To Battle or Not! Living with a Chronic Illness.

I’ve been in ‘no man’s land’ for the past seven years. I have metamorphosed from an able bodied mother, teacher, friend, and pro-active female to an inept shadow of my former self. My journey into no-man’s land began so surreptitiously, I was not even aware that my life was about to spiral into the unrecognisable. At first it was put down to a virus I had contracted, but as the weeks progressed into months the medical profession started looking for a more sinister cause. I have had bipolar for the better part of my life, so naturally this was the initial diagnosis, and a change of med’s was the order of the day. Then blood test results started to come back, and my results all leaned toward an auto-immune disease. I had little idea of what this would mean long term, but when MS was mentioned, and I was told I would need to leave the tiny community I taught at in the idyllic Far North of Queensland, I knew that it was a matter for concern.

I have had ups and downs throughout my life, and overcome all that had been thrown into my path. I survived childhood abuse, an abusive marriage, the shame of raising children as a single parent, and the general hurdles that life throws at you from time to time. I have always been a ‘glass half full’ type person with my attitude to life but this new obstacle would test all my tenacity.

It has now been over six years since I have been without pain, and for over four of those years I didn’t know what was causing it. I think the hardest part of it all is the fact that what I have is not visible, so the automatic assumption is that I am just overweight, lazy, do not want to work, or simply putting it on because I want sympathy. Dealing with the medical profession is just as problematic as there is a clear division between those who believe my illness is real, and those who see it as a cop out.  Throughout the investigative phase I would certainly have seen suicide as a very real option if it was not for the unconditional support and love of my two children.  I endured a plethora of doctor’s appointments, medical tests, including X-Rays, MRIs, blood work, and of course visits to the psychologist (just in case I was imagining it all). As the tests all came back ‘normal’, I too began to feel that I was imagining it all, and my depression became far more entrenched, which in turn made my other symptoms far worse. In tears and totally frustrated with my inability to deal with anything, I explained to yet another doctor that there was nothing normal about this, and as a woman who had endured all that life had tossed at me, not having an answer for this constant pain, was not acceptable. This wonderful woman doctor then referred me to a specialist, a rheumatologist, who in turn ordered an assortment of tests. I was finally diagnosed with Fibromyalgia, and since I had never heard of it he explained that it was an autoimmune disease that whilst not life threatening, like MS, it was certainly life debilitating. There is no specific test for Fibromyalgia, and the rheumatologist had eliminated all else before he made this diagnosis. I was relieved to finally be able to identify my illness but it was not the solution to the problem I had hoped for.  

I have a chronic illness with no cure, which is challenging to treat, is very misconstrued, and as it is not visible to the general public, generally assigned to ‘me being too lazy, fat, or just not being bothered to do anything.’

There are too many people (medical profession included) that don’t understand what Fibromyalgia is, or don’t believe it exists, that it is all in your head. As with any illness there is a selection of celebrities whom voice how it effects them, and the general public make all the appropriate sympathetic platitudes, but this compassionate understanding does not extend to their neighbour, friend or work colleague.  So if you are one of these people, take a few moments to finish reading and I will share with you what it is like to live day in and day out with this invisible illness, for which there no cure.

Fibromyalgia is a chronic pain condition, and regrettably for me it means that I’m not going to ‘feel better any time soon’. I do not feel any one type of pain. Some days I feel throbbing pain throughout my entire body, sometimes I feel shooting pains in various parts of my body, and other times my body feels as if it is on fire. This pain radiates within my joints, muscles, and nerves. Doctors tell people with Fibromyalgia that these are ‘tender points’, which in simple English means the areas of the body that are the most sensitive and painful. The worst ones for me are my knees, back, elbows, neck and shoulder blades. Pain relief tablets have little to no impact on this pain.  I also have what are called ‘flare-ups’, and this refers to the periods of time when the pain is at its highest, and it is absolutely excruciating. During these phases literally everything hurts, even my skin, there is no relief, no way to stop the ache. Flare-ups can last for a day or several days, and are generally triggered by stress, overexertion, or hormonal changes. Whilst I am in this stage, suicide becomes a viable option, anything that will stop the hurt, and I am not a weak person. The flare-ups disappear as quickly as they come on, and I often find myself questioning if it is really just in my head. Then I have the days which are ‘tolerable’, and the pain is not as severe, I can go for a walk, do some shopping, wash my clothes (but have to remember not to do to much as I will end up in a ‘flare-up’ again), however the pain never goes away. 

