Just in time..

So I got home, just in time for a nice flare up (or relapse as some call it). When you have MS you have some times that new symptoms pop up or old ones get suddenly worse, and I think that’s why I felt so awful on my trip, though it only actually started to get really bad on Saturday night. Things went from bad to worse really quickly which is how I knew it was a flare. My legs are just horrible right now and I can barely walk because they feel so heavy, painful and stiff. I also just have no energy, feel totally off balance and just generally awful. A lot like how I felt the last time I had a flare, when I was first diagnosed so I knew something was really wrong this time.

It’s a bit of a frustrating process to get treated. I contacted the nurse at my MS clinic and told her what was happening and because my neurologist isn’t in the clinic this week she had to tell me to go to emerg to be seen, which I was trying to avoid! If he was there I could just go right in and see him probably. The emergency room always takes forever. When I was first diagnosed they made it seem like from then on if I have issues they could call ahead to say I’m coming and get me right in to see neurology. But it of course doesn’t work like that. First you have to wait for the emerg dr to come and see you, then eventually they will page neurology, then they will decide in a course of treatment or if those pesky steroids are needed. It usually takes forever.

So I went in today to get the process started, with one of my best friends who is visiting (what timing!). They actually got me into a bed pretty quickly this time though, thankfully. I saw the first dr, who was actually a medical student reporting to the head dr, after about an hour of being there. He went to consult the other guy and I was waiting to hear back. About an hour after he left, while I was in the emerg bed, the nurse from the MS clinic called me saying my dr had approved the IV steroid treatment (which is what they give you to try and calm the inflammation and symptoms causing trouble) so I left emerg and headed up to the clinic to get my first dose. It actually worked out pretty well, because the dr’s at emerg (who were both very attractive, which didn’t hurt! But is also ki) were really unsure sounding about how to proceed. They really don’t like to start people on the steroids until a specialist confirms it at that hospital. It’s hard on the body and they don’t treat it lightly, which is probably a good thing.

I got to the clinic and I had my first dose, and then my friend wheeled me home, since I just live down the street. Now I have home care nurses coming for the next four days to give me the treatment at home, which I’ve never done before. I’m actually really glad they will do that because at least this way I don’t have to be admitted to the hospital! I just got home from my trip and would hate to have to go and stay there instead of my own, glorious bed!

I felt kind of bad that my friend had to tag along for all of it but she really didn’t mind and I appreciated the company! We have fun wherever we are, and we just passed the time giggling like little girls at all of the good looking doctors ;)

Back home now and happy to be, hopefully these meds will help me get back on my feet soon, literally! :)

M

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Coming home

Had a bit of an ordeal getting home. My flight from Edinburgh was supposed to leave at 8:20 am local time. I got to the airport at 6am after very little sleep and waited a long time for assistance, and considered just heading up on my own, but I knew I wasn’t doing well, and standing in the lines would not have been possible, so I waited. When they did come I got through security and everything pretty fast. First time they actually gave me a pat down instead of walking through the metal detector thingy. I had some extra time so did some last minute gift buying, and headed to the plane.

When it was time to board, they called for anyone needing extra time to head in, so I started making my way to the plane (hearing some grumbles from other passengers, and comments about being “disabled”) and they then just made me stand there for ten minutes or so, with everyone else behind me waiting to board. But whatever, shit happens, right? I got to my seat, and ended up sitting next to a lovely older Scottish woman who was heading to Canada to meet friends and go on an RVing adventure to the east coast! She was nice and kept giving me little toffee candies. Score.

Unfortunately though, our plane didn’t take off. It started, then stopped. Then started again, then stopped. Then the pilot came on the speaker saying there was a maintenance issue and we had to head back to the gate to check it out. Not something you really want to hear about a plane you’re about to fly in for 7 hours! It ended up being a long three hour process, where we just sat on the plane waiting.. Creepy.

