-morbidity. My main issues are the very typical deep seated aches and pains with accompanying stiffness and loss of dexterity, unreasonable fatigue and exhaustion, bowel problems, sensory overload (particularly sound), cognitive dysfunction (“fibro fog”, impaired memory and concentration and inexplicable blank moments), pronounced dysmenorrhoea, difficulty regulating my temperature and phases of severe allodynia, both static and dynamic.    

Oh, and if you have ambitions in the Game of Thrones I suggest not being a Stark. Inevitable though “winter is coming” might be, it’s damned unwelcome for FM patients.

Interstitial Cystitis

You’re not attached to unbroken nights of sleep and non-hyperactive bladder function are you? Good, because in terms of IC the logic of those two normalities does not compute.

Before being placed on medication which has thankfully calmed things down a good deal, I hadn’t had an unbroken night in nearly six months. I was up four or five times a night every night.  

Although it’s not entirely accurate the best way I can think of to describe it (at least for me, although I’m  not a yardstick as mine isn’t severe) is to think of having constant symptoms of a low-grade water infection, accompanied by the existence of a tiny little person with a hammer who has decided your kidneys make handy anvil substitutes.

As a result I have to be careful what I eat and drink and the goal is to limit exacerbation and irritation as much as possible. For me this means eliminating anything citrus – I cannot put into words how much I miss fresh orange juice in the current glorious weather – alcohol, carbonated drinks, cranberries and any derivatives and limiting caffeine intake to a minimum.  There are plenty more, and the aim is to eliminate acidic substances from the diet to sooth the constant irritation.

In closing, I’ll offer this take on autoimmune disease because if nothing else it made me chuckle:

 

(I am far too easily amused. Image courtesy of quickmeme.com)

 

Hear Me Roar!

(The lovely work of grimhrakkar.deviantart.com.

The Retired Brideburner - somewhat excited about Game of Thrones Season Three, if you hadn't guessed.)

This post is going to be as much about catharsis as kicking myself up the backside I think, but as we all have these kinds of ups and downs I think it’s worth documenting in here.

In short without wishing to jinx myself a couple of potentially exciting opportunities have arisen in the past couple of days.

What’s the problem, you ask? Well hold your horses.

The past week or so has been a little worrying. I’m unsure if it’s a bad phase (which I think we all have) or if this is actually a spike in severity that’s going to remain in place. In all honesty it doesn’t *feel* like a phase.

I’m aching all over more, and it seems to be the kind of aching my somewhat punishing exercise routine isn’t helping. The exercise isn’t making it worse, which is a good thing and means I can keep at it, but I suspect I’ve hit a plateau in effectiveness which might need a new approach to tackle. I am hoping to take up a new form of exercise in a couple of weeks time so I’ll see if that makes a difference before widening my search for possibilities.

Also, my bowel is just being silly. Pretty much as silly as it was when this all started. The problem with this is (potentially) if I go to my new doctors here with what’s happening, they’re going to send me back to Gastroenterology who are going to perform the same tests again (all of which were unpleasant) and I suspect come out with the same results. Whatever it may be, I genuinely don’t think it’s an inflammatory bowel disease. I’m reluctant to go through all that again, jeopardise future work opportunities with further hospital time and end up in much the same place as at the end of the last bout of tests – ie “we don’t know what it is, good luck.”

However, if I’ve gotten this far I am most certainly not going to give in now.

I’m wrestling with my own emotions and fighting to keep calm – we all know worry and anxiety are not going to be remotely helpful in this instance. For someone who is by nature quite highly strung I’ve been surprising myself with how “zen” I’m managing to be. I think I might be finally accepting that worrying about it won’t make it go away or indeed change anything for the better, so it’s a waste of precious spoons I could put to use in more productive fashion.

So, I’m maintaining the exercise (somewhat toned down today due to both knees making their displeasure felt) and keeping on eating and drinking regularly and healthily. I generally find food is the last thing I want when my bowel hurts, but I’m quite determined to not forsake my overall well being for as long as I’m physically able to keep in control of it. So I’m eating the pasta bake I had planned for tonight whether Petunia likes it or not.

I’m also putting my noticeably reduced energy levels into relaxation – which for me means long hot baths, music and a good book. When I go back to work I’ll have less time with which to do these sorts of things so I’m trying to train myself into doing them when needed now without apologising for it or indeed telling myself “you should really do that ironing” or “you haven’t vacced for a couple of days”. Whilst I like a clean house, I can accept spotless is beyond me nowadays.  I’m hoping this approach will mean it’s easier for me to come home from work, maintain regular eating times and still get the relaxation I need.

I find the little pieces of mind training are just as important as the larger steps in working towards combating a chronic illness. I could succumb to worry and allow myself to be anxious about my situation and what’s possibly going to occur in the future (some small part of me has accepted I will need to return to Gastroenterology and find some answers) – but it will make the present levels of pain and fatigue worse, so I don’t allow it. 

