A travel guest post by Pippa aka Sassy Spoonie

As I'm away, woo hoo to that, I'm handing my blog over to two lovely ladies that have agreed to share their recent holiday experience with you. I love doing these interviews and finding out how others managed to balance illness and a trip away. As well as learning about different places and how they fare on the spoonoe criteria. I hope that in turn this gives you some ideas where might be good for you to travel should you wish and feel able to do so. It's a very big step to take and I believe that hearing from others that have experienced it can help you feel more confident in that decision. Remember though to always proritize your own health and what you personally can manage, as we are all different.

So today I am handing you over to the adorable Pippa, who is going to share her experiences about her recent trip to Benidorm.



Copyright: SassySpoonie

Hey everyone! I was asked by the lovely Sian to share my experience of travelling as a spoonie, so I’m here to tell you a bit about my holiday and share some tips for any of you considering going away! I went to the very classy Benidorm (in Spain), and for those of you who have seen the TV show I can confirm it’s exactly like that in real life.

We flew with Jet2, and this was the first time I had asked for special assistance at the airport so I was a little nervous.  I don’t use a wheelchair and didn't choose to use one of the airports, but as an ME sufferer I struggle to stand for long periods of time, and was nervous that queuing would drain all of my energy. However, by booking assistance it allowed me to queue jump at check-in (I got some real stink-eye from other travellers for that!) and get through security as fast and painless as possible. And although I chose to climb up the plane steps once again I was allowed to queue jump.

The flight itself was something I was worried about as flying has always made me physically unwell even before I got ill. And of course, Benidorm is a popular stag/hen do destination so the flight was…rowdy… to say the least. I think flying is one of the most uncontrollable aspects of going away, however one stellar tip is this: get special flight earplugs. They reduce noise and are specially adapted to help with painful ears during the flight. Eye-masks are a good shout too.

My spoonie hand luggage must haves are: earplugs and eye mask as mentioned above, lots of water to keep hydrated, mints or chewy sweets for helping ear popping and face swelling, extra socks in case the plane is cold, any meds you need plus extra painkillers, tissues and a good book/ something to do.


Copyright: Sassy Spoonie

We researched the hotel a lot before we booked and decided that all-inclusive would be the best option, so that food would always be in close proximity if I wasn’t well enough to go out. That was a good plan, though all-inclusive food is typically set out as a buffet. This is slightly less good if you have severe allergies like I do, as there’s a greater risk of cross-contamination. If you have any dietary requirements, enquire about this as early as possible so they know to expect you. One night I wasn’t able to eat really any of the food because of allergies, so the absolute babe of a chef basically cooked a whole chicken for me without me asking!

Another important aspect of your accommodation is the location, both of your room and the hotel itself. Some hotels let you specify a quiet room which is what we did, and I would definitely recommend that if you experience sensory overload or noise sensitivity. We were on the second floor but there was a lift so this wasn’t a problem for aching legs. A lot of the time we stayed in the hotel by the pool, but the beach was only 5 minutes away so we did this one day when I was feeling up to it.
 

My biggest fear before travelling was that I would end up really unwell and not be in a position to do anything about it; I wouldn’t want to go all that way and spend all that money to lie in a dark room for 5 days. There was one day where I was feeling extra rough and that was really hard, but it just reminded me of the need to pace properly. So my next tip would be: don’t overdo it on the first day. Take it easy whilst your body adapts before you start trying to be adventurous. This was a sore point for me as I was surrounded by people my age who were completely carefree and having a good time, and it was sometimes tough emotionally because that was me a few years ago. Therefore, it’s so important to get the balance right between being sensible and still having a good time. It’s tricky, but it’s possible!
 

At the airport on the way home I found them really efficient and respectful of my needs. Having an invisible illness as well as being young it can often be difficult for others to understand that you need help, so if you are in a foreign country and can't communicate this it can be a worry. However I experienced no problems, I even thought they were more efficient than in the UK.

I think my final advice to somebody with a chronic illness who was travelling would be this: thoroughly prepare, pace yourself and have a good time. After all, you deserve to!  I have always loved to travel so I'm determined to keep seeing as much of the world as I can as long as my health allows me to :).
 

Thanks so much to Pippa for doing this blog post and sharing her experience. You can follow Pippa on instagram @sassyspoonie or her Tumblr. She also runs a great little business Spoonie Survival Kits, which are gift bags full of nice things to help anyone with a chronic illness keep a smile on their face. You can find out more on instagram @spooniesurvivalkits, and visit her etsy shop at www.etsy.com/uk/shop/spooniesurvivalkits.

