One particular reason I wanted to start this Blog was to offer some help, hope, support and share first hand experience of having the genetic condition known as Ankylosing Spondylitis, AS for short. Simply, it’s a condition where additional bone growth connects the vertebrae of the spine, locking it together; it used to be also known as Bamboo Spine as it resembled a bamboo on X-ray. It generally starts in the lumbar spine (lower back), and spreads upwards, sometimes taking the whole spine including the neck. There are secondary conditions associated with AS like, Iritis (painful inflammation of the eye which needs urgent attention when it occurs). In the advanced stages, usually the spine is pulled over into a very bent state. Breathing is restricted, and there are often eating and jaw implications too. AS is a condition like many other conditions, that affects people differently. It is more common in the older population than the young, affecting more men than women, and for many of the years I was suffering, like many others, it was never diagnosed. Although it is a genetic disease, to suffer it in early life usually means there was a trigger that activated the condition. In my case I believe it was a case of Glandular Fever, which hit me quite hard when I was 18. My glands didn’t all recover at the same rate so left me with glandular imbalances. That kick started the AS prematurely, my glandular imbalance making my body think it was older than it was, otherwise like millions of others, my body may have grown old with the AS only manifesting itself in my later life.
But as it was it was a condition that plagued my twenties and thirties with a range from daily pain to severe ‘unable to move’ times. From my early thirties I have had a rigid spine from the base to the mid thoracic (between the shoulder) area. I initially I suffered on and off back pain from the age of 19 years old, having regular remedial treatments, which did help but never got rid of the problem for more than a few days. There have been some terribly painful, difficult times. For years I couldn’t sneeze, yawn, or cough because of my ribcage ‘fusion’ which meant I couldn’t take a sudden intake of breath. I walked by putting my tiptoes down first before lowering the heel, to help cushion any deviation in the level of the ground that could jar my back. The Sacroiliac Joints located at the base of the spine allowing the pelvis to pivot with the spine as you walk and move; in my body those joints fused, I do not have that pivot action of my pelvis. I had times where I would spasm, the pain so great I would literally get stuck, either in a chair, at the top of the stairs, in bed; in the kitchen once, and in that circumstance I was stuck where I stood for 8 hours unable to move from where my then husband left me that morning until he returned; I was so exhausted and cold; it was not a good time. If out and about, I would have to look at the ground, checking for unevenness, but also avoid people who may accidentally bump into me, or cause me to suddenly move out of their way in busy areas, these were all risk-assessed daily activities that potential were agony for me.
I had been very sporty in my teens and early twenties, but the pain in the back and hips made me have to give it all up. My whole life was being governed by my pain level and mobility of the day. I had lived free to do what I wanted, body fully capable and able, but that had all stopped by the age of 24. I felt I was being pushed into a box and someone was trying to put the lid on it, on me. I was losing a battle with a foe that had no identity, nor form for me to defend myself against, I couldn’t find answers; there was no rhyme or reason to the attacks. It was as challenging mentally as it was physically, pain that totally engulf you when it struck. It was a very mentally challenging time for me, because I couldn’t see a way forward, doing what I’d loved doing, I could only see a way ahead of not being able to do things, a very negative cloud loomed above me, I didn’t know what life had in store for me, and no one could tell me what was wrong with my body. But my natural optimistic persona kept that cloud above me, rather than letting it engulf me, it was a balancing act.
I had miscarriages throughout my twenties; one of which was an ectopic rupture, I was very ill from that episode. I regularly had very painful spasm in the lower back and hips whenever it was my monthly period. And when I did have cause to call the Doctor, they used to tell me, it was just a bad period; even though I often had to use crutches to be able to get around. It was a hugely challenging chapter of my life, because I always wanted to have a family. I could conceive but the inflammation in my body, and the internal pressure, even the natural swelling a woman’s body incurs during a period, would be enough to inflame me so much, it would be extremely painful, and in many cases enough to end my pregnancies. I always looked incredibly healthy though, so when doctors saw me, they never saw me as a person with a severe problem, they never offered me any tests, scans – nothing, I felt very isolated and very much on my own. The fact I was not going to be a mum was crushing. But, the thought I could pass this gene on to my child and give them a life of pain, was a bit of an antidote to my sadness, because I wouldn’t wish the pain I’d had on anyone, never mind my own child. So I did have to convince myself, against every cell in my body, not being a biological mum was actually for the best, the gene would stop with me. I resigned myself to the fact that as this was my body and it was down to me to cope with the peculiarities best way I could find.