Eventually we took off and made it to Toronto (thankfully!), a few hours behind schedule, but we made it none the less. I then had some issues with the assistance at Pearson airport. I was actually really surprised at how they treated me. First, someone else took the wheelchair assistance that showed up for me, who didn’t ask for it ahead of time, so I waited about ten minutes or so for another to come. It was fine though, I figured if they took it they needed it and that’s fine with me. I also really needed it after the whole ten hours on the plane thing. The issues came when I got in the wheelchair. The first guy dropped me to wait for a golf cart type thing, that drove me just a few minutes to another spot where some Air Canada staff took over. A woman took me in another chair, through the security and to baggage claim. Now this is where things got really weird. At every other airport I’ve been to on this trip, they have helped me get my bag, and dropped me at my final destination in the airport, no questions asked, and have always been very kind about it. I was surprised at how efficient and helpful they were everywhere I went! I was just a bit shocked at how I was treated in my home country in comparison. The woman took me to the baggage belt, and told me that if I was “tired” I could go sit in the chairs near the belt and she would be on her way. Now as I mentioned, I had been sitting on a plane for the past 10+ hours, my legs felt sore and heavy as hell, but yet also like jelly. Real heavy jelly (that’s the best I can describe it!). I was shocked at the ignorance of this woman. She made it seem like I was just getting assistance because I was sleepy, and she was more then happy to leave me to it. I asked if I could just stay in the chair she had parked me in, and for her to clarify how far I would have to go from there to arrivals, and she assured me it was just around the corner, and then she left. I didn’t really know what to do at this point. I was a bit of a mess still from the flight and feeling pretty awful (note: heavy jelly), and was just kind of shocked that this woman, who works in a mobility assistance department, would be so cold. I really think it was because I am young, and not visibly disabled. But I also think that’s not an excuse, and that she should have known better.

When I got home, I decided to email Air Canada customer service about it. I just feel like if this happened to me, it could happen to again to someone else, and there needs to be something done so that it doesn’t. It’s hurtful, and embarrassing, and if another passenger didn’t help me to get my bag I might not have made it to where I had arranged to be picked up (which was a whole other ordeal, why do people push past someone who is obviously struggling?!).

I actually heard back from Air Canada today, which I didn’t expect, and they were very apologetic and agreed that it was not standard procedure and that it would be looked into. They also offered me a $100 credit to a future Air Canada flight. I wasn’t looking for that, but it was a nice gesture. I more so hope it helps to better the assistance offered for others travelling alone through Pearson airport.

Not a very pleasant experience, but I’m glad to be home after all that!
And, I’ve since had both Swiss Chalet and crispy bacon (though not at the same time, that would be too much awesome to handle).

Oh Canada.

M

The end of the road..

Right now I’m in a hotel by the Edinburgh airport, getting ready to fly home tomorrow, bright and early. I have mixed emotions about it. It’ll be nice to get back to the comforts of home of course, my apartment, my bed.. My crazy cat, lol. But I feel a bit sad to be done with this adventure! Everyday life seems so boring in comparison. Though I am starting to miss Toronto. I miss things like going to the movies. And home cooking. And crispy bacon… Mmm…bacon..Right, back to the post ;)

I think I had pictured it all going a bit differently in my mind, but things never work out the way you expect, now do they? I did feel a bit let down at times, a bit angry I couldn’t do more and a bit lonely now and then, but I’m still glad I did it. I’m learning to accept my limitations, and work around them. I’m learning to find ways to enjoy my life instead of focuses on all of the negatives, which is easy to get wrapped up in. I’m a work in progress but I think this was an important step for me.

I knew this trip was going to be tough, trying to do so much when my health is at a bit of a strange place, with a lot of unknowns still, and it was tough. Tougher then I expected in some ways. My legs gave me a lot of trouble, and I used my cane way more then I had hoped to have to do. But I’m proud of myself for getting through it anyways. I don’t think I could have done this trip even just a year ago. It was an experience I’ll never forget. I met some really interesting people, and saw some amazing things, in places I’ve always wanted to see.

Though this journey is ending, I’m not done! I’m determined to continue to travel, and see the world, no matter what my MS becomes, or if it progresses. I won’t let it stop me even if it’s hard. I fought my way through a lot of obstacles on this trip, and I’m proud to say that I was able to get through it. It wasn’t easy, and I had some times where I regretted the whole idea, but I feel like I succeeded anyways. And I hope I can carry that through into my life at home. I think I’ve doubted myself for a long time now, and held myself back in fear. I’ve worried that I won’t be able to achieve the things I want most out of life, but I don’t want to do that anymore. Life is too short to fear the unknown. And it’s all unknown.