Whatever I need to do for adequate distraction I do at the moment. I won’t insult the intelligence of anyone reading this by suggesting that’s an easy thing to achieve – it isn’t and it takes hard work and a lot of discipline. I’ve found it is helpful and worth the effort though, and I have real hope it will stand me in good stead for dealing with returning to work in the future.

Whatever my body is going to throw at me now or one year or ten years from now, I have a quiet confidence I can learn to face and then beat it, as I’ve learnt (and in some ways am still learning) to do now. I won’t allow myself to be afraid or to consider any alternative but my being in charge – not Petunia.

And if all else fails my partner in crime introduced me to Good Old Gaming over the weekend, and I am now the proud (read: unashamed!) owner of a fully optimised copy of Icewind Dale, Heart of Winter and Trials of the Luremaster. So if nothing else, I’ve orcs to take my frustrations out on – now what could be more relaxing than saving the Ten Towns, I ask you?

Bless you, gaming nostalgia.

Winter is coming

(anyoneforanya.blogspot.com)

(And sticking around for far too long this year might I add.)

The weather. If you’re like me and you’re British it’s probably a popular subject of grumpiness and moaning on an everyday basis. However, finding myself paying particular attention to it wasn’t something I expected to be a part of being chronically ill. The only conclusion I can come to is that I’m clearly a Stark* – I know when winter is coming.

Actually, hot and sunny weather isn't the cure-all you might think it is either. Extremes of temperature at either end cause problems for Fibromyalgia sufferers, but I'll stay consistent with the time of year for now and cover the effects of warmer weather when it finally arrives.

I’ve reached the point where I can wake up in a morning, tentatively flex limbs and know instantly if it is raining outside without looking, purely from the particular quality of pain and aching. I do a remarkable impression of my Dad despite not sharing his rheumatoid arthritis.

Fibromyalgia: a more accurate prediction for rain than a field full of cows lying down. Fabulous - I’m a walking superstition.

November onward last year and so far this year has being particularly challenging, but then again it is my first winter with the Fibromyalgia having set in properly. Since moving up to York I’ve tried to go out on every dry day even if only for a quick walk just to get some fresh air, and it took me a long time to realise that my sudden sharp spike in fatigue was due to the cold. I walk fairly briskly and because of that I didn’t feel the below zero temperatures so much. Petunia definitely did, however. I found an annoying tendency to have to sit down and have a warm drink at some point during a short trip to town, purely because I was too sore and tired to make it there and back in one go.

For someone who has been incredibly active all her life, this is incredibly galling.

 Dry cold I can just about combat. Thermal base layers are a must and reasonably inexpensive to procure, thick socks (multiple pairs works just as well) and I never go out without gloves any more. Even if I don’t end up using them, it’s not worth risking a few days of my hands being crippled just for the need of having brought them out with me. I can mostly cope with snow providing it’s a crisp and cold sort of a day and not the kind mixed with damp and rain that usually occurs here in Britain. We can’t even get snow right most of the time for goodness sake.

Wet and damp weather however renders me fairly useless. Clearly I was born in the wrong part of the world, as the UK has quite a talent for wet weather.

I can still go out if I really have to, but I pay for it for at least the rest of the day if not the next as well. Damp weather outside means no matter what I wear or how many blankets or duvets I get curled up under, I cannot get warm inside. 

Usually my Fibro pain, whilst always present, moves around a little and concentrates on the same areas – shoulders, hips and hands are my particular hot spots. When it’s wet, it’s EVERYWHERE. I can only describe it as the sensation of pain deep down into your very skeleton, and every movement creates a spike. I also start to stiffen up very quickly and have to keep having a wander up and down the flat to loosen my shoulders and hips off. I’m replaying an old RPG called Baldur’s Gate II at the moment so I don’t appreciate such interruption – the mind flayers will get me if I leave!

Yes I could press pause, but I tend to forget that. A lot.

I haven’t really found any effective way of combating this beyond having hot baths as often as I’m able, so if anyone has any suggestions I’d be most grateful to hear them. I’ve tried heat pads in the past for an old back injury and I never found they worked too well. The heat is a nice sensation, but not very effective beyond that. I took some of these pads with me to a festival last year in the hope of gaining some relief from my tired (and very painful) shoulders – it was too hot and sunny for the pad to be comfortable and my shoulders remained obstinately achey, so it would be fair to call this one of my less successful attempts.

My one main source of comfort is to do some form of exercise indoors to warm up, and to take general mothering advice of making sure to have hot meals when it’s cold out. I’ve found Pilates to be my particular go to, although I appreciate that might not be right for everyone. However, being able to do some form of gentle exercise just as close to a warm radiator as possible definitely has appeal.

And if all else fails? Get settled under a duvet and grab a hot water bottle - or the cat.**

*I’m not up for having my head cut off, before anyone makes a wise crack. I may be from Sheffield, but I’m not Sean Bean .

**My cat does not necessarily always care for this suggestion.