Sunday, 26 August 2012

RUOK Day 2012: Chronic Illness.

RUOK? day is coming up on the 13th September here in Australia and it's time to get involved. This brilliant initiative began in 2009 and has grown every year since. As the site explains:

"R U OK?Day is a national day of action dedicated to inspiring all Australians to ask family, friends and colleagues, ‘Are you ok?’ By regularly reaching out to one another and having open and honest conversations, we can all help build a more connected community and reduce our country’s high suicide rate."

"Connection and open, honest conversations are good for our wellbeing – whether or not we’re struggling with a problem. It helps us to feel valued and supported by the people around us. There's also an emerging body of research which links supportive social relationships and a sense of social connection with protective factors in suicide prevention."

As I wrote recently (here) the incidence of mental health issues such as depression or anxiety, are very high amongst those who live with chronic illness. As a group those with chronic illness are faced with illnesses and disability that are measured in years or, in some cases, life times. The physical toll is often high, but it is the mental and emotional toll, which often goes unknown by all but the sufferer, which frequently creates the greatest burden. It is important that we start the conversation about the mental health burden of chronic illness, particularly when unlike many of the chronic physical conditions, it can be addressed successfully with appropriate support.

The issue is complex. Stress is often multi-factoral and many are reluctant to discuss their difficulties for fear of being perceived as weak or the stigma associated with mental health issues. Dysautonomia is an umbrella term for a complex series of disorders that arise from the malfunction of the autonomic nervous system. Some forms are rare, but even amongst the more common forms, they are rarely discussed and not easily identified. Patients often experience long and stressful journeys to diagnosis. Even once diagnosed, the complexities of the disorders and lack of information and treatment pathways lead to ongoing high levels of stress. Add to that the severity of sometimes disabling long term symptoms experienced by many and it is not surprising to find that if actually asked, many patients will respond that they may be functioning but they are not necessarily OK.

Those with chronic illnesses that are rare or poorly understood such as the Dysautonomias, often face a long and soul crushing journey to diagnosis. With symptoms that are frequently vague or fluctuating, patients are told "it's all in your head", "you just need to get out more", "you're depressed". Many are faced with insinuation or outright accusations of malingering or lying. The story is repeated again and again on forums around the world. Even long after diagnosis these words continue to haunt patients who continue to hide their stress levels for fear of reignitig old accusations.

Being a chronic illness many find that their friendships and social relationships fall away over time. Friends who initially came around with a casserole or offered to take a child to school, call around with ever decreasing frequency or, simply disappear. Social isolation is a huge issues for many. Especially those patients in isolated or rural areas, or those in countries where little is known of the disorder. Even in larger cities and centres where there are more patients, it can be difficult to organise face-to-face meet ups with patients who are fatigued, have mobility issues and, thanks to the quirks of the disorder, may have to cancel engagements at the last minute. Whilst fellow patients may understand this, often friends and family do not and social invitations slowly evaporate. In my own case, many friends I thought would always stay by my side disappeared as my ill health increased. My circle of friends decreased over time until now I can count them on one hand. Although I would say chronic illness does aid in rapidly sorting the wheat from the chafe and whilst I may not have the same quantity of friendships the quality is far better. (online friendships have been a saviour, but that is another post).

Intimate relationships change. Husband and wife, becomes carer and patient. Trying to maintain a marriage in these circumstances can be very difficult without dedication. Often outside guidance and counselling is required to traverse the new and changing relationships. Marriage breakdown is common and even dating is often difficult. The strain of constant illness, inability or infrequency of intimacy, financial concerns, difficulty in maintaining roles such as house keeper, parent or cook can all mount to create problems in relationships. Additional difficulties can arise when a partner requires aid with personal care needs such as showering and toileting. Where does the role of husband stop and carer begin? Navigating these changes can be very difficult for couples many of who attempt to do this in private for fear of embarrassment or feeling like a failure. 

Parent/child relationships also change. Adult children may be forced to move in with aging parents. Conversely, young children can become carers for their adult parents. Parenting with chronic illness is difficult. Being able to care for small children when you can barely stand or are worried about passing out can be both heartbreaking and dangerous. Guilt is common. Even when the children enter the teenage years they may be forced to care for sick parents or are unable to socialise with friends and relationships can become strained. 