Sian X

 

What's in my holiday make up bag?

Copyright: Sian Wootton

Today's post is a glimpse inside my holiday make up bag. It's been so hard tp narrow it down and it keeps changing by the minute. As I don't get to put make up on that often I do enjoy having the chance to wear it more (hopefully) whilst away and getting to experiment with different looks. When travelling to a hot country though choosing the right products is important. You want ones that are going to withstand the heat and not slide off your face. Last year I found that some products made my face sting as I was sweating (sorry TMI.) Even tried and tested ones that have never had an effect before. So I'm a bit wary of what I take. Most of the products I'm taking are drugstore because I really don't want my more expensive stuff to melt and be ruined. I would cry. That being said I still adore the products I've chosen to take.

Copyright: Sian Wootton

Face

Soap and Glory solar powder

Rimmel Stay Matte powder

Benefit license to blot

Smashbox camera ready bb cream- with spf 35 it's really protects your face whilst providing a bit of coverage

Tarte cc stick

L'oreal True Match concealer

L'oreal True Match highlighting concealer

Benefit The Porefessional primer

Bourjois Cendre De Rose Brune little pot blusher (fab they come with a brush)

Milani Luminoso blush (this comes with a brush too, which is so handy)

Benefit face spf 45

Clarins Beauty Flash Balm

Copyright: Sian Wootton

Eyes

Collection Glam Crystals eyeliner Rock Chick

Collection Glam Crystals eyeliner Le Freak

Maybelline Colour Tattoo on and on bronze/ bad to the bronze

Maybelline colour tattoo gold

Maybelline Colour Tattoo pink gold

Collection Eyes Uncovered nude palette

Maybelline The Falsies mascara (not pictured but I swapped it in place of Benefit Rollerlash as it's more waterproof, plus I love it)

L'oreal Super mat- matic black eyeliner

Copyright: Sian Wootton

Lips

Bourjois Rouge Edition Velvet Olé Flamingo- I love these as they last so long

Bourjois Rouge Editon Velvet Hot Pepper

Maybelline Colour Drama Love my Pink

Maybelline Colour Drama Keep it Classy

Copyright: Sian Wootton

Tools

Real Techniques miracle complexion sponge

Eco Tools Fresh and Flawless travel brush set

Real Techniques setting brush

fluffy eye shadow brush

Eye brow/ angled eye liner brush

Real Techniques Fan brush

PS Love double ended eye shadow brush

I'll be putting some of the products in my hand luggage if I want to make my face look a bit more presentable on the flight or at the airport.

I will be putting in the Smashbox bb cream, Tarte cc stick, True Match concealer. As well as my Bourjois healthy balance powder as it has a mirror and my Elizabeth Arden 8 hour cream.

What are your holiday make up must haves?

Sian x

Coping whilst on holiday



copyright: Sian Wootton



 I realised the other day that so far my travel tips have covered everything from researching your trip to getting there, but I've not actually covered the actual holiday itself. And that's the best bit isn't it! What all these tips and advise have been leading to. So finally today I'll cover some tips for the actual holiday itself.

So with this in mind the first tip is put all that research and planning to good use. You know you have put in a lot of effort to get there and as a consequence you have bought everything you could possibly need with you to make sure you're comfortable. Remember to include extra help for noise and light sensitivities and relaxation methods and put them to good use.

Be aware that the journey will take a lot out of you. Let yourself recover and rest properly. Also make sure you rest well to prepare for any travelling. Save those spoons up, you'll need them.

Keep to a routine as much as possible. Especially in terms of bed times etc. The closer to your regular routine the better. Pushing yourself too much will potentially spoil your holiday.

Don't put any extra pressure on yourself to do too much or push yourself beyond your capabilities of that day. Nor respond to any extra pressure from others. Take it all at your own pace. Chances are you came away to enjoy some sunshine and relax so be sure to prioritize them alongside your health.

Keep taking your tablets at the right times. Be organized with them. Keep an alarm system if need be. On the journey to and from and on any trips out make sure you have them all to hand and in doses.

Be sure to still take breaks as you would at home. Sometimes this may mean a full day in bed. Even if you are just lying on a sunbed relaxing, still make sure you take a proper rest. Listen to your body. Taking these breaks will help you make the most of the experience rather than pushing too much and winding up in a collapsed heap.

