Travelling with a chronic condition…and a toddler.

Holiday…travelling…everybody enjoy going away; I used to love to get on a plane and go in a different country, even since I became a mom it hasn’t really been an issue to travel with my daughter, we have been going away since she was six months old and very often just me and her. But everything changed since I have been dealing with chronic conditions. Now I start stressing about it weeks before I even leave, and of course I know it’s the worst thing I can possibly do with my conditions but there is no way of controlling it. I stress because of past memory, I had bad experiences before while travelling so everytime my mind goes there.

The only thing I can rationally do is to prepare myself, as much as I can. Before I leave I try to think of all the scenario I could possibly go through, to tell you a few that happened in the past : I fell sick at the airport on my way back, I experienced chronic pain while away on holiday, I had to go to hospital, I had to stay longer,… Next is preparing little kits that could be helpful in certain situations, for example my airport kit; I bring it in my carry on bag, normally a backpack and it contains: a change of clothes (including underwear), wipes, my “emergency medications”, a hot water bottle (empty), some kind of hospital paperwork that explains my conditions ( in case I have to explain it to staff at the airport, it actually happened!!), Rescue spray ( it’s a mix of Bach flowers that helps during stressful moments), lavander roll on, antisickness wrist bands, orange essential oil ( it helps with sickness). Also I bring in the carry on bag all my medicines in case my luggages get lost, stolen or flight are delayed so I don’t have to worry about missing them; and I bring an extra week woth of medicine on top of the days I’m travelling for in case I have to stay for longer. For my little one a lot and I mean a lot of entertainment and snacks, which obviously changed through her different stages but for example right now that she is two I brought for her: a colouring book with crayons, a few of her favourite character (right now the Trolls), a couple of books (if possible new ones so she is more into it), stickers, a magic board and of course an Ipad with a few games app for her age and some her favourite videos. It sounds a lot but kids get bored really easily, at least mine, so I rather have extras.

Things can still go very wrong, like they did in our current holiday, yep we are on holidays at the moment and let’s just say it hasn’t been the most lucky one but I’m trying my best to enjoy the positives. I think it’s very important to become realistic and know that chronic conditions are 24/7 and din’t take any holiday, ironically, so they can come anytime. Once more I had to visit the hospital while I’m away and I have been spending the past couple of days in bed while my family goes out and fun. Don’t take this wrong ,I’m extremely happy that at least they can have fun but ,of course I’m going to be upset about ruining my vacation time. Accepting that I will get upset when things go wrong and it’s ok if I do was one of the turning point about my journey living with a chronic condition. I had three amazing days of beach time with my daughter and enjoy every little thing, playing in the water, the warmth of the sun, a swim in the sea, her laugh and yes a bit of a tan!! This is all I want to remember! And the holiday is not finish yet so I might be able to enjoy a few more days.

A few other things I prefer now when I travel are:

*stay in houses rather than hotels. I fell like I have more freedom there if I’m not feeling well and also my daughter has more space to move. We can do what we want about food, eat in or out, whenever we want. I have a kettle for my hot water bottle or I can boil water on a stove. And other little things.

*know in advance where are the hospitals and which one have ER. Unfortunately I need them very often so once again I rather be prapered.

*Have netflix installed on my phone or Ipad. Seams silly but if I have to spend a few days in bed that’s one he things I do to distract myself.

*Document myself on what kind of food I can find there and if it’s necessary bring with me a few essentials. Seams silly but when I’m not well I can eat a very few things so once again better prepared than starved.

Even though I have to face a few extra challenges when I travel, I will not stop. It’s one of my biggest passions and something I love doing with my family.

Don’t stop doing something just because it’s a little hard, always look at the bright side of things; is it realistic to be like this everyday ? No , but that’s ok, as long as you try your best to live the life you want to live.

” Twenty years from now you will be more disappointed by the things you didn’t do than by the ones you did. So throw off the bowlines, sail away from the safe harbor. Catch the trade winds in you sail. Explore. Dream. Discover. ”

Mark Twain

I WENT VEGAN

 

