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The highs and lows of living with an immune disorder

It was inevitable that a big life change like buying a house would spark a flare-up of an immune disorder which reacts to stress. Anything which deviates from the flat line of normality is a risk. My particular flavour is called Ankylosing Spondylitis but I’m writing this post for anyone who ever feels the effects of stress.

My reaction to stress might be extreme but it is something which affects all of us in its own unique way and yet it is widely misunderstood. I am less surprised these days by the things I find ‘stressful’ but it has taken a long time and many visits to the emergency clinic to appreciate the way little things can build upon each other to ratchet up the pressure.

The role of stress in my condition wasn’t made clear to me until I was more than 20 years in to living with it when I saw a specialist in Brisbane shortly before he retired.

He had treated my uncle Fred for the same condition in the past and so the first part of the consultation was spent reminiscing. He didn’t know Fred had died some years before from prostate cancer. But he was unsurprised to hear how hard he’d fought that illness, right to its bitter end.

He was a fighter, old Fred, much braver than me. Ankylosing spondylitis is a painful condition which primarily affects the spine, in extreme cases fusing the vertebrae into a fixed, immobile position.

Fred had it far worse than your Girl Reporter. He told me near the end that he had been in continuous pain until finally his spine fused completely. At least it didn’t hurt anymore.

Then he broke his neck and was delighted to be able to move his head freely for the first time in years. He was laughing as he told me that the horrified medical team, far from sharing his joy, put a stop to that before he could do any more damage to himself.

Fred’s experience was extreme and nothing like mine, which goes to show that everyone’s immune disorder plays out differently, whether it’s AS or anything else. I wish I could deal with mine with the same good grace as my uncle Fred but this isn’t a whinge fest, this is about the things which are the same.

When we got down to business the rheumatologist asked me what had been going on in my life recently. It was an odd question which no doctor had asked before. And yet, he said, he had never known a case of inflammation which didn’t have stress as its trigger.

In other words, a compromised immune system will react to any change – perhaps an elevated heart rate or a surge of adrenalin – as if the body is under serious attack.

In my case that means pain in any or all of my joints, cold-like symptoms and extreme tiredness. Sometimes, but not this time, it affects my eyes with painful inflammation of the iris called Iritis or Uveitis which can lead to blindness – a symptom my uncle Fred never experienced.

The thing about stress which is hardest to get to grips with is the fact that it is neither negative nor positive. As Hans Selye, who coined the term in 1936, put it: it’s “the non-specific response of the body to any demand for change.”

Sounds simple enough, but we are accustomed to thinking of stress as purely negative. In the months of house-hunting, house-choosing, house-buying, house-moving I heard over and over, “Don’t worry.”

But I wasn’t worried. I was excited, I was happy. This was a great thing. And, sensing change in the wind, my immune system wheeled out the big guns and went on the attack.

The best I can hope for before, during and after a flare-up is to try and keep myself on an even keel both physically and emotionally. Change is inevitable for all of us so even if you don’t have the pleasure of something like AS you will have a non-specific reaction to change which may not be immediately obvious or understood.

Stress is acknowledged as a major factor in a range of physical and mental disorders and there are numerous recognised strategies for minimising its effects. The purpose of my article is not to expound the benefits of meditation or gardening but to highlight the elusive nature of stress itself.

The highs of life can be just as challenging as the lows, as my recent experience demonstrates.

The great excitement of moving into our dream home and finally putting down some roots after years of wandering has laid me low for weeks now. The pain has been manageable for most of it but the lethargy lingers on.

There’s a link at the end to a long but rather good explanation of the debilitating effects of chronic pain and fatigue using a simple spoon analogy.

Put briefly, every day begins with a calculation, the must-do against the want-to, with most things adding up to the can’t-manage.

This will pass and when it does, experience tells me, it will pass pretty instantly.

I know the fog is clearing because I’m writing this, after weeks of simply not having the energy for anything other than the essentials.

The fog will lift and all of a sudden I will be skipping down the street and jumping on to a train flushed with the excitement of a brief run down the station platform. It will be euphoric.

And that euphoria will be a new danger. Coming out of a stressful situation can be a whole new stressor. Even as I long for the fog to clear I must remember not to dance too long upon the sunlit slope when I finally reach it.

And that’s where meditation, bush walking or healthy eating and regular bedtimes show their worth. A strong base line, however you choose to maintain it, is the best way I’ve found to keep the sine wave of simply living within manageable bounds.

