Spoonie Travel Interview with Anna

Malaga
photo by Anna Jones

Illness/ disability: ME/ CFS

Destination: Malaga, Costa del sol, Spain

Who did you travel with? 

My boyfriend, Mr Tree Surgeon

What airline did you use?

British Airways

First of all, how was your holiday?

Wonderful thank you!


What was your biggest worry before travelling? And how did you overcome it/ justify it?

Where do I begin?! It was the first time I had travelled abroad since becoming ill. I had no idea how I would cope with getting through an airport or enduring a flight. I asked my fellow sufferers who had already attempted foreign holidays what to expect and tried to keep an open, calm mind.

Did you have to make any special arrangements for transfer from the airport to the hotel because you were in a wheelchair? Or did you, or have you ever, encountered any problems about this?

We stayed in an apartment and had contacted the host prior to our arrival about the best way to get across the city from the airport. We considered hiring a car but parking was restricted so we got a taxi from the taxi stand at the airport. The wheelchair posed no problems – although trying to give directions to a driver who didn’t speak English did!!!

Did you notice any changes in your health whilst away? Good or bad? Any new symptoms?

Nothing out of the ordinary or that wasn’t expected. I struggled with the warmer days as I have problems with temperature regulation. I initially struggled a little with the time difference, even though it’s only an hour. Sadly, but not surprisingly, I didn’t get the remission that some people had mentioned they’d had while they were abroad.

How was Malaga as a resort/ destination in relation to your illnesses/disability? (Access, flat, close to restaurants etc, quiet)

Really, really impressive! Even the beaches were wheelchair accessible. A lot of the city was pedestrianised and there were pelican crossings almost everywhere. In 10 days we only had one problem with a drop kerb which is so much better than our experience of the UK. The apartment was in a quiet residential area away from the tourist district and the city centre. The only down side was that it was up a hill. On the one day I tried to stretch my legs I managed to get down the hill but then couldn’t get back up it! There were beaches and restaurants right on our doorstep and everything was in walking/wheeling distance.

How did you find attitudes/perceptions towards you by other travellers and from the locals?

Surprisingly the most negative attitudes belonged to the staff at Gatwick Airport, particularly those of the security staff and the Special Assistance Team. We were shocked by their distinct lack of compassion and care. If I handed over our passports and boarding cards, they were handed back to Mr Tree Surgeon and I was completely ignored.

In comparison I was treated like royalty by the staff at Malaga Airport. All of the restaurant staff and locals that we came across were incredibly accommodating of the wheelchair and I was made to feel like an equal for the whole holiday – something that doesn’t always happen. They took it all in their stride. I took a tumble out of the wheelchair on the way back home and a local couple came to help. There was building work on our road and we had to pass a skip that was right up against the wall, the builders helped Mr Tree Surgeon carry our shopping and the wheelchair while I shuffled past. It was really lovely.

From your experience(s) what piece(s) of advice would you pass on to other spoonie/disabled travellers?

Accept any help offered if it will mean you can save your precious energy for the actual event. You cannot be too organised. That said, there comes a time where you just have to stop or you’ll worry yourself silly. I had to zip my suitcase up to stop myself from panicking about what I had or hadn’t packed. Lists are amazing! Write down the essentials like medication and tick them off as you go. With memory problems it helped enormously.

Do you think that despite all the extra 'hassles' of travelling as a chronically ill person it is still worth it?

Most definitely

View from my bed
photo by Anna Jones

What items would you not travel without?

Ear defenders!!!

What are your must have items for in your hand luggage?

Rescue Remedy sweets to suck on – you obviously have to be careful with the liquid form. A woolly hat. A book. My iPhone. My prescription medication. Spare pants and socks, and a toothbrush, in case my luggage gets lost.

What other disability/illness related essentials do you pack?

A hot water bottle and disposable ice packs would have been good but I ran out of space. I’ll definitely pack them next time.

What are your favourite holiday beauty products?

I’m not really one for beauty products but I do love Rimmel’s Wake Me Up concealer after reading one of your blog posts. It definitely helped cover the dark circles under my eyes after a day of travelling.

If you were to go on holiday again what would you do differently?

Next time I’m sure I would be far less worried because I now know what to expect. I would pack more dresses to go over leggings as they proved to be the most comfortable outfits for sitting in the wheelchair in the ‘heat.’ Even jeggings became uncomfortable after awhile.

How are you after the holiday?

Not too bad! Well…you know how it is. Payback and post-exertional malaise. We were very sensible and had slow, lazy mornings each day so as not to push my body to do more than it could to soon. We did get into the holiday spirit and I did more than I would do at home but using the wheelchair saved so much energy! I made it out, at least for coffee, most days – which was incredible! Maybe I should brave using my chair more often at home…


Did your experiences make you want to travel again? If yes where would you like to go?

Yes. I was reminded though that I don’t manage so well in the heat – and it was only 22 degrees celsius! And we’ve had so many lovely holidays around the UK that I don’t feel desperate to get back on a plane. Having glorious sunshine everyday was fantastic though!

A very big thank you to Anna for taking part. And I hope her experience has given you some confidence about travelling or an idea of where might be good to go. It's certainly made me long for some winter sun. You can read more about Anna's trip as well as her other great blogposts over on her blog ME, myself and I lifeintheslowlanewithme.blogspot.com. 

Also some exciting news I'm currently working on a travelling with a chronic illness article to be featured in a book all about living well with a chronic illness by the amazing lady behind www.pajamadaze.com. Which will also feature an article by Anna. 

Sian x

Spoonie Travel Interview with Lisa

Illness/ disability: ME

Destination: Cala Galdana, Menorca

Who did you travel with?

 My husband, Stuart

What airline did you use?

 Easyjet. We book a package deal with them on easyjetholidays

First of all, how was your holiday?

It was brill! I was so happy to have been able to travel and enjoy some decent sunshine and be by the sea.

What was your biggest worry before travelling and how did you overcome it/ justify it?

The biggest thing for me was worrying that the travelling would exhaust me and that I would then spend the whole 10 days in bed trying to recover and wishing I hadn’t tried to attempt the trip. For years going abroad hasn’t been an option as getting out the house for any reason was such a struggle. However, in the last six months I have been more resilient and as I love travelling and have missed it so much, it seemed time to take the chance. Reading other spoonies accounts of coping with travelling gave me a lot of confidence to go for it. 

Did you have to make any special arrangements for transfer from the airport to the hotel because you were in a wheelchair? 

 We made sure that we told Easyjet before we travelled that I had a wheelchair and they were excellent giving me assistance from the moment we got to Gatwick right to the hotel in Menorca. I was really surprised at how considerate everyone was and willing to help.