Be clear with  the people that you are travelling with what you feel comfortable doing and how that affects them. I know a lot of people worry that they are stopping others from enjoying their holiday to the fullest because they need to look after you but remember they already knew the restrictions of your illness and if they didn't chances are you've not chosen them to come away with you in the first place. However it can be best before going to just be clear on how this holiday might be very quiet for all involved and that anything beyond moving from your hotel will be a bonus. Let them know that it's ok if they want to go out and leave you behind, if of course you are ok with that but hearing you reassure them that you will cope ok on your own for a few hours may help them to not feel guilty in leaving you behind. Just be very honest and candid, tell them that what you say is what you mean and not you trying to put a brave face on things. Say that if you want them to stay you will say so and likewise if you don't. And the same goes for if you want to get out.

copyright: Sian Wootton

Going in the pool or sea, get yourself a pool noodle (which you can see in the photo above.) You can get the benefit of being immersed in the water to cool you down as well as having an effect on your muscles but you don't have to kick your legs etc. Plus if you wrap it around the metal pool steps you can use it as leverage to pull yourself up.

Don't worry about getting a tan. This shouldn't be a priority. Do your best not to burn. You don't need to feel extra poorly. Enjoy the heat but be responsible. If you don't get a tan it doesn't mean that you didn't have a good time. Putting on sunscreen  might upset your nerves a bit but sunburn will cause you a whole heap more bother. If you suffer from fibromyalgia and have particularly sensitive nerves maybe opt for a once a day option, but always choose a high spf. 

Stick to your dietary requirements as much as possible. I'm talking food intolerance's etc here, not whether you should or shouldn't enjoy that yummy dessert, come on you're on holiday. Being in a foreign country you may find it hard to find certain free from foods, if this is a big part of your diet consider taking a few snack items with you. The world is becoming much more savvy to food intolerance's and free from food can be found in more and more places. A great website I found whilst researching in Trip Advisor http://www.celiactravel.com/ has printable explanation cards for use in restaurants and cafes, explaining your food intolerance's in the native language of where you are going. Also be aware of the extra sensitivities holidays can have on your stomach and take care of it. Pack medication to help your stomach should it throw a wobbly, such as immodium, antacids and rehydration sachets or tablets.



even in 40 degree heat my heatpad is practically attached to me
copyright: Sian Wootton

Stay hydrated. This is always important but even more so in the heat. Being dehydrated will make you feel more ill. Also if you feel the heat is causing your muscles to ache or niggle more using re-hydration tablets of some kind of sports drink like gatorade can help restore electrolytes and minerals and help relieve muscle pain.

Stay cool. Many of us have trouble regulating our temperatures and being out in the sun can exacerbate this, the lovely Jo from the blog purlbeadsjo has wrote a great post on ways to help you regulate your temperature, be sure to give it a read here for some great tips.

Be prepared that things won't always go to plan. Days where you can't do as you wished. Etc etc. We are kind of used to that though, aren't we? Don't let it take up to much room in your head. Breathe. And go with it. Let yourself recover. 

Refunds and travel insurance. In case things go really wrong it's good to be fully covered. When booking your hotel opt for the refundable up until the day option just in case. It may be slightly dearer but it's good to have in place. Also make sure you have travel insurance and be sure to be honest in declaring your health conditions in advance. You can do this online. You need to complete a declaration which asks about whether you are affected daily by your illness and whether you have been admitted to hospital in the past 6 months. Unless you are a greater risk of needing medical treatment whilst away or are putting yourself at risk then chances are you will not need to pay more. I have a separate post on travel insurance here.

As I mentioned in my city break tips, (which you can find here) find ways to enjoy the place you have gone to on a smaller scale. Enjoy some local food. The different produce in the supermarkets. The sound of foreign accents. The different smells. The weather. The air. The things that let you know you're in a different place. 

Dress up- If you are able to, of course. Enjoy wearing things that you wouldn't get a chance to at home. Give your confidence a boost and make yourself look and feel fabulous. I like to opt for dresses, as they are easy to put on, instantly give you a different look and because I don't get to wear them much at home. I love a maxi dress for effortless glam.

Most importantly, relax, have fun and enjoy. Be grateful that you have been able to make it there and experience something new and give yourself a pat on the back for trying. You did it!