It’s not the most exciting strategy, nor does it offer any guarantees against another flare-up. But it does provide a degree of protection against the worst effects. And if it can do that for me, out here on the perimeter, then a little stress-resilience must be worth building whatever your non-specific reaction to it may be.

I’m taking a winter break. I’ll be back in July with more Adventures of a Girl Reporter, more delving into the Big Baxter story, more observations both light-hearted and serious. Til then, relax! It’ll be fun.

Further reading:

What is stress? – The American Institute of Stress

Explainer: What is the immune system? – The Conversation

The Spoon Theory – Christine Miserandino

Your Girl Reporter (usually) blogs fortnightly on the past, present and future of journalism – from growing up in Hong Kong, to working in the UK and now observing the state of the world from my native Australia. Read more Baxter here

 

15 comments

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  1. Pingback: The highs and lows of living with an immune disorder | Sally Baxter

  2. Ruth L

    Enjoy your new house and take it easy.The sky will not fall in if the dusting is not done.
    As a longtime lupus person the chronic fatigue aspect is hard to take.

  3. Michael Taylor

    Same here, Ruth. What’s worse is when people think you’re just being lazy. Truth is, the damn lupus just knocks you from pillar to post.

  4. DanDark

    If I am stressed which dosnt happen much these days, but if it does I write poems, I knit, I garden
    anything that is productive and contributing to my life or someone elses or the planet
    At the moment I am knitting beanies and gloves for homeless people in Melbourne so they can be distributed to our most needy and vulnerable in society,
    When you help someone your stresses and problems seem minute and you can put your secure life into perspective
    and just to wake up everyday is a bonus,
    living life is a privilege not to be abused, but to be used as a tool to contribute to humanity…. 🙂
    Good luck Sally….

  5. Sally Baxter

    Some beautiful ideas DD – and lovely thoughts on perspective. Thank you Ruth for the good wishes – and a relaxing Sunday to all xx

  6. diannaart

    Sally

    Thank you soooooooooo much for these articles. I have an immune disorder and find it difficult to explain to others how stress, good or bad, impacts as a result – well the same result – friggin’ aches, pains, mental fog and unbelievable lethargy.

    I have to treat each day as it comes; maybe I can keep my doctors, supermarket, dentist, post office visit or maybe not. Friends have learned to accept when I cancel, family has taken a bit longer – I was always the super active, fast thinking, on the move one…. who has stopped…. at the wrong time when my mother finally succumbed to a long term illness; scleroderma (not what I have, but a deadly, incurable, inevitable illness in the auto-immune disease ‘family’).

    Part of the difficulty was my sister thinking I was exaggerating my problems in order to do less for mum. The entire 4 years from when mum had started to require oxygen for breathing till her inevitable demise, was a struggle to try and drive the 2+ hours to be with her and navigate the usual problems families have when a parent is dying.

    Mum passed in 2011. I had a massive relapse a few weeks after the funeral (it lasted for 6 months). It is now 2015 and I think I am improving enough to take on selling my home (I need the equity) and relocating somewhere else later this year. This is something I have been saying for 4 years now, this time I think I can make it.

  7. Mic the Heretic

    I contracted CMV in-utero and no one knew. This resulted in deformations in the neck vertebrae that went undetected. I could never learn to swim properly because I couldn’t turn my head far enough to breathe. The neck issue eventually revealed itself at about age 27 when C2-3 which had been carrying the entire load finally gave way.

    As a result, I was fighting Chronic Fatigue Syndrome for 30 years with no knowledge. I had been out in the workforce fighting, not to keep up with the Joneses but, to keep up with anybody. In my very last job, I had a mattress under the desk so I could be on time the next morning, and then to have a doctor tell me I was bunging it on was the last straw. I had no choice but to quit, pack up, and move back in with my father.

    By word of mouth, I was referred to a doctor in Brisbane who had an excellent track record of dealing with CFS and related conditions. When she ran off a huge list of things you wouldn’t normally think to tell a doctor, it was like “having your cards read”. We worked out that the CFS had subsequently been ‘triggered’ at age 4 by the measles and, re-mapping my life from that point forward, suddenly things made much more sense.

    This doctor (Jean Macfarlaine) was dragged before the Queensland Medical Board because of her apparent “specialization” when she was only practising as a GP, the greatest concern being the costs she had racked up in pathology tests. Now who’s wasting the money on pathology, the ten doctors who run the same set of tests that reveal nothing, or the one who does the full testing to find the problem? They finally ‘nailed’ her on ONE case of Xanax addiction, where it took four years for the patient to get off it. I would argue that if someone took so long to taper-off, it was desperately needed! On this alone, she was de-registered, and I’ve been left poking around in the dark with no idea where her treatment regime would have gone.