Did you notice any changes in your health whilst away? Good or bad? Any new symptoms? I didn’t have any new symptoms and was amazed at how well I coped. We quickly got into a routine that I could manage of late breakfast, rest after breakfast and then afternoon by the pool or on the beach. I only had one day when I couldn’t manage that. I used the wheelchair to get around the hotel for the first 6 days but after that was feeling stronger and was able to get around without it which was fab. The holiday was so restful I think it helped me get some strength that I didn’t have before. 

How was Cala Galdana as a resort/ destination in relation to your illness/ disability? (Access, flat, close to restaurants etc, quiet)

We stayed at the Melia hotel. I had spent a lot of time researching somewhere that sounded as if it would be suitable and manageable for me. The hotel wasn’t too big although it still had a choice of restaurants. The smaller restaurant was lovely and quiet. The hotel was right on the beach and had lifts so it was all very accessible for me. There were some steps from the bottom floor down to the beach but I could manage those. There weren’t steps in the hotel itself so it was very easy to use the wheelchair. 

How did you find attitudes/perceptions towards you by other travellers and from the locals?

Everyone was so friendly and considerate. It does worry me as it what people think when sometimes I use the wheelchair and then other days don’t. However, I quickly realised people probably don’t notice and I can’t tell what they are thinking anyway so I stopped worrying about it. I always feel like I am like a toddler with a pushchair – I can walk but I just get exhausted so it’s an energy saving device.

From your experience what piece(s) of advise would you pass on the other spoonie/ disabled travellers?

 I think be realistic about what you can manage and plan the trip to give yourself the best chance of coping. We wanted to make sure we flew from Gatwick as we felt it would be more manageable than tackling Heathrow, plus to have afternoon flights. I don’t cope with mornings so we made sure I would be at my best when heading off. I think this really helped me. Turning hassles like packing into a little fun project of planning outfits and just laying out a few things each day so it was manageable. Plus I made sure not to do any social activities at all for the two weeks leading up to the trip. I think lastly, just trust and have faith that you will be ok. It is daunting going somewhere different but tap into those feelings of being courageous and adventurous to keep those nagging concerns at bay.

Do you think that despite all the extra 'hassles' of travelling as a chronically ill person it is still worth it?

Absolutely if you are strong enough. I know it isn’t appropriate for everyone. However, I found being somewhere completely different really freshened me up mentally and it feels like a real achievement to have experienced somewhere different even if I wasn’t able to go hiking around the island and diving off boats.

What items would you not travel without?

 My ipod. I love just sitting back, watching the sea and listening to music. I also have lots of audio books loaded on it as I find reading tiring.

What other disability/ illness essentials do you pack?

 Noise cancelling earphones. These were great on the flight and waiting at the airport. I could block out the rest of the world and just sit back with a nice relaxing playlist.

What are your favourite holiday beauty products?

I like having a skin moisturiser. At the moment my one of choice is The Body Shop Vitamin E one which doesn’t smell too strong and is easy to rub in.

If you were to go on holiday again what would you do differently?

I don’t think anything. I am just glad that the research paid off and the destination was somewhere that felt like a pleasure and not a drain.

How are you after the holiday?

I have been good. I am very happy to say that even with the travelling home, I came back feeling stronger than I went.

Did your experience make you want to travel again? If yes where would you like to go?

Definitely, I would love to do more package beach holidays that are just all about soaking up the sun and sand. I would love to go to Mauritius or somewhere exotic – as soon as I feel I can manage the longer flight.

A big thank you to Lisa for taking part in this spoonie travel interview. I hope her positive experience and advise has been useful to anyone thinking of travelling in the future. Or she has given you some inspiration of where to travel to. From the photo (below) and Lisa's account Cala Galdana looks and sounds idyllic. For more inspiration and tips you can read all my trave tips from researching to reaching your destination on my travel tips page, click on the link or you can find it on the right of my home page. You will also find many more spoonie travel interviews there. In this stormy weather it's very easy to wish we were lying on a gorgeous beach, soaking up the vitamin D.

When things go wrong

L-R Where I should be this week (source Pinterest)
Where I am this week 

This week I should have been bathing in some Autumn sun and eating my body weight in pastries and gelato. However things did not go according to plan. Not long before we were due to set off for the airport I fell into the grasp of a big M.E crash. The biggest most scariest one since the very first that left me hospitalised, 5 years ago. And so rather than being laid out on a sun lounger, enjoying some beautiful sunshine I am curled up in my bed warmed by my electric heat pad. 

To say the crash came at a bad time is an under statement. However it is not as if we were ignorant to the fact that this could happen. Life with M.E is filled with cancelled plans and disappointment. You are constantly aware that things won't necessarily go to plan. I'm just lucky it's not happened before a holiday before now. I actually woke up fine and had started to get ready, however I felt very suseptible to stress and the bustle going on of pre holiday have we packed this, where is this? I felt overwhelmed by it and it caused a bit of a shake and clumsiness. I dread to think what I'd be like as part of the McCallister family. Home Alone I guess ;-). Also my noise sensitivity was high. I believe it's called misophonia, when you percieve things to be louder than they are and they cause anxiety. In hindsight these were the warning signs of what was to come. However I believe it could have been worse. Had it happened actually at the airport or on the plane, the constant noise and movement could have caused it to be even worse. I think should I have somehow come round quickly and enough to get to the airport that this could have triggered another greater crash, which probably would have seen me hospitalised. One for having to try cope with all the stimuli and stress airports bring about on top of a nervous system that had already given me a big warning. And two for not respecting that initial crash and allowing my body the rest and recovery it vitally needs after a crash. Or it could have happened before our return journey. I know some people would think yay longer holiday but it's not much of a holiday when you're practically comatose and could end up in a foreign hospital.

However much you want to fight against a crash, doing so is superfluous. As is others trying to fight against it. Although it's incredibley scary all you can do is accept it and try to remain as calm as possible. The more you panic, which is easy to do when you are scared at what is happening, the worse and more prolonged a crash can become. Therefore as much as I knew the timing was very unfortunate and wished beyond belief that it wasn't happening I had to accept that it was. To simply focus on trying to be calm and keeping myself from any more harm. After all I did not have the strength to open my eyes or talk, how was I going to face the stresses of travel? A crash is a sign too much is happening. Although it might seem to you that you've not done much to trigger it at all. But sometimes the stress is having a lot on your mind and sometimes it's your illness having been worse than usual or you've had other issues or illnesses on top of that. Often the actual triggers can be small. A certain smell or loud noise. Causing your body to believe it's under attack and go into hibernation to try protect itself.

