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Mind Body Plus Me!

~ Musings and Inspirations towards Holistic Health

Mind Body Plus Me!

Tag Archives: Ankylosing Spondylitis AS

Bodily Comfort . . .

07 Monday Nov 2016

Posted by mindbodyplusme in Ankylosing Spondylitis AS, Holistic Health, Nature & Gardening

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Ankylosing Spondylitis AS, Back Neck Shoulder Arm Problems, Body Limitations, Car Seats, Dog Walking, Handsfree Dog Lead

When you have, let’s say, a ‘limiting’ condition that requires you to think differently when doing daily tasks, you learn to think outside the box. Your priorities are different to the norm.

I recently went to look at a new car, and although the looks, capabilities, economy and, yes okay, the colour are important, nothing is more important than the sitting position. So irrespective of all the above, and what the engine is, if the seating position for my straight spine doesn’t suit, then the car is a no go. I can tell that within a minute or so. The sales assistance gets all poised for the technical data to impress me, and I’m already out of the vehicle saying, not for me thank you very much. They almost stand with their mouths open as if to question what just happened! Most seats are shaped to support a normal ‘s’ curvature of the spine, and the head rest is usually slightly forward to the upper part of the seat, none of which are good for me. So I’m still looking!

Dog walking too is an activity where I have had to think outside the box. I am lucky enough to do a lot of dog walking, I love it. But my days of conventional lead holding with my hands are over. Most people with back problems, and that includes the neck and shoulders, not just Ankylosing Spondylitis afflicted people, but many of the patients I treated with back, neck, arm and wrist problems got the same advice. Look at how you use your body when walking the dog, more so perhaps if it’s dogs. Most people you see are having one arm tugged forward on a tight pulling lead, and the jerking and jarring will undoubtedly either hurt or hinder any condition.handsfree-lead2
We use harnesses on our dogs, I personally do not like seeing a collar round the throat of a dog. The harness gives, in my opinion, better control as you take the power out of the forelegs of a dog when you need to restrain it. It’s also great in helping you lift the dog into a car, over a gate or fence, it also lets the dogs head be free to sniff and move.

I have had to change to using a handsfree lead that goes around my middle; I then attach an elasticated tracer to the harness. Whilst our dogs are pretty good at walking without pulling, there are occasions when they see something too good to ignore and they, in a blink of an eye, will change direction and or pace. Ordinarily that would jar and certainly hurt. With the set up I use, it is very much minimised, the elasticated tracer softens the jerk. I have an elasticated lead too, on days I am extra cautious about my neck. And when I want to move them on, I use my body in walking forward, I don’t use my arm to pull them, it’s so much easier.

Of course dog training is very important, and like I say, ours are pretty good. But I do like a dog to enjoy their walk, and have a bit of spirit in their character, instead of robotically walking by your side showing no interest in the countryside around them; but that is my choice. Ours get plenty of free running round our field, but discipline on a lead is an essential part of their daily routine.

So before you decide, walking a dog is too painful on your wrists, shoulders, neck or back, try thinking outside the box and try a long lead round your middle, or invest in a purpose made jogging lead. It may prolong your dog walking days for years, so you and your beloved four legged friend can exercise in comfort today, tomorrow and beyond . . . so it’s a win win for all concerned!

Druantia

Fragility Of Mind . . .

23 Friday Sep 2016

Posted by mindbodyplusme in Ankylosing Spondylitis AS, Holistic Health

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Ankylosing Spondylitis AS, Breathing, Health, Holistic Knowledge, Life Experiences, Positive Affirmations, Psychology, Sharing

Over the past few weeks we have had the pleasure of having family members coming to stay as part of their summer and school holidays. It has been brilliant but I must admit, my usual stretching routine has had to be shortened and somewhat rushed, the consequences of which was felt almost straight away.

The first morning of being back to normal, when I was able to do the usual longer exercise session, instantly reconnected me, and my mobility has felt freer again since. During this disrupted period I became aware again of the fragility of our minds. It is such a narrow line between coping and not coping.