As I stated earlier I have bi-polar, so I have always had fluctuations in my moods from extreme highs to depressive lows, but control over my moods has been balanced by medication. If that was not enough of a challenge within itself, the other symptoms of Fibromyalgia are fatigue, difficulty sleeping, anxiety and migraines, all of which I have to deal with as well. So I can manage some of my symptoms with medication, and when (on my ‘good’ days) I remember to not overexerting myself, I can give the impression of a ‘normal, healthy’ fifty year old woman, but this often compounds the problem, for during the other days, people judge me to be lazy, useless, uncaring, and overweight. 

Like any chronic condition, respective individual’s experiences will vary with pain levels, response to medication, preferred treatment, as well as the symptoms they experience.  As I have slowly adjusted to my condition I think the most difficult component separate to the actual medical impact has been the social perception. It is hard for people to accept as true that I am in chronic pain. I am 53 years old now and I ‘look okay’, but if I ask for a seat on public transport, I will get the ‘horrid stares’ and ‘hurtful retorts’ about losing weight. Friends stopping asking you out, and take it that you just do not want to socialise with them because you have not been able to get out of bed (much less the house) for the last couple of outings.  Not every debilitating condition calls for a cane, a wheelchair or is visible to the naked eye. As a society we are slowly accepting that millions of people suffer from depression, schizophrenia, bi-polar, OCD, (just to name a few), and anxiety. These are real illnesses, that as little as 15 years ago where viewed as ‘excuses’ for negative or anti-social behaviour, but as the medical profession discovers more of the way the human mind works, so too society is learning that not all conditions can be seen.  So I ask “just because you cannot see Fibromyalgia does this mean that it does not exist?”  

I am not working at the moment, not because I am lazy but rather due to the fact that I am a teacher, and I refuse to risk having a ‘bad’ day at school.  If you are doing the job properly, teaching is mentally stressful, which does impact on the frequency of my ‘flare-ups’. I worry on the days when the pain is so bad, and I know I can’t last the day, and I am left with no choice but to go home due to the level of pain, that I am being a negative role model for my students. This in turns leave me feeling guilty, which again, causes my condition to become more pronounced.  Generally, it is a struggle every single day to do the simplest of task, and is getting harder and harder as people make their views obvious.

Fibromyalgia has most undeniably twisted my life around. People my age get home from work, cook dinner, go out, run errands, do some cleaning, visit the children or grandchildren. I no longer have a life as I am in severe pain and my body simply does the ‘going out of business’ thing, without warning. I spend a large percentage of my life resting in bed, trying in vain to find a position that is comfortable. I often do not eat dinner because the pain and exhaustion have taken away my appetite.  Daily tasks such as shopping, cooking, or dishes, are difficult to manage. Taking a shower feels as if I have ran a marathon, and depletes me so much, that I have to sit down until I have regained enough energy to toss my nightie over my head. Regular household chores like laundry, sweeping, and making the bed are draining. Whilst I have never been a big fan of shopping, it is now a task I try to avoid at all costs. Cooking (once my too relax task) does not happen too much anymore and generally only because I have to eat. As for a social life, it is non-existent. I have family and friends but I don’t see any more as I feel that I am an embarrassment, or worse they think I am a hypochondriac. I no longer go out on special occasions.

I have gone from a person who embraced all life had to throw at me, and was always on the lookout for the next adventure. This is not how I envisioned my life, I’d much rather be having fun than be stuck in bed, interacting with people, rather than them glancing at me with cold disapproval, and doing what I once took as normal.

One should really have a support system when you live with chronic pain. I have a very small circle, but consider myself fortunate, as these are people that have been there though the very worst and best. My adult children (kids were still teenagers when I first got ill and have been there every step of the way to support me), who took the time to learn about my condition, and often will know when I am about to hit a down cycle before I do. My best mate has been very supportive as well, but that’s nothing new. She’s been there for me from the moment we meet at trade school and I really do not know what I would do without her humour and unconditional support. My kid sister as she can relate to me due to the fact that she has battle with cancer throughout her life, so it helps to talk to someone who truly understands. My support network is only ever as far away as a phone call, and for this I am so grateful.

Why have I decided to share my story? I love to write and have been working on a book about child rearing, but my pain has been such that I cannot focus at present. Answer to the problem is to write about what ails me. I hope that in sharing my story I will help raise awareness of this little known illness, and the major effect it has on one’s life. I hope that those who present with Fibro will be believed by their family, friends, associates and the medical profession. It is only with education, research and those of us who have this syndrome sharing our story, will we gain the acceptance now afforded depression, OCD etc. This was not easy to write as I have unlocked parts of my life that most people keep behind closed doors, but if my life has only taught me one thing, it is that keeping things hidden does not solve the problems, it makes them worse and by bringing matters into the light, we can work toward a solution.