A crash is a big deal. However I wanted to say that despite what happened and despite all the emotion surrounding it I still remain positive. My determination to keep trying is not shaken. Of course I will be careful and respect the illness because burying my head in the sand is not good. But if this year has proved anything it's that adventure can be possible and a meaningful life can still be had, which gives me hope. And despite it being disasterous, things will be learned from this experience and my achievements won't be underestimated. I said in my Strictly experience blog (the chronic illness one) that I know many people get disheartened by experiencing PEM after having fun and breaking the norm. They feel hard done by that fun comes at such a high price. However for me I don't mind so much because it means I had fun. PEM is unfortunately a symptom that comes hand in hand with having M.E. It's just what having M.E is. You know what's in store for you and you fully expect it. However PEM from doing very little, from actually resting, that is unfair and painful. This is why I am extremely grateful everytime I get to leave the house or even just to get downstairs. Because nothing is guaranteed. You live with a chronic illness after all. Yes it comes with payback that's really not pleasant but as I have said many times life is for living. If you get the chances grab them. Seek out adventure. Seek out fun. I won't underestimate the value of being able to do things or begrudge the payback it brings, especially after this experience. Having made good memories and achievements is worth far more.

A piece of advice I wanted to pass on was if you ever experience a crash before you are due to travel and need to change your plans then be sure to get medical attention. This way they can confirm that you are in no fit state to travel and can provide information for your travel insurance. Seeking medical help is probably a good idea anyway, due to the seriousness of the symptoms. Getting other things ruled out can be important, we might have M.E but that does not make us immune to other illnesses. I know medical attention will cause additional stress on the body but they'll be able to see what's going on and can provide peace of mind.

Post crash I'm in PEM hell and there's still quite a bit of emotion that needs to be comprehended. But hopefully recovery is well underway. I'm working on a blog post about crashes for carers, how they can understand what is happening and how to help. Hopefully that will be up soon, when brain power allows. For now I have linked below a previous post that explains what an M.E crash is like. 

Hope you're all having a better time.

Sian X

Related post: What an M.E crash is like

Long haul travel tips for Spoonies

Finally, here's my tips on how to cope with long haul travel as a chronically ill or disabled person. Buckle up, ironically this is a long post.

Research

When planning your trip it's important to consider the length of time you want to go for. Be realistic in remembering that the journey will require recovery time, which could be longer than you first imagine and you are unlikely to get to see much of your destination. However of course the whole point of going is to "explore" a new place, so you need to give yourself enough time to do this, whilst also allowing time for rest and recovery. Also think about recovery time if you want to go on any day trips whilst away. 

Also consider whether you can afford to upgrade to better seats with more leg room on the flight. Having more room is certainly an advantage however of course paying for the privledge is not within everyone's means. Ring your airline or visit their website to see where their special assistance seats are, whether they have set seats for each class, or whether they will allow you to choose where you want to sit. This can all depend on your disability or illness too, so discuss this with the special assistance team. All airlines will prevent you from sitting in the exit rows for safety reasons but there may be other extra leg room seats you might be able to reserve, which would be beneficial especially if you're in economy. Choose one that is close to a toilet if needed. 

For more information on the best plane seats visit Seatguru at www.seatguru.com to research good seats for the type of plane you will be travelling on. Perhaps have this open as you speak with the airlines special assistance team.  

When researching destinations be sure to check if you need immunisations to travel to where you wish to go. Consider whether your body will be able to handle such injections.

Check your medication is legal in the country you are going to and seek advice on how to proceed. You don't want to get stopped by customs. You should always carry a prescription with your address on it or medical note anyway, along with your medications in your hand luggage. Also whilst on the flight remember to take your medications as per usual. Keep your watch on the same time as your home country so you can keep an eye out or set alarms on your phone or watch.

 

Visit the airlines website. Make yourself as familar as possible with their special assistance policies. Check the types of meals and snacks that are available onboard, especially if you have allergies or food intolerances. This will help you plan what food to pack in your handluggage or to be bought at the airport. You can check what films and tv shows they will be showing. You can plan what you want to watch or if nothing really takes your fancy then you know to bring plenty of your own entertainment. Whether that be downloading films to a laptop or tablet or bringing a kindle, books and puzzle books. 

Visit the airports website.  I would look up the special assistance policies for each of the airports you will be travelling through, so you can have an idea what to expect. Remember although you book special assistance through your airline they are only responsible for your care on board. Whilst you are at the airport you're in the hands of their special assistance team, so be sure to check both your airline and each airports policies.

 Also whilst you're on the airports website look up what shops and restaurants are available at each airport you will be at. This can help you plan where you will eat or get snacks. Again this is particularly useful if you have food intolerances so you know that you can get food at certain places. This can be really useful if you have a layover as you can plan where to go and how best to utilise your time. Alternatively there is the app gareguru and trip advisor.

If you suffer from food allergies or intolerances and have concerns about managing abroad be sure to take a look at www.celiactravel.com for advice on how to ask for free from foods and printable cards in different languages to explain your intolerances. If you are staying bed and breakfast, half board, full board or all inclusive contact your hotel in advance to enquire what free from foods they provide, or put in a special request for certain items.

 

Consider booking into one of the airport lounges so that you can relax in a quieter less chaotic environment before your flight. This is also a great idea if you have a stopover between flights, so you can have somewhere quiet to go recover and prepare for the next flight. Or if you are travelling alone as you know you can get everything you need in the one space without going far and the airport special assistance team know exactly where you are to collect you. If you are travelling alone and haven't booked into a lounge my friend Hannah recommends trying your luck and asking if they will let you wait in there for some peace and quiet. You never know. If they say no, ask them to take you to a quieter spot and don't be afraid to ask them to get you a drink or something to eat.

Packing and preflight

Getting a lot of good quality sleep before you fly is recommended. Sleep is our bodies way of recovering and also keeping our health in check. If you do sleep on the plane it won't be as deep a sleep with being in a busy surrounding. So get plenty of sleep before a trip as well as trying to sleep on the plane as much as you can.

You will often get a sleep kit from the airline with things like a small pillow, blanket and sleep mask however I recommend taking your own things so that you're extra comfortable. Having your own things that are tried and tested to make you feel safe and cosy especially if you are an anxious flyer is a bonus. Sometimes just the smell of them can evoke calm. A sleep mask can help you block out any light and aid better sleep. Also consider noise cancelling headphones or earplugs to help block out noise. 

I say this is in any of my travel posts but it's so important. Pack the items that you need to feel as comfortable and relaxed as possible in your handluggage. Whatever you use at home to achieve this, bring it. You need all the extras you can when in a new and potentially uncomfortable environment. Anything at all that you use when you want to try feel better.

So pack those favourite fluffy socks or essential oils, as long as they're under 100ml and in a clear bag. If you drink a special tea to help you relax bring some tea bags and just ask for hot water when you're on the plane. Comfort is key! These items will help you during the flight but also throughout your trip. Having items you're familar with and known to help you feel better will help comfort you when you are having a flare.