    For people with auto-immune issues, it is important to understand that you do NOT have LOW immunity. In fact, the case is quite the reverse, and the immune system is still fighting a virus that is no longer there. We associate the ‘flu with itchy eyes, running nose and severe muscle pain. These symptoms are NOT caused by the virus but by the immune response to kill the virus. A fever is an attempt to destroy the virus, and should be supported until it reaches ‘danger level’. Trying to bring down a normal fever is only helping the virus to survive.

    Therefore, people with these conditions will show the symptoms of many viral diseases when they’ve never contracted that particular virus. One of the body’s favorite methods of attacking a virus is the production of Interferon-B. If you could give yourself an injection of this chemical you would find yourself flat on your back with the worst case of “flu” you could ever experience, and the fatigue would be abominable. I’ve gone to bed Friday and woken up Sunday! When I went to Uni in 2004, I had to leave my bedroom door unlocked so that other flatmates could drag me out when the fire alarm went off. People have even used air-horns in failed attempts to wake me!

    STRESS was always a constant but previously unrecognised factor. Even with medication, I still suffer but it’s less often that someone needs a spatula to scrape me off the wall.

    If you are prone to stress because of other conditions, many of the natural remedies may prove helpful. Unfortunately, I react badly to many that I have tried, however, the long list of apparently unrelated symptoms that disappear while taking Xanax demonstrates that it’s providing something which my body badly needs.

    In the medical world, we may each be left to feel alone but, remember, out here in the real world we have to back each other up!

  8. Sally Baxter

    Best of luck to you Dianna – it’s been a hard road for you and the next step will be a big challenge too but as you say we must treat each day as it comes. We can only do what we can do xx

  9. Sally Baxter

    Well said Mic. I particularly liked your comment that it’s certainly not ‘low’ immunity – far from it. It’s a hyperactive dog of an immune system that barks at shadows. Some people find a visualization technique useful eg what can you do to calm the dog down. So you might take time out to walk the dog, pat the dog, reassure the dog – just don’t introduce him to the neighbours. None of these techniques will ‘fix’ anything, nor should they be considered as a replacement to medical care, but there are some simple things out there which may just let a sleeping dog lie a little bit longer. All best xx

  10. kerri

    Oh Sally!! I remember when I was diagnosed with my first AIRD, googling to find out as much as I could I came across AARDA. The American Auto immune Related Disease Association and set myself the task of reading the descriptors of as many diseases as possible. When I came across Ankylosing Spondylitis all I could think was Thank God I don’t have that! Mine is Fybromyalgia and I often think like Micahel and many commentors above that people think I am lazy. In reality, we all know that constant pain is exhausting and you do what you can when you can which makes your behaviour somewhat erratic. Two things were pertinent to me in my medical treatment. The first was about 8 years ago when returning to my Rheumatologist after 6 years for re assessment to better control the pain. I informed her I had recently been diagnosed a Coeliac. Her response “oh bummer! Fibromyalgia gets worse with Coeliac” Great!!! The second was this February when my new Rheumatologist told me Fibromyalgia gets worse with menopause!! Another great!!! The first explaination was brought home to me Thursday night when after carelessly eating 2 postage stamp sized pieces of a dried asian ham I went to bed unable to get past the pain and sleep. Taken as much pain relief as the doctors allow. Stuck salicylic acid patches to my shoulders. Applied heat. Stretched. Could not get to sleep. About 6 am suddenly realised? I’m going to hurl!! Vomited about two tablespoons and in doing so realised the ham was the culprit and as I had been warned, having a Coeliac reaction made the Fibro way worse. Spent the next 2 days feeling better, less pain but exhausted and rather zombie like. I wonder if there is anyone doing research into AIRDs and coming up with stats that expose just hiw many people are suffering and the effects AIRDs have on society.
    I am lucky. I was able to retire early. There is no way on earth I could hold down a job these days. I don’t get Flu symptoms as others have described, in fact I cannot recall ever having had the Flu! But the pain!,,

  11. kerri

    Just read the spoon theory. Thanks for that Sally. It is a good metaphor!

  12. stephentardrew

    I had chronic fatigue for a while and it certainly was not fun.

    Come home after forcing myself to work and literally lie down blankly watching the TV with not a skerrick of meaning entering my brain.

    A feeling of total apathy and almost physical and mental amnesia. Sort of like conscious unconsciousness.