Many teenagers with Dysautonomia are unable to go to school or participate in regular teenage pursuits such as parties or sports. They are reliant upon parents at a time when they are normally asserting their independence. Again conflict can arise and strain exists for both patient and carer.

Work commitments are often challenged and unemployment is not uncommon for many patients. This creates not only a financial burden to families, but also a loss of identity. The first question asked at social functions is often "what do you do?" For someone recently unemployed this can be difficult to deal with and often those asking the questions are stumped as to what to ask next. For many, a career equals identity. We understand when someone says they are a doctor or teacher. There is a whole social schema that goes with each label. For many, myself included work was a joy. After years of study and working hard I had a job that I enjoyed and felt was making a difference in the lives of others. To give that up after a year of battling increasing Dysautonomia symptoms felt like the ultimate surrender. I felt like a failure. Added to that was the guilt of the financial burden I was placing upon my husband which was and continues to be high. 

Independence is often the first casualty of chronic illness. Simply being able to do the grocery shopping by yourself can be difficult. Many patients who experience frequent syncope are no longer allowed to drive which leaves them reliant on others for transportation. Being able to garden or go to the movies can be a Herculean task. A patients' identity can often seem lost with each small piece of independence that disappears. Spontaneity is no longer possible. A friend calling over for a quick, unexpected coffee can be overwhelming. Patients need to prepare for outings and entertaining through rest, medications, extra fluids and salt, after which they still may be unable to participate thanks to the unpredictable nature of the disorder. It is the normal social situations that others take for granted, particularly the small things such as going to a cafe, that are frequently reported as most missed by patients. And the inability to do such simple things often serves to highlight what they have lost.

Cognitive problems are also common in Dysautonomia thanks to poor cerebral perfusion, fatigue and medication issues. Patients are embarrassed by lapses in memory, inability to complete simple tasks, read a book or follow a conversation. For many, on a bad day, speech is impaired both cognitively and mechanically. Many withdraw from social interaction as they are either self-conscious or simply unable to take in all the competing information.

All of these issues are on top of the physical symptoms of the disorder with which patients contend with 24/7 (tachycardia, bradycardia, hypertension, hypotension, syncope, pre-syncope, weakness, fatigue, poor thermoregulatory control, gastrointestinal symptoms, urinary frequency, seizures, to name but a few). Whilst the physiological symptoms of Dysautonomia can be difficult to live with, it is the impact that they have on daily life, the social, psychological and emotional issues that many patients find the most challenging. 

The support for those suffering chronic illness is greatly lacking. Care fatigue ensues amongst friends and family as time passes and a patient either doesn't get better or, gets worse. Chronic illness doesn't fit into the normal sick paradigm associated with acute illness. There is no easily identifiable illness or injury, no clear and distinct treatment path and frequently no identifiable resolution after which the patient can resume their regular role in society. This leaves chronic illness patients vulnerable both medically and more importantly psychologically.

People stop asking if you're okay. As one of my readers wrote, "when I asked her why she didn't call to ask how I was, she responded "it's just your normal. I thought you were used to it"". Chronic illness patients are frequently forgotten until a crisis occurs. We develop means of coping, putting one foot in front of another, because there is no choice. There is no resolution as the disorder is chronic, you must learn a way to cope. Patients may smile and laugh , because they have learnt to find humour in the small things, but that doesn't mean everything is okay. It doesn't mean they are okay. It doesn't mean they are coping. Many are barely holding it together. Being strong for years on end is difficult. Sometimes we all need to be asked "R U OK?" 

Please take the time to ask the people in your lives R U OK? If you have someone in your life living with a chronic disabling illness like Dysautonomia take the time to truly ask "R U OK?" It wont take long and they will appreciate that you care. You don't have to solve their problems, just listen and be there. Start the conversation. 

If you are unsure how to ask someone, R U OK? Day has some fantastic resources available. 

Importantly, if you're the one who isn't OK, but you're not sure how to tell someone or ask for help, they have information and resources here

You don't have to be in Australia to participate. Nor do you have to stick to one day a year. You can ask "R U OK?" anywhere, and any time. Start the conversation and change a life.

Cheers Michelle :)


If you like, feel free to share.

Saturday, 25 August 2012

Some days you can either cry into your pillow, or you can be Batman.

Okay so maybe I'm not coping so well with all these health shenanigans. I'm a week out of hospital now and still a mess.