To live in, let’s say a ‘normal’ body, you can get up in a morning, do what you want, eat what you want, and just get on with your daily life at will. You don’t have to think about it, your body just works and moves without having to give it any special thought. But when you have a body that has ‘quirks’, you do not have that luxury. You have to think about all the things you do, often from the pre ‘doing’, to the then ‘doing’, to the post ‘doing’ stages. And that process applies to everything you do, and I mean everything: getting in and out of bed, getting dressed, walking, sitting, standing, lifting the kettle, driving, shopping; every single thing, every day has to have a flash thought, to a considered thought, for a plan of action; it’s a constant reality. It takes mental strength and focus to keep the flow of your everyday life going, it can so easily become a heavy chore.

If you have pain, it can be the severity of which that stops you in your tracks and your daily life accordingly, but when it passes, life returns to normal. However, daily life for someone living with constant pain, even ‘low’ pain, or a body that does not function ‘normally’ is exhausting, as it never goes away. Having constant pain, be it an ache, or restriction that is always there is very mentally challenging, pushing you to your limits of coping. So pain is relative, bodily restrictions too, but whether severe or minor, they are hard to cope with, putting demands on our mental ability to keep living in a positive light. It is a daily challenge, and on some days, an hourly, even down to a minute-to-minute challenge.

People as you will have realised are all different, and their abilities to cope vary tremendously from person to person. Some soldier on regardless of their affliction, others sit down at the slightest hint of an ache and don’t move until the threat of it has gone. There isn’t a right or wrong, but the fragility of your mental state can make a world of difference to your quality of life.

I have been on the wrong side of depression before, brought on by having to cope with this constant challenge plus the challenge of some difficult life events combined. It has made me very aware of the scale of mental well-being a person can experience, and the speed at which it can change. It can feel very lonely, isolating and desolate when you know the problems you face are not going to go away. It can feel like you’re on a slide and no matter how hard you try to get a grip on something to steady the descent, it’s too slippery to be able to stop yourself sliding into a deeper, heavier place. A daily existence of living like it’s a real ‘Groundhog Day’. There are always ‘stages’ though, when the journey has easing slopes. Not that you can always see them for yourself at the time, but with knowledge, understanding and support, those ‘stages’ can steady the descent, enabling us to climb back to higher levels again; it isn’t necessarily a permanent one-way trip. Our mental strength is a huge factor on whether these opportunities are acknowledged in any way shape or form, never mind acted upon. To talk, share and ask for help and support are often incredibly hard acts to do. The feeling of failure and weakness having to ask, and thinking you could be burdening someone with your problems when they maybe have enough of their own, add to the scenario. You know that it could also alter the way that person then perceives you; you have no control over how they react. But that is down to the individual and who you feel you can relate and confide in, there will always be someone, either a friend, family, or a professional, a doctor, a counsellor, someone who will not judge you for who you are nor for what you are struggling with. It’s all relevant, no matter how large or small or trivial the problem may seem to be, acknowledgment of it is never a waste of time.

It is tiring mentally as well as physically to keep positive when you have a body that requires extra attention. And when you have a break from that programme of daily attention, you know it requires even more effort to get you back to where you were before, hoping that that is still possible. To live knowing you have to maintain the status quo, or suffer, is a gruelling mental state. When you want to be more active but have to weigh up the pros and cons to become so, is a mental process many people never have to contemplate, whereas others, myself included, have to consider it all the time, and I mean ALL the time.

There are times when you just want to stop the daily motivational pep talks you constantly give yourself for a while, and not feel like it’s an all consuming burden that engulfs you; it has no soft side. It is a reality that takes a lot of adapting to, and acceptance, some can adapt others cannot. Some are grateful for what they can still do; others pine for what they cannot.

For myself, even now all these years on, and with all the knowledge and experience I am lucky to have in my armoury, there are times when I can be momentarily overwhelmed by my own demise. It’s a flash of near dread that floods my senses, causing a wobble of whether I can cope with a future not of my choice. A time follows when I contemplate and reassess where I am mentally, and whether I need to search out another string in the bow of coping. Whilst my general health is excellent, my fitness is excellent, my quality of life is good – there isn’t an activity in my daily life that hasn’t been adapted because of my inflexible spine and neck. The process of wanting to do things I love is crippling, when you know you can’t do them. Even being able to freely play with young members of the family is extremely restricted. I have always loved being physical, through my work and leisure time, I loved the feeling of healthily ‘working’ my body. Despite pain, for the bulk of my life so far, I have been able to have a bearable mix of activity, and still do. But I know any sudden jarring to my body, could result in me being in the wheelchair I am told I would be in; and maybe not because I am in pain but because I would be paralysed. I could have a fall, a bump in the car with a whiplash type jar to the neck; I could do so many everyday things, that for me could paralyse me because I have no flex in my spine, it would, in essence, break and that is a very humbling but also a scary possibility. It is a scenario that any day could be my reality.