I'll add these tips onto the spoonie travel tips page on this blog too (you can find it on the right of the homepage or on this link) so that you can see all the tips and advise I have put together in the one place. From researching to now including enjoying the holiday. I'll also put the city break tips on there. As well as links to all the travel interviews with other spoonies. There are more travel interviews coming soon too from some lucky ladies that have been on holiday recently. 

Sian X

How to survive a wheelchair ride in the city

As I spoke about in my post about my trip to Brussels, which you can read here, navigating the city in a wheelchair certainly has it's challenges. Inspired by my trip here's a humorous look at how to be prepared for a wheelchair ride in the city.

Source: Pinterest

Source: Pinterest

Source: Pinterest

Helmet- the cobble stones and paving can give you quite the bumpy ride, as well as navigating the curbs and often non existent drops. Or the drops in the pavement that you hit your front wheels where the road rises from the gutter. All of these can make you go flying forward and potentially face first onto the ground. So buckle up your helmet and your seat belt.

Knee pads/ shin pads- In the same vain as above. Protect your legs.

Steel toe caps-  I'm forever being pushed into walls or people, with the pusher's misjudging how far my footplates stick out and how close to walls etc you are. And I am always the one that gets the dirty looks if I'm pushed into a person.

Bell/ mega phone- Cities can mean a lot of foot traffic and when you're in a wheelchair, even with someone pushing you being lower down you aren't on peoples eye line or peripheral vision. Using a bell or megaphone can help you clear the path to get to where you want to go.

Walking Stick- Failing the above use a walking stick to shift people out of your way. If you can shout "exterminate, exterminate" at the same time all the better. However on a practical level, if you are able to stand or walk a small amount a walking stick can be beneficial if you need to get out of your chair momentarily to navigate the kerbs or steps into buildings etc.

Sports bra- If you're a woman, especially one with larger boobies the cobbles and paving are going to cause some serious jiggle. Keep them protected and supported.

Snuggie- The blankets with the sleeves. Not only will they keep you warm if it's cold out but if you do faceplant at least it's that that gets dirty not your clothes. Just be sure to tuck it in so it doesn't get caught in your wheels and consequently making you faceplant in the first place.

Big red buggy- From experience a big red double buggy as your escort really helps clear the way and makes people take notice. Watch out folks, the Queen is coming through.

Spoon- Always need an extra one right?  Plus you may stop for waffles!

A sense of humour- There are always going to be some incidents, show the world you can still laugh. 

Happy travels!

Sian x

Spoonie in the City: City break travel tips

Copyright: Sian Wootton

Following my post about my trip to Brussels, which if you have not read you can read here, I wanted to compile a list of tips and advise for anyone that might be considering a city break holiday. You can read my other travel tips here, some of which may crossover into organizing a city break trip, so be sure to read them too.

Before you go

Researching a good hotel- Trip Advisor is a great app/ website for helping you find exactly what you need from a hotel. You can refine your choices not only by price range and star rating but also by facilities such as wheelchair accessible rooms. A hotel that offers room service can also be a good option in case you are too unwell to leave your room. Look through the photos and read through the reviews to get a clearer picture of what the hotel is like. Look out for comments like "a lot of road noise" or "rooms at the back of tbe hotel have no road noise." Also use Google maps to see where the hotel is situated, if it is close to where you want to be but also is it located somewhere quiet.

If you need an accessible room usually you won't be able to book these through certain websites. Usually you need to book direct with the hotel. But certainly look up what the offers are and see if by booking direct they will price match that.

Request a room in the quietest area of the hotel. But also remember to pack ear plugs and a sleep mask for extra help should you need it.

If you are going to see a specific thing then see if you can stay as close as you possibly can to it, to give yourself the best chance of being able to do so.

Do the maths- flying might seem your quickest way to get to some places but remember to factor in your journey time to the airport, how long you need to be at the airport before your departure and the length of your journey on the other side, on top of your flight time. Sometimes other transportation might be less or the same. If you live somewhere with great rail links then this could be worth considering. Airports require a lot of attention and concentration that could be time spent switched off and relaxed on a train. Cost does of course also sway that decision. Eurostar has some great offers for wheelchair users and a companion. As well as offering great special assistance. It's certainly something I would like to try.

