The Big Bad Dragon
Michael, October 2016
The biggest reason for hope is being aware.
I am angry because I had to push so hard on my own in order to get to a reasonable life again. I could not have done it without my wife. It took almost three years. Within three months of coming down with the cutting, scratching and depressing dragon of full body rheumatoid disease, my life upside down, a very clever specialist had identified the best chemical treatment, squashed and juiced Chinese hamster ovaries. The cost was huge and it took another eighteen months before we were in a position to get on the biological bandwagon. An absolute saviour as I can't walk or hold a heavy book without the little hamster goodies coursing through my veins, topped up each month, now with the synthetic Actemra. Two other biological wonder drugs failed or perhaps to be fair, my system rebelled, so progress was rather slow.
When you have rheumatoid disease badly (Rheumatoid Factor 1857, CRP 49.8, ANA 160 and CCP 600) life can be pretty grim. Pills and needles, some work while others cause both physical and psychological problems. Fainting in the street, Prednisolone side effects, fevers and rashes, constant runs, weight loss, taste loss, severe chest pain just to main a few. Gnawing, twisting insidious pain crept in to every hour of every day. Just pulling the bed sheet up would cause me to cry in pain. One of my clinicians really did not understand things in the early days. I had been asking for strong pain relief for some time without success. It wasn't until a neighbour literally carried me in to the clinic in awful pain that he finally understood and action taken. It should never have got to this stage. Sending me home with my new status, VSP -very sick patient, unsupported. I don't want to pay him for the consultation alone, I want to pay him for effectively managing my chronic condition. The episodic provision of care is really inappropriate for someone like me. The health system treated me as an event.
Pain brings on a loss of sleep. Just turning over in bed would make me cry out. A lack of sleep in a haze of pain brought on the quiet, dangerous darkness of depression. You can't see the black dog at first but it sneaks up, licking your toes until all you want to do is to end it. This pain-sleep-depression triangle is deadly and the only way out is to address the pain. Morphine based drugs for over a year saved me until we could get this terrible disease under some form of control, to tie down the dragon. This is what I wrote to my specialist in January of 2013:
When I survey the desolate landscape of the past ten months, the shadow devils and the burnt remains of what was, I am amazed at the journey. Being unwell with rheumatoid arthritis is not a condition I would wish upon my worst enemy. I had absolutely no idea what was in store for me from that Christmas Eve in 2010. The next morning heralded a painful struggle and complex drug chemistry which has now only just started to retreat.
I wanted to thank you sincerely for your professional attention, your kindness and your support. I simply could not have walked this dark corridor without your involvement. Your gentle understated manner and unwillingness to define the near future yet remain positive has, without doubt, assisted in reaching this stage of unilateral improvement brought about by the Biologic drugs.
The link between pain, lack of sleep and depression is a triangulation I did not understand until March and for that I thank, my GP. The crawling, twisting tension of insidious continuous pain was until last Christmas morning beyond my understanding and experience. The creeping dragon fire can and has led to very dark days and nights. Understanding this now has curiously forged a bond with other RA sufferers. I have discovered an emerging mafia of fellow travellers in the most unlikely of places.
Let me start my story in late 2010. Travelling the world playing the consultant was fun. What was more fun was being a very fit touring bicycle rider. Getting out in the sun and the scenery is just wonderful and riding two or three hundred kilometres a week was not an issue. This all came to a crashing stop on Christmas Day 2010 when I was unable to get out of bed, clean my teeth or dress without help. The shear fear of the unknown, the eventual loss of employment and the long lonely days surrounded in pain were terrible for me and perhaps more frightening for my wonderful wife. No one was there to advise and guide us. What was happening? What is the progression of the disease and treatment? How were we going to manage our lives when making tea was a supreme effort? Multiple ambulance trips, all sorts of medical people and a constant round of health system tourism typified the years until recently. Professionals would give you little chunks of information or slivers of detail about progression but when you and your partner are in crisis this is simply not good enough. The system is geared for ad-hoc consumption not long-term care management.
My GP was well meaning but not experienced in this space whereas my specialist was hugely experienced but very reluctant to lay out any kind of plan. I am indebt to my specialist for bringing me back to the living but the system essentially treats people like me as if we were acute patients not developing and implementing a care management approach for severe chronic illness. My wife and I were left to drift from one episodic medical interaction to another without a guide, without a plan and with hope in tatters. This should not have happened.
What gave me hope were my friends and the Internet, the stories from others, the research literature and the tools available. I have spent months exploring the nooks and crannies of chronic disease through the Internet. There is a lot on offer and many good people but it is all over the place and sometimes hard to find. The local "arthritis association" proved useful in the very early stage but was unable to sustain the help nor deepen it. They were too busy servicing the 110 different types of arthritis and playing to the lowest common denominator.
Managing drugs and times became an all-consuming activity. Taking a dozen or more tablets, coping with the side effects and trying to do the right thing at the right time. Certain smartphone tools were very useful but not easy to manage such drug volumes. Drug companies need to support chronic patients much better by not producing different dose tablets which look almost identical, making packaging more user friendly for those with sore and stiff hands and by providing dose management tools.
