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

Ageism and disability: The Zimmer Frame

 

 

Recently my house has been looking more and more like a care home. I'm lucky to have been referred to an occupational therapist who works for the reablement team. Together we've been addressing areas where I struggle around the home and on getting me the right equipment to help me and my family (who are my carers). We already had a commode for use downstairs (as we don't have a downstairs loo) and during bed bound times. We also had a bath board to help me get into the bath, as I can't stand up for long enough to have showers (sigh). However I was finding getting in and out increasingly difficult and was putting too much strain on my wrists as well as on my Mum's back. So cue a request to my gp for a referral to the occupational therapy team and I am now kitted out for disabled life.

 

 

There is one item inparticular though that conjures up all those misconceptions and misunderstandings about disability. And that is of course THE ZIMMER FRAME. Zimmer frames in todays society are associated with old age. It's almost a symbol for old age. So as a young person to be using a zimmer frame of course goes against all stereotype. At the moment I won't be using it too much outside of the house because I need my wheelchair but when I can use it outside I think I will be more appreciative of the fact that I can use the zimmer rather than my chair. Liberating almost. But in doing so I will be putting myself in the vulnerable position of not being someone others would expect to be using one and perhaps facing strange looks or comments about it. Luckily I have learned to develop a tough skin when it comes to challenging peoples perceptions of disability. I used to get paranoid just getting out of the car and walking into my chair. Or if I needed to stand up in a shop to look at something that was too high up for me to see in my chair. I felt like I was being judged. But now I have learned to shrug off that feeling. I know how bad my condition is and having accepted that I need these aids to help me. But it will be interesting to see how I fare when using the zimmer in public.

 

 

Therefore I would say that the zimmer frame is more a symbol of disability rather than old age. Or those whom old age is disabling them in some way. Because let's face it not all elderly people need a zimmer frame or even a walking stick. In the same way that not all disabled people are in wheelchairs. My Nanna is 88 and is still doing the garden and walking up and down the highstreet unaided. One day she was sat next to me on the sofa doing leg excercises while I needed help to stand up. Talk about rubbing it in. And also Granny and Grandads in a lot of cases nowadays you wouldn't even class as elderly. Remember when people in their 60s seemed really old?

I was in a cafe the other day and two women were talking about getting old and the how it can disable some of us. Needing walking aids (zimmers included of course), stair lifts and sometimes different equipmenr to help them in the home. They were saying how because of it getting old is a horrible thought. As a disabled person listening to this and actually being in the process of getting more aids it made me feel a bit melancholy. It just struck home those perceptions of young and old and as some would say being old before my time.

 

 

But by having all these aids it'd actually helping me have more independance and able to live life more when I can. It's a way of keeping in touch with my 'youth.'  I'm thankful for my wheelchair for physically letting me get out of the house. And one day I'll be exctatic about using my zimmer rather than my chair.

 

If you are struggling to do simple things about your home or are not able to do things at all due to disability then I advice you to speak to your gp. Tell them how you're struggling and ask to be seen by an occupational therapist. What they can provide varies from council to council but it is covered by the NHS so won't cost you a penny. Plus you will be taught how to use the equipment and your carer (non professional) can be assessed too, to ensure they are helping you in a way that's safe fod them. You can buy things privately and may need to do so for items the council doesn't provide but I would say do make use of this service. I only wish I'd have known a bit sooner. Now off to buy my Mum a tabbard.

 

Sian x

End the Awkward

It's not long ago that people used to call disabled people invalids, you may still hear it from older generations. Of course this term implies that they're not valid in society, which is a very untrue belief. Disability is not a lifestyle any of us choose, whether we are born disabled or suffer an accident or illness in later life. The term disabled isn't much better either. Many of us are plenty 'able.' It all depends on the condition that has made them disabled. When it comes to illness and disability it can make people really uncomfortable and awkward. People simply do not know how to behave when faced with meeting a disabled or chronically ill person, or how they think they should behave. So to tell you a funny story. Before I became ill I was getting off a train when this blind young man stepped forward to feel for the train and subsequently got a handful of boob. The poor guy was mortified and so apologetic. After checking he was ok I just burst out laughing. It was an easy mistake to make. Could you imagine if I'd have reacted as though without regard for the fact he was blind? Basically calling him for a perv and sexual harassment. 