Pack smart- Not just the items you pack but about what you use to pack it all in. With a city break it's very easy to think that you will only use hand luggage if you are flying by air and with the expense of putting baggage into the hold that temptation grows. Firstly, check your airlines policies on how many pieces of handluggage you can have. Some you can only have 1. You can see a list of the current restrictions on the contents of hand luggage and hold luggage here. Then think logistics. Can you manage with a big carry on bag? If you are in a wheelchair can someone push you and the cases, which is a useful question for both hand luggage only and if you are checking in hold luggage. Airport assistance can help you with bags to sime extent. Check with the airport that the assistance company there offer a from the drop off point service. In Manchester airport I have seen call buttons to call for assistance from car parks and drop off points. Think about the times you are not at the airport. Transfering to your hotel etc and getting back to the airport. If you intend to get a taxi, yes you may get lucky and have an assistant that will help you with bags until you are in the taxi/ coach but this isn't always a guarantee. If you are in a foreign country there may be language barrier problems and it's always better to be over prepared. And if your illness/disability is invisible they may have an even harder time understanding. Ways around this can be to prebook a taxi and explain that they will need to park up and help you with your bags into the airport. You could also book a car service for when you arrive at your destination who will pick you up from inside arrivals. This way you know you have the help that you need.

Another question you need to ask if you are travelling by plane with regards to packing is: Are the items I need to pack ok to put in hand luggage? Rules and regulations catch a lot of people out so be savvy. The items you really need for your trip you don't want left at customs. So keep to the rules and play safe. If you can compromise on some items to keep to hand luggage only then do so otherwise you may need to think about checking a bag into the hold.

Pack things to help you cope with any extra noise and light. Such as earplugs, ear defenders and eye mask.

If you're going abroad learn the word for thank you to be extra polite when people help you and offer assistance.

The Journey

Either way you travel can be a long time to have your legs standing or sitting. So try and elevate them as much as possible. Flight socks can be great for helping blood flow and easing leg pain.

Have your essential items to help you cope with the journey as accessible as possible. Eapecially if you are flying. I like to pack the things I know I will need straight away in a separate bag (although if the airline only allows 1 piece of hand luggage then it is also small enough to go into larger bag). In this I put my neck pillow, back pillow, travel bands, some face wipes (on take off I sometimes overheat so I have these to cool down, also at my side for panic induced sweats) sweets and mints to help my ears for take off.

Getting around

Research how accessible public transport is where you are going. Especially with regards from getting from the airport to your hotel. Do the buses have wheelchair spaces? Does the metro/train have elevators for you to get to the platform? Or no drop between the platform and the train. Do you need to prebook to get assistance to use the trains? How big are the taxi's? Would your wheelchair fit in the boot? Do they have specialist vehicles for wheelchair users? Trip Advisor forums can provide a lot of this kind of information. Booking a car service can be useful as you will know all the info in advance as well as have help as soon as you arrive. 

Plan your route- Know the way to the places you want to go. Getting lost is not as fun when you are gritting your teeth trying to do what you can. Also scope out cafe's etc that you could stop at should you need to sit down and have a break. Planning your route is all the more important if you're in a wheelchair. Tourist information may have a special street map for accessibility showing what are the best routes to use and ones to avoid. Some old cities have cobbled streets and while they give the place so much history and character they cause so much pain and discomfort. Also always be on the look out for where you can cross the road, especially for drops in the kerb. 

It may be worth paying for data usuage on your phone whilst abroad so that when you are not in free wifi spots you can still consult google maps or an attractions website. Most phone companies have good deals nowadays.

With this in mind, also consider purchasing a power bank/ portable charger to make sure that you always have enough battery power on your phone. Especially if you are taking photos with your phone which can quickly drain the battery. 

In a wheelchair or on foot either way wear comfy shoes

Many cities and towns are old and not necessarily very flat therefore accessibility can be an issue with steps into the buildings etc. Also in some countries their accessibility policies aren't that great and you may find some places you won't be able to visit. Or in some restaurants/ cafes/ bars there won't be an accessible toilet.

If you want to go sightseeing research those that are accessible or don't involve climbing up many steps etc.

Padding! Cushion yourself in the event of a bumpy ride over cobbles or bad paving. Also if you are out for longer than you are used to they will help keep you comfortable.

You might be a spoonie but...

Enjoy the little things. Sometimes you aren't going to get to enjoy the bigger attractions the city has to offer so immerse yourself in getting your culture fix in smaller ways? Enlist your senses. Try some of the local delicacies and refreshmebrs. Is there a much raved about ice cream parlour with ice cream you just have to try? In need of some quiet then visit one of the parks and enjoy a picnic of yummy goods. You may find this is where the locals come too and be able to enjoy the sounds of a different language. Visit a mini market and explore the different goods they have from back home and buy them if they take your fancy. I'm always so impressed by the amount of different Harribo abroad. And who can resist a giggle at a chocolate bar named Plopp? Anything that let's you know you're not back home.