Those who followed on FB will know my week of hospital testing was not the smoothest of runs. Rather than bore you with it all, here's a quick synopsis.

  • I left 3kgs lighter thanks to food services who couldn't cope with my dietary intolerance and allergy issues. Fasting each day for a repeatedly cancelled MRI didn't help matters along either.
  • When I finally went for my MRI I discovered that medazelam doesn't work on me. Survived thanks to many tears and "So Humming" the hell out of my meditation techniques. 
  • A post-op heart attack scare which led to an unplanned night with my roomie Lois, who thought an Islander christening was going on behind the curtain next to her bed. All. Night. Long. 
  • Another discovery that despite a bright red hospital wristband and personally speaking to the neurosurgeon, anaesthetist and head nurse during pre-op, you still wake up covered in bright red welts from the adhesives you told them you were allergic to, but they used anyway. 
  • And then there's that bucket load of pain thanks to three large incisions in my leg and belly.

Now one week later I am stuck in bed with an infected ankle (sural nerve biopsy) incision, widespread numbness (expected) and spots of near permanent electric shocks (not so expected, or fun). My thigh (open muscle biopsy) still black, with new and exciting levels of bruising coming out. tearing of the wound when I move, plus electric shocks radiating from the site (again, this does not fall high on the fun metre). And a stomach (fat biopsy) incision that, like the other two, refuses to heal.

To add insult to injury I missed my son's 18th birthday dinner last night so now I feel like a super shit mum to boot. A tear or two may have been shed into my pillow last night.

Of course I am dealing with all this in the most mature way.

Conversation with youngest son today:

Me: I'm staying in the Batcave today, Bud.
Son: Why don't you put on [other son's] Batman costume and we can take pictures?
Me: Why not?

And the result?


Some days you can either cry into your pillow, or you can be Batman.

Today, "I'm Batman".

Cheers
Michelle :)

PS I'd like to say it's Alfred's day off, but really my bedroom hasn't been cleaned in a long time.
PPS I have discovered that having a bedroom where every wall, ceiling, carpet and fixtures are 80's salmon pink is not really conducive to healing or sanity. If I go postal or start writing REDRUM all over the blog, blame the salmon colour scheme. The 80's really do have a lot to answer for.

Monday, 20 August 2012

Dysautonomia and Psychology: Can they coexist?

(Leunig)

Just about every Dysautonomia patient with whom I've spoken over the last few years has, at one time or another, been told that the symptoms they were experiencing were all in their head. Diagnoses such as Anxiety disorders, Depression, Conversion or Somatoform disorders, and even Bipolar disorder are haphazardly applied to patients when no clear aetiology can be discovered to explain their symptoms. Normal reactions to abnormal situations, and purely medical/physiological symptoms are over-pathologised or misdiagnosed with alarming regularity, and to the detriment of the patient.

When unfounded these diagnoses leave a mark on the patient, a wound which if left untended will follow and influence all future relationships with the medical professionals. It also leaves a glaring mark on medical records that will be incorporated into future investigations and the overall diagnostic process. Even when unsubstantiated or proven to be untrue following psychological assessment, it can prove extremely difficult to remove such diagnoses from a patient's medical file.

Comorbidity

This is not to say that Dysautonomia patients cannot experience comorbid psychiatric (or medical) conditions. To think otherwise does a disservice to patients. Just as a person can have both Bipolar disorder and Asthma, or Diabetes and heart disease, so patients can have Dysautonomia and Clinical Depression, they are not mutually exclusive. To ignore genuine psychiatric conditions or stressors is to deny patients effective treatment that may alleviate some of their symptoms, something known in medicine as excess disability.

This in no way suggests that Dysautonomia is a psychiatric diagnosis or that it has a psychiatric component. In fact recent evidence suggests that patients with Postural Orthostatic Tachycardia Syndrome (POTS; the most common form of Dysautonomia) experience levels of anxiety comparable [1] or less than [2] the general population when ANS symptoms are correctly accounted for. However, given the high rates of Anxiety disorders (in any one year 2,000,000 Australians will experience an anxiety disorder [3]) and Depression (in any one year 1,000,000Australians will experience depression [3]) in the general community it would be equally inappropriate for clinicians and patients alike, to ignore their symptoms, or instantly attribute them to Dysautonomia (comparable figures are available for most Western countries). Studies also suggest a strong link between emotional stress and chronic physical illness (asthma, cancer, heart disease etc as high as 28% [3]) due to the emotional, psychological and social difficulties patients with these conditions face.