So a good example is seeing a woman with a bald head or wearing a heafscarf and automatically your response is sympathy and sadness. You picture her as a brave soul that is trying to have a normal day whilst battling terminal cancer and facing the indignities of the treatment. But maybe that woman does not have cancer at all. Maybe she has alopecia. Or perhaps it's even a personal choice.

One of my recent favourite tv adverts is for Barclays bank. If you haven't seen it, view it here. It shows how they are helping their customers more by showing a visually impaired comedian demonstrating their cash machines by plugging in headphones so he can hear the instructions. It also shows him doing a stand up gig and joking about how these cashpoints work, which I think is a great touch as he's showing a lighthearted side to it. By making people laugh I think it is a great way to make people think more positively about approaching disability. In a way saying "hey don't feel sorry for me." It's a great way to connect with people.

The point is regardless of illness or disability we are still people. Just the same as everyone else but just with a different story to tell. But on a fundamental level we still have all the same feelings and fears as everyone else or like a 'normal' person, to use an awful term.

The charity Scope, the charity "that exists to make this country a place where disabled people have the same opportunities as everyone else" have recently launched a campaign called end the awkward aimed at eliminating any awkwardness when it comes to interacting with disabled people in all kinds of situations. Here's a link to a playlist of all the videos. I really recommend watching them and sharing them. Basically it's about saying "hey, life is full of awkward moments, but just keep calm and remember to just be normal." The fact is you're likely to encounter disabled people whereever you go, so learning how to interact and not feel awkward is important.

To learn more about Scope visit their website, blog or follow them on Twitter @scope.

Do you have any experience of people being awkward towards you? Or have you ever panicked at how to react to a disabled person? Let me know in the comments.

Sian x

Disability and Fashion

 

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In life if someone's perception of you is unfavourable then you can learn to shrug it off. Tell yourself that they don't know the real you. But what about when a whole industry and its related medias and companies has the wrong perception? Today I'm going to let you in on something that I'm involved with and am really proud to be a part of. Firstly though, to set you up for this post I want you all to watch this video. Note the looks of horror and disgust. It's incredibly sad. But in some ways this reaction is understandable because people do not associate beauty and fashion with disability. Why? Disability can be thought of as ugly, imperfect, with close links to accidents and illness. Almost the opposite to the beauty and perfection that the media and catwalks want to sell us. Disabled people seem so far from the medias bench mark because  you can make over and transform people  in all Miss Congeniality glory to try and 'make them fit in' but the fact  is they'll still be in a wheelchair, missing a limb, have a curved spine, blind, deaf, ill and many other forms of disability. And because of these implications it simply isn't shown. It's hidden like some shameful secret. But as you saw in the video and will see in the photos I have included in this post, (the above photos are of my gorgeous friend Hayley, taken with permission from her blog) disability can be beautiful and attractive. Disabled people can be fashionable. And we shouldn't have to 'fit in' to an unrealistic perception of beauty. We have beauty in abundance the world just needs to be open to beauty in all its forms, prosthetics and all. In a recent tweet author Ken Jennings wrote "nothing sadder than a hot person in a wheelchair." As you can imagine this enraged many people. You can read more how on the following blog. And goes to show that we have a long way to go in getting disabled people represented in fashion in the media and the catwalks. Below is a photo of Britain's Missing Top Model (the show mentioned in the video), Kelly Knox. For more videos on Britain's Missing Top Model, click here. 