On that note sadly you can't have a hot water bottle or electric heat pad on a plane. Although you can pack them in your checked luggage, which is what I do. If these are things you rely on and worry you might suffer aches and pains you would usually treat with heat, purchase some heat patches that you apply to the skin. You can buy different types for different areas and they last up to 8 hours.

Comfort is key! Yes I said it again. Choose a travelling outfit that is really comfortable. I'd wear pyjamas but I think that's frowned upon. Although I've seen a few people (older than 3) brave it out. So wear the next best most comfortable thing. Stretchy trousers that don't cut you off at the middle. Remember your stomach and legs swell whilst flying so a forgiving waist band is best. Wear shoes you can easily slip on and off and pack extra socks or slippers to keep your feet warm. A big scarf is often good as it can be doubled up as a blanket or as an extra cushion. Layers are also good as you never know what the temperature on the plane is going to be. Just remember to take them all with you when you land.

Wear flight socks/ compression stockings. This will help reduce any swelling in your legs and help prevent DVT's. They are great if you are not used to sitting for that length of time and if sitting usually causes your legs to ache. Or if you experience blood pooling, poor blood flow in your legs. Put them on before you get on the plane.

Bring snacks- You get food on the plane but this might come at times when you are not really hungry or you just don't like what's on offer, or they don't provide anything suitable for your dietary requirements. Especially bring food with you if you have allergies or observe a certain type of diet. You can pick things up at the airport (again visit the airports website to see what shops are there, so you know you can get snacks there) or if you have room in your handluggage bring things from home. Don't put anything in tin foil though as this will cause trouble going through security. Graze snacks are great as they are in small packets. They now do the slightly bigger ones too. I found some in a WH Smith at the airport last time I went away which was useful. Also look at kids lunch box type snack packs like dried fruit or cereal bars. You could also take some things like porridge or noodles that only need hot water.  Again check security restrictions as to what you can bring through security.

Invest in a water bottle with a filter. Such as the bobble bottle. That way you can make sure you stay hydrated but not have to worry till the next time the drinks trolly comes round. Simply ask the air hostesses to refill and the inbuilt filter will filter away any mankyness of airplane water. Plus you don't have to buy another bottle of water because you've had to chuck one before going through security. Although you will need to make sure it's empty as you go through security. They are also great for using at your destination as that way you can be sure the tap water filtered and less hard, as well as saving money on bottles of water. I would double check though that the tap water where you are going is safe to drink though first.

 Pack a portable phone charger in your handluggage. These are great for if you are using your phone a lot at the airport/ on the plane (on flight mode) as they give you that peace of mind that should you run out of battery you are not stuck without the use of your phone. Or feeling reassured you have enough battery life to use your phone when you land, should you need to contact your transfer or hotel etc. They're also great if you are delayed and stuck at the airport or on a layover (especially if it's a long one). You don't have to worry about finding a power socket in order to charge it. It also doesn't matter then if you are in another country but your plug adaptor is in your checked luggage. 

Stay hydrated. Planes will quickly dehydrate you. Drink as much water as you can before and during a flight to stay hydrated. Avoid alcohol and caffeine as this will dehydrate you even more. I know this can be difficult especially if your nerves affect your bladder but do your best.

Avoid big meals. Before flying and during a flight be aware of what you eat. Eating smaller meals and snacks is best because of the effect of the air pressure on your digestive system. Your body cannot digest food as well when you are at altitude and so a bigger meal will cause even more bloatedness and cause you discomfort. Give your stomach an extra helping hand my choosing more easily digestable foods. This is another way you can help ensure you feel as well as possible after the flight, because let's face it you're going to feel cruddy enough.

At the airport

If you are using your own wheelchair your wheelchair will be stowed in the hold at the gate, usually after you have boarded the plane. If you have any stopovers chances are you won't see your luggage until your destination but it's important to check with your airline what the policy is for medical equipment. I've heard that in some instances your personal wheelchair will be tagged with your final destination and therefore once you land at your layover airport it will be taken with the luggage to your next plane. Meaning they won't reunite you with your personal wheelchair until your final destination and you'll be given one of the airports during the layover. Do seek advise from your airline over what to expect, especially if you have a specialist wheelchair designed especially to fit your personal frame and keep you supported or a power chair.

A lot of airports now have those massage armchairs or some even have masseuses, before you board this may be an option to help get your blood flow going. In particular if you are at a stop over airport and you need to recover from the first flight. Keep the pressure light though. Plan your time- One of the things that I predict I would struggle with flying long haul is what to do for that amount of time. Ok I'm used to hours of doing nothing confined to my room but not spending that amount of time on a plane. Spending an hour on a plane is enough for me in all honesty but the world has some pretty fab places that are more than an hour away.  In my travel interview with Hannah, she said that she likes to make a rough plan of how she is going to use up the time, which also allows her to pace and ensure she gets plenty of rest. Plan to get as much rest or sleep as you can but also use lots of distraction techniques like watching a film or listening to an audio book, especially if you are a nervous flyer.

Coping with jet lag and managing your stay

 Commonly the advice with jet lag is to fight it and to get yourself in line with the time zone as soon as possible. However being a chronically ill person we know that fighting our body is never going to end well. We have to listen to our bodies. Chances are after such a long flight and stresses of airports you are going to feel pretty unwell and will need to go to bed as soon as possible to recover. Let yourself recover properly before trying to adjust to the time zone and increasing your activity. 24hr room service can be quite handy here or having someone that can go out and stock up on food and drink would be useful.

The unknown is always going to be your biggest obstacle and challenge, however if you prepare yourself as much as possible and have lots of coping mechanisms you can feel more comfortable in the knowledge that you're prepared and armed to tackle any challenges.

Lastly my advice is enjoy it! Have fun and experience as much as you can to the best of your abilities. Also be appreciative and thankful that you have this opportunity. Don't forget to give yourself some appreciation too for taking on this challenge and giving yourself new experiences.

I thoroughly recommend you search Pinterest and other blogs for long haul posts to get as much info as possible from experienced long haul travellers.

 

I hope you find this post useful. Please comment with anymore tips if you have any, would love to hear them. I've linked some more posts that are related below. Or for all my posts on my spoonie travel series visit my travel tips page.

 

Sian X

 

Travel interview with Hannah, including long haul tips

Researching a holiday

Planning a holiday

Getting travel insurance

Booking special assistance

 

 

 

 

Travel interview with Hannah (including long haul)



copyright: Hannah Wallace



 

Today's post is a spoonie travel interview with my darling friend Hannah, who was a very lucky lady recently and travelled to Mauritius. How divine?! As this was a long haul trip, (as well as drawing from some of her other long haul trips) I added in some more specific questions relating to how best to cope with travelling long haul as a chronically ill person. A few people have also asked for this and fingers crossed this is something I hope to do in future. The thought of it does fill me with apprehension, so I personally will be taking notes.