A very sick woman I shared a room with in the hospital once told me to never give up. Never stop fighting. She gave me a little pin that said “fight like a girl”. I hope wherever she is now, she can see that I’m trying my best to do just that!

M

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Edinburgh

I made it to Edinburgh! I seriously considered changing my flight and heading home straight from Dublin since I’ve been feeling so awful, but I pushed myself to just go for it. I was already so close and Scotland was my number 1 spot of places I wanted to see on this trip! I’m really glad I did, because it’s amazing here. The flight was kind of awful, on a noisy tiny plane, but I again got assistance and was able to get through it. My taxi driver asked me on the way to the hotel what I had done to myself, thinking I was injured because I had to use my cane. I told him I had MS and I think he felt bad, but it doesn’t really bother me. I get why people would assume that. He was really nice and helped me bring my luggage right into the hotel. Turns out it was actually the wrong hotel, but the right one was only a 30 second walk down the street so no big deal.

After checking in I decided to take a little walk around. This picture below is the first place I went as it’s pretty close to my hotel, one of the main areas called the Royal Mile. I grabbed dinner near by (hugest fish and chips ever seen) and just wandered around for a little while. It’s awesome and they have a lot of street preformers (yay!).

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Since I’m not feeling great I’ve been trying to take it kinda slow. Not sure what’s going on but just feeling overall crappy, and my MS symptoms aren’t doing so well (legs, fatigue, etc.). Last night I really just wanted to lay in bed, but I sort of forced myself to go out for a bit, and decided to ignore how I was feeling because it was the only Saturday night I’d get here and I wanted to check it out! I actually met a couple of girls who live nearby and we became friends because they were drinking a bottle of prosecco in a little hostely bar type place and I just had to inquire what they were celebrating. Turns out one of them had just gotten a new teaching job, but really they just like prosecco. I feel that.

They were both really sweet and we ended up hanging out till pretty late, and they dragged me out to a local night club type place where there were a million sweaty, young people dancing to techno music and drinking in mass quantities. Not really my scene but it was fun..for a bit.

Slept in kinda late today since I got to bed late, so just got some lunch and did a bit of shopping, and some of a bus tour. It was only a short one, and I’ll probably do the rest tomorrow as there’s I think four different lines that you get access to when you buy a ticket here.

After the little bus tour I decided to grab some lunch (at Marks&Spencer’s which, if you don’t know, has the best prepared foods!) and sat under the Scot Monument, just because I could.

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Then I wandered around for a bit before heading back to the hotel. This is probably one of the most beautiful things I’ve ever seen, it’s Edinburgh castle, which sits on top of Castle rock, which formed from an erupting volcano. So nothing special really. ;)

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Overall, I’m glad I sort of forced myself into sticking with the plan and coming here, I think I really would’ve regretted not doing it. Also, the hotel here is the first one in a while that’s actually had a comfortable bed, which is funny because it’s really a budget hotel type place. It also has a really strange sort of bathroom nook type thing, where the shower and toilet and sink are in this sort of pod, and it makes me feel like I’m on Star Trek.

Just gonna take it easy tonight, possibly go for Indian food at a place my new friends told me to try, and I’ll try to get in some more sight seeing tomorrow!

M

Galway pt 2

So the Galway portion of my trip is coming to an end. Just having some lunch at a local pub and then getting the bus back to Dublin, where I’ll stay the night and then fly to Edinburgh tomorrow.

Galway is a wonderful place. So beautiful and filled with old world charm, and friendly people (also a lot of young girls in little to non existent skirts, lol). I’m so glad I got to come here! To be honest though I haven’t been feeling so great while here, I think I might be coming down with something because when I do, my MS stuff feels worse as well, and my legs have been pretty bad here, also the fatigue has been killer. I’m starting to worry a bit something’s going on, but I’m hoping for the best.

I did end up meeting up with that girl I met in Dublin the other night, but I had taken some meds to try and help the fatigue and then had a pint of cider and felt really sick. Oops. So I excused myself and went back to my room after a little while. It’s just really hard to not have at least one drink over here or you feel like a weirdo! I did sort of feel like I had to explain myself to her for leaving for some reason though. I know I didn’t, but I mentioned I had taken some meds and when she looked a bit confused I explained I had MS. She seemed pretty shocked but she was nice about it and agreed I should rest! I’m glad we got to meet up for a bit at least anyways.