Basic care

Give yourself plenty of rest breaks throughout your trip as you would at home. Even if that means taking a day or more of down time to recharge. It's better to not keep pushing too much and then potentially make yourself miss more. You might be in a different place but that illness is still with you (damn them!) 

The same with getting good quality sleep. Sleep let's us recover. 

Be aware that you might not be on a beach holiday but if the sun is out be sure to put on sunscreen. Wearing a hat can protect you a lot, burning the sensitive skin on your scalp and heat stroke can make you feel very ill. Also be sure to stay well hydrated.

Invest in a water bottle with a filter, such as the bobble bottle. That way you can drink the tap water and know that it's safe to drink.

Relaxing methods- Great for airports, on the plane and also when you need to take a break. Make a playlist of relaxing music. Use meditation tracks. Whatever you use to chill out.

Finally

Be prepared that things won't always go to plan. I guess as spoonie's we are always prepared for this but approach everything with as positive an attitude as you can and be armed with back up plans and coping stratergies.

Be grateful for what you did get to do and not focus on what you might not have got to do. Appreciate that you were able to make the trip. Savour the memories you made. Take lots of photos. Scrapbook or journal about it. 

Get yourself a souvenier from the trip to remind you of this achievement.

Give yourself a big pat on the back. 1) for having the courage to try and 2) for going. It's not easy but with planning and coping stratergies you got there.

Let yourself recover and rest for as long as your body needs afterwards. Clear your schedule for the week you get back and let yourself recover properly. Lie back and think of the happy memories. 

I hope these tips are useful and come in handy to any spoonies or their travel buddies that are considering visiting a city.

Sian

x

Spoonie in the City: A trip to Brussels

copyright: Sian Wootton

My Mum and I went to Brussels, back in February for 4 nights, which is relatively short for a spoonie to cope with but it was the best we could stretch to. The purpose of the trip was to visit family and to spend as much time with them as I could. Getting to experience the city was always going to be a big if and to be honest the biggest way that I intended to fully experience the city was through my taste buds. Even stuck in a hotel room or at the apartment that's something I could still indulge in. Hello land of chocolate and waffles! Plus just waking up somewhere different; seeing a different view from your window, hearing new voices and different accents, that in itself is an experience. They might be small things but they're things that let you know you're not in Kansas anymore. 

When booking our hotel we chose one that was closest to their apartment for practical reasons. They live in the more business area so that's also a benefit for less noise. The hotel was actually quite a posh one with it being around the European quarter but we managed to get a good deal. I've never stayed in such an upmarket hotel before, so that in itself was also a new and exciting experience. We deserve to spoil ourselves every now and then right? When booking they were even kind enough to give us an upgrade to more of a disabled room. Even though I saw that the showers were walk in ones and therefore quite manageable I only asked if I could have a plastic chair to sit on in there. However they upgraded us to a room with a more accessible bathroom, which was great.

We took an evening flight, so I had a full day to rest as much as possible. Also it meant that Jon could come pick us up from the airport after work and take us to the hotel, which was helpful and meant we didn't have the added stress of getting a transfer. As well as being able to manage with the wheelchair and 1 large case between the 2 of us. We needed the large case for all the chocolate I intended on bringing home. Booking in to the hotel they were great and helped us with our bags. Then it was pretty much 'jump' into bed and recover from the travelling.  I was so excited that there was a plug right by the bed to plug my heat pad into.

Breakfast in the hotel was served until 11am so that was pretty great and luckily I felt well enough to make it down. I could hear the waffles calling! I then had a few more hours of rest before we met up with Ola and the babies at the hotel. We had lunch at a cafe that was part of the hotel complex and after because I felt okay we took a walk/ wheel to their apartment. Once there I made sure I rested in between cuddles and singing nursery rhymes. It's very hard to put those babies down though. Half way through dinner I started to crash and needed to go lie down. I think crashing was quite inevitable, I'd done a lot in those 2 days, especially when you compare it to normal. Plus I hadn't got a lot of sleep the night before. Being in new environments can make it hard to get comfortable. New pillows, the room temperature, different smells, different sounds your Mum snoring ( sorry Mum!) Once I'd recovered enough to move again Jon gave us a lift in the car back to the hotel.