 

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As a disabled person most of your expected role models are Paralympians for example. They are incredible athletes. However as a person disabled by illness the fact is I'm not going to be following in their footsteps. I can't. And neither can a lot of other people in wheelchairs. But what I can do is be fashionable. I realise that might sound contrite in comparison but there is more meaning behind it and to me too. As I can also be an advocate for the use of disabled models. I'm a woman that likes to buy clothes. Just because I'm disabled doesn't mean that I no longer do. Okay, I might not get to wear clothes that aren't pyjamas that often. In fact fashion has come to mean more to me as a sick/ disabled person than it did as a healthy person. Dressing up makes me feel happier. And we all need that. And this is why I got involved with Models of Diversity

 

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Models of Diversity are questioning the beauty and fashion industries perceptions. You can read more about them in my blog post. They are actively campaigning to make the fashion industries a more diverse place and that includes presenting disability and proving that disability is beautiful/ fashionable/ attractive/ sexy. That it does deserve a place in advertising and on the catwalk. The following video explains Models of Diversity's perspective on disability within the fashion industry. Models of Diversity on Disability. We live in a society that knows it's wrong to dismiss or discredit disabled people. Even more so since the Paralympics. There has been debates over the use of words such as invalid, saying that we cannot tar disabled people with a name that says they have no place in society. Not that the word disabled is much better. So why then is it still happening? 

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Above are photos of some of Models of Diversity's disabled models who are helping bring about change. The first image in this section is of Chelsey Jay, Models of Diversity's Director for models with a disability. When she became ill very suddenly with POTS, she found herself confined to a wheelchair. As a young woman keen to make a career as a model once she became disabled she found herself pushed out of the fashion world. As though the industry perceive that once she became disabled so too did her interests in fashion and beauty. And it's the same for so many of us and particularly hard on young people who are still finding their way. People assume that disabled people do not share the same interests as healthy people. Some people might be surprised if we look fashionable. I've heard a story about someone in a wheelchair looking at some shoes in a shop and someone standing in front of them; when asked to move out of the way they said "it's not as if you're actually going to buy them. What's the point when you are clearly paralysed?" Well news flash we're not all paralysed. And like that would affect our wanting a nice pair of shoes. Or just wanting to look nice in general. As though we're not entitled to. It's attitudes like this that stem from lack of representation. People just do not associate disability with fashion.

 For this reason, each disabled model is also an advocate and campaigner. Forging the way for others to aspire to be models despite their disability. And hopefully changing the industry in a way that it won't be a fight to be represented in future. That young disabled people that want to be a model can grow up knowing that they can be. That they do not have to feel ugly or ashamed. The four Models of Diversity models above are not only divine in their beauty but are  also wonderfully inspiring people that are sharing their stories. 

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Of course the biggest influence on the fashion world stems from the catwalks of New York, London, Milan and Paris. This is where the world takes note. In another promotion for the tv show Britain's missing Top Model one of the models says "New York would rather burn their city down than have a disabled person on the catwalk." Well I guess New York is pretty hot as it happened! At New York Fashion Week AW2014 designer Carrie Hammer, used Danielle Sheypuk (above) Ms Wheelchair New York 2012. You can read more by clicking on the link below the photo. At the recent London Fashion Week the creative director, of Topshop spoke about how they wanted to make their shows more accessible. They made their show interactive with the use of instagram and live feeds at their store at the shows venue. For all the people that could interact with the show such a small percentage would have been represented on the catwalk. And for a high street store I feel they need to be doing more to represent the wealth of diversity that shop at their stores.

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Alongside Chelsey Jay there are group of 20+ disabled people, of varying disabilities and walks of life that have all teamed together to form a pressure group. Each week we contact a brand en masse to encourage them to use disabled people in their advertising. That in their lack of representation they are isolating a large proportion of their customers. We want to know why this is? And hope to influence their future choices in who they employ to model their clothes. 

 

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We even have the support of the Minister for Disabled People, Kate Green who will be alongside Chelsey in future meetings with the brands. She recently suggested we raise the issue with our local MP's and get them to address the issue in Parliament during London Fashion Week. We received some great responses saying that they would happily put it forward. Responses from brands so far have varied. Some have been keen to respond whilst others have ignored the emails of 20+ people and subsequent follow up emails. With brands that we have contacted so far we hope to hold meetings with them to discuss the issue further. As well as emailing more brands. Like the poster says above we don't want special treatment just the same treatment. 

I hope after reading this blog post you too believe there is much more to disabled people and that disability should not affect their place in the fashion and beauty industries. I'm really proud to be a part of the pressure group and for raising the profile of disability in fashion. We're a pretty determined group who are keen to make a real change. 