In my mid thirties whilst working in the Midlands I had a major flare up, I sought help from an Osteopath who again eased the severe pain, but he realised there was something else going on. He referred me to a friend of his, a Chiropractor who had X-ray facilities, and I promptly had my first X-ray. The Chiropractic Practice had 5 practitioners, who were all asked to leave their patients for 5 minutes to consult on my X-ray. I was then summoned into the room and with their serious faces staring at me, looking at my every pained movement, was shown the X-ray for myself. It was an unanimous opinion that I should be in a wheelchair, and they would expect a person with the spine in the X-ray to be paralysed, I was a source of awe and astonishment, I was in shock.
I was rushed to hospital from their premises and given an MRI, CAT scan, blood tests, breathing tests; was assessed for my needs, observed at how I moved, how I got out of a chair, laid on a bed, everything. All of these activities I had to achieve slightly differently to the norm. It was a bit of a whirlwind to be honest, and quite scary. I had been treating people with Holistic Therapies especially Remedial Massage, and Body Therapies for 15 years, so I had a good understanding of how the body worked, and had used the knowledge from such therapies and Kundalini Yoga on myself to that date. Diet and supplements played an essential role too.
At the hospital I was asked if I’d attend a weekly AS Support Group. Specialists I saw were at a loss as to what to advise and couldn’t understand how I was still mobile never mind living a life like I was. I was a little like a guinea pig, shown off to give hope to newly diagnosed patients, and inspiration to fellow suffers. On good days, I could still touch my toes, which strengthened their message of how important exercise is with AS, and I could still breathe well. The reasons I could were because, with my back being rigid and being born with a straight spine, I flex from the hips, having long hamstrings. And because I breathe from my abdomen, I still have a good quality breath. My ribcage didn’t flex, I had the shallowest of breath if I tried to breathe from the chest, and it wouldn’t have been a realistic way to breathe to sustain life. I was also told one of the scans revealed there was some fibrosis in the upper lung due to the stagnation in the lung tissue. I remember one man in the group, who was in his 70s and was permanently attached to an oxygen tube because his AS was advanced like mine, his ribcage had fused and he was constantly breathless; he was also quite bent over creating more chest restriction. I talked with him at length and very soon he managed to breathe a bit from his tummy, releasing a different man. He laughed and smiled and whilst still in a terrible state, he felt he was recovering some ground with his demise instead of only losing more and more.
Breathing techniques are something so simple, we obviously all have to breathe, but literally breathing techniques can be life changing. Had I not abdominally breathed, I too would probably have been attached to the oxygen in a wheelchair. I was given a reality check too by attending this class. I saw people who were like me when I was in my early twenties, but they still had full flexibility in their spines. And the other end of the spectrum when the body had totally been taken by AS presenting the end result, that was the stage I will probably progress to next, and it was a very humbling stage of acceptance. Most AS sufferers in the latter stages become very bent over, as the AS pulls the normal curvature of the spine over. With my poker straight spine, the fusing has kept me upright so far, something I am very grateful for.
