I was watching Star Trek: Discovery a couple of months ago. One of the main characters, a human called Michael Burnham, was brought up by and trained in the Vulcan ways. For those who are unfamiliar with the world of Star Trek, Vulcans (you may remember Spock) strive to be very logical thinkers. As a human Michael was realising that she could hold quite conflicting emotions at any one time and was expressing this to her human comrade Ash Tyler. He responded simply by saying,
that is what it is to be human.
When suffering from a chronic illness, any activity outside your usual comfort zone tends to come with a great deal of conflict. The excitement and anticipation of the experience, such as visiting a friend, going out for dinner, or as discussed in this blog leaving the comfort of your home for even just a couple of nights; accompanied by the fear, grief of what was, as well as the what ifs and the unknowns.
Recently, I took the step of going out into the vast wilderness of outside my home for two whole nights. I thought I would share my experience in the hope that it could possibly help other people in a similar situation to explore the possibilities of what they might be able to manage, finding the balance of taking a leap of faith, to being as organised as possible to make the trip go as smoothly as it can for both you and your loved one(s) and/or carer. I hope also that it will help anyone going through any difficulties of their own, not to feel so alone.
Everyone’s experiences and needs will be completely different than my own, but here is a little overview of my checklist and behind-the-scenes research, which most definitely, with a bit of added luck and the support of my partner, managed to make the trip a success.
1. The bed
A bed, a night away, with your partner, sounds saucy right? Nope! It’s all about the comfort. My family have frequently referred to me as the Princess and the Pea or Goldilocks. A completely accurate description! When staying overnight in a new bed with chronic pain, and taking frequent rests throughout the day, to pace yourself as you do at home, it really does just have to be JUST RIGHT. So that is where it began, a bit of research, even a visit if you can and hey presto at least you know whatever happens there is a good chance you can get nearly as comfortable as you can at home.
The distance that anyone with a disability or chronic illness can travel depends solely on their unique circumstances. The length of time in the car, or any other vehicle may be limited by pain, fatigue, dizziness, nausea, bowel problems and a whole range of other symptoms and difficulties. So it really is about working within your limits, looking at a map and figuring out what parts of your own country, or if you’re fortunate enough to be able to travel to other countries without causing a major flare up, thinking about what choices you have. A lot of people have to experiment with a range of creative ways to travel from A to B. A lot of people like me are unable to sit for any length of time. Because of this I travel with the car seat reclined, and I know from a sitting disability group I belong to on Facebook that other very creative people have even came up with the idea of putting a small mattress along the back seats, and developing a variation of a seatbelt, so that they can lie completely flat during their journey.
3. Accommodation, activities and accessibility
Personally, the internet has provided me with the ability to interact with the world in so many innovative ways, from the comfort of my own home. When I started researching local hotels, I was really impressed that some of them provided virtual tours. The website of the hotel I chose enabled me to see for myself the distance between the entrance and the lift, and to the dining area. This gives you the amazing opportunity to prepare yourself not only physically but psychologically. It was the same for the few activities that my partner and I wanted to do. I could go on Street View and actually follow the streets, look at the parking areas, investigate whether I would have to walk any distance from the car to see the beautiful scenery, and if so how far and what was the terrain like. Excitedly, even if you are not actually going anywhere, it really is a lovely way to virtually explore some of the beautiful places the world has to offer.
The second important part for me has been learning to ask for what I need. This has enabled me to do things that I would not be able to do otherwise. For example, ringing restaurants beforehand to check if they have a tall table to stand beside whilst eating, inquiring whether they would be happy with me ordering beforehand and arriving when the food is ready, has allowed me to go out for something to eat from time to time … and I do love food! So as you can imagine being able to ring the hotel and feel comfortable in asking these questions was very important. The lovely lady I spoke to was more than accommodating and made me feel very at ease. Although I am getting better at it, doing this is still not easy for me. She booked us a beautiful disabled room with a sea view, located just opposite the lift when you reach the first floor. Even though they did not have any tall tables, they located one which they placed in the foyer of the hotel, where we could see the sea and eat in a quiet and beautiful space. And given my love for food, I was extremely excited at the opportunity to eat three courses on both our nights away. It may have taken us four hours, with all the resting in between, but blooming hell we enjoyed it!!
Again, every person’s individual needs will be different, it may not be possible to get around them all, but at the end of the day if you do not ask you will not get, and you only have one life.
4. Home comforts and essentials
Everyone who goes away, whether it is for a couple of nights or a couple of weeks, have certain items that they either need or like to bring with them. I have to admit it has taken me a while to become comfortable in saying to myself and others, that there are certain things I need to bring with me, even if it is only going out of the house for a few hours. Again, this will vary for everyone but just to give you an idea, here are some of the things that I found myself packing for our trip.
Of course, the primary thing for most people with chronic illness is to make sure they have all their medication and aids needed to get through the day. I have learnt over the years that bringing my own pillows, for both my head and underneath my knees, greatly help my ability to get comfortable. I also took extra medication that I am allowed to take on particularly bad days, just in case.
Another thing I rely on a lot is heat or ice packs during the day depending on the type of pain I am experiencing. Prior to the trip I decided that this would not be possible, however whilst there I realised that I could have brought a hot water bottle and filled it up with the kettle, which will also help with the fact that I get cold very easily.
Whilst away, I struggled somewhat to get on the bed as it was quite high, and because of my need to rest quite a lot I was having to get on and off it regularly. Rather than continue to unnecessarily struggle with this, my partner very kindly went to the local Tesco’s and brought me back a little stool, one of those cute ones that children use when going to the toilet. We had a good giggle with the lady at the front desk about our ongoing creativity, and it is now kept in the boot of the car, in case it is ever needed again.
5. Psychological toolkit
We all have our own unique psychological toolkits, patterns we have developed to help us get through this roller-coaster ride called life. Some tools are helpful, some unhelpful, some conscious, some subconscious. It is often only when we go through a particularly bumpy part of life that we become more mindful and proactive about how we use them. Here we all are, on our own individual journey of learning how to make the most out of our ONE LIFE, which sometimes means even just trying to get through day-to-day, or minute to minute.
This process of being more self-compassionate and able to truly put in place what I believed I needed to go on a trip like this, has been one of my huge learning curves. Overcoming my concerns of being an inconvenience, or making a fuss, and realising instead that all I’m doing is trying to love and take care of me, whilst still being able to think about the feelings of others, particularly my partner on this occasion. Being compassionate towards others I have pretty much sussed out, being compassionate with myself is still a work in progress, but I have learned that these two things are most definitely not mutually exclusive.
I also accessed many of the tools I have learnt over the years to help me get through life, including now living with a chronic illness, such as: pacing, mindfulness, positive visualisation, compassion, and perhaps above all a sometimes quite strange and dark sense of humour, which keeps at least me entertained. My hope is to share some of these with you all in more detail over the next few months.
So there you have it, my checklist for going on an exciting, but exhausting mini break!
My recipe on this occasion?
A big slab of self-compassion/putting in place what I needed
An equal amount of compassion for my partner
A big splash of humour
A dash of luck
And in conclusion… As Rag And Bone Man would say,
I am only human after all.
I really had hoped I was actually a descendant of Wonder Woman but had not realised my Amazonian powers yet!!
Whether you have a chronic illness/disability or not, find going away for a little trip exciting and easy, or exhausting and difficult, or perhaps like many, feel conflicted, please feel free to share your experiences and coping mechanisms. I would love to hear from you.
Let’s get this conversation started! We are after all more the same than we are different.
Love and peace to you all
The Wounded Healer (A.K.A. Krissy)