Hello,
How are ya?
I wanted to blog today because I’m back from my holiday and it was an interesting experience.
Months ago when the holiday was booked, we requested something called ‘special assistance’. My nurse recommended it on the basis that she didn’t want me to be exhausted and uncomfortable before even leaving the country!
*Top Tip: If like me you suffer with muscle pain and weakness, you can ask your travel agent to request a wheelchair/walking aid to take you from check in to departure gate. It’s free and if on the day of travel, you feel you don’t need the assistance, simply say no thankyou.
I was travelling with my mum and she insisted that I use the assistance. I was recovering from flu and had chest pain so I agreed to use the wheelchair. It wasn’t my first time in a wheelchair but this time I felt really uncomfortable and like I was a bit of an inconvenience. I think I just had this image of me strutting through the airport like a confident traveller. It was quite the opposite.
Before we even left the country, my mum upgraded our seats for the extra width and legroom. What a relief! That little extra space made all the difference to the flight. Again, it’s worth researching these options if you’re going away.
8.5 hours later and we were in New York! People talk about the ‘energy’ of New York City and it’s true. The moment I saw the cityscape from the Brooklyn Bridge, the fatigue and the lethargy just wasn’t an issue. In spite of being awake almost 24 hours, I wanted to play!!!
The first time I visited New York, I was 15 and without a single health complaint. No Lupus diagnosis, no fatigue, no pain.
This time, I had all my health baggage along for the ride and I knew it would be a very different trip.
But something amazing happened.
(I’ll brush over the fact that I developed a severe chest cold, developed laryngitis and couldn’t speak for the last 4 days of the holiday!)
For the first time in years, I felt really alive! Now, to a healthy person, this will sound like a massive overstatement, but for a person that spends most of their life confined to the home, you rarely feel like you are ‘living’.
The second I stepped onto Times Square, it took me right back to being a teenager and I felt like I was part of something really special. I didn’t feel tired, I didn’t even feel that cold in spite of New York being uncharacteristically cold.
As the days passed, the pattern was the same. I got up early and actually wanted to start my day. I actually wanted to make an effort with the way I looked, I actually wanted to maintain a feeling of mindfulness and positivity.
I can honestly say that I was happy everyday. I’m not seeing a therapist anymore and so my struggles with depression are on my shoulders.
The smallest things made me smile and I felt really lucky to be there.
The reason that we chose to go in November was so that I could minimise the trauma of leaving my twenties. Not meaning to exaggerate again but receiving a diagnosis on the cusp on turning 20, I’ve not had a break from illness in over 10 years.
I’d created a huge scenario in my head of how the night before my birthday would play out, I was convinced that I would have an emotional breakdown. In actuality, we went to an Italian restaurant for dinner where I had the best pizza I’d ever had! We then went into a couple of stores (the stores stay open until 2am!) and then the clock struck midnight as we watched TV in our hotel room. A pretty lovely way to see in a new year.
I won’t lie and say I didn’t have pain and fatigue, but my mind was in such a great place that I truly believe it’s what’s got me through. I even said to mum that I don’t feel like I have Lupus.
It was awesome to be able to say that.
Being away took me out of my negativity bubble and allowed me to see my a life for myself that I really want. It helped me remember that there is a big, beautiful world away from the bed, couch, hospital, prescriptions, disability, pain, stress…
For once, I felt a sense of calm and clarity and I’m so grateful that I’m entering the next chapter of my life with a healthier outlook.
Thankyou for reading
Til next time!
X
sickoflupus 