Stigma

There is a still significant stigma with the wider community associated with mental health issues. Adding to this, many patients have had their physical symptoms dismissed as purely psychological by medical professions unfamiliar with Dysautonomia. It is not then surprising when patients are reluctant to seek help or even mention any symptoms that may be interpreted as psychological in nature. This creates a potentially detrimental environment for patients whereby they may be living with high levels of excess disability, not related to their physical symptoms, which may be relieved or at least partially ameliorated with appropriate medications and therapies.

Psychiatric Diagnosis vs Normal Behaviour in an Abnormal Situation

One of the main reasons Dysautonomia symptoms may be dismissed as psychiatric in origin is that many medical professions are unfamiliar with the differentiation between reactive depression and anxiety and Clinical Depression and Anxiety disorders. It is only normal for a patient with a misunderstood chronic illness to feel depressed at times. These diagnoses are life changing. People lose their identity and sense of self. Relationships change or end, careers end, independence is lost, it can be overwhelming at times and patients frequently enter into a specific, and often repetitive, grieving process. Similarly, anxiety symptoms are to be expected in a disorder marked by unpredictability and fluctuating symptoms. Patients are left wondering when the next faint will come? Will they be able to go to the shops alone? Will they make it through a school concert? Or be able to attend a party without throwing up? These emotions and thoughts are an understandable and normal reaction to a confronting and uncertain situation.

There are specific criteria that need to be met before a clinical diagnosis of either an Anxiety disorder eg, Panic Disorder, Generalised Anxiety Disorder (GAD), Post Traumatic Stress Disorder (PTSD) are met. Similarly, Clinical Depression has specific markers which are required for diagnosis. These diagnoses cannot be made in a 10 minute ER consultation, nor are these diagnoses the province of Neurology or Cardiology. These diagnoses require lengthy assessment and review, including the ruling out of medical conditions that can cause these symptoms. Just as you would not seek out a cardiologist to diagnose Parkinson's disease, conversely you would not expect them to diagnose a patient with Clinical Depression. This is not to suggest that these specialities are lacking or incompetent, it is simply the fact that they have a very different area of expertise. If a specialist suspects a psychiatric component is at play they must refer to an appropriate specialist ie a Psychologist or Psychiatrist. As much as many patients feel slighted when such a refer is made, it is, in fact, a sign of a good practitioner. Dysautonomia should be treated from a holistic position and referrals then made to any specialist area that may be contributing to a patient's presentation, either to confirm or rule out that factor.

Confusion can also occur given that traditional psychiatric drugs such as Selective Serotonin Reuptake Inhibitors (SSRIs) have proven useful in the treatment of certain Dysautonomia symptoms. Knowledge that a drug such as Clonidine which is used in the treatment of Panic Disorder, is also highly useful in the treatment of the high blood pressure associated with Hyperadrenergic POTS, is vital for medical and lay people alike, to disspell myths about psychiatric aetiology.

Although there are some medical professionals eager to suspect psychological aetiologies, especially in female patients, many are simply baffled by a patients presentation which fails to meet normal disease parameters. Patients often present with a myriad of vague symptoms and standard medical testing often returns normal results. It behoves practitioners to look beyond the standard testing, when these patients present, and attempt to rule out less common disorders. The medical philosophy of "when you hear hoof beats suspect horses, not zebras", is one that perpetuates illness and increases diagnostic timelines. The reality is that many patients are zebras and it is only through a dedicated effort that many will be diagnosed. It is often only through strong self-advocacy that patients eventually find a diagnosis. Sadly, for many, the effort and support required to successfully self-advocate is not present and for these patients a diagnosis of Depression or an Anxiety disorder may persist and appropriate treatment will remain elusive.

Role of Psychology

A Psychiatrist or Psychologist undertakes lengthy training to differentiate psychological from physical symptomatology, and how the two can interact to create a presentation. What may seem abnormal behaviour to one doctor, may in fact be normal and understandable when accurate psychological assessment is undertaken by an appropriately trained professional.