Sian x

Travel interview with Emma

Today's travel interview is with Emma and is an interview with a twist, because she had a holiday abroad and here in the UK. So today you are getting the best of both with a home and away account and comparison. Hopefully anyone that doesn't feel up to travelling abroad can get some insight into what it's like to holiday over here. Also because Emma doesn't use a wheelchair or walking aids she isn't visabley disabled so it's an insight into coping when you could easily be mistaken for fit and healthy.

 

 

 

Name: Emma
Illness: Chronic Fatigue Syndrome/ME
Destination: Zante, Greece
Who did you travel with? Friends
What airline did you use? Fly sun wing.. I think! 

 

First of all, how was your holiday? My holiday was fantastic, the most fun and happiness I've experienced in a long time.

 

What was your biggest worry before travelling? And how did you overcome it/ justify it? Gosh, I had so many! Firstly flying, I'd not been on a flight in 15 years and had been scared too in my early teens, so this caused the first of my worries which turned out ok in the end as I really enjoyed it. Seeing the world is something I want to do and getting on a plane is a fact of life to do so. The excitement about the destination outweighed the worry in the end. 

 

Did you notice any changes in your health whilst away? Good or bad? Any new symptoms? I don't know if it was luck or the change of scene, but I felt quite well most of the week and was able to socialise most of the day all be it around the pool, but still that's not something I normally find easy without needing massive rests and bringing on all kinds of symptoms.

 

How was Tsilivi as a resort/ destination in relation to your illnesses/disability? (Access, flat, close to restaurants etc, quiet) when we arrived at the hotel, we were greeted by a staircase and steep drive, initially this panicked me as I couldn't lift my suitcase at all, luckily the staff took our bags up to reception and up to our rooms later. I found I managed well getting around the hotel, we were on the first floor and I didn't need to go up and down very often. The area of Tsilivi is mostly flat, at least what I saw. The town wasn't very close and I did struggle the one time we went down. The beach was a short stroll again not ideal but there's plenty of taxis around at really cheap rates so it wasn't really an issue.

 

 How did you find attitudes/perceptions towards you by other travellers and from the locals? I got one bad reaction from a fellow passenger when I was asking for help to lift my bag but otherwise no one thought I was different or acted different towards me as my illness is pretty hidden. 

 

From your experience(s) what piece(s) of advice would you pass on to other spoonie travellers? Don't push yourself just because you're on holiday, yes there's lots of lovely things to see but it's ok to go home and to have seen only one of those things. 

 

What items would you not travel without? Earplugs, eye mask and pain killers. I use Earplugs and an eye mask everyday but I would recommend to anyone who doesn't to take them with you. The plane is pretty loud and if you have to share with other people it's worth using them for noise and lights. The hotel I stayed in was very quiet at night, in fact when in my room I couldn't hear any other guests at all which is very important if you're sound sensitive. 

 

What are your favourite holiday beauty products? Garnier Ambre Solaire Aloe Vera After sun. I bought this a while ago after burning in the uk and found out how much it left my skin feeling smooth so now I use it as a cooling body moisturiser all the time. It's great to cool you down in the summer heat.

 

If you were to go on holiday again what would you do differently? I would worry less in the weeks leading up to it! 

 

How are you after the holiday? I lost my voice from the aircon on the plane and was very sleepy and kept falling asleep in the afternoon for about a week after.

 

Do you think that despite all the extra 'hassles' of travelling as a chronically ill person it is still worth it? Yes, totally 100% worth it. Personally being housebound most of the time I find I get very bored of the same four walls, I loved seeing a different area, somewhere my eyes had not seen before. I also think getting away from normal life is something we all need especially if you're chronically ill, for that week I left my worries that haunt me day in day out at home and found myself almost carefree (as much as chronic illness allows) and laughing so much, and they say laughter is the best medicine.

 

And here is Emma's interview after her trip to Cornwall.

 

 

 

Destination: North Cornwall
Who did you travel with? My mum

 

First of all, how was your holiday? It was lovely, I always feel so at home in Cornwall.

