Living with chronic pain and going on holiday can be quite stressful and end up defeating the purpose of the holiday to relax and unwind.  For instance, the journey alone can be enough to wear our batteries flat and all we’re doing is sitting on a train or in a car or bus, unless you’re the driver and it becomes even more difficult as you need concentration and good memory recall to get to your destination.

Neither myself or my hubby drive and we rely on Public Transport to get to places and we travel on the train mainly to Cheshire and Cumbria and sometimes by car if our lovely friends & family drive through and pick us up.  Over the years my hubby and I have learnt something new each time we’ve travelled from the kind of luggage bags to take, which wheelchair, how can we transport walking sticks but still have them accessible, when it get’s cold have I got hat and gloves in an easy to get access to bag so that hubby doesn’t have to rake through all the bags to find them…. and many more.

When travelling in a wheelchair it is easy to forget that the majority of Joe & Jane Bloggs aren’t aware of disability rights or how to act or what to say to us.  This can complicate train and bus journey’s no end and usually with much distress as people don’t like being asked to ‘kindly’ please move to let the wheelchair in… the wheelchair!!  hang on a minute it isn’t just a chair, there’s a person in it…. ME 😮

Oh! it bugs me something rotten LOL   but I have accepted that it is just a part of life which I must just deal with & move on & I have.  However, there are times when that is impossible due to the nature of the situation and people involved.

My ‘impromptu’ holiday was 10 days back in my homeland of West Cumbria and The Lake District where my hubby and I stayed with family who came to Sunderland and picked us up. There’s always an issue of how to pack the wheelchair and luggage into the boot of the car.

We had a comfortable journey in the car so I was ok the next day with exception to my knees and hips not being happy about being in the seated position for so long, but that is normal for my HMS and Fibro that is how they work together to try to beat me into submission!  I always lather knees and hips with my pain gel before travelling and again after the journey at bedtime 🙂  I find that it does help to minimise some of the inflammation from the bursitis in my hips and the swellings on my knee caps as well as helping to minimise the pain felt as a result of using it.

Of course! it has taken many years of Chronic pain to learn what works for me for differing situations and so I must say please remember this technique may not suit everybody but it works for me.

The last thing I need is to spend 2 or 3 days recovering from travelling when I’m on holiday and need as much verve as I can muster to enjoy the holiday activities (with minimal pain and stiffness)   🙂

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Don’t want to look and feel like this!!

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I went to Dumfries, Fleetwood and Morecambe whilst with the folks in Cumbria so I did a lot of travelling by car and long journeys at that!  However, I’m very lucky to have such supportive family members who respect that and stop so that we can have a break and I can stretch myself out and crack everything back into its proper place…. no, really!  Thanks to my HMS this is a must do for me or I end up like a cardboard cut-out and fit for nothing LOL 😀

I was very stubborn and refused to get in my chair as I wasn’t having elderly folks pushing me about when hubby wasn’t with us, so I resorted to using the 2 sticks and pacing myself and stopping to sit where I could find a seat, whether it was the street or in a shop.  I have zero tolerance for standing so have to keep moving and can only tolerate that for short lengths of time so when looking for trainers for my hubby I was more interested in finding a chair!  LOL

Standing about can spiral me into a mini-flare for a few days if I’m not careful with the most awful fatigue  😮

Pacing is of massive importance to enjoying my holiday time and the best way for me to avoid Chronic Fatigue taking over so having the odd rest-up and relax day is as important as going out for the day.  I have become better at pacing over the years.

Finding a pacing routine to fit our own individual situations can be stressful and take many years to understand and master.  We are taught to watch what we do, count our spoons, don’t push ourselves too far but we don’t know from one day to the next what we can manage until we get up in the morning.  This is why I think it took me so long to get used to how to manage my energy and mobility levels so that I could enjoy a holiday.

I suppose the moral of my story is that having a holiday is possible as long as we remain positive and be open about how our illness is affecting us.  Afterall other people won’t know until we speak out and tell them 🙂

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It is important to stay as positive as possible and to try something out first rather than to avoid doing it.  Remember ‘if you don’t use it… you lose it!’

Overall, my experiences as a disabled/unabled person were good with not many hiccups, and the only situations were relatively minor and unavoidable.  I found people to be understanding and would get me a seat…. ( I must have looked haggard LOL) or, they would speak to me normally instead of with pity and no interest.  People would listen to me when I explained my situation and would understand… many people wanted to know more about Fibro and HMS thinking they may be the answers they’re looking for!

How I answered the questions regarding invisible illness:

I was asked?

Invisible illness??? “why are they classed as that”

My answer:

” Do I look sick?”

General reply:

“No! …. ahhhhhhh!”  penny drops!

“I never looked at it that way before”

I’d like to think that I’ve helped a few people understand what life is like with Chronic Pain, Fibro, HMS Chronic Fatigue and invisible illness whilst on my holidays and have come away feeling rather positive instead of flustered and frustrated as I usually am.   😀

We were meant to be getting the train back to the North East but we acquired some things from mum’s house clearance so we packed the car and they drove us back.    No messing with trains and bags and wheelcahirs 😀  much to my hubby’s relief 🙂

Thanks for taking the time to read my epic post!!

Carole Sian Scrafton – Co-Founder of FibroFlutters

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Something for consideration….

The only way to resolve the issues of people not understanding how Fibro & invisible illness affects us is to talk about it and help to raise awareness into the need of education of Fibromyalgia and other invisible illnesses.

I have shared a little of my life with you and hope that it helps people to understand the mindset of a person with chronic pain and invisible illness.  Sometimes we are not believed because we don’t look sick on the outside but we can change the stigma of that and help to make ourselves more visible.

September is Chronic Pain Awareness month with, also, a week of Fibro awareness and then following on from that awareness drive for Invisible illness.

My motto’s as a support group leader are as follows:

Let’s help to make ourselves visible  

Fight for Fibro and SHOUT it LOUD for Invisible illness

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Header Fibro Awareness picture is courtesy of Dear Fibromyalgia and can be found on FaceBook:

facebook – Dear Fibromyalgia Community page – fibromyalgia stories

For information about Fibromyalgia and how to raise awareness please visit fmauk – Fighting for the freedom from Fibromyalgia