A Psychologist or Psychiatrist cannot cure Dysautonomia, but they can help a patient navigate the difficult emotional, psychological and social changes that occur as a normal part of living with a chronic illness. Just as we need to take care of our physical health and use a variety of strategies, eg medication, exercise, diet, lifestyle modification, we also need to take care of our mental health to help in dealing with personal issues as they arise. Patients are faced with changes and challenges everyday. Self-image and self-esteem are challenged regularly. Without guidance and support this can be overwhelming. Having a trained professional to discuss these issues in confidence is vital for many. To know that thoughts and emotions are a normal reaction to an abnormal situation or to give a reality check when a patient is catastrophising is essential. Treating the whole patient means teaching ways to deal with stress, personal relations, disappointment and fear, particularly when the medical condition that is creating these issues is not going to disappear, and may be around for many years, or even permanently. Sometimes just to have an independent sounding board to discuss these issues can provide patients with a much needed relief. To seek this help is not a sign of weakness and it does not negate the central physiological component of the presentation. It is simply patients arming themselves with yet another tool to deal with a life changing and complex illness.

Finding the Right Psychologist

For some patients their experience with a psychologist or therapist in the past has been unhelpful or even, for some, negative and they are reluctant to seek another. The reality is that like every profession there are practitioners with different skill levels. Depending on which area they have specialised in, some psychologists may never have dealt with patients experiencing chronic illness. Psychologists with experience in rehabilitation, pain management, health psychology and chronic conditions will be most experienced in dealing with the issues that arise from chronic illness and the life issues patients face. Specific knowledge of Dysautonomia is not necessary to the process, and most therapists will research their patients conditions to better understand what they are facing. Most Western countries have a professional registration body for psychologists. Patients can contact these boards to find an psychologist with the appropriate training for their condition, in their location and in some cases, who provide free or subsidised psychological services.

Patients should not be afraid to ask a psychologist about their training and experience. They are required to be open regarding their professional credentials, experience and the techniques they use. Similarly, it is appropriate and okay, to tell your psychologist when the experience is not working. In some cases, with an honest discussion, issues can be worked through, and sometimes you simply have to end the relationship and find another therapist. Rapport is vital and without this, a therapeutic relationship may be impossible. It is simply a fact of life that we will not always 'click' with certain people. Whilst that may not be as important with your surgeon, whose surgical skills are of primary importance, with psychologist/patient relationships trust and rapport are vital. This cannot always be accomplished for many reasons on both sides of the couch. But when trust and rapport come together the therapeutic relationship can be very successful and provide great help to patients living with a significant amount of stress day-to-day.

Where to from here?

The reality is that the ANS is highly susceptible to stress. Many symptoms of Dysautonomia are the same as those involved in diagnoses such as GAD, and stress and anxiety can make Dysautonomia symptoms worse. It is therefore highly important to pull apart these symptoms and discern which are related to Dysautonomia, which to psychological factors, and which are intertwined. Just as in the general community, not all patients will experience psychological stress or have symptoms that reach a clinical level. However for those that do, it is important that they are supported to get the help they need rather than be too embarrassed or fearful to seek treatment. Teaching patients to identify the difference and treat each appropriately eg a beta blocker for tachycardia and breathing exercises for stress relief, is vital. It is important to understand that psychiatric illness can occur comorbidly with Dysautonomia. That to ignore this factor may, for some patients, deny them vital treatment. Psychological therapies can be useful to help patients cope with the ups and downs of life with chronic illness. Education is key, for both medical professionals and patients alike. The need to increase knowledge in general medicine of the role of the ANS in physical and psychological illness, how they differ and how they can interact is vital to better and appropriate patient experiences. As is the ability to differentiate between normal emotional reactions to the stress of illness and when these cross over to psychiatric conditions requiring specialist diagnosis and care.

To deny that some Dysautonomia patients may have a comorbid psychiatric illness or significant stress is just as damaging as attributing, and sometimes dismissing, all symptoms to a psychiatric aetiology. Somehow both patients and medical professionals need to find a middle ground and only through continuing education and continuing liaison can we do this. Both groups have responsibility to change this situation.