 

Illness/ disability:
Ehlers danlos syndrome, POTs, Fibromyalgia, Bursitis in my hips due to EDS, ME and a number of allergies

 

Destination:
Mauritius

 

Who did you travel with?
Partner

 

What airline did you use?
Air Mauritius

 

First of all, how was your holiday?

 

It was amazing, beautiful and relaxing

 

What was your biggest worry before travelling? And how did you overcome it?

 

Obviously getting more ill on holiday is always a concern. For me things like dislocations, pain, stomach issues and fainting are a constant worry but I try to think I have good medical insurance and I'm with someone that will really look after me. Plus all these things could happen at home too. I've been unwell a long number of years but I remind myself that I'm lucky I'm able to do this with these illnesses. I try and look for the positives. I think being organised is the key, having plenty of help and plan, plan, plan. I think it's natural to worry about things but if I choose to embrace this worry I'm in control. Also I'm very aware how stress affects the body so I try and be mindful about that.

 

Did you notice any changes in your health whilst you were away? Good or bad? Any new symptoms?

 

I had body temperature issues and struggled regulating it. This always happens when I travel as POTs can be iffy in the heat but I'm very mindful of this, so I work with it daily. My joints flare up if it's too hot as it can make me more stretchy, due to the defective collagen in EDS sufferers. Over all my health was all about the same as it is at home, besides bite reactions, a whole mouthful of ulcers (which is very normal for me) and a few nasty headaches. I tried to generally plan well so if I did more activity I made sure recovery was planned after. I realise it sounds not great but it was ok as it was not much more than what I experience at home.

 

How was Mauritius as a destination in relation to your illness/ disability? ( Accessability, flat, close to restaurants etc, quiet)

 

The resort was great. We stayed at the Westin Turtle Bay hotel and I was very impressed overall by the Westin group, especially concerning dietary requirements they were really good. The food and restaurants were over all really good.  It was very accessible as the hotel had been rebuilt due to a recent fire. I would recommend the place. The hotel was quiet too and plenty of space. One day they told us there was going to be some building work near our room and so they moved us to a quieter area.

 

How did you find attitudes/ perceptions towards you by other travellers and from the locals?

 

Other travellers were really nice. Obviously people wonder what's wrong, especially as sometimes they see you walking small amounts etc and others you are in a wheelchair. I think at the end of the day it's natural curiosity. I guess it's how conscious you feel about that. For me personally I'm not too worried. I'm just so appreciative I'm having these experiences that I think screw it. Obviously it's not always been easy to have this attitude, I've lived with this 15 years and learned you have to choose to adjust or it'll torment you. There's always going to be a few twats in life and I have adopted a no twat policy in my life. And to be honest if someone was rude I'd say something back. You do get nosey people but it's the same at home. The locals there were very nice and kind.

 

Do you think that despite all the extra 'hassles' of travelling as a chronically ill/ disabled person it is still worth it?

 

I think it's a personal thing to decide. Obviously a big factor is how unwell you are how well your illness is managed. Like any risk assessment you have to weigh it up. For me it's worth it. But it's been trial and error over the years. It's about being realistic with it all and prepared. Life is full of cause and effect, it's finding the balance within this. Most important is choosing to go with people you trust and knowing you'll be well supported and looked after. If you don't have this it wouldn't be a good idea.

 

From your experience(s) what pieces of advice would you pass on to other spoonie/ disabled travellers/ would be travellers?

 

Good planing all the way is the key. As well as maintaining your routine while away is a good idea. It sounds very controlled but then this allows for flexibility with things. Be organised take the important things from home that keep you comfortable. Be researched on where you're staying even down to the small details, especially with diet stuff. Try and keep any dietary requirements as you do at home. Tummies abroad are definitely more prone to things so by not upsetting this to much you help yourself. Compression socks are essential for flying even if it's only an hour. Make sure they are put on at least an hour or two before the flight and leave them on for an hour after landing. Keep hydrated. Don't wait till your gasping for a drink and have it in a routine as our bodies respond to rhythms. Re-hydration pills are a very good thing to use regulary on holiday especially because in the heat our bodies can react and are extra sensitive to heat. If you can't tolerate booze don't do it I know it's boring but it's not worth it. If you can do it cause I bloody would :))). Keep up your salt levels too, to help muscle cramping and restore anything lost through needing extra hydration or sweating. This all sounds boring but have fun in the ways you can because these moments are so precious. Best advice ever is don't worry what others think end of full stop. ( not the easiest one ) but it will empower you and free you once you embrace this.

 

What items would you not travel without?

 

Aside from medication I wouldn't travel without my supplements I've found things which help and I keep this up while away. Salt is a must for me as I have low blood volume, so I need to put it on my food and take it off my hand regularly to help stop me fainting. I use Redmonds Real Salt, the sea salt. Re-hydration pills. Noise reducing headphones. A super soft neck pillow. My own blanket for the plane. And super warm socks. My silk pillow case and silk dressing gown because these make me feel good. My yantra mat. My iPod and kindle. Pen and notebook. Ghds. Lipstick. A good face cream. A Mala, which I wear. A few crystals, cause I'm crazy. And Miffy of course ;)

 

What are your favourite holiday beauty products?

 

My fave beauty products are not the most luxury but are necessary. I suffer with prickly heat so the Rona Ross prickly heat wash and lotion and skin repair lotion work great, they aren't super expensive and I never travel without them. Other essentials are: Aloe Vera gel. Hydrocortisone (you never know). D pantenol which is great for bites and burns. Marula oil, I love this stuff and use a few drops under my moisturiser. A good cleanser is essential for getting the day off, I tend to take Liz Earle on holiday as I find it the best staple it removes every thing properly. I use Liz Earle face mask that's hydrating too great for after being in the sun or I love aromatherapy associates rose one they work !! Lip balm. Carmex. Good hair protection, this time I used Aveda spray.

 

If you were to go on holiday again what would you do differently?

I don't think I'd do anything differently as I'm fairly well practised. I think I just need to keep being mindful of my limits and be cool with it.

 

How are you after your holiday?

 

Well I didn't expect to feel great after the flight but that was as expected. I did get a minor ear infection which has been a pain but I've made sure I've really rested up after.

 

Did you have to make any special arrangements for transfer from the airport to your hotel because you were in a wheelchair? Or did you/ have you ever encountered any problems about this?

 

I always get a private transfer from the airport but I know people who don't and they have found it ok and people mostly helpful.



Copyright: Hannah Wallace

 

What do you pack in your hand luggage to help you survive a long haul flight?

