I forgot to mention the swimming episode in my last blog.
3 days ago the 3 of us went to our local pool at around 09:00 in the morning. I went with my walker as the distance is around 500m to the entrance of the pool and I figured that it would be good for me to put some effort into getting there despite there being easier options available. After 20m of listening to me swear and curse, my wife suggested that she fetch my wheelchair or a helicopter. But I in the interests of a stiff-upper-lip and BACKBONE (whatever THAT is) insisted on persevering with the walker. So eventually we all made it to the pool where I discovered that if I had bought my golf-cart I could have driven right up to the edge of the water quite easily. Next time then.
After 3 hours of really good fun with my wife and 7 year-old son in a heated pool (my son annoyingly does the Australian-crawl really well) we left. The result for me was pretty awesome – greatly increased feeling in both feet and legs, arms well exercised and even my wife got in the water too! So all-in-all a very worth while exercise that will be repeated again, this time with my golf-cart too.
Someone online asked me recently why it was that I had left several groups on fb. The answer is solely due to me needing to evade negativity as much as possible. With this disease, I have come to realise that without almost fanatical positivity, you sink pretty quickly. I don’t want to be reminded of how hard or difficult day-to-day tasks may be or how my body is becoming slowly more decrepit or what the future may or may not hold, I know oh boy do I know. So forgive me but I don’t want to be reminded. Recently (perhaps due to the pool visit) all 3 of us picked up a ‘bug’ of some kind that resulted in a raw throat, coughing, sniffing and generally feeling like hell. I have no doubt that it will pass pretty quick, but the effects are amplified for me and as another side effect I can barely walk. Last night (after seriously battling all day) I got up to go to the toilet and it was only when I got back to bed that I realised that I had got up half-asleep and walked across the room unaided without falling over. I was so happy I got up again and walked/stumbled about for half an hour. This morning it was back to normal again.
So. MS is different for everyone. And the outcome is different for everyone too as there is no linear progression to this disease and what works for one doesn’t necessarily work for another. I HAVE TO BELIEVE that there is some hope for me otherwise its all pretty pointless. We have some friends (who shall remain anonymous) who really battle to deal with me, my condition and what this entails for me and my family. They approached the entire situation from the point of me being somewhere between being completely broken and death and that I was dragging my family down too along with me.
Now, I have incredible guilt regarding my family for all sorts of reasons – my wife has had to become the main bread winner and battle and overcome all sorts of issues (successfully too). She also has had to deal with losing a spouse and grieving for that, my son has had to learn that he has a father who doesn’t quite add up against the other kids fathers and who battles to accompany him in the simplest of tasks. But what we have needed all along was support and encouragement form ‘friends’ NOT dread and doom. After we made a concerted effort to become more positive together – as a family – there was a big difference. I now use my golf-cart much much more than previously and it gets me around and about much more and part of life again too. I can accomplish things that were previously out-of-bounds to me I take my son to school and do silly things like Friday road-patrol. We have started going out together as a family and it has become pretty inspirational to be able to plot and scheme our next adventure – even with me in a wheelchair.
‘Attitude determines altitude’ is an adage that I believe was used by an airline in an ad campaign a few years back, but it is so true. If you believe that you are sinking you will and likewise if you believe that you are rising up so you shall. In another lifetime I had to pass the SOLAS (safety of life at sea) test for cruise-ship employees and one of the stories that our instructor told us stuck in my head. He said:
‘There was a shipping disaster a few years back where a container ship sunk. The crew abandoned ship into 2 life-rafts capable of holding 50pax in each life-raft. They tied the 2 rafts together and drifted across the Pacific Ocean for around 2 weeks before being rescued. In one of the life-rafts the junior officers had organised the occupants into regular watches and divided up the water and supplies, putting various people in charge of them and their use. Also they kept a close watch on peoples morale and encouraged them to overcome despondency and feelings of doom by getting everyone to buy-in to believing that rescue was just around the corner— all 25 of the occupants survived. In the other raft, there was no organisation and everyone was left to their own devices. They quickly went through all their own food and water and had to borrow some from the other raft. Several people could not handle being so isolated without knowing what was to be their fate as each day was as bad as the previous one without any sign of rescue or hope and 3 people committed suicide.
The lesson in this was clear. Without a bit of effort and without pursuing positivity the outcome WILL be much worse if you give in to despondency and ‘reality’. You don’t know WHAT the outcome is going to be, so while we with ms are in our life-rafts better we get organised and approach each day with positivity as the alternative is to sink and only to sink as we already know how hard things are at the moment.
Better to imagine that there is a better outcome out there somewhere!


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