Journeys of Discovery – 2

In the last post, I looked at the why of travel and in this one, I’d like to look at the how. When you are disabled, journeys take on a whole new character. Spontaneity is definitely out. Every journey needs to be planned with the attention to detail normally reserved for a space launch. Though not everywhere will be accessible, there is more than enough that is. The trick lies in being prepared.

God bless the National Health Service

My cancer is in remission and my MS behaving very well at the moment, but I am aware that either of these may change. Travelling within the UK means that there is always a hospital nearby should things go awry and a doctor who will understand my problems (and who I will understand).

Knowing this means that I travel without the added anxiety of ‘What if things go wrong?’ If they do, I shall be treated with the same standard of care I would receive in my home town. This is not to say I shall never travel abroad, but travelling within the UK is certainly less stressful.

Medications

By following the OMS programme, I have had the good fortune to not need any medications, though most folks with MS do. Many of those drugs require refrigeration and this must be factored into accommodation requirements.

One of the many complications of a chronic condition is that even minor ailments can escalate rapidly. MS makes it more likely that you will suffer from urinary tract infections and to add insult to injury, these (and many other infections) may prompt a ‘pseudo’ relapse. Though you should recover fully once the infection has been overcome, longer term damage may occur. As a consequence, I always take a course of antibiotics with me to avoid any risk. My GP was more than happy to oblige me in this – and I’m sure yours will be too!

Mobility

Without question, the most infuriating aspect of my condition is the inability to walk any distance. I’m blessed with the strength to toddle about for a while, but soon my legs will start to feel painful, then stiff, my left foot will drag and then refuse to work at all. How long or how little I can manage varies considerably and I need to be prepared for the worst.

There are numerous mobility aids on the market to help, but like medicines, they come with their own side-effects. Each of these can be minimised with a little research and testing.

Walking Sticks

Most of us will need a stick at some point when placed in unknown surroundings and for many, this is all they will need. Keeping a fold-up one with you is a sure way to avoid the horror of discovering that the parking (even disabled bays) are further from your destination than you thought!

When I was first given a stick, it was an old-fashioned wooden one. The physio checked it was the correct height, but it was not the correct style for me. My hands and wrists soon began to tire and ache. Some kind soul mentioned that I should get an ergonomic one with a wide handle. Though not so common, they are easy to find. Just make sure that you get the correct one if you are left handed!

Wheelchairs

I have a wheelchair, but it is not something that I use very often. Unfortunately, the lighter, travel ones do not fare well on uneven surfaces and I keep mine for airports and museums. Nor do I like the fact that, since I do not have the strength to propel myself, I require someone to push me. I can’t say that I enjoy the loss of independence this entails, but it has enabled me to see some fabulous exhibitions in comfort.

Mobility scooters

My absolute favourite aid is my mobility scooter. Do I feel self-conscious tootling about like someone twice my age? Yes, is the honest answer. Would I rather stay at home? No.

I found an off-road one that would happily carry me around the paths of any National Trust property. This is a bit of a cumbersome beast, however, so we need to take the car to transport it and my husband needs to be with me to lift it in and out and assemble it.

Finding what is right for you is crucial. The internet is the perfect place to start to find out what is available and then I’d recommend going to a large showroom where you can try things out.

If budgeting is an issue, there are always second-hand options available. Your local MS group would be the best place to start a search for reputable providers.

The advances in mobility aids are staggering. A friend of mine has a wheelchair that can go up and down steps, on the beach and well, wherever. The price tag is rather beyond my budget, but it is good to know these things exist should my Premium Bonds come through.

Exhaustion

Exhaustion in MS is an invisible disability and for me has been the most bothersome. There is not much you can do when you can’t wake up.

Following the OMS life-style has helped minimise this, but I do need to figure in rest days and naps to keep me going. Sometimes the excitement of travel means I go far longer than usual without additional sleep – but when I get home, I need to clear the diary and sink into oblivion.

And an invisible disability is a disability all the same. Though few people will understand, it is vital that we express our needs without fuss or complaint. It is easy to be bullied into doing more than we are able and suffering the consequences of hours or even days in a fog of exhaustion.

Toilet stops

The joy of the UK is that there are always service stations, cafes or public toilets nearby. Yes, MS affects most people this way too! So, we factor in very regular stops. An added benefit is that it enables us to stretch legs and reduce the stiffness that accompanies sitting for long periods. It means that journeys take a little longer, but they are certainly more enjoyable.

Heat

Someone very wittily remarked that heat to an MS sufferer is like Kryptonite to Superman. When I was first diagnosed with MS, heat didn’t seem to affect me at all and I enjoyed hot baths and showers and sitting in the sun. Not any more.

My intolerance to heat is now so marked that I actually take a cold shower after my hot one, because I came to the realisation that it was the heat exhaustion prompted by my morning shower that left me having to lie down less than an hour after I had got up.

Choosing destinations for holidays is therefore extremely important. You are unlikely to enjoy a trip to Southern Spain mid August burrowed in the dark of your hotel room. The up-side is that travelling off-peak is ideal and holidays in the UK perfect.

Accessibility

Check and check again! There have been a number of times that I have visited locations that claim to be accessible and find they are not or that only certain paths and the cafe are!

The UK is generally very good at being genuinely disabled friendly and most places will make real efforts to allow you as much access as feasible. Just don’t be afraid to ask. Portable ramps are often kept out of view, but they do exist and guides are really good at telling you what is accessible and where there are places to rest. I have never been treated with anything but kindness.

Some places go even further – providing regular and off-road wheelchairs, scooters and guided buggy tours. These resources are limited though, so always check/book before you leave home!

Modes of Transport

I confess that I rely almost entirely on the car for my transport in the UK. Although I know that systems are in place on trains and buses for the mobility-limited, they just don’t work for me. To reach almost anywhere, I need to negotiate London and the mere thought gives me palpitations. I shall try to be more brave!

The Grand Tour

Travelling with a disability sometimes makes me feel like an English gentleman on a grand tour. The car is packed with mobility aids, suitable clothing for all temperatures, emergency food supplies and supplements. I require a driver, helper and companion (roles my husband fulfils admirably!) Thus equipped, I am ready to go anywhere. This country contains far more wonders than I could possibly visit in one life time and the natives are definitely friendly.