To allow fear, that foreboding emotion to come to the forefront of my mind is something I cannot afford. Knowing that any day a simple mishap could manifest in paralysis is a fear that has to be managed, never ignored but directed into a state in my mind that does not make me frightened to get out of bed. I have wobbles but so far not often and not for long. All I have been through has forged a strength I would never have been able to have had I not had my journey so far; it has been a process and still is. Ignorance is bliss as they say, but when you live ‘knowing’ something, it can be terrifying and the fragility of the mind is tested on a daily basis. Sometimes the analogy of keeping one step ahead of the fear feels very true, and a lapse, be it in the stretching routine, or a lapse in concentration when doing something can result in life changing circumstances. This creates an element of pressure on you, to keep doing the most you can whilst assessing whether it is enough or too much. The line between the two can be very narrow, and can vary from day to day. So you are always in a self-assessment mode, trying to evaluate the best approach for that day and time. Sometimes you want to stop the ‘ride’, have a break from the pressure of keeping it all up; and inevitably you momentarily start to wish. Whilst hope is fantastic almost essential, wishing for the impossible is costly to mind and body.

Mental turmoil is easily triggered; you need to be able to calm the effect before a calm ripple in the mind becomes a white water rapid out of control. Breathing, meditation, music and space help balance the mind, and I rely heavily on these disciplines and others to keep my mind stable at times of vulnerability.

Our minds are so fluid and fragile, at the same time, incredibly strong and utterly amazing. There is far more to be learned about them than we know to date. They are so precious and can define who we are over and above anything else. Take some time to evaluate your mental well-being today, don’t take it for granted because its equilibrium can change in a second. A healthy mind is invaluable to an able-bodied person but imperative to someone who has a body that doesn’t allow them to partake in ‘normal’ activities of life. It facilitates the quality of life in all of us; we all benefit from a fluid balanced mind. Maintaining the equilibrium is key to coping with the continual challenges we face in life’s learning curve. But the maintenance varies tremendously dependant on our individual bodies and minds.

The pressures and expectations put upon us from society is hard enough to mentally process, but when added to that all the other influences and pressures of life – the list is long, but to save you from the entirety – the concept that even a ‘normal’ fully functioning and able bodied person, can struggle to keep their mental equilibrium. For folk who have afflictions of one form or another, have a completely different perspective, ultimately the challenge of coming to terms with their own abilities on top of the afore mentioned. These minds need fine-tuning and in fact are often more in tune out of necessity than those of someone who hasn’t had to contact their inner strengths to cope and survive. To me, this can be seen as a positive slant, we tap into deeper depths of our survival instincts than most. The more we can use our inner strengths and intuition I believe leads to a more holistic life and many levels.

Despite all I’ve been though, and of course I wish I could do things I now can’t do, I am so grateful and thankful to have the mind I have today. How it is today has only come to be from all the pain and inner strength discoveries I’ve made on my journey through life so far. Hopefully I still have a long journey ahead of me, but one thing that is as vague as the day I started, I do not know what tomorrow will bring. Being mindful and aware are attributes that have enormous presence in my daily life. We have to allow ourselves the right to feel down, the right to feel sad, we need those emotions to balance us. Just like there is hot and cold, wet and dry, happy and sad, without one there isn’t the other, so hard as life often is, it could definitely be a lot worse. Being mindful of that helps keep me in a more positive vibe for the journey I am on.

Search out your inner mental strengths to help you cope with whatever afflicts you, emotionally, mentally or physically. My bias is to help anyone suffering from Ankylosing Spondylitus and the problems associated with it, but I hope it also resonates with everyone who reads it; we can all connect deeper with our inner strengths, always.