Medical Professionals:

  • understand the difference between normal emotions and behaviours and clinical psychiatric diagnoses. Refer to the appropriate specialist as necessary.
  • understand the damage that can be caused by flippant or unsupported psychiatric diagnoses.
  • understanding that it is possible to report on a patients mood and affect without the leap to a psychiatric diagnosis.
  • understand that many of their patients will come with these negative experiences and they will colour and influence their interactions.
  • understand that psychology can be an important tool to aid their patients in coping with a difficult chronic illness, not just for diagnostic purposes.
  • understand that Dysautonomia in all it's forms is not a psychiatric diagnosis and is a recognised measurable physiological dysfunction, due to multiple, complex aetiologies.
Patients:
  • understand that the majority of medical professionals care and want the best for their patients.
  • understand that most do not receive a comprehensive education on the ANS.
  • understand that sometimes we as patients need to educate our doctors.
  • understand that many medical professionals do not understand the diagnostic criteria required for psychiatric diagnoses.
  • understand that it's okay to ask for a second opinion or further testing. Especially if you are not improving or not happy with your diagnosis.
  • understand that we too come to these interactions coloured by our previous and often negative experience. At times there may be a clear disconnect between the doctors intentions and our perceptions. 
  • always try to come to a new appointment with a fresh mind. Sometimes we can be pleasantly surprised.
  • understand that psychology can be a useful tool in coping with stress of living with chronic illness. 
Essentially, it is a two-way street that we all must learn to navigate. Education, patience and sometimes a thick skin are essential.

Conclusion.

Dysautonomia is not a psychological illness. This is now supported by numerous studies which demonstrate no link between Dysautonomia and diagnoses such as anxiety and depression. Psychology and psychiatry can play an important part in the diagnosis and treatment of Dysautonomia. They can be used to exclude psychiatric diagnoses during initial hypothesis/diagnostic testing process. Similarly, they can be part of the holistic treatment process, be it to treat comorbid psychiatric conditions or teaching patients the tools to deal with the emotional, psychological and social consequences of living with an unpredictable and often confusing chronic illness. The identification, treatment and resolution of as much excess disability as possible is vital to effective treatment of any chronic illness. This in no way suggests that Dysautonomia is a psychological illness, although the experience of living with such an illness can create understandable substantial life stress. We need to see beyond the stigma and misunderstanding and view psychology as a possible useful treatment for some patients. Just like the shower chair can keep you upright in the shower, a psychologist may help you stay upright and moving through the challenges chronic illness creates each day.


*My own story. Pre-sick I was working as a Neuropsychologist in geriatric and neurological rehabilitation. I was told that my symptoms were "all in my head" by a General Physician early in 2007. Following tears and anger I was spurred to pursue an accurate diagnosis which I finally received in mid 2007. My deteriorating health forced to leave work in 2008 at which time I began counselling with a fantastic local clinician to work through the personal issues that arose at this time. I continued this counselling for a year. When my cardiologist initially suggested counselling I was insulted and embarrassed, especially being in the field. However, for me it was fantastic and I attribute a lot of my ability to deal with my current health status to this experience. 

Psychology is not for every patient, but as with all treatment plans, treatment should be individualised to patient needs. However, if significant life stress or comorbid psychiatric issues are present, psychology may be an important adjunct to overall treatment.

Michelle

Links:
Australian Psychological Society
American Psychological Society
Canadian Psychological Society
British Psychological Society

STARS UK has a great piece on Cognitive Behavioural Therapy (CBT) and Reflex Syncope,which can be found here. If you're not familiar with their site, I highly recommend them as a source of information and support for patients with a wide range of Dysautonomias.

[1] Wagner C, Isenmann S, Ringendahl H, Haensch, CA. Anxiety in Patients with Postural Orthostatic Tachycardia Syndrome (POTS). 2012 Aug: 80(8): 458-62


[2] Raj V, Haman K, Raj S, et al. Psychiatric profile and attention deficits in the postural tachycardia syndrome. Clin Auton Res. 2004;14:309.


[3] beyondblue.org.au

Sunday, 19 August 2012

Lodestar

Just a quick post to say I'm home from hospital finally. It's been a long week and whilst I'll blog a bit more about it all, suffice to say for now, I'm beyond exhausted and in a fair bit of pain. Hopefully it'll slowly blow over but till them a huge thanks to everyone for their well wishes, prayers, finger crossing and the works. It definitely helps to know that there are so many wonderful and caring people supporting me through it all. The beauty of social media that means there is a support network at your finger tips to commiserate, bump you up or make you laugh when you need it most, cannot be underestimated. So I'll be keeping an eye on my own little lodestar, whilst I try to get on board with this whole recovery process.

