Life Before MS
There was a life before MS? Oh yes….so there was! It seems so long ago now and so distant and different, as if viewed through a mist or on a screen – someone else’s reality.
I grew up in the South West of England during the 60s and 70s – what a time, you might think. However, my Dad and Mum were (my Dad passed when I was 19) and are (my Mum is now over 80 and still ‘doing for herself’ in the UK!) quite conservative in their outlook and perspective on life, so we were brought up in a ‘middle class’, ‘what will….think?’ environment. Something which I have battled with my whole life – trying to please my perspective of what others thought/think. Only now, in my fifties, do I realise that I really have no idea what others think so how is it possible to live up to that or please it? And, of course, living with MS now for almost 15 years has taught me not to be affected by what others think anyway – I have enough to do just to ‘manage’ myself!
Anyway, I digress – an almost fatal characteristic, I’m afraid!
What a shock for my parents then, when I announced that, as my eighteenth birthday present, I wanted a ticket to South Africa! It must be said my elder brother, grandparents and aunt had emigrated at various times preceding my decision so the country was not totally unfamiliar to us….but it was Africa and to a European that has many connotations! I will leave them to your imagination.
So, I came to South Africa where I was lucky enough to secure employment as a training nurse. Quite a difference to my musical (I had trained as a classical pianist) and dramatic (I have a certificate in Speech and Drama and Theatre Arts) experience garnered in the UK….and possibly not quite what my parents would have expected!
Anyway, I qualified as a General Nurse (RN) – you know, running all day to assist patients, dispensing medication, assessing conditions and progress (or lack of!), supervising and managing staff, doctors (!), relatives, stock, my managers and anyone else who appeared on the ward – essentially, using my brain and body continuously to effectively and efficiently help others.
And I was good at it. At 23 years old, I was promoted into my first ward management position. Full responsibility, 24 hours a day for everything that happened from the entrance of my ward to the back wall – and I do mean everything!
After a few years of this, I was able to take the midwifery course (quite a step to being a student again and many funny stories – but for another time methinks!) and thus qualified as a Midwife (or, more appropriately, Accoucher – Male Midwife).
Shortly after this, I was offered a job selling medical equipment. By this time I was married and had children so this appeared (and was) a much more lucrative career from which I could support the family. I took it.
Once more, my ‘A’ type personality drove me and within a short space of time I was promoted to National Sales Manager! Over the next 12 years or so, I held various middle and senior management positions in different size businesses from small to large corporate. I often worked 16 hours a day and always put everything I had into my work.
After a spell in the UK, I returned to SA and into nursing. This almost didn’t happen as I was offered a Unit Manager job which I felt I had done successfully before so why do it again?
I will always be so grateful to the then Matron at Umhlanga Hospital (Berry van Vuuren) for convincing me to take the job as it was a few years afterwards that my health really started to play up. I had a heart ‘event’ in March 2000, a cervical fusion in the July and finally diagnosed with MS in the November.
Yes, my 40th year on this planet was quite an event!
I was, and am, so grateful to the Netcare group as the policies and procedures they have in place for their staff have ensured me disability cover and continued medical aid without which I would probably be dead – if not from illness then from depression or by my own hand.
How do you continue to live at 40 years of age being totally dependant on friends and family? I consider myself so fortunate not to have had to face that (until recently) and have so much respect for those that live under those conditions. Netcare and my ex-wife may never understand what their support means (and meant!).
My MS diagnosis came about after my cervical fusion and is quite ironic. I was in charge of the Neurosurgical ward and so saw my surgeon everyday as he came to do his ward rounds. The surgery was done extremely well and was necessary – four of my cervical discs had prolapsed which we thought was the cause of all the muscles spasm, numb hands (which had started in 1995!), etc., etc.
What a surprise when the symptoms gradually returned after the surgery! My surgeon, concerned, sent me for a follow-up MRI which is when the MS type cervical lesions were first reported. A brain MRI, lumbar puncture, etc. were then carried out to confirm the diagnosis.
I remember sitting at my nurses station, opening the scan and reading the report. What a shock!
At first, I couldn’t take it in. How could this be? It couldn’t be true? What would happen now? The emotional part of me spun. I pushed back from my desk staring at the report in disbelief.
Finally, I looked up and the first thing I saw were the two quadriplegic patients I had on my ward at that stage. I always kept my ‘quads’ in beds where I could see them from where I sat so that I could keep a close eye on them. One could move his eyes and left shoulder only, the other could move a little more shoulders, neck and head. However, both had no feeling or movement from chest down.
In the midst of the shock of my own diagnosis, at the sight of these two young guys, my first thought was – “Well, however tough this is going to get, it isn’t as tough as that!”
I have kept the memory of that moment throughout the last 15 years. It has helped me enormously in those ‘sorry for myself’ moments which we all have and has given me enormous strength to keep going.
Ironic that I have spent much of my nursing career caring for neuro patients only to find myself ‘the patient’! Quite an adjustment at first and I still warn the nurses when I go for IV Cortisone that I am probably going to be their worst patient! Ha ha! (except I probably am!)
Again, I digress!
After my diagnosis, my condition deteriorated rapidly. I was initially diagnosed with Primary Progressive MS and was not expected to live out the year 2001 (my ex-wife and myself were planning how she would best use the insurance money after I was gone!). By the February, I was unable to perform adequately at work and requested to be medically boarded. What a stressful process!
I had to effectively resign (the company is unable to hold your post open whilst the insurance people decide on the boarding) and, in the knowledge that I would in any case be unable to work if the boarding was not approved, found it an extremely difficult period to get through. The process takes about 3 months before a decision is made but, again, Netcare supported me through this. I was so fortunate.