Thankfully I have an amazingly strong Faith that gives me an inner strength that just takes over. It is a Faith I have always had, it isn’t a religion, or a learnt belief, it has always been a force within me. Quite early on whilst being racked with pain, I gave my ‘inner force’ the reins when I was at a loss as to what else I could do. I couldn’t cope with the pain my body was in on my own, I needed to let go of the willpower I was using to hang on. It was like a literal conversation I had with myself, I handed myself over to ‘it’ to help me get through. I remember saying ‘it’s over to you, I can’t do this’, and I physically let myself go into an abyss, I had no idea what would happen next. I stopped physically fighting the pain and let my body go. It was the first time I truly felt the separation between the ‘spiritual self’ as I call it, and the physical body. It was a case of me looking at my body as a separate entity. In those days I still didn’t know what was wrong with me, so I was fighting blind so to speak, but this Faith kept me living my life as fully as I could up to the point of diagnosis in my mid thirties. That diagnosis gave me such confusion, elation, fear and loss. Finally I had a reason for my struggle, for the pain. My mind, which had always been strong, could now reassess how best to deal with a body that was uniquely challenged by a named disease. Like being told for the first time what brand of vehicle my body was and I now had to start to understand how it functioned and how to maintain it without a manual.
I was advised to use a wheelchair, because I would need it before long anyway, and told if I moved suddenly or bent over say to put my shoe on I could be paralysed in that second. I was given a very bleak prognosis. Naturally I had no idea what the future would hold, I was only being given very negative, very distressing news, which naturally was hard to hear.
I carried on with my life as I had always done, but with full respect of my condition. It wasn’t going to be an easy ride, and many, many times it was proved that I didn’t have a huge say in how my body was going to be. It was very humbling; it was also quite surreal, never knowing from one day to the next whether I could function relatively normally when I woke up, or whether I’d be in agony; whether the day would pass without incident or not. But life did indeed go on, and the years did go by.
There were so many instances, that looking back now I really do not know how I kept going. I think at times, it was harder for my family and friends who had to see me in agony and constantly struggling with regular things, and them being helpless to do anything about it. But regardless, my Faith and or inner strength made me face each day with vigour and determination. I’d heard people who had suffered near death experiences talk of similar attitudes to their daily lives. I always looked so well and healthy, I was a true conundrum, and happy to say still am.
I kept my life as healthy as I could, never deviating from the natural ways of healing that was my passion, my life; a vegetarian diet suited my body and me very well, being less acidic so lessening the inflammation in my body. AS is classed as an Auto Immune Disease, so the more I could do on a daily basis to improve my health the better. I am blessed to have good health, and it is something I do not consciously disregard. I did have some painkillers prescribed by my consultant, for the worse case scenarios, when the pain was just too much to keep moving, or even breathe. These pills would knock me out for 8 hours straight, and most times I woke up with a body that I could move, but granted it would be very fragile, I could carry on. A couple of times my abdomen went into spasm, very suddenly and severely, It was a fight to breathe. The paramedics were called, they were there for peace of mind really, as I had to draw on inner control to soften the muscles and get a breath for myself. Those around me at the time were terrified It happened in a flash as I was simply putting the dinner on the table, I froze mid movement, as the spasm gripped my abdomen, and as that was where I took my breath from, very soon my face and hands all stiffened and contorted, it was quite scary. But again I had to draw on that ‘other’ part of me to talk myself through the attack, keep calm, with no idea whatsoever how it was going to play out.
I took daily organic phytonutrient rich supplements that ensured my body was being given the best possible nutrition over and above what I ate and drank. It doesn’t make any sense to me to abuse yourself and then suffer because of it. We all have challenges in our lives, but some can be made better if responsibility is taken, and changes are made to improve how we look after our body and minds. And on the spin side, conditions can and are made so much worse by poor body management. The quality of life can be a case of what we give ourselves to live on, and how we breathe dictating our health.
I sought the advice of a fantastic friend and colleague who is a multi disciplined Natural Therapy Practitioner; he has been in practice for many, many years, what he doesn’t know, isn’t worth knowing, he is amazing. He used to give me acupuncture and he researched my AS diagnosis and how it affected my body. He gave me the homeopathic remedy Hecla Lava. It had been trialled in other countries on AS patients with some very good results, so he was optimistic it would help. It needs to be prescribed professionally to make sure it’s the most appropriate remedy for you, but thankfully for me, it was a miraculous remedy. Within a week I was feeling so much better. I kept taking the remedy for years, and it facilitated me having some of the best years of my life. I was fully active in every part of my life. I could move my ribcage again and there was ‘softness’ in the spine, it still didn’t bend but it no longer felt like a metal rod. I could breathe from my chest; I could sneeze and still love sneezing to this day having had years of not being able to. I can cough, yawn, could even do a short jog if needs must. Sure I have stiffness when I do something particularly physical, but so would anyone else.