Till then, may you all have a symptom minimal day filled with love and laughter.
Michelle xx

And just because it made my geekness smile I leave you with this (Thanks Claire :) ).

Saturday, 11 August 2012

"What doesn't kill you, makes you stronger" and other BS sayings.


When I first became ill my doctors tried to comfort me/fob me off/make me feel whingy, with the "it wont kill you" line. And so far they are correct. I'm still not pushing up daisies, although some days I do feel like I should. I may look like death. I may even feel like a warmed up version of death on what is now a fairly regular basis. But I'm still here, kicking on, or crawling on, or lying elegantly on my bathroom tiles still breathing if not moving. Whatever the truth may be.

I realised today that unlike the ridiculous saying in the title of this post, I don't always feel stronger for all this crap. By rights I should be the Arnie of the illness world by this stage. But apart from a really bad attempt at "I'll be back", I am feeling a little on the lacklustre side of the ledger.

Monday I go into hospital for the week to try once and for all to sort out what the hell is wrong with this old body of mine. It's going to be a hell of a week. I made the mistake of reading over the neuro registrar's letter that lists all the things I need to be tested for and all the painful ways they are going to do just that. And frankly a little piece of my mind whimpered a pathetic "mummy", whilst it rocked in the corner.

I've known for a while that something less savoury is going on with my body. But compartmentalisation and denial have been wonderful bedfellows and I've been reluctant to kick them out. Now I am faced with having to take it all seriously. By the end of next week I could have an answer. Or not. I don't know which is worse. If I get an answer it means something rather nasty is happening to my body. Something that may or mostly likely, may not have a solution. Or even better may have a solution that I am no longer well enough to attempt. Both my neuro and the neuro registrar were very clear on that, again and again. No room for false hopes.

Or I can be poked and prodded, scanned and zapped, for a week and come out none the wiser. Stuck in the holding pattern yet again, with only a few extra nifty scars to show for my efforts. Which is worse? Knowledge or no knowledge? I'm not sure at this point. Though it would be nice to have a proper name for this damn shadow that follows me everywhere. It'd be nice to know what I'm up for, even if it's not that great. It'd be nice to have certainty once more, because I sure as hell have missed that over the last six years.

Because despite all the assurances that "it wont kill me" or I'll get some fricken' life changing epiphany from the last six years of my life, it doesn't make it any easier. I'm tried of being sick 24/7. I'm not all smiley, perky, moonbeams and sunshine. I'm not the brave sickie valiantly fighting the good fight and worthy of a Hallmark movie of the week. I'm just me, and I'm tired. I'm bitter, and I'm pissy. I want to say a big FU to the universe. Just for once I want an answer. Just for once I'd like to get it without pain and fear. Just for once I'd like to feel well. Because I really don't know what that is any more.

I don't want empty platitudes. I don't want someone to tell me it'll all be okay. Because it may not. Because that's not reality. Because none of those sayings mean a thing when I can't stand or stop the pain shooting down my legs, or am throwing up in yet another public loo. I want someone somewhere just to say "I hear you". To acknowledge that yes, this is shit. That no one should have to deal with this. And that it's okay to say just that.

I know people don't know what to say. That they mean well. But every time someone trots out those perky sayings, they might as well just tie a gag around my mouth. Because each one tells me to be silent. To not raise my voice. To stuff down my feelings. To not rock the boat. And most importantly, don't make others uncomfortable by my suffering.

I have fears. They whisper in my ear at night. Fear that I'll get an answer. Fear that I wont. Fear that the damn tests themselves could leave me with further pain. Fear that if I share these fears that I make them real. Fears that live alongside all my positive affirmations and distraction techniques. Fears that still exist even when I laugh and act the fool. Because that's reality. Because not sharing them, or pretending they don't exist, doesn't make them disappear.

So my emerald suitcase lies open and empty on the bed. And today I just want to crawl inside, zip it shut and hide from the world. Because I don't want to be strong today. Because this sucks. Because it scares those who love me, just as much as it scares me. Because I can't give them those empty platitudes. Because I wont lie to them. Because they deserve the truth. And if that truth is unsavoury and unpalatable, so be it. We will deal with it because there is no other choice.

We tell lies when we are afraid....Afraid of what we don't know, afraid of what others will think, afraid of what will be found out about us. But every time we tell a lie, the thing that we fear grows stronger.
Tad Williams, Storm (1993)

So I'll share my truth. I'll shout it from the roof tops. It'll be battered and bruised. It'll burn the eyes and hurt the ears. It'll make many uncomfortable. But I wont be placated. I wont hide. And maybe, just maybe, those fears will grow weaker.