I knew that night that there was no point making plans for the next day and that the only plans that I had was to have a quiet day. This might seem like a waste of a valueable day but remember you still need to take care of yourself. Unfortunately your illness has made the journey with you. I did actually make it down to breakfast but from then on it was back in the pj's and a day of napping and netflix. Netflix in Belgium is way better. I did worry though that my Mum might be bored with doing nothing but she said she was quite happy to have some down time too. In the evening we orderd room service and watched confessions of a shopaholic.

copyright: Sian Wootton

That day of rest really did me good. After breakfast the following day, we met up with Jon, Ola and the twins and as I was feeling good we went on a bit of sightseeing tour. Seeing the city with people that live there gave us a good advantage of them being our tour guides and as they have a double buggy they know about some of the best routes to take that would also be good for wheelchairs. They had also been to tourist information before our arrival and got an accessability map, showing the best ways to go and ones to avoid. There are a fair few cobble stones in Brussels, which was not the best for comfort. Also I had to step out of my chair a few times due to some really rocky cobblestones and if there were no drops on the kerb to cross the road, especially on the bigger kerbs. It also helps when there's not trucks parked across the pavement. Having a big red double buggy in front of you however does help clear the way and make people take notice of you. We rarely had to use the words excuse me. As Brussels is an old city quite a few of the building aren't very accessible, there might be steps into the building (I made an exception for the sweet shop) steps inside the building or the cafes/ restaurants don't have accessible toilets. We went to the Grand Place one of the main squares and to see the mannequin pis, then one of the galleries. Stopping for waffles and going into some chocolatiers. I got so many samples it was amazing.

 It was quite a cold day but of course being in a wheelchair means that you aren't moving about to keep warm and so I felt really cold.  I wanted to get indoors to warm up and luckily we found a restaurant with a big fire to sit by. They had a good deal on a 3 course set menu so we opted for that, only half way through my main meal I could feel myself starting to flag. Being by the fire was actually making me feel worse and I could feel myself getting really warm and starting to sweat. Half from the heat of the fire but also because my body was having a strop. I began to feel really queasy and panicked I was going to throw up. The bathrooms were upstairs and the way my legs were feeling getting up the stairs was not an option. So that caused me to panic all the more. I kind of demanded that we leave as soon as possible. Spoonie Diva. Anyone with children will know that when you have a baby never mind 2 it can take a good while to get ready to leave. Also we had some language barrier problems with the waiters when we asked if they could package up our dessert (another waffle) to go and they thought we meant could we eat it outside. Luckily Ola and Jon speak a little French but I think the waiters still didn't quite understand. During this time I was of course getting worse and getting naggy with it. Having such a lack of control when you really want to feel in control is difficult. All you want is to be able to get yourself into a more comfortable situation but you can't and that is hard to deal with. Luckily once we were outside I did start to feel a little better, I just wanted to get back and put my feet up though. Although it ended roughly I was still absolutely made up that I had got the chance to experience some more of the city. Especially the more touristy parts. So at least if when people ask oh did you go to Grand Place? I can say yes.

copyright: Sian Wootton

The next day was our last day. We had to be out of the hotel by 12pm but our flight wasn't until the evening, so we spent the day at the apartment. I tried to rest as much as possible as I was very tired from the day before and knew the travelling later on would wear me out. And of course I had to get in lots of last minute cuddles.

Unfortunately our time at the airport was not a good experience. It started off well. When we checked in the man noted our special assistance request and rang up to check all was in order and that they would meet us at the gate (and the number of the gate) to take us to the plane. We got to the gate early and waited in the special section reserved for special assistance passengers. Shortly after the gate staff arrived to start boarding passengers. However as the queue was getting shorter the more we started to think something was wrong as no one had come to collect us. But the man at check in had assured us all was in order and I thought. The queue was down to the last few people and still no assistance. I found it really odd too that the gate staff could very clearly see us waiting and that my wheelchair very easily gave it away that we required assistance yet they hadn't thought to question where the assistance was. You need to take a lift down  to the concourse which is only accessible by staff so whether they thought I was going to wheel myself down the stairs I don't know. When the queue was on the last couple of people we went up to the desk, thinking this is just ridiculous. We had to actually tell them that we had booked assistance and so they then tried to call the assistance team about 3 times. Finally someone arrived and took us down in the lift only to make us wait for ages again as she asked whether I needed the ambilift to get on to the plane. Yes, yes I do as stated on my boarding pass and we were assured at check in was arranged. Plus they'd already took the airplane steps away. After more calls the ambilift showed up and the girl that had collected us finally developed a sense of urgency. Unfortunately for me that meant trying to get me onto the lift as it was still lowering. Tipping me right back without warning. I was then rushed out of my own chair and into an aisle sized one as the girl ran off with my chair to get it to the planes hold. Once inside the van they forgot to put on the break of the chair so as it moved off I shot forward. Luckily for them I have the ability to help stop myself from falling. Then once we got to the plane, once more I was tilted right back, so I was virtually lying down, without any security straps placed around me and rushed into my seat on the plane.