I’ve just sort of been struggling a bit coming to terms with everything I’m realizing about myself while on this trip. It’s really shown me my limitations, and it’s just hard to accept that sometimes I think. It’s difficult when you want to do things but your body won’t let you. It’s part of my life now and I know I have to accept that, but once in a while it just feels shitty. I hate feeling like I’m missing out. I know I should just enjoy being here, and focus on what I can do. I’m trying to see past it all and just be thankful for what I am capable of, and not focus on what I’m not. Sometimes I just need to remind myself of that though. It

I did take a little bus tour yesterday around Galway even though I felt kinda shitty, I just wanted to see everything and it was an easy way to do it. I’m glad I did because it was beautiful! And informative, from the little old Irish man who was the tour guide, who was awesome. Old Irish people are the best kind I think.

This is Claddagh bay, just a bit outside the city. So pretty!

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I also bought myself a traditional Claddagh ring, from the place it originated in the year 1750! A store called Thomas Dillion. I really wanted to buy a gold one but it was 250 euro so I opted for sterling silver, a little more in my price range ;)

This is the way the woman said I had to wear it if my “heart is looking for love”. Maybe it’ll bring me some Irish luck! Haha

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There’s one thing I can definitely always do, and that’s eat. I think one of the best ways to get to know a place is trying the local fare. I’ve had some great food here in Galway! These were my two faves, an awesome chicken curry pie and the best beef and Guinness stew!

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So I’m off to Dublin for the night, just staying by the airport, then I’ll head to Edinburgh! Also hoping to get to Glasgow at some point while I’m there and meet up with a lady who goes on the same MS forum as me (woo shift.ms!). It would be really cool to meet up so I’m hoping I’m up to it. Just a train ride out of Edinburgh. I really wanted to see Glasgow as well! Was originally going to stay there for a of couple nights but changed my mind just not to have so much travelling to do. That seems to be the hardest part for me, all the lugging and planes, trains and automobiles. But a day trip in sounds perfect.

And now I must drink more tea and then head to the bus!

M

Galway pt 1

So I got the train into Galway yesterday, holy beautiful! Great view on the way in, sheep and all.
Also this was the first thing I saw when pulling into the station, so off to a pretty good start ;)

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Was really excited to get here, and had a pretty good first night. I of course was right to be worried about the accommodations I had booked, it was kind of awful, with a dirty bathroom and probably the worst bed I’ve ever slept in, and that’s saying a lot, I mean it was ‘I’d rather sleep in a hospital bed’ bad. Woke up in a lot of pain around 3 am and booked a last minute hotel. Bit over the budget but there was no way I could stay there, and it’s all I could find. Honestly, I could handle the gross bathroom if I had to, but if I don’t sleep I can’t function. So I was willing to do whatever it took to get out of there! Just waiting to get my room now and stopped for some breakfast at a cute little outdoor cafe called the jungle, where they’re playing reggae music and serve crepes and sandwiches.

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I’m also loving all of the tea. So much tea.

So I’m actually not as upset by the whole accommodation situation this time, I feel like I’m getting used to it really, and I acted pretty quickly so was able to get it sorted. But hopefully this is the last time it will happen! I feel confident in my next two places so I think it’ll be fine.

The town is really cute, and small, which is a nice change from the big city. Went into the main shopping/pub area last night and watched some buskers (or street preformers) which if you know me, you know I love. There were some really talented musicians, and a random unicycle/fire juggling guy. Here he is escaping a straight jacket on his 7 foot unicycle.

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He also swallowed a long skinny balloon. I don’t know why. But it was really strange, and interesting to watch, and the funny part is, right after he was done his show, another guy came and did the exact same one. I think it might have been his protégée or something. He used the same jokes and everything. I didn’t watch that one. Once is enough. Also I wonder what’s happening to that first guy’s intestines with that balloon….

After I watched a bit of the preformers and wandered around a bit, I went to a local pub that had live music, and I met some really interesting people! I was again worried I’d feel like a loser going to a pub alone, but I’m actually really starting to enjoy it! Sitting at the bar makes it easier to talk to people. I spoke with an older Irish woman for a while, who was awesome and said things like “feckin” and “slancha”. (My first real Irish cheers!) She was hilarious and complained a lot. She also gave me a hug and kiss on the cheek when she left and kept telling me to be sure and mind myself, as she was a granny and worried about me travelling alone. She was sweet and we drank cider together.