Michelle

Tuesday, 7 August 2012

The View From my Couch: Winter Sun.


So tired at the moment. Fatigue has come to bite me big time. Thinking, standing, breathing is all so effortful. The idea of washing my hair or even simply holding a conversation is overwhelming. I guess that's what happens when you heart decides to slow down to the 40s. It seems that puts a bit of a cramp in my style. A heart that goes blah......blah......blah is not all that useful on the energy front.

But today was a lovely Winter's day here in Melbourne. Little spots of sunlight falling through the thick tree canopy in our yard. When it's been so dark and dreary those little spots of light are truly beautiful. The season is changing and slowly the plants are awakening. Little blooms sprinkled all around the yard. I don't even know what these are called, but the little bonnets glow when the small shafts of sunlight fall on them. The smell of the Daphne is everywhere on the breeze at the moment making everything just a little easier.

I've always been drawn to forests and the earth. Maybe it's a Taurean thing, but they have always been my place of peace. Even when I meditate I visualise being in a forest. Lying on the ground looking up at the dappled sunlight trickling through the trees above. The smell of the earth and growing things filling my lungs. And so it is with where I live. On the edge of a temperate rainforest, complete with loamy earth and a multitude of ferns and mountain ash. An explosion of vibrant green and birdsong. Life and peace all rolled into one.

Tired or not, sitting in my backyard listening to the magpies warble and seeing those little spots of light and colour revives the spirit. I need to make an effort to sit outside more often. Just to sit in silence and soak in the life force that is beginning to hum in our garden once more. It may not soothe my body but it certainly soothes my soul.

Simple pleasures are desperately needed when life is so complex and overwhelming.

Michelle :)

Thursday, 2 August 2012

And the Winners Are........

Ah giveaways, they do give me much pleasure. And paper cuts.
Sadly, I could not find my bag of feathers to make the entries. And really you just can't have a giveaway without feathers. Or dogs.
So of course I made Thor wear my pink feather boa whilst he selected the winners. And he was stoked.
He did enjoy rubbing his face on the entries in a weirdly overly enthusiastic way that left us all a little uncomfortable.
But eventually started picking winners despite his feathery embarressment.
 Though he was unaware he was also wearing the entries for a while there. He's not overly sharp.
 So I stupidly decided to get Freyja involved. Unfortunately, she is the energiser bunny of dogs.
 And lost the plot thanks to the excitement of falling entries.
 And decided that manic was order of the day.
Leaving me covered in these. 
 But she did manage to choose some winners.

And without further ado. And because I now need a nanna nap to recover. The Winners.

The winner of Prize 1: The MOR Cosmetics gift pack is....
Kelley@magnetoboltoo, congrats Kelley!!!!

The winner of Prize 2: Ode to Dysautonomia which had the gorgeous accessories and oils is...
 Hope Filled Living. Congrats!!!!!

The winner of Prize 3: the lovely photographic prints by Kyli Wolfson is....
 Cyndi Ogden. Congratulations Cyndi!!!!!

The winners of Prize 4: One of 5, 2 packs of Lindt Excellence A Touch of Seat Salt, are...
Kathleen Eakins!!!!
 Kim@Frogpondsrock!!!!
 RudeKitiKatt!!!!
 Katrina Horsfall!!!
 Coppelia!!!!

YAY. Congratulations to all the winners. Send your address to rustyhoe@livingwithbob.com and I'll post out your winnings as soon as possible so you can pamper up!

Thanks to everyone who entered. Thanks also to the generous sponsors of the giveaway who made this all possible. MOR Cosmetics, Lindt Australia, Claire Barnier, Tennille Pooley, Vickie Isaacs, and Kyli Wolfson.

Don't forget to check out all the fabulous pampering ideas over here.

And mostly I just want to say a huge thank you to everyone who has supported me and my ramblings over the past three years despite consistently poor grammatical skills, an inability to use 'to' 'too' and 'two' appropriately, and frequent use of inappropriate humour. It's a rough road at times but your support has meant the world.

Cheers
Michelle :)
And just because it's so appropriate in so many ways. Hot Chocolate's, Everyone's a Winner (1978)