Honestly I feel like I tried everything in the past few years, be it for my health problems or just for general health. Specifically about food, I have been to a nutritionist a few years back that specialised in treating digestive system disorders with tailored made diets. What I’m going to write is just my experience, I’m no expert and I don’t intend to give advise.
I had some blood tests done and the results told me if I had any allergy, intolerance or simply my body didn’t agree too well with eating particular foods. I thought “great! this is gonna work!!!”. She sent me home with a list of foods that I could eat and another with ones that I couldn’t. Unfortunately the first one was very tiny compare to the second. The nutritionist wanted me to cut almost everything, without considering my likes and dislikes, how much food I eat or how my body works; for example I have a really fast metabolism, I loose weight very easily and find it hard to put it back on. After a month of this diet, I was unhappy and grumpy all the time, lost weight (when I really didn’t need to) and didn’t feel any better. I still went on with it, I was allowed to reintroduce some food items but it still didn’t work for me. After 3 months I gave up.
Have you ever heard of “intuitive eating”? It is basically rejecting any diet mentality and honoring your hunger with what you feel is right for you, listening to your body when it’s full and when it’s hungry. When I was in a really bad flare with my chronic pelvic pain I found eating really difficult and skipped most meals. Obviously that didn’t have a good impact on my general health. I was staying at my parents’ because they were helping me looking after my daughter while I was in too much pain to do anything. I have spent a long time in bed which gave me the opportunity to look into different dietary approach. When I looked into veganism I immediately felt that it would suit me, at least for this period of my life. When I went back home I jumped ino it immediately; that was the first week of May. So it has been now a bit over two months and it’s going great, I listen to what my body needs, following the principles of being vegan. I learnt how to cook many yummy meals and snacks. There is nothing that I miss or crave and I learnt a lot about nutrition My energy levels are higher and I don’t experience fog brain anymore. My digestion is effortless now and I don’t feel bloated all the time. And I’m actually just enjoying eating much more.
Do I think everyone should go vegan? Did I force my family into becoming vegan? No and No! What I think is that you should just listen to your body and make the best choices for yourself. My husband is not interested in trying this approach to food and I let my toddler decide what she wants to eat. Interestingly enough she really loves fruit and vegetables , she likes beans and similars but she also loves eating dairy (milk, cheese,…) and doesn’t enjoy substitutes ( almond milk, coconut milk,…). I think when she is a bit older she can make her choice and decide which direction she wants to take about food.                                                                                                                                              I also started sharing pictures of my food online, I think it’s fun and makes me love cooking these delicious meals even more. And you get to know people that are on a similar journey who are willing to help and support eachother.
The most important thing is look after your body because you only get one and it will take you through life so it should be your most “valuable possession”. Love yourself!

INFUSION DAY 101 (How does it really work?)

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Since January 2018 I have been taking a new medication for my ulcerative colitis. It’s called Infliximab and is administered via iv. I have to have it once every two months; that means I have to come to hospital every 8 weeks for about 5 or 6 hours and get it done.
So let me tell you what happens when I come. I normally come in the morning between 8 and 9 am. When I get here first thing I need to do is a blood test to check that all the levels are good. If everything is fine I then speak with a doctor to briefly talk about what happened in the past couple of months and he then gives the green light to start. At this point I have to take an antihistamine (tablet) and steroids (through iv) to prevent allergic reactions. After 30 minutes I can start the real process which is the actual medication I’m there for. As I mentioned it is given through iv and it takes about 2 hours. Finally I have to do a last iv to flush and then wait 15/20 minutes to make sure I’m ok. Also every 30 minutes or so they check all my levels (blood pressure, heart rate and temperature ). And that’s it! I’m done!
Since I have been doing these infusions my Uc  has been in remission which is great! It’s actually my best option so I’m happy with that.
Ok this was all the medical stuff, now how do I deal with it? Mentally, emotionally and of course physically. I have been doing this for a fair amount of time now ( they call me a “regular ” in hospital) but everytime I have to go, a few days before I get really anxious about it. I know it’s not a big deal and everything is going to be fine but I still get stressed. Since I have been dealing with my health issues I have been very fearful in life. Experiencing panic attacks when “something feels wrong” –  and that could be anything; a weird sensation in my body, an inexperienced nurse, sounds, smells, and the list goes on and on. So in this particular case, when I go to hospital for Infliximab, I get myself distracted. This is how I manage to stay calm. That means preparation!
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I downloads movies or tv shows to watch, take a book with me, I bring food from home , I write (like I’m doing today), listen to music, meditate and very often sleep because apparently the medication makes you tired. But of course if something doesn’t go as planned, the first responce is to go in anxious mode. so how do I get out of it? Breathing (literally), slow and long breaths and thinking of letting go the negative thoughts. Our minds are so powerful but it’s up to us how we are going to use this power. I’m trying to train my mind into positive thoughts and strengths but also I’m trying to let go of less important stuff in life, baggage that we carry around from the past for no reason. Am I super positive all the time and strong every minute? Not at all!! I fail almost daily but I now take failure as a learning process , rather than failing at something. And I try to be more gentle with myself, if I make a mistake it’s  not the end of the world , I can try again. So if I get anxious before my hospital appointment, it’s ok, next time I’ll try again and maybe it will be a different experience. Are you going to try to be less hard on yourself? I invite you to try. Also if you have any other tips or advice on how to deal with anxiety please share! Have a good week!
“With the new day comes new strength and new thoughts”
Eleanor Roosevelt

What’s my story?!?

