I was given a diagnosis of Lupus in 2004. Lupus is an autoimmune illness whereby the body mistakenly attacks its own healthy tissue. This can cause fatigue, pain, inflammation and all can restrict my mobility. In 2012 I was also diagnosed with Fibromyalgia.

At the time of my diagnosis, I was travelling across Thailand, Australia and New Zealand. My symptoms accelerated due to the frequent flying and I was hospitalised in Auckland. I will say that my body chose a great place to get ill as my hospital room overlooked the most beautiful view of the city and the botanical gardens! (I’ve learned to look for the silver lining in unfortunate situations)

Something that I find very frustrating about life with Lupus and Fibromyalgia is that they are both very unpredictable which means that it can be hard to assess exactly how much help I may need.

Taking a trip when you have a chronic illness takes a certain amount of pre planning. Depending on the destination and length of the trip, the way in which I prepare for it will vary.  Fortunately, I’ve learned a few things along the way which have made the biggest difference in helping me to get out and about.

I think the most valuable advice I can give is to accept the help that is available to you.  A wonderful Rheumatology Nurse specialist gave me this advice many years ago and it’s changed the way that I approach many things but especially travel.

For example, many people may be entitled to apply to the Blue badge scheme without realising. When I reapplied for my Blue Badge, I noticed that it is now accessible for people classed as ‘long term sick’. I feel like many people don’t know about this change or even that you do not need to be the driver. A carer, friend or relative can use your badge as long as you are a passenger.

Being able to park closer to an entrance or to have fewer parking restrictions can make the biggest difference to your day. I am someone who tries to live by a pacing and planning lifestyle and so having the option to walk a little less each day is so beneficial.

 For travelling further afield I’ve found that it’s super important to contact the travel provider to inform them of your disability. A few years ago when I was due to travel long haul, it happened to be during a really bad flare up and I had really restricted mobility. Luckily I had requested ‘special assistance’ meaning that I could use a wheelchair and wouldn’t have to walk the distance from check-in to my gate. As I suffer greatly with fatigue, this lengthy walk across Heathrow Airport would have left me complexly exhausted. The great thing about requesting special assistance is that you can cancel your request if you don’t feel it’s necessary on the day. If you are travelling alone, someone will be there to assist you and it’s completely free!

Having lived with my illness and disability for 15 years, I feel like I have mastered the art of managing it at home. However, when I have to travel, I have to essentially bring that life along with me.  This can mean travelling with medicines and things like sharps bins. I always get medical clearance from my doctor just in case and it’s always smart to get a letter for the airline if you do have to travel with medication. I personally like to take the tablet equivalent of an injection with me as sharps bins are cumbersome and inconvenient. It’s also really important to try and keep all medication in their boxes and even perhaps take a copy of your repeat prescription.

Disability and illness may be one of the most challenging things that a person can face but we do deserve great trips, days out and holidays. Try to make the most of things that are available for disabled travellers like extra leg room, coach and rail discounts, priority boarding planes and sometimes even discounted admission pricing!

My final piece of advice would be to try and identify potential barriers and how to overcome these before setting off. Think about the ways that you can have a more comfortable experience. For example, does your hotel have a lift? Do you need to request an accessible room? For complete peace of mind, do you have the appropriate travel insurance?

The more preparation that you can do before you leave, the more you will get out of your experience. Keep medications nearby, pace yourself and remember to allocate some time to recover when you get home.

Happy Travels!

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