Get to know your drug side effects and more importantly, understand drug-to-drug interactions. There are internet tools that can assist like www.mediguard.com . I had the excitement of around five ambulance dashes to hospital. On three separate occasions, the first thing the doctors want to do besides an IV line was to administer aspirin. I flatly refused because aspirin reacts severely with the drug Prednisone, for most people causing stomach bleeds. The well meaning doctors did not know this.
In some odd way, coming down with such a disease has been a privilege. It has humbled me and made me rethink my relationship with the world. It has deepened my feelings for my local hero, my wife. I can't take anything for granted because I am a small chemical step away from the dragon rearing its head, breaking loose and scratching me badly from the inside with its claws. Both the disease and the drugs are exacting a price for my current level of stability and my ability to participate in life's little pleasures. Because I know good things may not last I have learnt to enjoy every moment hugely. I have come to deeply appreciate family, friends and goodwill. Not to be bothered about the future is a gift. It really does not matter. I want to extract, as much from what life has to offer right now from this moment.
Given this change from a competitive type A personality to a far more gentle person my attempt at living has reordered my priorities and introduced me to a whole range of fellow sufferers, other good people who see the issues of importance and to being more open to the many positive experiences.
So what other things have I learnt and can share:
- Don't give up as there is hope
- Educate the family about your condition and how it feels.
- Few will really understand what the disease does to you.
- If you have severe rheumatoid disease you are likely to be traumatised, perhaps similar to post traumatic stress syndrome, so seek help if it is needed.
- Tell people about your particular type of rheumatoid disease and don't keep it a secret.
- Most GPs think of rheumatoid arthritis as just a disease of the joints. It is not and can include organs, tendons and muscles. For these reasons make sure you see a specialist rheumatologist regularly.
- Make sure you or your partner write down the doctor's instructions. When you are unwell there is so much room for error. So many times my partner had a better recall than me!
- Make sure you address the pain as there is no heroism in suffering.
- Rethink your diet, as there is a relationship between your gut bugs and many autoimmune conditions.
- Try and get some exercise outside every day without hurting yourself.
- Listen to and observe your body. You will learn to read the cycles, the warnings about drugs, about stress and about over doing things.
If you are taking mental health or stress modification drugs and are stopping them, do this under supervision and in a tapered fashion. A cold stop can be harmful.
Recognise fatigue and build in a rest or quiet time as your body tells you.
Look for distraction just don't sit at home alone for long periods.
There are some key issues and discoveries I have made along the way. The disease is serious and has a terrible toll until you become relatively stable. Pain interferes with everything from sex to parties. With some, mental health becomes a major issue and with others the development of other associated medical conditions can be a real concern. The disease seems to relate slightly differently to each person who has it. No two cases are quite the same. As such, you need to develop your own care plan because no one else will. A coordinated care plan takes time to develop and changes over time. A nurse practitioner would be the ideal coordination point and yes it cost money but here is what I did:
From all my research I determined that I needed to be brought back to gentle exercise from an almost crippled position. Find and organise an exercise physiologist. These are really useful and highly skilled people.
- Find a medical practitioner skilled in pain management and who can be accessed quickly.
- My feet are often painful when walking so I found a podiatrist and bought inserts. Things got a little better.
- Taking lots of drugs and experiencing the ravages of the disease meant that nutrition was important. Food and herbs need to be rethought so I tried unsuccessfully to find a nutritionist experienced in chronic diseases. Instead I identified a holistic medical doctor and now have an ongoing interest in diet and inflammation research.
- Physiotherapy and acupuncture may have been useful but I flared with each experience so have given up. Most physiotherapists would not touch me!
- My limited experience with mental health counsellors is that very few understand the link between sleep and pain and what this can do. Instead I found Stillness Meditation to be wonderful in helping with depression and, lowering my pain level by up to half. Attending cheap courses and regular practice helped a great deal.
So what does daily life resemble now? My wife and I try to eat vegetarian, a little fish and very, very little meat. If we go out and someone has prepared a meal with meat, I will eat it but most of our friends now know. No dairy except for the occasional ice cream! We do not cook with oil or add salt. We eat a mix of the Mediterranean diet and Indian spicy vegetarian and maybe three drinks a week. We completely avoid corn products and white bread. I walk or cycle almost every day and avoid tension and tense situations like the plague as this causes me real physical pain. I do a little community work.
If you are taking Prednisone or its derivatives you need to avoid salt as the drug has a tendency to cause hypertension. I regard this drug as pure evil and question why it has not been substituted by something better. My research has indicated that there is no safe dose and that the drug has horrendous side effects. It attacks many organs, the bones, the eyes and the skin. Long-term use will cause serious bone and organ damage. I call it the "dragon's breath" because instead of being addicted to it the drug grabs many people in a way that makes getting off it very difficult. It holds you! I have tried nineteen times to get off and am currently at 3.5 mg a day from about ninety days at 40 mg. My struggle with this drug is a story in itself for another time.
