Esta entrada también está disponible en: Spanish
As many of you know by my Instagram account, Jorge and I have been on our honeymoon (haha, yeah! After a year and a half married, we finally went :p . And it is the first time since 2008 that we have been able to go on an organized trip in which you have to get up at 8am to have guided tours. A few years ago that was a utopia for me because the fatigue of lupus would not let me do anything.
Delayed honeymoons rock!
Yes they do! 😀 And don’t feel bad for not going on your honeymoon right after getting married ;-). The important thing is that we enjoy the trip when we do it, right? And the truth is that you cannot enjoy much if you are short of spoons. Also, I can assure you that a honeymoon is no less special if you do it 2 years after you get married. If the relationship is good and healthy, if there is illusion and love, your honeymoon will be as good as if you had just got married.
We did not delay the honeymoon because of my lupus, but because of all the moving to Dubai… Although we did have to delay our wedding because of lupus! The first wedding, in 2012, had to be cancelled at the last minute and we ended up getting married in 2015. But nothing happens! Because when we got married we enjoyed it 100%. Being able to dance and jump in my wedding was a dream, seriously! 😀
So never feel bad about delaying a wedding or doing it in the lupie style, like I did. I know it affects a lot at first because I spent a lot of time with great sorrow for that, but the time (and my super cool atypical wedding) made me see how wrong I was.
Traveling with a chronic illness
I love to travel and that is why I have talked a lot about this subject that comes to really make us panic: how to prepare better for it, vaccines issues, what to take with us, documentation, travel insurance… But even with all that information sometimes it is just impossible to travel.
For many people with chronic illnesses, going to the store next door to buy the newspaper is almost an impossible mission, so imagine what a journey must be.
What can we do then?
Reinventing travelling, it is!
Exactly! We have also talked a lot about reinventing ourselves because I have had to do it recently with my life, so today we are applying the reinvention strategy to travelling 😉 , which I had to in the past too.
Now I feel great and my lupus is inactive and asymptomatic, but there was a time when it wasn’t like that. The pain, and above all the fatigue, didn’t let me do anything… and Jorge and I gave a lot of thought to alternative ways of traveling that my little spoons could afford. There were stages, of course, in which even these tricks did not allow us to travel. There are stages in which traveling is simply not possible.
This is what has helped us, both Jorge and me, to lead a more normal life in the hard times that lupus has brought us.
I hope it helps 🙂 .
Reinventing ourselves is everyone’s job
Jorge and I have been successful in our relationship and in what we have undertaken because we have done it together and as a team. Without team mentality there is no way to do it. And I must say that both of us have worked (and suffered) a lot to reach this point where we can both understand the other’s needs and conform to them.
No matter how hard and eager we are, we can’t do it without the support and understanding of those around us. So work as a team, talk a lot and share what you feel and how we can help each other.
And yes… we are the ones who are ill and living with pain and fatigue and taking a thousand drugs a day is a horror, but so is living with a chronic illness. And those around us live with a chronic illness. Not as patients, but as caregivers, who also have their thing!
That yes … we would swap places with them without hesitation! But I am not talking about that but about putting ourselves in their shoes. I am talking about getting to understand that it is difficult for them and that it must be tiring to live with a chronic illness they way they do.
We have no choice but to live with our illness and limitations, but have you stopped to think that they choose to live like this every day? With our pain and fatigue, with our bad corticoid-moods, with our depression and vampire life.
If we want them to get in our shoes, let’s do the same, okay? It’s worth it ;-).
Make a good planning in your trips and keep in mind your limitations
If your hip or legs hurt, do not take a trip that requires a lot of walking. If, for example, you usually have a hard time with your Raynaud, a trip to Iceland may be an ordeal. And, of course, a beach destination does not make sense to me because they are expensive and I will not take advantage of the sun and the beach, hehe. Although as Jorge likes the beach very much, sometimes we do go: I spend the day in the room reading while he enjoys the beach and the sun. In this way we both are happy: Jorge gets to have his beach time and I love knowing he is happy 🙂 .
It is not perfect. I also know that. He does not enjoy as much if I am not there with him I would obviously prefer other plans :p . But let’s put it this way: if I have to be indoor during the day, it’s the same for me under which ceiling I do it.