I would see Consultants regularly and they always took a second look as I walk through the door, as their perception of the person my file portrayed to them, in no way should be as mobile as I am. I have been given no advice, no guidance, nor hope whatsoever, just painkillers and the impending wheelchair and operations to look forward to. No one has been able to explain how I still have the mobility I have, how I don’t live on painkillers, how I can still lean over and touch my toes, bending from the hips not the back you understand. They have shown no interest in asking what it is I am doing, which I was hopeful could be passed on to offer advice and hope to fellow sufferers who go to them, desperate for guidance and hope. It has frustrated me, and I have purposely mentioned the homeopathic Hecla Lava that I take, which has changed my life in itself. I wanted to be able to help in offering hope to AS sufferers. My quality of life is better than most peoples, I just have a rigid spine and have to move differently to accommodate that, be respectful of my body’s abilities but still live an active life.
I have had creeping on 16 years of wellbeing – in relation to my back, now, relatively pain free years I never dreamt I would be able to have. I have wondered many times, how I would be today if I had been given that Hecla Lava remedy in the very early days, before all the fusing had taken place. Some of the results in the trials had reversed the condition completely in fellow sufferers; by the time I started taking it, ¾ of my spine was already fused, I was at the wrong end of the scale to get the best possible result, but still, it helped beyond my wildest dreams.
I have always continued teaching Yoga classes, which give me a time to reflect and reinstate to myself the importance of correct breathing, taking time to quieten the mind and listen to yourself, coupled with disciplined exercise. It gave me the chance to prove to myself I still had a lot to give and could still help others. I had to improvise, be eloquent, inspire enthusiasm on the occasions I couldn’t do the exercise, I had to preach with a “do as I say, not do as I do!” kind of attitude, another learning curve. Yoga isn’t a case of having to have the most flexible spine you can imagine, as I can vouch, think of a plank of wood and you’ve got what mine’s like! It’s the whole discipline of mind, body and soul, finding that balance of harmony within that strengthens you in every part of your life, balance.
I learnt over the years to manage my pain and abilities very well. Many people who met me or came to me as a patient never realised I had my own spinal problems; they didn’t realise I had no flex whatsoever in my back, even to this day. As I treated patients with back problems, I was able to share empathy and understanding of the pain, the restrictions, the fear and desperation that can come with having a bad back. I had first hand experience of which areas of the back can and do affect another part, or another part of your body and your life. In many ways it gave me a fantastic sixth sense that cannot be taught or learnt. I also realised that a healthy attitude, managing the fear does make a difference to people’s tolerances of pain and restrictive bodily functions. I was able to inflict an enormous amount of physical power into the remedial treatments, far more than my slight framework should have been able to.
I am fascinated by our minds, they are so powerful and under used; they are so unique and can totally transform your life. Learning how to calm and clear the mind, to unwind and relax mentally is a very important part to well being; discovering who we are, and what we are capable of. To be able to listen to your intuition, and have the courage to follow your own thoughts is an amazingly empowering ability. A lot of physical problems and illnesses are exasperated and sometimes are even manifestations of mental imbalances, be they emotional irrationality or a fear from a known or unknown source. Our minds can be so complex but at the same time, so wonderfully simple. Learning how to breathe properly can quieten the mind, thus enable relaxing of the body. It gives us time to mentally process data that is constantly bombarding our bodies and minds, and when we are faced with a problem that isn’t going to go away, like AS. Having a mental ability to deal with reality can mean the difference of coping and not coping. It helps through the transition of change that inevitably will be needed.