So what of the future? I really don't know. We all die and I have a clearer idea when this might happen for me. Nothing to really worry about! I can get on with living and sharing life with my local hero. I have put a Living Will in place, expressed my desire to the family so no one is confused and don't talk about it again. I can't work normally or fully time so I have effectively retired. Building the Dragon Claw website (www.dragon-claw.org) with lots and lots of assistance has become the passion. We are trying to address this awful situation.
Taking control and trying to work with your care team is really important. Standing back and letting all the professionals "just do their work" ignores two fundamental observations. The first is that whatever happens you and your partner will end up carrying the pain, bearing the load and taking the risk. The second is that the disease and its impact changes over time and you, by far, are in the best position to track this and to learn from your own history and from every angle of day-to-day life. Anxiety and depression are part of the scene and these can get a little intense from time-to-time for those with a chronic condition. Observing yourself over time, using a little professional help and not being sucked in to an emotional black hole is all about how you manage your care team and your condition with eyes wide open.
A chronic disease is not something you can ignore or forget because it requires treatment every day. Therein lies the rub. Trying to stop my disease from dominating my life and my conversation is a problem. I am getting better at it and the more distraction I have the better. Living with the disease is neither easy nor fun but keeping it at arms length and out of everyday conversation is my goal. Life is much better now as I am stable most of the time. Life is grand!
Life goes on.
It has now been another year, Dragon Claw has grown slowly but kept me busy and I have had an adventurous journey with my rheumatoid disease. Co-morbidities have developed and seem to be developing to the stage where they are beginning to challenge the dominance of my original condition. Extreme dry eye and mouth are resulting in additional pain, severe tooth decay and perhaps, eventually, damage to my sight. I take about ten medications a day, about half of which relate to my eyes and mouth. My research tells me that things can get a lot worse but at least I can prepare and prevent.
Managing two conditions instead of one really starts to eat in to my time and my mental stability. I suspect that all these medications are starting to change my personality. My wife tells me that I am more “snappy” and I often feel restless. I have explored the health system again and while the drugs and warnings flow no-one talks about how best to manage both conditions in an integrated fashion and now an emerging third condition. The interaction between over-the-counter medications and prescribed ones, given the volumes I consume, appear as the great unknown.
I have recently returned to my physiologist, feeling that my upper body in particular was weakening. Ten hours later of careful gym work and I have noticed good improvements in stamina and power. Pushing just a little too much unleashes the dragon resulting in pain and fatigue. Still it is worth it.
How others treat you is a story in itself. Few understand and even fewer know how to start a conversation with the disease as the subject. Meeting and talking to other sufferers illustrates the gap beautifully. Being healthy on the outside, ill within and up and down most of the time to varying degrees makes story telling difficult.
After four years, my typical daily symptoms include:
- Very temperature sensitive. Below 22 degrees C and I have more pain and stiffness. Above this, things are much better
- Stiff going to bed and getting up
- Feeling well for the first hour then a decline until I take my drugs then recovery
- Occasional pain increases and flares but these are much more manageable
- Very unpleasant eyes day and night, administering to them three to four times a night
- Slow tooth rot as a result of dryness
- Mild and occasional incontinence
- Occasional brain fog
- Regular fatigue although manageable/ hideable
Almost eighteen months have now past since the entries above and I am still being infused with Actemra successfully. I think the nurses have pushed about fifty litres of the clear liquid in to my punctured veins. I have become more stable with very few flares and when they come they are relatively mild but often last longer. I am on 3.5 mg of prednisolone, 400 mg of Tramadol and a few other bits and pieces. The implication is that I have strong background pain if I do not maintain the Tramadol. The cold still bothers me, as does fatigue. I am probably as good now as I will ever be. I take six different medications each morning and night for my eyes and spend a good deal of time looking after my teeth. The possibility of losing my sight motivates me hugely. I have discovered not to take multiple pills and potions together. Their interactions have caused me difficulties for years without me understanding why. By spacing the doses out by around 30 minutes, my systems is less stressed and I do not get the up and down reaction twice a day.
I have been working at my cycling now for over two years and have finally managed to cycle 30 kilometres in a session with the odd rest. This is absolutely wonderful for me but I feel that I have reached the limit.
Fatigue and stiffness still abounds but only really limits me at the end of the day when I am tired. I drove to Canberra the other day for a series of Dragon Claw meetings. By the end of the day I was unable to drive back to Sydney and had to spend the night. That was my first full on “business” day and, as a consequence think that I will never return to any form of regular paid employment. Managing stress and energy levels is just too complex.
The health system still treats me as an acute event that gives me motivation to keep pushing Dragon Claw. Things are going pretty well but it amazes me how little time volunteer helpers actually brief themselves about the disease and the issues. It is as if they fear finding out too much.
My wife and I are pushing as much life in to our days as we can and guess what? It’s fun. I have final come to accept my lot and do not struggle to overcome, to trade out or to yell and to scream. It is what it is! Acceptance has become the key ingredient to survival.
Mike, March 2016