 

Salt (as explained above). I get coconut water at the airport from Pret or Boots one to have at beginning of the flight and one for just before landing as it's isotonic so it's great for re-hydrating. And I buy loads of water after security so I have enough for the journey. Dark chocolate. Some form of gluten free energy bar and some crackers of sorts. A warm blanket I fold it up and sit on till I need it. Thin gloves. Neck pillow. Warm socks. Lip balm Hydration face spray. Moisturiser. Small hair brush Kindle. iPod. Noise reducing headphones. Mala beads of course ever the yogi. My own Silk eye mask. A bottle of aromatherapy associate breathe oil to sniff and some lavender oil. This time I took small post cards to colour in. I layer clothes so usually take an extra cardi or jumper and pashmina. My own water bottle. Wipes for hands or face. Tissues. Sunglasses for reducing light and headaches. Walking stick. And finally spare pants!

 

What is one thing you should know about flying long haul that is a great tip but a lot of people might not think about before hand?

 

Wear flight socks to help your legs. Also find out if the plane is full. If it's not you may be able to get a few seats to lie across which really helps when flying economy. Don't drink totally cold water, drink it at room temperature or warm it shocks the stomach less If you drink herbal tea take a few bags they'll happily give you hot water.

 

How do you cope for such a long time on a plane?

 

If you haven't flown long haul before becoming ill it's probably not the best time to try it unless you need to for some reason or feel you can cope with this. I cope by making a schedule of sorts. You know food is served fairly soon when you take off and another meal towards the end. Also lights will be dimmed during night hours at some after the meal service for sleep. So I try to make a plan such as meal service, movie, drink, nap, drink, meditation, drink, nap, listen to music, sleep relaxation app. Sometimes I watch two movies but I try to sleep. I find with pain etc it's often harder to sleep and it's frustrating when I see others snoozing away. So if you're lucky sleep as much as you can. But if I'm struggling I try and do it in blocks of 40 mins or an hour and half as these are sleep cycles and you tend to not interrupt sleep cycles. It's never going to be a bed of roses but I highly recommend trying to plan it. Also be aware in sleep times they tend to heat the plane up more so you may suddenly feel warmer, that's why layering your clothes is great. Keep hydrated, it's essential even if you need the bathroom more often. If people around you are asleep you can call a steward to help and take you. And you will always be seated near a toilet and if you're not ask. Making sure you relax properly will also help, which is why all these new relaxation apps they have are great. Noise reducing headphones are definitely a help too. Making a plan really does help because it helps break up the journey too. Move your ankles and feet too, this helps blood flow. If you're ill and travelling alcohol is not a good idea. Wear comfortable clothes you can still look good and comfy but it really makes all the difference. I used to worry saying exactly what I needed from the airline etc but I've learnt being clear with them is good. Chat to the special assistance team of your airline before you fly to arrange what you need and discuss what is available.

 

How do you cope with layovers for connecting flights?

 

Find a quiet spot to relax and get some rest. Having access to an aiport lounge can be a big help. If you don't have access to a lounge then head phones that reduce noise and an eye mask can help you get some quiet. Find a floor or row of chairs where you can stretch out. This can be helpful, not the best but if needs must. Assuming you have people with you to help watch you and your bags. If you're travelling alone it could be worth putting it out there and asking if they could put you in a lounge as special assistance at the airport will help you from the plane and later on, onto the next plane. Again keep hydrated.

 

 

How do you help manage jet lag?

 

I think depending how well the flight goes for you it definitely affects jet lag. But I use extra melatonin to help me. Magnesium oil is great if I can't get a bath. Rest more after your flight and go with the flow, listening to your body. Also when I arrive somewhere I lie on the floor with my legs against a wall well supported and padded this helps blood flow. I do this daily anyway but it's a helpful inversion. Make sure you get up slowly! If I arrive somewhere and they have a bath I will have one before bed. Once I'm back home I will always have a magnesium bath with flakes. Trying to keep to your normal times definitely helps too, although not always easy.

 

What do you find are the biggest challenges flying long haul as a chronically ill person?

 

I think the biggest challenge is coping with pain if it flares up, that's never easy. Being sat for that long with your legs low is a bummer too. That's why even if I'm shattered or painy I like toilet breaks as I know it's moving blood flow. It's the unknown that can be our biggest worry but like my mum always this is the risk you take. I think the time factor is never easy as it's a long time, we tend to do much shorter things so it's demanding, which is why you need to take extra care.

 

In your opinion is it worth paying extra for an upgrade to better seats?

 

It's definitely worth paying for the upgrade if you are able to. Having your legs elevated and more space is a very good thing, you do notice it makes a difference. And if you're not able to my tip is checking if the plane is full or not and asking if you could move to an empty row, so you could stretch along a few seats. I think making sure you meet your personal needs is most important.

 

A big thank you to Hannah for taking the time to do this interview and sharing with us a bit more about how she coped on holiday. It's much appreciated Han! Also a big thank you on the insights into how to cope on a long haul flight. I'm hoping they might come in handy in the future. Hopefully soon I'll have a tips post on more things to consider if you're planning a long haul trip. If you have any specific concerns about travelling long haul that you would like to see mentioned then please leave a comment below and I will do my best to answer them in the tips blogspost. Thanks again Han!

 

Sian

Holiday Get ready with me

Copyright: Sian Wootton

Here's my get ready with me holiday post. But one with a bit of a difference, not just a get ready with me for a day/night whilst on holiday but in this post I'm going to go into detail about how I prepare my poorly body to go on holiday. Covering everything from about 6 weeks to go until I leave for the airport. Although I'm writing from a chronic illness perspective hopefully this post will be useful for the organizers and planners out there too. Or anyone wanting to be more organized when it comes to holidays.

 6-4 weeks before

Admittedly pretty much as soon as I've booked a holiday the next thing my mind turns to is clothes. I can't help it! And so the internet browsing amps up a notch, looking for some pretty new outfits. However it's good to see what you already have too. I like to have a trying on session just to be sure things still fit and if they don't I know then I need to look for alternatives. At this point I start thinking about what I want to take with me and the different looks I want to go for. I love to scour instagram and Pinterest for inspiration.

Copyright: Sian Wootton

I like to mix and match possible outfits. Often I will lay them out on my bed (as in the photo above) and then see what other pieces will go with that. This is a good tip for if you need to pack light or pack a capsule wardrobe. It can also help you think about any other pieces that you might be missing. Or items you want to get to complete your holiday wardrobe. Get shopping.

Travel insurance- I make sure my travel insurance is still in date and if not that I take out a new policy. I tend to do mine online through the post office. It's handy because it allows me to input all my medical conditions online and not need to phone up.

If I'm going to Greece then in the weeks before I go away I like to brush up on my Greek and get used to speaking it again. I'm by no means at a level where I can have a long conversation but I can be polite and order in restaurants/cafes. To me this is something I enjoy doing and it makes me feel accomplished, at a time when I can often feel unaccomplished. Plus you're not just the person in the wheelchair but you're the one that can speak Greek too. I would recommend to anyone to learn a few words of the language where they are holidaying. It's polite and it's fun. Also because I'm in a chair there are times where the need to say thank you increases, so it's nice to be able to do so in the native tongue.

