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