Both Jorge and I have worked hard to reach a balance. Not a perfect one because perfect would be to be able to do everything we wanted, but is a balance in which we have learnt to enjoy life as it comes.
Another thing we have done is to travel in autumn or winter. The furthest from summer, the better!! I have to protect myself from ultraviolet light allllll the time all through the year, but it is easier when it’s cold than when it’s August and we’re at 40 degrees.
In the case we are travelling in summer we try to choose fresh countries like the UK or the North of Spain, which is simply beautiful. There is a lot of world to see, so let’s start with the cool places first and then we’ll see what we do 😉 .
Organized trips? It depends!
Organized trips are tiring for everyone, so they can be a big no-no for people with chronic fatigue. Some of us, as well, can get a bit worse if we spend more energies than usual, so we have to be careful about this. Maybe we can make an effort and go that “extra mile” for our love ones to be able to go on that trip, but we can pay for it afterwards in the form of a very ugly flare 🙁 . It’s not worth it, believe me!
Organized trips are tight to a schedule and that means that you have to go no matter how you feel or will feel afterwards.
Jorge and I said good-bye to this kind of trips ling time ago and looked for other options. Just have a look on the Internet, ok? We are spoiled for options and maybe you kind something that adapts to your condition and spoons 🙂 .
We have not tried this, but I really think it’s a good option. There is a lot of indoor space, you can be in bed or sitting all the time you need and, of course, you see the world 🙂 .
Oh oh!! And in those days in which you simply can’t get up you can stay in bed because you are in a moving hotel 🙂 .
Has anyone tried it?
Travelling by car
Wonderful, seriously 😀 !!! It’s the way we’ve travelled these years and we’ve loved it 🙂 . They are trips that allow you to go at your pace 100%, making the stops you need and sleeping what you need because the schedules are as flexible as you want.
You can organize them in your country, with your car, or flying wherever you want and renting a car there. We have done both things and with a GPS everything is easy and you don’t get lost. If you do not one, I’m sure that in the rental company you can rent a car with a navigator.
Plan your groundhog days
Groundhog days are those in which you can only sleep. The fatigue is so big that you cannot do anything else no matter what. I talked about this here, but it’s still in Spanish. Will be translating little by little and in the meanwhile you can use an online web translator like the Google one, which is the one I use to read the Arabic news 🙂 . Just enter the “www” address of the website you want to translate and there you go! 😉
Ok let’s continue because a good planning of your groundhog days can really make a big impact in your life.
At first it is difficult to predict how high or low our spoons will be, but you will learn to do it over time. It will always be unpredictable, but more or less, when you get to know your lupus, you get to know that two days of activity are equivalent to x groundhog days.
Be patient, ok? Because at the beginning predicting these days will be more complicated as we don’t know our disease so well. Remember that sometimes we have to make mistakes to learn and that next time “we will fail better” 😉 .
When I plan any trip I always take into account my groundhog days and add resting days here and there. This way we make sure that I will rest when I need it. And, of course, if one day I get up really tired and cannot go out I stay in. Jorge and I have learnt to be mentally ready for that ;-).
The days that I stay resting in the hotel Jorge takes the opportunity to do or see those things that interest him but that I don’t like. This way everyone is happy: I get out of a boring activity and he gets rid of my complaints, haha.
Always take your e-book with you
A must have in my opinion and one of the best gifts I’ve ever had. Its lightweight makes it painless to hold the book and turn pages. Yes, in many cases the simple fact of holding a book really hurt! But since I got an e-book all my problems were solved.
I always take it to the trips so, when I’m tired, I go to a cafe, order something and read! And Jorge, again, can go sightseeing with peace of mind because he knows I’m fine.
Cuando vas de turismo y acabas en un bar mientras él sigue de turismo 😁. _ Siempre con mi libro a cuestas por si acaso necesito "aparcarme" en algún sitio por el sol o el cansancio 😊😊. ___ When you are travelling and need some rest while he keeps visiting 😁😁. Always have my book with me in case I need to stay in a bar because of the #sun or the #fatigue. #love @spain ___ #travel #visit #ebook #read #bar #viaje #viajar #sol #cansancio #turismo #mychoice #yoelijo #viaje #españa #spain
I really recommend it 🙂 .