Over the last couple of years I have noticed changes in my spine. Of course I am older, 50+, and in some ways I’m of the age when people first find out they have the condition of AS. My body is changing too due to hormonal changes which even without something like AS, affects the bones, but because of AS I am already at a higher risk of getting Osteoporosis over and above the norm. When I was diagnosed it was hard to find anyone of similar age that was as far on in the disease as I was. I was told my spine was like an 80 year olds instead of a thirty something year old it was. Today there is the Internet where it is much easier to find fellow sufferers who can share their situations with you, who can offer help, support and advice. There is so much advice out there; there are forums, you name it, and you can find it. I hope I will be one such ‘port of call’ should you think I can offer assistance in any way in helping you or a relative, friend, partner who has the AS diagnosis. When it all seems very daunting and insurmountable, don’t give up, there will always be an avenue yet to be explored, and there are always alternative ways of looking at the situation. The more information you have, the better armed you are for the journey ahead. Although the Internet is good for gathering information, you do need to seek professional advice and not take the Internet’s word as the only word, there are pro’s and con’s of such information, just be aware. And needless to say, some AS sufferers never experience the great degree of pain I endured, and some keep a good level of flexibility and mobility, not everyone suffers the full spinal fusing.
With my neck being the latest chapter of living with AS, it had stiffened a lot, and I’d started with referred pains and tingling into my hands. I had another MRI scan which showed my neck had already fused, apart from one joint. I was amazed because there hadn’t been the pain. I thought that was going to be the next chapter, but having been saved the pain, I was a lot further on the road to total fusion that I realised. After being referred to a Neuro-surgeon because of the seriousness of the MRI scan, I was informed that the additional bone growth that fractures off in the neck being much finer, had created bulging, and that is now pressing close to the Spinal Cord. It would only progress and lack of control in my feet would be an indication that the Spinal Cord is being restricted. Surgery will be required at this stage. The one remaining mobile joint is taking the brunt of all my neck movement, and the disc is bulging, impinging on the nerve rootlets, hence the arm referral. It wasn’t a rosy consultation, and the stiffness in my neck was affecting everything I did. My arms were tired and felt weak, so even less of the things I was still able to do, where now on the endangered list. My life plan was again under review, every aspect was running through my mind, and I was spending time thinking through the fuller implications that lie ahead. Advised against massage to save the remaining joint of ‘freer’ movement, the headaches were quite severe, and pains in the eyes, a general pressure and tension in my head were daily occurrences that tire you out.
My norm now, was that my head swivelled on the top of my neck so to speak, looking up was very restricted and down less so. I could still turn my head side to side, but any physical work I did, came at a greater cost and took longer in recovery time. Recently I had a trip to York Minster with my mum and nephew from Canada, and within a short period of time of being there, my neck let me know it was not at all happy with the looking head high and above. Half way round I could only look ahead and down felt good. By nightfall my neck was exceptionally stiff and painful, with more limited mobility. By the next day, my head had seized – no pain, but it just wouldn’t move from the looking forward position. It just would not move, full stop. After a few days, unable to drive and do very much, not even drink without a straw I had to try something. Whilst laid down I manually pushed my head, millimetre by millimetre as I tried to relax my neck muscles, until I had my head turned to the side. After an hour I could turn my head side to side as if in slow motion, so I had hope there was a chance of recovery, rather than the operation is nigh. After a couple of weeks, I was still struggling, and it was tough going, knowing it would hurt if I did anything and stiffen back up again, I wasn’t making any headway – excuse the pun, whatsoever.
Lethargy is not a trait I really adhere to, but I could feel myself resigning to this is how it’s going to be, and it didn’t bode well with me mentally. One Friday night I demonstrated to my partner, just how little movement I had, and I was going to have to rethink my life. He was naturally concerned, I am never usually defeatist, but he could see how little movement I had. Saturday morning, after feeling inspired having watched some Qi Qong, and my best friend asking ‘what are we going to do?’ I got up early, put some mediation music on the earphones, stood outside in the sunshine and started to connect with myself again. A practice I had stopped doing some years ago. I was back on the full dose of Hecla Lava, but I knew I had more inside that I needed to connect with to help me through this stage.
Feeling the sun on my face and body, letting the music fill my head and mind, I started to breathe and connect with my core. Eyes closed I let my body dictate the moves. Slow and gentle, building into powering energy into muscles then releasing it out, balancing all the muscles that pulled tight from my thoracics, into my shoulders and arms, up into the neck. After an hour, my neck was free enough to turn my chin to the shoulders; I could look down and look up at the sky. I felt I had worked and stretched out all the layers of muscles that had tightened over the years, to give me the mobility I hadn’t had in many years. My neck is still fused, but the muscles are no longer tight and pulling nor hurting. I ran upstairs and showed off my new mobility like a child on Christmas morning. The power I felt inside myself, the feeling of reconnecting to an energy source deep inside me, still brings tears to my eyes three weeks on. Each morning I do an hour of predominantly upper body stretching and the difference is nothing short of remarkable. Already my body feels like its changed shape, I feel slimmer, longer, my neck is definitely slimmer, I feel strength back in my shoulders and upper back. I feel so much better for the daily stretch out, and each morning I have repeated the routine, never consciously forcing the stretches, they seem to flow one into another of their own accord. If someone were to observe me, I guess they would think I was doing a form of Tai Chi. Half an hour each morning now is enough to keep the suppleness in the muscles, it has transformed my daily life once more.
Inspired and delighted, for however long this new state of being lasts, I can only chastise myself for letting so much time lapse without this disciplined practice, and secondly, be so proud of myself for having the courage to dig deep and unleash that power within; to reconnect, I feel like I’ve found a part of me I had lost. Thank goodness my lovely nephew came to visit, I’ll be eternally grateful!
I am, thankfully, still on my journey. I remain grateful for the years I’ve had out of pain, and realise in some people’s opinion, it was time I theoretically shouldn’t have had, I know that for myself. But at the same time there hasn’t been a day go by when the effects of AS haven’t been felt in one way or another, a hundred fold latterly with my neck. So as my journey continues forever changing, I have no option but to accept it and deal with it best way I can. AS isn’t going to go away by me being in denial of the facts, I am still theoretically on borrowed time, but at least I have been honest to myself and my own abilities; drawing on intuition and the strengths I hold most dear, up until I need intervention from another source. Having that mind set is a great comfort, but it does get tested, and there will be times when I feel down and overwhelmed by it; I hope as in the past I get the strength to pull myself up again. But I am only human and there are no guarantees, you can only do your best, that’s all I can ask of yourself.
I labour the point we are all unique and that we all need to deal with our challenges in life individually. If my life’s experience can help anyone come to terms with a similar scenario, then I am fulfilling an inborn desire to help others. The more avenues you have open to you, gives a freedom of choice. I am lucky for many reasons, but particularly because of my knowledge of the body and how it works. I understand the importance of diet, lifestyle, exercise and mental attitude. I am predisposed to a natural holistic slant to life, and was able to turn that inward to help myself. There is no guidebook as such, nothing is chiselled in stone, we need to find what works for us, and have the freedom, choice and support to follow it.
I’ve counselled patients over the years, when they start reaching their golden years, or when they have a condition that is life changing, and to admit they can no longer do certain things, no matter how much they loved doing them, is not giving up or admitting to failure. It’s the start of a new chapter of your life. It’s respecting the body you have, and accepting what it can and can’t do. The acknowledgment of your body’s abilities in the here and now, not living today wishing for yesterday and it’s abilities, and not to dread the tomorrows. I’ve talked to myself on this topic, because at my age you would expect me to be still very active and ‘normal’, yet I have to acknowledge and stop doing some things I love to do. Be it some aspects of gardening, some hobbies and exercise to mention just a couple of things. It’s the here and now that matters, it’s the only real time we have; yesterday’s been and gone, tomorrow is a day that never arrives, it’s only ‘today’ that is real. If you can do what you want to, then that’s great, if you can’t, don’t beat yourself up, it is as it is, it isn’t the end of the world. You’re body ages day by day, and what comes with that is changing abilities. It’s the same philosophy with certain conditions, not necessarily due to your age but the nature of the condition. There will be days when you can achieve more than others; it’s just the way it goes. But aging is natural, changing abilities is natural, both are inevitabilities of growing older, and we cannot stop growing older – well, not yet!
Please feel free to get in touch if you think I may be able to help in any way.