3 weeks before

Medication- Time to check if I have enough medication to take on holiday with me and if not that I order more. I say I but this is mainly my Mum then later on I will count out the meds I'm taking for my own piece of mind.

 Pre holiday skincare routine- I use some more moisturizing treatments on my hair to get it ready for the heat. I try my very best to up my moisturizing too but I am generally rubbish at remembering, then moan when I look at my legs and they're scaley. I love the moisturiser sprays you can get now as they are so quick and easy. I love the Vaseline Cocoa one and the Palmers Rapid Moisure one too.

2 weeks before

I force myself to fine tune my choices of what I'm taking, especially in relation to clothes. I know that seems crazy early and the chances of changing your mind about 20 times in those remaining 2 weeks are high, but I at least like to have an idea. I will then separate what I intend on taking either at one end of my wardrobe or on hooks. It's good to check everything is clean too or whether it needs to go in the wash first.

Make a packing list- I list everything I am going to take and put it into sections, such as clothes, toiletries, make up, beach bag necessities, medical essentials and I write a separate list for hand luggage. I like to keep my lists handy so that I can add to it as I think of things, which is all the time. It's staggering how much you need to take with you.

I also make a 'last minute packing list". This is a list of all the things I can't pack until the night before or day of. Mainly these are medical related items like my heat pad (yes I take it with me everywhere, regardless that it's a hot country) that I may need until just before we leave. By making a list I know that these things that could very easily be forgotten will definitely get packed. On this list you could also put last minute things you need to do before you leave such as checking all the windows and doors are locked and that you have all your travel documents and passport.

Once I have written my list I then start to pull everything together and put all the things I will be taking together in one place. As I collect each item I  put a tick next to it on my list so that I know I have it ready to be packed.

To be extra organized and save myself some time and energy once I get there I like to prepack my beach/ pool bag with my beach towel, sunglasses, book etc.

Currency- If you're going abroad, you'll need to order foreign currency. This can be done online for ease but sometimes there might be a minimum amount that you can order so you may need to plan to go to a post office or currency exchange desk. I think it's best to do this before hand rather than at the airport because you get a better rate and therefore a bit more money to spend.

1 week

Sort out plane "entertainment"- In my travel anxiety post I wrote that I like to have a playlist of relaxing music and guided meditations to help me should I start to panic. So during this week when I need to stay as calm as possible I go over my playlists and add newer ones, testing to see if they actually do help keep me calm or not.

I'll also browse Audible for a good audio book to download, that I'll be able to listen to on the plane. I found this really useful as it kept me occupied but didn't make me feel travel sick like reading a magazine or book would.

5 days before

Copyright: Sian Wootton

Finalize handluggage- Well the bits that are not last minute items anyway. Again I know it seems early but it needs to be done. My handluggage always weighs a tonne, because it has so much in it. All my medication and various bits and pieces to keep me as comfortable and healthy on the plane. Plus I always pack a bikini in there, just in case my luggage goes missing. I struggle finding them in this country never mind a foreign one.

Rest!! The most important step of all. Generally the 2 weeks before I go away I try my best to make sure I have no plans, so I don't have anything to recover from. This means I can try my best to conserve that energy for going away. However in the 5 days before I go away this is when that resting steps up even more to being really restrictive because I am trying to make sure I get myself onto that plane in one piece.

Last minute beauty pamper- I try my best to get myself looking a bit less ape like and defuzz.

2 days before

Time to pack- Or in my case get someone to pack for me as I supervise and tick off each item on my packing list.

Day before

Copyright: Sian Wootton

Lay out travel outfit- I try to be as organized as possible, so that the time before I go to the airport is as smooth running and stress free as possible. So I will lay out my travel outfit and have it all in the one place, including any underwear, socks (usually of the attractive flight sock variety) and shoes.

Copyright: Sian Wootton
Apologies this photo is so poor, it was shot in bad light

I will also lay out anything else I intend to use before I go. Again to make things as simple as possible. So I put any skincare or haircare products and make up I want to use, as well as my mirror on my nightstand for easy accessibility.

Cross my fingers and hope for the best- Even though I know I've tried my best to conserve my energy as best as possible to try and be able to go, I also know that sometimes that is not always enough. That my illness will get the last say on whether it's a green or red light.

Morning of

Assess- Sadly sometimes regardless of how much I have tried to prepare myself to go on holiday having a chronic illness means nothing is ever guaranteed, so the very first thing I need to do on the day of going away is assess whether I am actually well enough to travel. Am I well enough to even make it out of bed? This moment is critical and can be touch and go for anyone with a chronic illness. I would advise that you be honest with yourself and make a fair judgement. Only you know what you are capable of. Remember to let others know to check in with you that all is ok to actually go ahead. If all is ok then I go ahead and do the following steps:

Pack those last minute essentials- using the list that I made.

Get ready to go-  I get ready at my own pace and as calmly as possible. Stress at this point is really not good, as it's going to drain you of energy really quickly. It's good to remind others of this too. Airports and travel can make people extra stressed but you need to put yourself into a bubble and just focus on each step you need to take to get yourself onto that aeroplane.

Final checks- Go over my list one last time to be reassured I have everything I need and done what I've needed to.

Take a deep breath and go- Off you go enjoy yourself. I always remember to give myself  bit of a pat on the back at this point too and say well done, as well as be very grateful that i'm actually getting this opportunity to travel. Like I said it certainly isn't guaranteed that you'd be able to go so having a few moments of thanking your lucky stars I feel is a good step. on the journey to the airport I always try to rest my eyes as much as possible and use up as little energy as possible, because once I'm at the airport I'm going to need to focus. I also try to reman calm and take deep breaths to keep any travel anxiety under control. You can read my post on coping with travel anxiety here.

For more detailed information on any aspect of travelling with a chronic illness I have a whole series of posts, which can all be found by clicking this link, or by clicking on the travel tips page in the right hand column of the blog layout. There you'll find posts on everything from researching a holiday to how to cope during a flight. You'll also find interviews with others about their experiences of going on holiday as a chronically ill person.

My next post will be an interview with Hannah with an emphasis on long haul travel. 

Sian X   

 

 

 

All the emotions: Facing reality on holiday

 In my post about my trip to Brussels, read here, I said that it had re-awakened that wanderlust part of me and that I was excited to try new places. This also coincided with us not being able to go to our usual holiday destination this year. And so, we decided to try a new place this year. I did my fair share of research and found a flight and hotel that seemed ideal. And so our Zante adventure began.




