Beyond the Four Walls: Love, Travel, and Living Fully with Chronic Illness

Having a chronic illness or disease does often take over our lives, sometimes without us noticing and certainly against our wishes.

Its slimy tentacles leave no area of our lives untouched. Whether it is our work, financial, social life or our mental health, it is there. It ruins every aspect and completely ruins the equilibrium of our lives.

So every now and again, it is important to take back some control and tell the beast that is our disease or condition just who is the boss here.

In reality, the disease unfortunately will remain the boss, but sometimes we have to fight through and force it into a temporary submission. Even if just for a short while.

Going somewhere new

Before I became unwell and my body slowly started to change and give out on me, my wife and I had many plans. Plans to travel once our children had grown up.

We had our children relatively young, which I am now so pleased about as I had the chance to run around with them, chase and play rough with them, like all dads should. Things I just couldn't do now!

Obviously, our future is now unclear and very uncertain. Even the brightest minds cannot predict my disease progression. One of the joys of neurological disease; they are unpredictable and vary by each person. This is even more true for rare neurological diseases when there is even less data or you may actually be the only known person with a particular variant of your disease or diagnosis.

We still hold on to the hope that we will be able to travel around more once our children are adults, but we will probably have to adapt our choices.

Again, another tentacle reaching deep into another dream inside its host's body. Making yet another thing that little bit harder or more unlikely.

For now though, well, I can still walk, albeit slowly, unsteadily and in a very unbalanced way. We do try to occasionally explore places we haven't been that are around us in the UK.

These could be towns or cities we've never visited. National Trust or English Heritage sites that I have wanted to go to. Really, just somewhere new. Somewhere unknown and somewhere that isn't the confines of the four walls that is my home.

A change of scenery

I often find that one night, even a day away, can help to recharge the batteries just enough to continue the daily battle that is living with disease.

Being somewhere new without the usual stresses of life and zero expectations can be amazing and is certainly something my body and I greatly appreciate.

New places to explore, new bars to visit, new people and simply a change of scenery from our usual daily lives.

Hotel beds still suck

As much as I appreciate the break and the opportunity to explore a new and exciting place, hotels beds are still terrible and absolutely suck!

Whenever I stay in a hotel, I always struggle to sleep. More than usual, even after taking my array of medications that also help me to sleep better. Sleep eludes me, or the quality of sleep is just unbelievably bad. Constantly waking through the night.

The noise coming from the air conditioner unit, other guests walking past our room, or aches and pain due to the mattress make sleep difficult. I love going away. I just dread going to bed.

I have been to budget hotels up to 5 star spa resorts and the mattresses are just so uncomfortable. Nothing ever compares to your own bed, that's for sure.

Quality time

Regardless of the sleep, I am grateful I can still get away. I am grateful to be able to get away with my wife - my best friend and soul mate - and eternally grateful to be able to spend some quality time with this amazing woman.

Life always gets in the way. Not just for the chronically ill but for everyone. That is why it is so important that we make it a priority to ensure we arrange these moments together.

I have witnessed many marriages failing because they have children and lose touch with what brought them together in the first place.

In a long-term relationship, especially when you have children and even more so if you live with the difficulties of chronic illness, it is an absolute necessity. It isn't optional and will almost certainly cause the relationship to end in failure if you neglect to prioritise spending quality time together.

A time to remind each other that you are more than a parent, carer, sufferer and to remember the things you love about them and what brought you together.

It is a chance to just be YOU.

Food, drink and great company

Going away with my wife is something I love and is definitely something that has lacked over the years. Obviously, having children, whom I adore and cherish, meant we had less opportunities to get away.

We didn't have the most supportive network around us. Such as grandparents or other people who would offer to care for our children while we went on regular nights away. So these outings were always rather elusive and rare.

Now our children are older - not quite adults, but getting there. They are old enough to be left overnight while we're away on relatively close nights away. So my wife and I have committed to trying to do things like this more often. With the ultimate goal being to go on lots more city breaks across the UK and Europe once our children reach adulthood.

Going away spoils you for choice when it comes to finding somewhere new and exciting to dine. In many cities, there seem to be endless choices and the decision is always so difficult.

I usually let my wife choose where we're going to eat because she's the fussy one. Plus, if it's terrible, I get to blame her!

We also enjoy exploring the quirky streets of these old cities, finding small cafés or bars.

Bath, a city in the UK and renowned for its Roman history, including a fully preserved Roman bath house is a great example of this.

There are tiny narrow streets sprouting off in every direction. Outdoor seating everywhere and an atmosphere that is unmatched in many places we've visited in the UK.

Although, the ancient cobblestone streets are an absolute nightmare for someone like me. I have almost gone flying more times than I'd care to admit.

Exploring so many establishments and obviously sampling their fabulous products, usually of the beverage variety, one can quickly feel rather pissed. Which again, make those bloody cobbles even more of an issue.

If you haven't already guessed from the way I write and talk about my wife, she is my favourite person - with the obvious exception of my children.

There is nobody else on this planet that I would rather spend time with and in truth, I do quite often work to avoid people and socialising because, to put it bluntly, people can be rather annoying.

Spending time with my wife is effortless. We just get each other. Often have the same thoughts at the same time. Say something the other was thinking about or about to say.

Whether sat in a cafe, a restaurant, bar or simply on a bench, we get to truly enjoy each other's company. We don't even need to be talking to each other. Just sharing a moment, together as husband and wife, as best friends, as soul mates.

Wrapping up

I know I am incredibly fortunate to have such an amazing relationship with my wife. I understand many in my situation don't and I feel for those of you going through shit like this alone. In fact, I applaud you because being real, I don't think I could do it.

Is our relationship perfect? Not at all. We have our moments just like any long-term relationship. I'll likely say something wrong or out of place which will anger my wife. We'll have some cross words with each other, but usually we can resolve those small niggles in a short amount of time and move forward.

Marriages are always a work in progress. If either of us stops working towards the future of our marriage, the dynamics highlighted in this post would fizzle out and ultimately lead to it failing.

Through communication, a deep understanding of each other and on the whole, a sense of humour, we can get through anything. After almost 20 years together, raising two children and going through some seriously tough times as one. I look forward to the next 20 years with my wife and soul mate.