By April the decision was made in my favour and I have been on disability ever since. I am so grateful for this but be careful – the payment does not increase with inflation so, after so many years, the value has dropped significantly plus you are not allowed to earn any other income (if you can, why are you on disability in the first place?) so, it becomes a very tricky place to be.
Over time, you become dependent on help and your standard of living decreases.
I digress again!
The course of the MS then changed (see later) and over the 15 years has been more Relapsing Remitting to the extent that I was reclassified last year!
Life with MS
So, life changed dramatically!
One day you are at work, the next day you wake up in the morning and wonder what to do! Of course, at that stage, just brushing my teeth was enough to do for the first hour or so. One activity – rest. Another – rest! And so the day went on.
At first, some of my work colleagues would come visit briefly during one of their breaks (we lived close to the hospital) but life and work gets in the way and their visits became less and less.
We changed cars as I was (and am) unable to drive a manual but can manage an automatic – I consider myself fortunate, especially as there have been times over the past couple of years when I could not drive. I am lucky to have friends and family around me to help.
I used to go out to a mall for a coffee just to get to see people and mix a bit. Of course, the TV becomes your closest ally! This was in the days before the internet was as established as it is today and technology so advanced.
We moved house to be closer to my family so that I could ‘pop’ into their office during the day and at least interact with people for a period, however short! Fatigue has always been an issue.
So, how do I cope now?
I have learnt that the brain is a powerful tool and our subconscious does just what we tell it! Unfortunately, we are not always aware of the messages we give it.
I spent a lot of time increasing my awareness of how I think and how that affects how I am.
I live with MS. Yes, I do mean ‘live with’ – not ‘suffer from’ or ‘battle with’ or ‘fight’ – but LIVE with.
This is not a perspective I came to lightly.
Denial, anger, feelings of self pity and depression seem to ‘come with the territory’ of any traumatic event – and I’ve had them all – and sometimes still do, for brief periods (hopefully!!) – and that’s okay.
One of the many things that I have learnt on my journey with MS, is that HOW I think about myself, my world and my life creates that very thing. So, if I’m suffering from MS, guess what — I suffer!!! And if I’m living with it — I find ways and means to do just that.
I’m not trying to demean the pain and the limitations and the adaptations I have had to make in my life – I am accepting them and making it less painful to manage all these things – both for myself and those around me.
No matter our perspective and response to any situation – it still simply is.
So, I ask myself the question – accepting this is the way it is, can I do anything to improve it? What can I learn from it? How can I use it to help me become a better me?
During my nursing career, I helped many people to manage both physical and psychological pain and limitations. I have learnt that the subconscious can be a mean bedfellow! It simply responds to what you tell it – with no judgement.
If you believe you can do something, your mind will find ways to achieve it (even though it may not be in the way you perceived or thought it might happen!) and vice versa – if you believe you cannot, well, then you can’t and you don’t.
I have seen and felt this too often with too many people – myself included now – to believe otherwise.
And the crux of this? — Together with the energy that motivates us all (however we relate to that) — IT IS OUR CHOICE.
We choose how we want to perceive something – whatever it may be.
We choose our response to every situation.
Many wise people have written that we cannot always choose the things that happen to us, but we can, and do, choose our response to them.
It seems that much in life is about our perspective and the choices we make – and how our response in the now leads us through to the next situation.
Our choices then become vital to our achievements and our sense of fulfilment.
I love the prayer – ‘God grant me the serenity to accept the things I cannot change, the courage to change the things I can and the wisdom to know the difference’ – and living with MS certainly challenges us with this!
So, I choose to find the best way I can to live with MS.
Just like people who live with cancer, diabetes, HIV/Aids., etc.
I read the latest summaries on the research – normally just the conclusions as the details can be a little overwhelming (!!), and, at the end of the day, I really just want to read the results and see if and how I can apply any of these to my life and how I live.
I have looked at many different therapies and approaches and have tried those I feel comfortable with – some have helped and some not and that’s okay. Each of us is different and each unique, therefore, what works for one, may not work for another – I’m comfortable with that.
I’ve tried the different medications and have ended up only using those which help the spasms and pain plus the vitamins and mineral supplements that I have found benefit me – after much research and many ‘try outs’!!
I’ve chatted with my Neurologist about CCSVI and await more info both regarding diagnostic techniques and treatment options should the neck vessels be a problem. We are also now exploring Tysabri and I am following Stem Cell research and treatment carefully. I admire those who take the leap now and lead the way.
I have explored how the body works. What energises the cells of each different organ and system. How this energy flows in and throughout the body and how it is affected – both by our own thinking and behaviour and those of other people that we have contact with and allow in.
The list of how my mind and body are affected by MS, like many of us, is long – and, again like many of us, it varies!! Just like life.
So, each day is new, each day has its own challenges, and each day I get to learn more about myself and the world around me. In fact it is more than that, deeper. It really is each moment. They say the present is all we have and I am finding that more and more the case.
Did I do that before being diagnosed with MS?
Maybe, but definitely not to the depth I do it now.
So, what’s changed?
Well, since my MS diagnosis I look at everything differently. When getting into your jeans or food into your mouth becomes a major logistical issue, the world takes on a different hue!! J
Things I took for granted become precious.
Time I used without thinking becomes a special commodity.
Life, that used to pass me by, or I would ‘get to tomorrow’, now has more meaning and I would rather ‘do it’ now, if at all possible.
Every moment is special and sacred – to be fully experienced. Something to be aware of, to be seen and sensed, tasted and touched, listened to and shared.
Yes, I am unable to do many things I used to – how much more precious those I can do and the new things I learn.
And as each day passes and I move through the experience, I become more aware of the opportunities that present for me to contribute more, learn more and grow more. Indeed, the MS itself is one of these opportunities.
What a trip!!