I felt so upset and angry. My adrenalin was through the roof, which when you are already scared of flying is not the best way to start a flight. Also adrenalin is of course like poison for us M.E sufferers. The flight itself was awful too. It was incredibley windy from half way across the channel all the way to Manchester. Turbulence is my biggest fear whilst flying, so my panic levels were pushed even further. I felt claustrophobic too because I was in the middle seat between my Mum and a stranger and couldn't see much. I didn't want to be an arm rest hogger next to a stranger but I needed them to grab. Upon leaving the plane one of the air hostesses apologised to me and explained that the assistance crew had blamed the wind. I know this can happen as I have been waiting a while to disembark a plane before as they tried to get the lift to the plane. However if this was the case how come they managed on their first attempt? And I should still have been collected from the gate on time and without her asking if I needed the lift. Also if this was the case then surely their contingency would be to physically lift me onto the plane, which they could have explained to me had there been a genuine problem. So I didn't believe that at all. I did appreciate the air hostess's apology though, even though it was not their fault at all. What a way to end a great trip!

After the eventful journey home I felt very unwell from the adrenalin, upset and nerves, as well as the PEM and tiredness. I felt that I had been treated like a rag doll or a bag, not like a person at all. Let alone a disabled one. I wanted to write a letter of complaint and Ryanair (the airline we flew with) were willing to help me to get my complaint heard by the right people; even though non of it was their fault but the sole fault of the assistance team in Brussels. In the letter I explained what had happened; pointing out the very obvious and basic health and safety rules that were disregarded and how even if they are in a rush that these things should always take priority. Because if they aren't an accident could very easily happen for which they would be liable. I asked that the staff be reminded of the passengers they are dealing with and how they needed extra time and care not rushed and forced,which again could exacerbate a condition or cause injury. Therefore if they did ever encounter problems that it be explained to the passengers and they explain how they were going to get them onto the plane safely and calmly. I explained that with my illness stress and adrenalin need to be avoided as much as possible because it makes me very ill. It makes me wince to think of how a person with an invisable illness could have been treated, especially those with a learning difficulty such as autism, where the extra stress could cause them to have a meltdown. What happened to me really should not happen to anyone, it's simply unacceptable. Especially where very basic health and safety were ignored. That's why I made sure to complain, to ensure that it doesn't happen again to anyone. I have since heard back with an apology and that they have addressed the issue with the staff involved. They also gave me a reassurance that the staff would undergo reviews of their training and of the risk assessments involved.

This hopefully is an isolated incident. I don't wish to put anyone off using special assistance because it really is a service that is very important for the sick and disabled to be able to go away on holidays. My other experiences have all been great, even in foreign countries where of course there is a language barrier. They have observed health and safety and treated me with care and like the Queen that I am. I recommend learning the word for thank you in their language as a nice gesture. And I would also advise to put the airlines/ airports main telephone number and special assistance number in your phone just in case.

I have been asked a few times since this trip whether the experience at the airport put me off and honestly although it was stressful and upsetting I know that incidents like this should simply not happen. Therefore I rest assured that future experiences will be better. Admittedly the flight itself put me off more and I am nervous about future flights. But on the other hand after this trip and breaking through that boundary, as well as watching a few YouTube vlogs, my eargerness to travel more has been reignited. I'd like to think that in some paralell universe that I'd be working hard but also doing lots of exploring too. Some of my friends that I trained with have jobs on cruise ships and so have found a way to do the job they love and travel the world at the same time and I have to say that sounds pretty heavenly. I'm off to Zante soon which again will be a new experience. This trip to Brussels certainly has helped me to be more open to the wider world and that is an exciting prospect. I know it will come with many challenges but I'd like to think all my coping stratergies and mindset will be my saviour.

Sian x