Right after she left, a younger American mom and daughter duo came and sat next to me at the bar, they were from Portland and on a trip to celebrate the daughters high school graduation. Cute! We actually got talking about my MS which I hadn’t planned on but they were really great and were talking about the woman’s father who was with them on the trip who has Parkinson’s, and his difficulties with the travelling. Even though MS and Parkinson’s are two different things, they are both neurological diseases, and I felt like I could relate on some level to some of the things they mentioned he was struggling with while travelling, and I felt comfortable talking about it with them!

Not sure what I’ll get up to today yet, it’s a beautiful day, so I’ll probably go sit and read in the main square to start with. After I shower off the nasty last place I stayed at ;) and rest a bit since I’ve barely slept. And then later I think the girl I met in Dublin might be coming to Galway and we were taking about meeting up! So we’ll see where the day takes me, and I will of course report back ;)

M

Oh, P.S.

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#ireland. Lol

Dublin

Alright. So I made it to Dublin yesterday, and got off to a bit of a rocky start to be honest. The place I was supposed to stay ended up not being what it showed on the website etc. It was a hostel type place so I wasn’t expecting it to be amazing, but I booked a private room with a double bed, mostly just to have a hostel type experience and meet other people, but it was going to cost about as much as a hotel anyways so when I showed up and they had me in a room with two bunk beds and a twin, with ripped up floors and a gaggle of american preteens taking over the place, I decided to go elsewhere. Found a little b&b in the last minute, and I mean I booked it online and showed up 20 minutes later. The guy didn’t even know I was coming and I had to call him on a number that was posted on the door to come and let me in!

Now the place isn’t perfect, and a bit lonelier feeling then the busy hostel, but the room is better here at least, more private, and slightly less expensive for a normal size bed. It has an unfortunate amount of stairs and is above a pretty loud road, but it’s for two nights and I’ll make it work. May or may not have called my mom in tears before coming to that conclusion, and also one of my best friends (thank god for skype credits!) but I got there in the end. Bit of drama feeling like I’ve made a horrible mistake taking a trip on my own, but trying to now just stay positive that it will all work out for the best!

Saw some cool stuff today and yesterday on the hop on hop off bus, and most people have been really friendly so far. My favorite being the mobility assistance guy at the airport who helped me get my bag and took me right to the bus I needed! He was also kind of cute which didn’t hurt ;)

This is a shot of Grafton Street which is a big pedestrian shopping area, with some cool buskers and restaurants too

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And these are some freaky old guys who sit perfectly still like statues and move when people pay. I have a feeling this baby didn’t tip very well though. Also, on closer inspection, I think the one standing on the left is a fake!

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I also stopped in a little museum (actually called the little museum of Dublin) mostly because it was free with my bus tour ticket, but I showed up just in time for a little tour and learned a bit of Dublin history which was cool!

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Just back in my room now for a bit of a lie down (that’s how I speak now that I’m so Irish) and I think I’m gonna head down to the popular Temple Bar area later tonight for a wander and a cider and just check out what’s going on! It’s apparently “Bloomsday” which celebrates the life of the author James Joyce (born in Dublin!) and people dress up for it all around the city in Victorian garb, though I haven’t seen many. Maybe tonight there will be some events for it!

Off to Galway for a few nights tomorrow afternoon, looking forward to it (and also crossing my fingers the accommodations I have booked aren’t awful).

That’s all for now!

M

Italia!

So yesterday was my final night in Italy with the family. We ended in Florence! Of course today is finally a reasonable temperature, just in time for me to leave lol.  I’m on the plane to Dublin now, and I figured I would use this time to give a bit of a rundown of the different places we visited.

Here we go:

Venice-

First impression of Venice was it was beautiful, and amazing to pull up to it in the water taxi(it is an island after all, with no roads!). It was just a casual 36 degrees celsius when we arrived, which was a good indicator of what we were in for!

As I mentioned, its not the most accessible city, but if you know your way around the back streets (which I don’t) you can avoid most of the stairs.

