Holiday Season & Stroke

It is that time of year again when many are planning their summer holidays, who can blame them with the sudden change in the weather, our British summer! plus who would not welcome a well-earned break, along with the opportunity to possibly visit new places? This is something that used to be filled with excitement and pleasure, along with adventure for many of us pre-stroke days. Such a trip these days presents a very different set of emotions before departing, often fear and dread – in the words of Melanie Reid, ‘The sense of freedom that comes with travel has gone. But I can still see, hear – and laugh’.

Melanie is the author of a column in the Saturday Times magazine, she is now a tetraplegic following a riding accident in 2010. Not only a sport close to my own heart but her humour is so very similar to mine too. A lady I admire.

Prior to stroke we go to bed the night before our holiday often not sleeping deeply due to the excitement of the place we are visiting or the fact we are doing something new. These days we do not sleep for very different reasons, however positive we are by nature, we mentally go through all possible scenarios for fear of ruining things for others, things like – if on a ferry or ship how will the helicopter airlift me away with little or no disturbance, inconvenience to others – how will I manage steps, slopes, uneven surfaces or cobbles  etc especially for those in wheelchairs. For those of us who can now walk with the aid of certain gadgets but still have limitations and need assistance, plus possibly struggle with fatigue and blacking out, we worry about when and where we can have sufficient breaks, sleeps and places to sit down. Where our room or cabin may be situated as now that our brain is so frustratingly super sensitive, the slightest noise or sound we possibly cannot sleep, without sleep we become unwell.

You want to snatch at bits of the old you where and whenever possible, but in my case, I am torn as I have always been very sociable yet in these situations it is easier not to meet new people, as they obviously out of kindness, want to know what is wrong what the difficulties are, and if like me, you are doing your utmost to hide and disguise them – have a holiday that resembles some normality, you don’t want to acknowledge them in conversation.

There are always, however, reminders of your difficulties, I remember lying by a pool trying to read, at the time I was still struggling to read again, the brain was not making it easy to relearn. Also, I cannot cope with heat now like I could previously, so I wanted to go into the pool to cool down, yet again another reminder of how dependent I am on others. I had to ask Nick to help me into the pool, not able to get in alone. Once in, I needed a woggle to be able to stay afloat and I could not get out without help. At the time I felt extremely vulnerable and when children got into the pool, I felt extremely nervous. I feared if I was bumped into I would fall off the very thing keeping me afloat and I would go under the water quickly, yet prior to my stroke I loved swimming and had been a strong swimmer. All these things are hugely daunting.

I am sure also that in reality no one actually noticed me at all, but having to be helped to the edge of the pool, removing my FES, placing my stick down and being lifted into the pool, I did feel extremely self-conscious, and nervous, as though everyone was watching me.

I remember a Twitter friend who had done their research prior to going away and booked a disabled friendly holiday, yet on arriving found that the holiday providers had not a clue in reality of what is required for people like us, people with difficulties but who no longer require a wheelchair permanently – yet still have major difficulties and rely on assistance. This lack of knowledge and understanding caused great distress and unhappiness which could have had a detrimental effect on the person’s health.

There was also a case where a man tried to book his wheelchair onto a well-known budget airline and they charged him, much further down the line they eventually apologised but obviously it should never have happened. Another example of the lack of understanding regarding our needs and once realising not always being helpful or empathetic off our emotions.

You may at this point be thinking – this is not my normal positive slant, but I feel it is necessary to point out that it is only natural that we should feel nervous and apprehensive with the difficulties that we experience, as we venture out on experiences from this new platform we find ourselves functioning from. It is at this point however, I feel it necessary to stress and write that it does become easier and we do still share laughs, fun experiences and build new types of happy memories.

I have since been on other holidays, and I would be lying if I did not admit that on my first flight I was nervous, it was not helped by the delay beforehand,  but once I had achieved it I felt stronger and a definite sense of achievement.  I have since been on holiday with  Nick, my son and his girlfriend and we all had a wonderful time, despite my limitations, which everyone works around. It does not stop them doing what they want to do and we can still do things together too.

Stroke and disability do bring their limitations but they cannot take away our spirit and our determination, along with laughter and enjoyment too, all be it different. I strongly encourage you to if you haven’t already, book a trip and venture out. There is help for us at airports, assistance onto aircraft and preventing difficulty at airports either end. It is necessary to pre book such help as I am sure you imagine. For those truly adventurous types, or ones who have traveled several times already post stroke and by now feel more at ease. There are specialist companies who organise activities for disabled, one example being skiing. if by reading this you feel it sounds impossible, I ask you please to look on youtube at some of the amazing people skiing, being able to leave their wheelchair behind and with the correct equipment and guidance, ski – feel independent and active. that feeling of freedom, I admit the admiration as I viewed these people skiing filled me with emotion so deeply, I could not hold back tears, tears of joy for their achievement.

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