I can’t remeber the last time I felt “normal”, so much has happened in the last four years. Some really good stuff but some not so great too. I want to start with the happy parts , because they are more important and what I want to hang on – obviously … I got married, I had a daughter , we moved into a nice flat ( compared to where i lived in the past, lol), I met some lovely people and I stayed in contact with amazing friends , I had the opportunity to spend more time with my family, I met my in-laws and love them!! I probably have more things but I guess these are the most important.

So why do I complain so much?? Well my health is what failed me in the past 4 years and it took me by storm because from being a healthy 30 something travelling through Africa, I became a sick slightly older stuck in my bed / home most of the time. When I was in Tanzania I got really sick and at first I thought , as did the doctors, that it was some kind of bug I got by living there. But nothing they were giving me was working, I was just getting worse and worse. So after a month I made the trip, on my own to Italy, where my family live, to get some help. It only took a few days in hospital and some very good doctors to figure out what was wrong with me. I was diagnosed with Ulcerative colitis , which is a chronic condition that causes part of my digestive system to become inflamed and ulcerated. I remember vividly when the doctor told me what this was. I felt like I was falling in an endless tunnel and I couldn’t breathe. He said to me it was no big deal and I could easily control it and have a normal life. It took me 4 years , hospital stays, a long list of medications and lots of pain , physical and mental, to find something that works for me. And that is some pills to take morning and evening, and a day in hospital to get a drip every two months. That is for the physical side but what about mentally and emotionally?? That takes a lot of courage, strength and help from others.

I’m sure what works for me is different from other people but I guess as long as you find the right thing for you it’s all good. For me it was therapy , for one year every week, meditation and the amazing support from my family. In primis my hubby , who was with me everyday, every hospital stay, who held my hand every time I cried, who patiently stayed in with me, who helped me raised our baby and was open to learn what I needed. My beautiful daughter doesn’t even know how much she helped me, she probably saved me from depression, she gave me a reason everyday to try my best and she gave me lot of cuddles.

So again you will ask , why am I complaining? I’m all better now, my ulcerative colitis is in remission, what more can i ask for? Well, I had a couple of good months and then something else started. An inexplicable pain that just doean’t go away. Imagine being in pain all day (that means night too) everyday. It has now been 4 months, I have been through many tests and spoke to different doctors in two countries , but the only answer they gave me has been something called ” pelvic chronic pain syndrome”. What does it mean? Nothing. It means I have a chronic pain , located in my pelvis but they don’t know why. Possibly my life is even worse now.

Does that mean I’m sad all the time? Does it mean I’m doing nothing all the time? Am i staying at home everyday? NO. NO. NO. This time I was ready for the battle. I knew what it feels like to be unwell every day, going to hospital all the time, just going through shitty times. I am learning to control my pain with breathing and meditation. So far these are the only things that get me trough my pain. I’m learning to embrace my pain, not trying to push it away. I’m learning that sometimes I have to stay quiet till I feel better and then I can do something. Everyday is a battle but I’m happy to fight it because I’m alive and that’s what matters.

Self-love is essential, and no I don’t mean that kind. I mean eating well, taking time for yourself, doing anything that makes you feel good. You heard this before? Because it’s true!!! After reading this take a vow. Tomorrow start doing one thing that makes you feel good. I’ll do mine, I’ll start writing this blog… for me.

The Journey Begins #healthjourney

Thanks for joining me!

Almost 35, a husband, a daughter, a chronic condition that changed my life but it’s not going to run my show.

It’s time to stop, take a deep breath and take back my life. I’m giving myself the best gift you could ever get, Time to Heal. This is only possible because of my amazing husband that always supports my decisions and picks me up when I fall. My husband that actually taught me it’s ok to fail but it’s not ok to not try. My husband that has been with me in the ups and downs, from the very beginning. So I dedicate this new project (sharing my life in this blog) to him because he inspires me everyday to improve myself and fights for my right to be happy.

I’m also a mum of a 2 year old beautiful soul that can just about make few sentences (in loop all day long) but has been my rock since she was born or even since she was in my belly because I knew |I would never be alone again. I share a special connection with my baby that all my family always recognise. Just by looking into my eyes she gives me everyday the strenght to keep going, even when it’s hard.

Of course I’m also a woman that likes clothes, make up , skin care but with an eye open for eco conscious choices. I’m trying my best to get better with my everyday decisions that affect my health and the enviroment. I’m very far from being perfect but Hey I’m trying.

Love cooking, travelling and talking to strangers.

So I guess this is what I will write about on this blog, my life. I hope I  can get to meet other people that share the same interests that I do and learn from each other.

Good company in a journey makes the way seem shorter. — Izaak Walton

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