Overall, Venice felt a bit too touristy for my taste. It’s really something to see, but I think once is enough for me. Best part was the guided tour in a water taxi type boat with a local tour guide explaining what everything was! Really helpful cuz before that it was beautiful, but I didn’t know what anything was!

Forte dei Marmi-

Talk about ritzy! So gorgeous (and expensive) but probably my favorite place that we visited. A smaller town, with lots of beaches, felt like vacation instead of the hurry up and go of Venice. Its a bit of an unknown gem, at least to North American’s, we seemed to be the only one’s there and we were told they don’t get many, but European’s love it! Great place to relax, and take it slow. Also the staff and workers if the town were the friendliest we encountered in Italy for sure!

Florence-

I feel like I didn’t really get to experience all that Florence had to offer. We did a bit of a hop on tour, but it was just so hot, being in the city made it feel even hotter, so I really took it slow. Beautiful view, awesome food market , and great food, so overall its a win in my books either way.

Italy overall was difficult, and frustrating at times, but worth it. It took me a good 4 days to adjust to the time zone, and I really didn’t feel well, which the heat just made worse, but I’m glad we went! We had some great experiences, and some crazy ones too (like cab drivers getting us lost and last minute accommodation changes) and I will never forget any of it!

I’m thankful to my dad and step-mom for taking us on this incredible trip, and for my siblings for trying to better understand my limitations, and embracing the things we had to change around to make it work. I’m also thankful for airport assistance helping me get around, and speeds me right through the lines (that might just be because I’m actually a VIP and they know it though) and styling foldable travel canes ;)

Now onto my next adventure, Dublin here I come!

M

Just say no to bikes.

So today as I mentioned we went to the beach. Our hotel offers bikes to use so I thought id see if that was any easier than walking, turns out it’s much more difficult. Being unsteady to start with probably didn’t help the situation. I wanted to at least try it though. Had to walk it back after, real slowly, because my legs are very angry these days. They feel about a hundred pounds each, and sore as if I’ve been running a half marathon or something! I mean I guess I don’t really know what that feels like, but I’m sure it’s pretty bad, so it makes sense to me ;)

So apparently beaching isn’t as easy as it once was for me. I stayed in the shade and cooled off in the water but my body just wasn’t as into it as my mind was. And the bike on top of that was just a silly idea I think.

I also just generally feel judged for not being able to do these types of things. It’s not like I don’t want to. Unfortunately it’s just a bit harder for me now with the addition of that little jerk we call MS. I’m trying my best, and that’s all anyone can really do.

Looks like I’ll be using the cane I brought tonight, dirty looks and all. Not sure what that’s about, but I’ve gotten a few stare downs lol.

Alright that’s all for now, needed a little vent, and I did warn you I was going to be honest! ;)

M

Florence..ish

So we made it to Florence. We took a train from Venice, the fastest train I’ve ever been on, it got up to 300 km/h at one point! Look, I have proof!

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The speedster train dropped us at the central station in Florence and we made our way to the apartment we were going to rent from air bnb. It ended up not working out though. The guy told us it was “just a few” steps leading up to the place, which turned out to be two flights. Let’s just say my legs and stairs are not friends. I could manage it once or twice a day but I really would’ve just been tiring my legs out before even getting into town! Also it was about 37 degrees there, I think we’ve come during a bit of a heat wave, so we decided to head to a beachy type town on the Tuscan coast called Forte dei Marmi for a few days. A flight attendant told us about it on the way over from Toronto saying it was beautiful and he was so right! Here’s our view from the beach today:

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The train over from Florence was… Interesting.. Not at all like our first speedy train, super hot and packed with people, but beautiful scenery to look at on the way!

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So it all worked out in the end. The heat here is much more tolerable, I’ve found it’s really been affecting me these days, but it’s better being near the water, and no one can say no to a dip in the Mediterranean! Slowly starting to adjust to the time zone, and make the best of it. Started to worry I might have been a bit too ambitious with my big travel plans, but going to take it one day at a time, and stay positive about it!

We’ll head back to Florence after here (but stay somewhere else) and see the sights before I head off to Dublin!

Heading to a nice dinner tonight at a place recommended by our new friend Sara, who works at the hotel. Ready for some (more) pasta!

Ciao for now!

M