Copyright: Sian Wootton

 

Last week my instagram portrayed travel and adventure, pretty dresses and bikini weather. A picture can paint a thousand words but sometimes not show the reality. Many people who have social media accounts as well as a chronic illness will relate with the statement that their posts are a highlight reel, predominantly sharing the good moments, just a tiny glimpse into our day, not the 99.9% unphotographable reality; and this is certainly the way in which I feel about how I documented by holiday. In all honesty I found it hard at times to face up to the realities that being on holiday as a chronically ill person in a wheelchair presented. Especially being in a wholly new place, where we knew no one. Sadly as much as I want it to M.E doesn't get stopped at border control, it is always going to be your travel companion. Of course I knew this, I wasn't expecting miracles. However when you go somewhere new when you're chronically ill or have a disability it's as though you are seeing it through blinkers, you can only see and do so much and there is so much you will miss. Sometimes it's as though you could be anywhere, just with much better weather.

 

I was actually quite suprised by how down I felt at times, even full on ugly crying. No this is not a recurrence of my depression! I just needed to let out my feelings and then eat them with ice cream. Being chronically ill is tough physically and emotionally and you can't always be positive about it even though you try your very best to be and others may be amazed at how you cope. But sometimes you don't want to hear "you cope with this so well" "you're so brave" "you're an inspiration". Because all I want is to be normal. Even if I can't have the life I had before. I want what is normal or mundane for most people. I want a steady job and make my own money. 9-5. Works drinks on a friday. Weekends of socialising, fun and exploring. I want to be able to make my own dinners. Do my own laundry. To be able to be able to pop to the shops when I fancy some cake or chocolate. I want relationships where I'm not going to feel like I'm a burden. Or they need to be my carer. That I feel I have much more to offer.

I just long to feel my age. To not be a burden. To be less lonely. I hate being so stuck. So helpless. So unable to even look after myself. Of not having control of my wheelchair and being pushed all over the place. Constantly worried about getting bruised toes. One seconds lack of concentration and you're into a wall. Used as a trolley. The bag minder. Made to feel you're a nuisance or in the way. Or that others are a nuisance being in the way. That you deserve so much more attention because you're in a chair. To see people pull others out the way. You never quite get to what you want to look at. You're in the way at the breakfast buffet or the salad bar. Not that you can see what's on offer in your chair. You can't go anywhere on your own. Or when you want. Not even to the loo when you're out. You can't just stand up and take yourself off. When you need to get there quick is the worst. Or rarely be able to use the stairs on your own.




I'm just so tired of so many no's. I am not a no person and I try my best not to be with this illness. I try to do what I can but still there are so many limitations. No this place is not wheelchair accessible. No you can't get along that path as someone has put signs up on the pavement. No you can't eat most of what's on the menu. No you can't go out today as you went out yesterday or the day before. No you can't just pop downstairs and get what you want. No you can't be left on your own for more than a couple of hours. No no no.

Sometimes I think I must look and sound like such a diva. Push me here. Be careful there's a wall right there. Turn that music down. I need this. I want that. This is not good enough for my needs. Especially when I need to raise my voice as both my parents are hard of hearing. I must look like a right stroppy madam. Within an hour of me being at the hotel they had already gone to buy me a chair so that I would be able to shower. Ok this is necessary and I was expecting this to be there with an accessible room and fair play to them for helping me out. But all these extra needs are frustrating. So many things literally, and I mean literally in the correct form, get on your nerves and make you feel shockingly poorly.



source: Instagram

 

This is not something you get used to and I don't want to get used to it. And I don't think my family are used to it either. The days when you need help just to sit up, to pull your pants up or to be fed. Even the good days where you can get out in your chair. You're not independant any longer. Others get a say. And you need them just to get through the day. You're no longer your age. Some days I don't feel like a person. I'm an illness, a disability. Sometimes people won't address me when they're speaking. A conversation will literally go over my head. Or when people talk about me it's not long before my illness will come up. Probably even within a few sentences. I'm the one in the wheelchair. Like that is my identity.  And some days I feel that even I believe that's all I am now. That I'm boring, and don't have anything interesting to talk about. Non of my former achievements seem to matter now or they are subsequent. The things I spent years and a lot of effort achieving. All gone to dust, it often seems. I hate that due to this illness I'm percieved in a way that couldn't be further from all that I have worked for and all that I am proud to be. And as time progresses and I continue to have this illness the harder it becomes to differentiate between your true self, all you want to be and how this illness forces you to be. 

But back to last week. Can I say I had a good time? I want to. I did things. Achieved a lot. More than I do in a week back here. I'm able to "say great job, you did so well." There is plenty that I will be putting in my memory jar and scrapbook. However each one was riddled with so many questions and confrontations. How arw we going to get down the kerb? How are we going to get up the kerb? Who's going to hold onto Sian while the other gets the chair up/down the kerb/step? Is there a ramp? Can you even get up the ramp? Is the ramp blocked? Where can we put the wheelchair out of the way? Look another step. Oh crap we've taken out the sweet stand. Overall I've done these things and still inside just felt blocked off but at the same time unable to shut off from constantly being reminded you're disabled. Chronically ill. Some of the things, especially the last night of the holiday I feel I did just to try escape my own head. You get like that every now and again. You hope a change of setting will let you stop thinking as much, stop crying in all honesty. I can't blame it on the place or the people. It's just been a tough week. I'm sure it might not have mattered where I was I may still have felt the same. Just utterly fed up at how cruel life has been. Lonely. Heart broken for the life that once was and person that at times seems to have been left behind. How this trip could have been if I had the health?

I don't want to sound ungrateful in anyway. I'm happy that I had the idea to go there. That I wanted to try other places. That I have great parents who care for me in every way, and without whom these opportunities just wouldn't happen. After having a really good cry and letting out my feelings by writing them down I did feel better. So I don't wish to place the blame on the place or the people at all. Nor do I wish to put anyone off going away. Because if it's something you want and feel you can do, go for it. I just wanted to talk honestly about my experience this time around. To say it wasn't all picture perfect. How can it be when you are chronically ill?

As with anything in life now I measure it through the amount of smiles I have and the consequent laughter. And while this has been a lovely trip and I have managed a fair bit, of which I am very grateful, I've not smiled as much. It's hard to admit that because you just feel guilty. Like how dare you not have a good time! But when what you can't do and all these obstacles are constantly in your face it's hard to put on a genuine smile. To keep positive. A holiday is supposed to be about having a break, and unfortunately we don't really get much of one. However there are positive things that I have taken away from this trip like my wish to travel more has been accomplished and I have done some nice things that will be documented in my scrapbook and memory jar. Even picking myself up after full on crying and being so morose, I will take that as an achievement. I did have to buy a hand bag just to be sure I excercised all my pick me up methods though.

Apologies for moaning. You know I'm generally quite positive but it can be difficult to smile all the time when everything is in your face. Thanks for listening.

Sian X