Druantia

 

 

Mental Strength

26 Tuesday Jul 2016

Posted by mindbodyplusme in Ankylosing Spondylitis AS, Holistic Health

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Alternative Medicine, Ankylosing Spondylitis AS, Breathing, Communication, Healing, Health, Holistic Health, Life Experiences, Natural Therapies, Relaxation, Sharing

One aspect applicable to having AS and other pain related conditions that I’ve treated over the years, which is often over looked, or totally ignored, is the mental state of the individual. It can vary enormously, having constant pain, whether an ache or severe is mentally exhausting. Having a sudden sharp flare up can be a shock mentally, as well as being exhausting too. It can make people depressed without them realizing it and can truly bring a person down emotionally and mentally; like living with a cloud over them, or a weight on their shoulders, carrying it everyday, it can make life that bit harder than it should be.

We all cope with pain differently and whilst some people are very resilient, others aren’t, there is no right or wrong way to be, it just means pain is very relevant to the individual. It’s a very important factor of the overall condition, some people are very keen to tell you how they are suffering, some are terrified when their body experiences pain, whilst others soldier on and try their hardest to hide their pain and remain strong in the eye of the beholder, no matter at what cost to themselves. They find it harder to admit to anyone especially a Practitioner, just how much their pain hurts, or how they are struggling to keep going, as if it would be an admission of failure or weakness. I’ve used this expression a lot, because it’s true, but we all need balance. To be able to share our problems with the right sympathetic ear can greatly help through a crisis.

That in itself isn’t easy for a great many people, myself being one! But as a Practitioner I look at the patient and myself in a holistic way, I take the whole person into account when treating any problem they present. I purposely assess the mental approach everyone takes towards their life, and many a time I have been blown away with the strength and grace people have dealt with problems in their lives. It is often the case too, that people who do not have the ability to share, either because they can’t or don’t want to, find it very hard to relax in any way. With pain, the ability to breathe and relax, in my humble opinion is a fantastic advantage to have. I am not advocating ‘button-holing’ anyone who will listen and go on and on about all your ailments. But at the same time to not be able to share, release, and express your concerns, keep emotions bottled up, can lead to deeper-seated problems when dealing with pain. It prevents the body and energy flowing, which can exasperate pain levels, and weaken the mental emotional side of you.

If some of this resonates with you or someone you know, see if you can find a way to help. Be it expressing your own mental thoughts to a confidante, friend or Professional, or encouraging someone you know to talk and share their thoughts. It could give the sufferer a release they may have been in great need for but didn’t know how to achieve, often feeling they would be a burden, and you would possibly think less of them for ‘moaning‘. It isn’t easy to admit you are struggling.

If talking and sharing isn’t the right process for you, then there is a wealth of other avenues that could help, Counselling, Meditation, Yoga Therapy, even relaxing treatments like aromatherapy, reflexology, cranial massage, facials, there are many disciplines that aid in releasing pent up emotional tension, and therefore helping you have more balance; yin and yang, positive and negative, you know what I mean! Even just taking time out of your every day to allow yourself your special slot to relax and unwind could work wonders. You may find having an afternoon snooze works, or a gentle walk outside, listening to some music you love, laugh with a friend, there are so many things, but at the end of the day, whatever makes you feel good, do it!

Being anonymous is another way to release too. The Internet is a tool that could facilitate that in the form of forums, blogs (this being one!) where you can write your thoughts down. People of like mind can reply with the empathy of knowing what you’re going through. It can be a powerful form of support. Obviously be careful and don’t divulge personal information you wouldn’t want people to know. But to connect with people who have the experience of the same condition can alleviate the isolation that often comes with conditions governed by pain.

Many pain suffering people tend to shut themselves away from the world when the pain strikes, so to be armed with techniques to ease the length of those days, the better. Branch out and see what you can discover, enrich your life in doing so – bonus!

Druantia

 

Ankylosing Spondylitis and Me

25 Monday Jul 2016

Posted by mindbodyplusme in Ankylosing Spondylitis AS, Holistic Health

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Alternative Medicine, Ankylosing Spondylitis AS, Healing, Health, Holistic Health, Holistic Knowledge, Natural Therapies

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.

Druantia

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