 

What was your biggest worry before travelling? And how did you overcome it/ justify it? The 6 hour car ride. It's always a draining time for me, but the beautiful beaches and country is well worth it.

 

Did you notice any changes in your health whilst away? Good or bad? Any new symptoms? I didn't feel well on the way down and the next day I woke up with an awful cold which my mum then got too. We spent a lot of time feeling ill together but otherwise my ME wasn't too bad, colds always make it worse to an extent but I wasn't as bad as I can be.

 

How was Cornwall as a resort/ destination in (Access, flat, close to restaurants etc, quiet) relation to your illnesses/disability?  We stayed at a family friends holiday home which is all on one level so no stairs. The beach is really close too which is great. The towns are good too as they're mostly flat.

 

How did you find attitudes/perceptions towards you by other travellers and from the locals? The same as most places. I went out for lunch one day with my mum and the waitress was telling my mum about a lovely walk and said she could show us the way if we would like, my mum said not to worry as I'm not well which sparked a very odd look. I could tell she was trying to workout what was wrong with me! This happens anywhere though.

 

From your experience(s) what piece(s) of advice would you pass on to other spoonie travellers? If you travel to north cornwall try and go out of school holidays as places like Padstow are a spoonie nightmare when the streets are full.

 

What items would you not travel without? Ear plugs, eye mask and water colour paints - if we go on holiday via the car I always take paints for quiet days.

 

What are your favourite holiday beauty products? Aftersun, fake baked body scrub

 

If you were to go on holiday again what would you do differently? I'd try not to get a cold! If I had the chance I would fly, half an hour on a plane beats the 6 hours in the car!

 

How are you after the holiday? It took me a few days of being housebound before feeling a little less drained.

 

What advise would you give for surviving long car journies for spoonies? If you can try and rest the day before traveling and if like me mornings aren't your best time try and get whoever you are traveling with to agree to a slightly later start.

 

Other than the location of course what where the biggest differences in holidaying at home and abroad? The weather, here I needed a hot water bottle at night as it was cold and the cold was setting off my leg pain. The beaches in the UK are much more enjoyable as there isn't music being played from beach bars or men trying to sell you knock off watches every 5 minutes! 

 

Did you find that there were was a bit more pressure to find things to do with a home holiday? Not at all, I've been going to Cornwall with my family for 7 years. We're all happy going to the beach or kicking back reading books.

 

Was there a difference in how your symptoms/ energy levels were in Zante and Cornwall? Surprisingly to me my energy levels were better in Zante than cornwall, my energy levels are always hit and miss and I think I got lucky the week I was in Zante.

 

 How did your PEM compare after each holiday? After Zante I kept falling asleep every afternoon for a week, I felt so tired. It took me about the same time to feel 'over' both holidays though.

 

Thanks again to the lovely Emma for doing the interview. You can read more about Emma and check out some of the fabulous outfits on her blog.

 

Sian x

Models of Diversity



photo source

  

In the wake of London Fashion Week what better time to talk fashion. In my post on body image, which you can read here. I mentioned an organization called Models of diversity. As their name suggests, Models of Diversity, are campaigning for the use of more diverse models in the fashion and advertising industries. Calling for more equality on our catwalks and in magazines. They are saying that the fashion industry needs to be more representative of a larger cross section of society. And there are so many cultures, ethnicities and lifestyles that are not represented fairly, even today in an age where we are educated about racism and political correctness.

photo source

I don't often read magazines now, but when I do it strikes me that more diverse models seem to be used as a 'token gesture' almost, and I do hate using that phrase. But it does almost appear like 'oh we've added a black model in to the mix to avoid any claims we're not an equal opportunities employer.' It's something I think a lot of brands are doing. And let's face it it's a pretty lazy way to tackle diversity. Because yes, diversity is about colour but it's about much much more than that. In an interview click to view male model Rob Evans says that it's only ever the same faces too and that he can visit various casting agencies and only see 2 black models on their books. He admits that because of his colour he was held back from many castings. He explains that in Brazil they have a policy of 50/50 casting. However the issue in his own words is that Brazil is not known as a fashion capital. More diversity needs to be shown on the catwalks of New York, Milan, Paris and London in order to make a real change. These are the shows that have the most influence. In a recent vlog Youtuber Tanya Burr said that she loved London Fashion Week because you could look around and everyone was so different. After all London itself is a melting pot of diversity. But is that being reflected on the catwalk, really?

The founder of Models of Diversity, Angel Sinclair (seen above) asks 'Where are the models of colour? The bigger models? The shorter models? The models with a disability? The older models?' and has established the organization to help make the fashion, beauty and marketing worlds more diverse places. A place where more consumers can identify themselves. With the ultimate aim 'to change the face of fashion and modelling.'

Angel, herself was inspired to start Models of Diversity after appearing on Gok Wan's Miss Naked Beauty and being surrounded by beauty in many, many forms. She noticed a clear contrast in what we perceive to be beautiful and what the magazines and fashion industries tell us is beautiful. And so Models of Diversity was born. They strongly believe in getting the publics opinion and asking them what they want to see on the catwalks and magazines and transferring that information into the fashion industries.

But where does the blame lie? With the designers? With the model agencies? Or casting directors? The following video is a CNN intervew with Iman, discussing the issue and how she thinks there needs to be a radical change in the Fashion industry. I think each of them has a responsibility to make the changes. However if the model agencies do not have more diverse models on their books, like Rob Evans pointed out, then the casting directors and designers don't have the choice available to them. Likewise if a model agency does not send their models to castings.

photo source

Whilst Models of Diversity recognise the need for more diveristy in fashion and modelling, they also understand that modelling on a professional scale is not for everyone. It takes a certain skill set and creativity. It is the same with an profession. But what Models of Diversity are saying is that if you have that potential then being more culturally diverse should not impact whether you get the job. And Models of Diversity are there to support aspiring models on their journey with training and test shoots. As well as promoting these models in the hope that agencies, casting directors, marketing executives and designers will take notice. As well as telling these models that they can be beautiful/ sexy/ glamorous. Building their confidence; which in itself is important, when they are used to thinking they are different and not seeing themselves represented in magazines and other advertising. In an interview on Sky News (which you can view here), model and director for disabled models at Models of Diversity, Chelsey Jay, explained that it's hard and isolating to be young but to not see yourself represented.

With the fashion industries, media and magazines being so powerful in their influence on so many people, especially young people seeing more diversity and widening the perception on beauty and attractiveness then perhaps more tolerance and understanding will stem from that. As well as inspiring more confidence in lots of men and women that feel they are not beautiful because they do not look like the models in the magazines. Now wouldn't that be nice?

To find out more about Models of Diversity visit their website, view plenty more videos of their events, campaigns and catwalks on Angel's youtube channel. Stay tuned for another Models of Diversity post on here soon.

Sian x

Come Fly with Me

It's been a few weeks now since I've been back from holiday and I still have a few more posts to share about it to continue the travel series. I know, it's never ending! This time I managed to document my journey to share some of my travel tips put into action and so that you get a clearer idea of what to expect should you decide to travel yourself.

Luckily pain levels etc were on my side and the days of complete rest before travelling helped me have the energy I needed.

Above is a glimpse of my travel outfit. I wrote a separate post on that which you can read here.

At the airport

If you have booked assistance from the drop off area which is useful for passengers travelling alone or those that need extra help with luggage and equipment there should be someone there to meet you. They should be wearing a fluorescent bib. If you have not requested help from the drop off point then once you get inside the airport locate the special assistance desk and check in there first. If you are travelling alone a member of the special assistance team will meet you there (if they haven't at drop off). If you have requested a wheelchair to help you through the airport you can collect that there too (again unless you got one at the drop off point). They will then direct you to the check in desk for your flight. 

Often there will be a separate queue for special assistance users or if not ask at the special assistance desk and they will usually tell you to go to the front of the queue. Cue lots of looks from those in the queue. At check in if you have your own wheelchair then you will need to get it tagged for identification purposes because it will go into the planes hold once you are on the plane. They will also tell you where and what time to meet a member of the special assistance team to board the plane. Unless you have booked assistance through the airport; in which case they will take you to the gate. The may also ask if you would like to get a coffee or drink to have while you are waiting.

Being in a wheelchair going through airport security is very different. Firstly as normal you will need to put all your hand luggage, jacket and hat etc into a tray to go through the x ray scanner. Take out your bag of liquids and put that separate. If you have any allen keys for your wheelchair with you like I do in a little pocket at the back of my chair then take them out and place them into the tray as well. Do show the security guard and explain so that they can pass it on to the person on the scanner. 

A member of staff will then take you to the side as you cannot go through the scanner, a female for female passengers and male for male passengers. They will perform a quick search of you and the chair. They should also ask if you are in any pain so not to hurt you. A swab of your shoes will also be taken. It's important that no other member of your party touches you or the chair until you have been given clearance by staff.

At the specified time, a member of the special assistance team will meet you and help check you in with a member of the gate staff. Once they have been given clearance they will take you out to either the ambilift or the plane's steps depending on what you have booked.

The top photo is of the ambilift that helps wheelchair users and those who cannot climb stairs to embark the plane. It's like a van with two lifts either side. One to lift you up the inside of the lift, where there are seats for others you are travelling with or those without their own wheelchairs. 

The 'van' then drives to the plane, generally to the back on the opposite side to where the other passengers are boarding and parks so that the front platform is level with the plane door. The floor of the van then rises level with the platform. I took the photo above as we were going up. It can be a little wobbly so hold onto the bar.

Once you are level with the plane and the plane door is open, you have the option, depending on your disability or symptoms on that day whether to walk to your seat or transfer into an aisle wheelchair or evac chair like the one shown in the photo above. I asked to use the chair as we were near the front of the plane and my legs didn't feel strong enough. Also as other passengers are boarding you can often not get directly to your seat. Having someone to help you to your seat makes people take notice. You get strapped into them.Those chairs are not very big or very comfy though and you will get tipped backwards to get over the lip of the plane door. Nor is it great when someone drops a suitcase on your feet! The evac chair is quite good though as it doesn't have any sides allowing for easier transfer into your seat.

On board

Now speaking of seats. Different airlines have different policies. Some have dedicated assistance rows. You can find out this information from your airline. Once on board make yourself as comfortable as possible and try to take small power naps or meditation sessions often to relax and recharge. I was lucky to be sat with my parents so that I could put my legs up across their laps (I was sat by the window.) If your legs begin to ache try and elevate them as much as you can.

Above is a photo of part of the menu for Ryanair, which I took to give you an idea of what is available and prices. As you can see the prices are quite dear so be prepared or take food on board with you.

Arrival

Once you land your wheelchair will be taken out of the hold and will be put by the steps of the plane and then taken to the ambilift if it is being used. If you do not have your own chair but have requested one then that will also be waiting. I recommend waiting until last to disembark so that you can do so in your own time. If you are using the lift and evac chair then you will do so anyhow. 

The above photo shows a bit more of how the ambilift works (and a very nice Greek man, I think you have to pay extra for him.) Once you are in the lift if your chair is in there you can transfer into that if not it will be bought to you once the lift is lowered. The van will then either drive closer to the arrival building or you will be taken on foot (obviously not yours.)

When it comes to transfers I've never had an issue with being able to put my wheelchair into the hold of the coach. The biggest issue is whether you can manage the steps of the coach. They can be quite steep. Again this is were a walking stick comes in handy. I've also often had people move from the front seats so that I could have them. A private taxi could also be a good idea. Only pay extra if you need a specialist vehicle and after checking policies etc. I know some holiday companies can arrange specialist transportation if you are on a package holiday.

Then all you have to do is relax and enjoy and take it easy. It will take a while to get over the travelling so make sure you rest. 

For a few more travelling tips take a look at my other posts.

travel tips round up page

at the airport and on the plane tips

I hope you enjoyed this post and it's took away some of the mystery of travelling as a disabled or poorly person. I have a few more posts on the travel theme to come, including my favourite products and some more interviews with other spoonies.

Sian x