    Luckily it receded after some months.

    Back then it was a waste of time seeing a doctor.

    I don’t know what I would have done if it continued.

  13. Mic the Heretic

    Spoon Theory is excellent. I’ve referred many people there before.

  14. diannaart

    I feel complete empathy with the stories people have to tell of their AIRD illnesses. Some, like Stephen have a temporary illness – you are very lucky, for others the disease either continues or even gets worse.

    Many of us look quite well, illnesses such as Scleroderma can be visible if attacking the skin or Multiple Sclerosis is noticeable as the disease progresses. Other illnesses like Fibromyalgia and Myalgic Encephalomyelitis (ME) are only apparent when a sufferer is really exhausted – people close to them can tell. I was able to work as an actor/extra for a while earlier in my illness – occasionally someone comes across my resume and I am offered work – I simply cannot make promises and have to turn down work!

    I have heard of Spoon Theory – it is absolutely spot on. I have tried to explain to my family that ME means the most I can hope for is $5 in the tank (maybe less) and will not refuel until my system feels rested enough (one night or days, weeks). A car looks the same as any other car – whether it is running on empty or has a full tank.

    I look forward to hearing from people – it helps.

  15. Annie B

    A truly wonderful and very bravely written article, Sally … thank you so very much.

    The comments, observations and personal experiences expressed here are also very open, honest – and so much appreciated. …Absolutely empathise with them … and feel much for all.

    The ‘Spoons’ theory I have copied and pasted, for future reference – if needed to explain a few things in the future. Fortunately my family and friends understand when I simply ‘cannot do’ … and for that I am very thankful. … But occasionally there is angst among them … and I do believe they think I am malingering or just plain lazy. … That is absolutely not so. …. Extreme tiredness from sleep deprivation alone, makes one look and feel like sheer hell – when facing a new day. …. have found that gentle exercise while still in bed, helps a lot … just getting the muscles started ? … and gentle stretching when out of bed ( believe me, my dog taught me that – a dog never gets up from repose without stretching ) …

    I too have health issues – one of which is being epileptic, which can be triggered by worry, shock and stress ( and non-sleep, excitement, or very low energy state ). …. Stress seems to be a trigger for so many issues in health, as you have noted. … Have had my spine analysed / x-rayed / MRI’d as spondilytis, and arthritis … I don’t know if the doctors have ever decided which is prevalent, or if both are aligned to one another. … All I know is, that at times, it is extremely painful. … and when there is pain, there is no sleep. … I cannot sleep when in pain. Which becomes a catch 22, as that impacts on the next day – even perhaps to a resulting seizure ( although I thankfully have not had many in the past 5 years or so ). But one never knows when a seizure may occur, for whatever reason. …. as was my most recent tonic clonic episode ( Grand Mal ) … going backwards down the front steps. … Fortunately, my husband ( who is used to recognising the auras ) saw what was about to happen and managed to block my unconscious fall very quickly. [ he tells me it is ‘dead weight’ at the time, and difficult to maintain support of – understandably ].

    Decision ? – live with it, or collapse under all its implications. … And I do collapse ( not literally – but energy-wise ) at times. Having arthritis in many other joints does not help, and neither does an ankle now completely missing its major ligament, and as a result is twisted across to the front of my foot – which results in me walking | / – to maintain balance.

    Bah humbug to all that – I LIVE with it. …. Being somewhat bloody-minded a lot of the time ( people who know my posts here, will nod and perhaps laugh ) … I have found that getting out into the garden – at the seemingly WORST of possible times ( according to others ) …. e.g. when I have a cold, flu or bronchitis, or a heap of arthritic pain, does me the world of good. … It is my way of saying ‘stuff you – go to hell ‘ … and the contact with earth, plants, my beloved dog and my chickens, and the cosmos in general, does me the world of good. Well – at least I believe that.

    I take a variety of medications which I grizzled about, until I witnessed a while back, a very aged gentleman, lining up at the chemists’ counter for the most appalling array of meds. one could ever imagine. .. Literally dozens of boxes … I was horrified. … It put a few things, however, into perspective for me. … Why groan because I have to inject myself daily for a blood disorder ( yeah – just another thing ) … and remember to take 6 tabs a day ? when this poor guy was looking at a huge variety diet of chemicals 24/7. ?? …

    Am not wishing to be the guru here of positive thinking. … Just sharing ( as everyone has here ) some of my own probs. … and how I deal with them ( sometimes successfully, sometimes not ).

    And again, I have yacked on too much !!! 🙂

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