There is no perfect solution when you can’t travel or do something you like. But you have to reinvent yourself and look for alternatives. I know people who travel through the coins, notes and the typical refrigerator magnets that others bring them from their travels… And on this trip I have brought Olga some sand from the Maldives because this lupie has set out to see the world through the sand of the beaches. I love the idea 😀 .
Many times I’ve seen the world through Jorge’s eyes. It is not perfect for neither of us, but it is what we have had for a long time and it has helped us grow as a couple.
Whenever I stay in a cafe or in the hotel because I’m very tired he goes, camera in hand, and he records me videos of what he sees 🙂 . Or if he sees something he knows I like. We have a lot of videos like this, haha. This is one of them. You will not understand what he says because it’s in Spanish, but he is impersonating a famous Spanish animal lover and presenter.
Hubo un tiempo en que el #lupus no me dejó viajar. Y decidí ver el mundo a través de los ojos de otros 😊. Jorge se iba a ver mundo mientras yo me quedaba marmoteando en el hotel y luego me enseñaba lo que había visto. Este vídeo de 2013 es un ejemplo de cómo lo hacíamos (con humor, jaja 😂). También he viajado a través de las fotos de todos los que comparten sus viajes en redes sociales y siempre me ha reconfortado. ¿Cómo lo hacéis vosotros? ____ . #travelling is not always possible when you have a #chronicillness. Sometimes you have to #travel through other people's eyes, like I used to do. Jorge went out while I stayed in the #hotel 😴. He would record some #videos like this one from 2013 showing me what he saw and afterwards we talked about it all ☺️. It's not #perfect but it was the only way to reinvent our #journeys. How do you travel when your #illness doesn't let you? Let's #reinvent the concept of travelling 😉 ____ . . #hope #creativity #dreambig #health #video #esperanza #alternativa #viaje #viajar #recuerdos #remember
When he comes back he shows me everything and we talk 🙂 . It’s not perfect, but it’s the best way we have to lead a normal life and I think it’s nice. This is what we have had for a long time and I really encourage you to give it a go.
And you? How do you travel?
As you can see, sometimes life is not all that ideal we thought it would be. However, in some ways, it is in our hand to reinvent ourselves and find other ways of enjoying what the disease has temporarily taken away from us.
It is not ideal, but it is what we have. And it is up to us to learn to be happy with what we have or to be miserable.
When I wasn’t able to travel (nor do anything with my life) seeing other people’s trips used to comfort me. I liked to know that there were people who could do what I couldn’t and I liked to see the world through their eyes. I liked to think that if they could do it, someday I could too… and I wasn’t wrong.
Although it is inevitable that a certain melancholy strikes me, I am happy to see the pregnancies and babies of all those lupie moms 🙂 . One of them shared her whole pregnancy with me. From her first ultrasound to the last one!!! And, far from feeling bad, I loved being able to live her pregnancy with her 😀 . Now I keep watching his beautiful daughter grow up and the truth is that I feel her aunt and I love it.
There are people, however, who get angry with you for posting on social media pictures of your trips or the party you’ve thrown for your birthday. They say you have a complete lack of empathy “because there are many people who can’t do that”. But… you already see that there are things that I can’t for now (like having a baby) and many others that I could not do at the time, like working, traveling or even get dressed by myself.
How do you feel when others share in social media things that you can’t do?
How have you travelled and seen the world when your illness has not let you travel by yourself? Give us ideas so that those who can’t travel find an alternative way, like Olga with her sand or Mary with her fridge magnets 🙂 .
Related articles (in Spanish at the moment):
- Así fue mi boda 🙂 .
- Vivir con lupus en Dubái.
- La fatiga en el lupus.
- Cómo es vivir con una enfermedad crónica: la Teoría de la Cuchara.
- Viajar con una enfermedad crónica.
- ¿Qué hago si me pasa algo durante las vacaciones?
- Conoce tu enfermedad: la estrategia del fracaso.
- Si nos cuidas, cuídate!
- ¿Sabes lo que sienten los que nos quieren?: