Thursday, 31 July 2014

Body image


As I think I have mentioned just a few times I am off on my holidays soon, huzzah! I know for so many people the thought of going on a Summer holiday can really make them self conscious and send them into a panic about needing to look their best. And yes looking your best whilst on holiday can make you feel fantastic. However being too hung up about revealing your body on the beach can really eat away at people. For months now my feeds have been full of statuses about 'getting a bikini body' and it's the same every year. As well as plenty of statuses about how much they need to deprive themselves. And a lot of the time it's from the most gorgeous looking of girls.

To be honest it makes me feel a little bit sad. I look at them and think "look at you, you're stunning." But that's kind of the point; we will always judge ourselves more than anyone else will. It's just something we all do. Which I think is very naughty of our brains really. And so every year we see these statuses, or we hear our friends talking about what they're cutting out (sometimes literally) in order to look 'acceptable' on the beach.

What's worrying is that people will turn to fads and unhealthy solutions long before they will even consider eating healthier or excercising (M.E folk you know I don't mean you when I say the e word.) I swear if I get one more friend request from people selling juice plus! Gah! Juice Plus will not change my life. Changing our thinking habits just might though.


I know some people might say "oh well that's easy for you to say, you're slim," but again that's projecting this image of what we think a beach body is. In my early teens when I stopped running and horse riding from cysts on my ovaries and problems with my bowels I put on quite a lot of weight. I look back now and think "jeez, I had no idea I was that big." But in a way that's a good thought, because it means that at the time I wasn't constantly bullying myself that I no longer had a six pack. The only time I remember being affected by it was ringing up to say I couldn't do a youth theatre thing and them saying "oh is that big Sian." Ouch! And that was me completely done with them. But I lost the weight as a bi-product of being able to do more as my illness improved and over a few years; not because of that comment. 

A few years ago the round table came round our neighbourhood with Father Christmas on his sleigh and when he asked me what I wanted for Christmas, I replied that I wanted a new body. He said "but why when you're beautiful". Well thank you but what I would like is a body that worked much better. Because when you are chronically ill and disabled you start to appreciate your body on a whole new level. Your focus is more on how your body works and how much I guess you took for granted just what a good job it was doing. As I have said, health is wealth. A healthy body allows you to have everyday adventures and things we consider basic like walking around the shops, driving, playing with our children. You start to think "who cares what my body looks like when I'd rather it still could do those things."  And other than the fact it doesn't work properly I'm pretty happy with my body. In fact I'm just happy, even with all the rubbish I face every moment of every day.

Often people work so hard to lose weight or tone up but the last thing they do is change their thinking. Someone who has lost weight might still look in the mirror and still see their old shape. Often we don't fully appreciate it until someone else comments on it. Which in a way is sad as this is the body you've been telling yourself you wanted. Our thinking though is still so used to looking in the mirror and being negative or focusing in on what we think are our problem areas, that we can't switch off from that. So if you do want to lose weight, tone up or even if you feel you need to gain weight look at ways to monitor that change and adapt your thinking.

I also want to share this link to an article in Cosmopolitan UK about a woman having the confidence to wear a bikini after an emergency surgery to remove her spleen. It's motivational stuff, so do give it a look dont-apologise-wear-bikini. And recently I have seen a few similar stories floating around on social media. I read one last night about a group of young people insulting a woman who was sunbathing and had stretch marks on her belly. She of course got upset that people would so blatantly insult her. However the post was about how in fact she was proud of her body. Those stretch marks were as a result of pregnancy and reminded her of the wonder of having children and how much joy that bought her. Then there are the stories about Instagram deleting bikini photos for not being deemed attractive; read more here. The rise of people showing off their feeding tubes and bags and sharing them on social media, which personally I think is great for awareness of stomach and inflammatory bowel conditions, you go ladies and gents! Then of course there was the stories about photos being removed of women that had had mastectomies, around the time of breast cancer awareness month. Where it seemed a no make up selfie was deemed a sufficient way to promote breast cancer care and awareness but not cancer patients showing that they are still beautiful despite all the horrors they faced. Celebrate your bodies ladies! 

So my message is simple. Love your bodies. Look after them, treat them well. And if you do want to make a change then do so out of love not hate and do so healthily. I'm going to leave you with some positive quotes to help motivate you and hopefully I will do more posts on body confidence soon. Cue lots of shameless holiday snaps!

Be good to yourselves

Sian x

Tuesday, 29 July 2014

Travel tips round up

photo source: Pinterest

This travel series now has so many posts, I've just found that I have so much to say and I still have a fair few posts to add too. However my posts on all the basic sub categories of planning for a holiday are all done now, so I thought I'd compile some of the tips together and also add links to each individual post if you want to find out more tips on each category. I will also add all this information onto it's own page that you will be able to access in the tabs.

So first things first. Where do you start if you have decided that you want to go on holiday? Research, research, research! Find out as much as you possibly can about pontential hotels and destinations. Make a list of all the things that would be ideal for you and find somewhere that has all these key points. Whether it's accessible rooms to being near to lots of restaurants so you don't have to go far to eat. As well as the climate. You need to be as comfortable and happy with your choice as possible to the degree that you feel as though you know it before you go. Read my post here on researching holidays.

Be particular about who you choose to holiday with. You need to be totally comfortable with them and they need to know your condition and any requirements of care that it brings. The last thing you want is to feel like you're ruining someones holiday but more importantly you need to be safe.

Make sure all your documents (passport, health card, etc) are in date.

Make a check list of all that needs to be done after you have booked your holiday and schedule when each needs to be done. Remember to PACE and do a little at a time. Here is an example:

* arrange travel insurance and inform them of your condition

* book special assistance through your airline

* contact your hotel if you have any requests such as a room in a quieter area

* book or arrange transport to the airport and back. Or airport parking

* If you have pets arrange for someone to look after them

* Make a list of anything you need to purchase

* Familiarize yourself with the airlines luggage allowance

* Order any foreign currency

* If you plan to use your card abroad then remember to tell your bank so that they don't block your card thinking it's a fraudulent payment.

* Plan your medication and prescriptions

*  Make a packing list

More planning tips can be seen here.


photo source: Pinterest

Always declare your condition to your travel insurance provider. Read my tips on finding a good insurance provider here.

Special assistance can make your journey through the airport much easier. Ring your airline's special assistance help line if you want to talk about what services would be best for you. I have provided details of different airlines contact details to learn more about the special assistance services they offer here.

Take advantage of online shopping. You can buy just about anything online nowadays.

As well as your regular medication some other handy medications to take with you are bite cream, anti histamines, immodium, re-hydration sachets or tablets, sudocrem, prickly heat medication (I like to use mycil athletes foot powder, it helps calm down any stinging and can also be good for sunburn *) insect repellent and plasters. All info on preparing your medication can be seen here.

 Use a packing list, they're great for making sure you won't forget anything. Keep it nearby to add things to it when you remember something else. Tick things off as you go pack them.

When choosing a pool/beach bag waterproof options are best. You will always get someone that goes cannonball crazy and floods the whole pool area and they won't necessarily be children. Or keep your valuable items in a waterproof bag inside your pool bag.
Know your baggage allowance and restrictions for both cabin and hold luggage!

If you can't find your favourite products in a travel sized form there are many different bottles and pots available to buy that you can put them in to to take away with you.

When thinking about your suntan lotion, if you have fibromyalgia or are very sensitive to touch consider using a once a day lotion so that you are not having to apply as often and aggravating your fibro.

Invest in a filtered water bottle to take with you. Making tap water better to drink whilst abroad. It could save you energy by not needing to go to the shop as often and also the expense of buying bottles of water.

The week before you go away you need  to try and do as little as possible, as all your energy needs to go travelling. So being organized using all the planning tips above and having lists is really important. See my pre- packing post here.


photo source: Pinterest
Some of the places I'd love to go Las Vegas, Croatia, New Orleans, Santorini


Always pack for the weather, culture and the activities you plan on doing. Put your research to good use.

Pack all your essentials, things you rely on to help ease any symptoms. From heat pads to essential oils and of course all your medication and supplements. Put them at the top of your suitcase along with anything you will need that first day.

Get as much help with your packing as possible. I have some tips on packing, including some tips from seasoned travellers here. There is also tips on how to pack hand-luggage only here.

Put your take off essentials in a separate bag in your hand luggage so you can take it out when you get onto the plane and aren't desperately searching for them.

Make sure your travel documents are accessible as possible. An envelope style plastic wallet is great for this. Organize all your documents into order of use.

Keep all your medication in its original packaging and keep a prescription or doctors note with them.

Make sure any liquids in your hand luggage are under 100ml and are in a see through bag. All my tips on packing your hand luggage can be seen here.

photo source: Pinterest

Plan to wear your heaviest items for travelling to save weight in your case. Also plan on dressing with comfort in mind. Layers are a great idea as you never know what the temperature is going to be at the airport or on the plane. Or in fact what your body will decide to do. See some suggestions here.

On the day you go to airport tell everyone in your party to try and not get panicky or stressed as this can really affect you. You become like a sponge and soak it all up, which can completely drain you. 

Before you go to the airport, do a quick check that you have everything.

I have loads of tips and advice of what to do at the airport in this post. There's also info for nervous flyers on there.

I have a few more posts to come as I get ready for my holidays, I'll share with you how I'm getting prepared. Also I have some more interviews to come from other travellers, sharing their experiences. I hope you find these tips useful. If you have any tips of your own then please share them in the comments. I have also added a new page with all this info onto my home page, so that it's easy to find.

Sian

* A quick update, apparently Mycil is really hard to find now due to some ingredient. The chemist recommended a hydrocortizone cream or camomile lotion.

A year in review



Photo source: Pinterest

Today marks one year since I started this blog. So happy blogaversarry to me! Where's the cake?! I wanted to do a more in depth post about my reasons for starting the blog and what I've learnt along the way but my brain feels rather numb at the moment. Still recovering after last week. I've been trying and trying to write but my head just won't get into it. So for now I am just going to do a mostly photo based post about my year in the blogging world. 

photo source: Pintetest

I have explained what it's like to have M.E and tried to put it in ways that a non sufferer will understand. Trying to put across that it is much more than just tiredness and that it is a real illness that can have severe and disabling effects.

photo source: Sian Wootton

I have also explained about Fibromyalgia a painful conditon that many M.E sufferers also get, causing painful limbs and hypersensative nerves that can make the simplest of touches to cause pain. A duvet can feel like it's made of bricks. Read my post here.

photo source: pinterest

I have some posts about the things that I learnt at M.E clinic, which thinking back now and knowing the severe side of the illness personally I think in no way was I prepared for it and was therefore left a bit vulnerable at a very scary time. Again, this only goes to show how much more awareness and funding is needed into this illness. What's more it's why starting this blog has been an education to me too as I've been able to discover more as well as share my own experiences. I was actually by the clinic the other day and I wanted to go in and tell them all to use social media to get 24 hour support and understanding. However whilst there I learnt a bit about keeping activity diaries, which you can read about here, to try and establish an activity baseline. Also about the importance of diet and some ways to help you to shop for food and prepare it when you have limited energy and I have created seperate tabs on the blog with tips to help save you some spoons. Read my tips for preparing and cooking here and my tips  on food shopping here.

Photo source: Sian Wootton

Despite everything I have been very lucky to have been able to get away on holiday. Thanks mainly to knowing the resort and people there well but also with a big helping hand from special assistance. Honestly people may moan about Ryanair but their special assistance service is a credit to them. But planning a holiday when you're ill comes with many things to think about and when you don't have much energy to give it can seem an impossible task. That's why I put together a series of posts, a kind of step by step guide to all things holidays when you have a chronic illness. I still have a few more posts to go and then I will collate it all and create a new tab so you can get all the info in one place but do check out some of the posts so far.

Photo source; pinterest

Christmas is a difficult time in the spoonie calendar. So much to do so few spoons to do it with. So actually for me last year I started planning for Christmas in around August (honestly). I should probably start thinking about this Christmas soon. Buying gifts as and when and helping to spread the cost a bit better. Again I provided some tips on how to cope with the holidays when you're chronically ill, which can be read here. I was fortunate enough to get this post as a guest blog on Pajama Daze, a great chronic illness website with blog with lots of positive encouragement for spoonies. Despite having little energy I had a lovely Christmas with family. My Mum needed to open my presents for me as I didn't have the strength but I had some really thoughtful gifts, including 2 spoon necklaces.

Photo source: Sian Wootton

Since becoming ill I try to read as much as possible to keep my mind active. Earlier in the year I shared with you all some of my favourite reads from last year. Read the post here. One of which was Molly Caldwell Crosby's Asleep, which is fascinating. Could this be the origins of M.E and why was it forgotten about? I hope to read it again soon and I'll be writing a blog post about it.

Photo source: Justice for Karina

Earlier in the year marked one year since severe M.E sufferer Karina Hansen from Denmark was forcibly removed from her home and the care of her parents. Having refused psychiatric help knowing it would not help and because the psychiatrist in question did not provide a treatment plan, they thought she was safe. However they managed to twist this around to an act of neglect and that Karina needed to be admitted to a psychiatric ward to make her better. Sadly after a year she is still there and significantly more sick but despite that they refuse to see that their treatment is making her more severely unwell. Please read more about Karina's story here. This is why M.E needs to be recognised as a severe illness by not just a few but by all, especially within the medical profession. M.E has been classed as a neurological illness by the World Health Organization since 1969 yet it still has so much disbelief. This is why raising awareness is so important and is a challenge to us sufferers.

Photo source: Pinterest

On May 12th it was M.E awareness day and I was absolutely staggered by the amount of awareness initiatives going on; mostly by sufferers themselves. It was just incredible to feel a part of a group that were giving it all they could to  raise awareness and fundraise for various M.E charities. People that don't have a lot to give due to the very illness they're trying to raise awareness of but are doing what they can to make a difference. For me it felt like we were giving ourselves a chance, fighting to be believed so that we can get the research and funding we need to find treatments and with any luck a cure. 

Myself and a group of close friends that have got to know each other through social media all embarked on a big canpaign to fundraise for Invest in M.E. We shared our stories, shared articles etc. Then on May 12th we all dressed as Princesses to show that being stuck in bed is far from a fairytale and we might be royally demanding at times but that is due to our illness making us unable to do much for ourselves. I hope to have a post about it soon. Yesterday we found out we have raised £4000, which is just staggering and can help make a big difference. The support we have received has been truly amazing. It was incredible to be a part of such a dedicated team, who all did their best with what little they had. It's amazing how those who have so little to give are actually the biggest givers. 

So there we have it one year of blogging and I've not covered it all here either. I have really enjoyed it. I'll speak more indepth about what I've learnt etc in another post but this blog has certainly been a lifeline in a way. So here's to many more posts and a huge thank you to all that have read my blog. It means the world.

Sian xx

Tuesday, 22 July 2014

Travel toiletries update

Just a little update on some travel toiletries that I wanted to share with you all. At the weekend I went shopping (woo! Round of applause for that!) and found a cute new toiletries bag, one that I can hang on the back of doors etc. If you only have a small bathroom with limited shelf space or say you are on a cruise or a caravan then these can be a great solution. This one is also waterproof which can be useful. They're so great as you can separate your things into different compartments. The only thing I would say is that if you're going somewhere hot then don't keep your make up in it as the extra steam from the shower could cause your make up to melt. If you have a fridge in your room then hog it with your make up.
 

It also came with a floral drawstring bag too. That will be great for extra storage or for putting a travel hair dryer in. Or even as a small laundry bag for a weekend trip. I plan to use it as my essentials bag for the plane, to put all the things I'm likely to need within the first half an hour of the flight in. I think it will be good for that as it can be hung up too. I got this from Forever 21. They also have them on their website at www.forever21.com 

Whilst there I also picked up this make up bag. Also available on their website, as well as a black version. I got this as I thought the selection of brushes was good. Usually with a travel set you only get 5, but because these are double ended you get a wider selection. And the make up bag itself also has a clear panel so you can use it in your hand luggage if you want.


In my original post I was also looking for a bb cream to use on holiday, to help protect my skin in the sun but offer me good coverage. After asking for advice on instagram and searching Pinterest I got a few recommendations and off I popped to Boots to try some out. It was in the evening so not all the counters were manned but there was a lady on the Smashbox counter and as it was one  that was recommended I asked for some help. This Camera Ready BB cream has a high level of sunscreen at factor 35 and it also offers good coverage. And as it says it preps your skin for those ample photo opportunities on holiday, by priming the skin and evening up your skin tone while covering up any blemishes. It's really light too. I can't wait to use it on holiday. I used it one day last week on a crazily muggy day and despite my face dripping from the heat it still offered good coverage. I found it better than a foundation in this hot weather as my skin could breathe more. They also have a CC cream in am spf 30 if you want to even up your skin tone, which actually might be good if your face gets a funny tan.

I have been meaning to get to Superdrug for a while to stock up on some travel toiletries, many of which I mentioned in my original post but just haven't got there. However, they do have free delivery when you spend more than £10 online, which I thought was great and consequently took advantage of. As you can see I got the mini Nivea suncream lotion, protective lip balm, Simple moisturizing face wash and some Palmers Cocoa Butter as I mentioned in the post. I also got a tea tree exfoliating cream, tea tree is great for calming your skin and regular exfoliating on holiday can help develop that tan. I also got a raspberry and strawberry shower gel as I thought it would smell divine, probably not mixed with the tea tree though, so it may get used on other occasions. Superdrugs own mini shower gels come in great sized bottles. I find some of the others like Dove or Nivea too tiny for longer holidays. I also got some scalp protection spray by Malibu. Malibu is just the smell of holidays. I got this as the tops of our heads are so vulnerable to sun burn. Although I plan on wearing a hat most the time in the sun but it's good to have that added protection and because the suns rays can still get you. It's only a factor 15 though, so I will be using it fairly regularly.


I can't believe I didn't mention Soap and Glory in my original post. I love these but I don't actually have many products. Probably as I don't go into Boots that often (sometimes that shop overwhelms me.) They always have great gift sets around Christmas so they are great presents. I love the body butter and hand food.


In this muggy weather and because my tablets make me really thirsty, I've been trying to keep myself well hydrated. Which can sometimes be funny when your legs aren't working properly. But I think this will help prepare my body and skin for my holiday too. We've resorted to using a jug so I have enough and am not constantly asking for a drink but actually it's a good way to keep track of how much you are drinking. I've been using some rehydration tablets too to help with heat induced cramping and just being a complete sweaty Betty and I find they help. I will be taking a pack on holiday with me. My packing list is getting very long!

Another thing I'll quickly mention on this topic and is getting a well deserved spot in my suitcase is a filtered water bottle. I spoke a bit about them in my packing post, but basically they are a re-useable water bottle that has a filter in the neck. This means that you can drink the tap water and all the impurities that you might have been worried about get filtered away. Saving you a small fortune on buying bottles of water and giving you a few more pennies to spend on ice cream or bracelets.

On the weekend I'm also hoping to go to the spa for Body Silk Glistener treatment. This is a full body exfoliation and moiturising treatment to help get your skin all scrubbed and fresh and ready for the sun. So I'm looking forward to that. 

How do you like to prep your skin for holidays?  Let me know in the comments.

Sian

Sunday, 20 July 2014

Monday Morning

photo source: Pinterest
  
Erm, I would love to! Seriously.

A lot of people tonight will utter one or more of the following phrases:

"Where did the weekend go?"

"Why do Mondays come around so fast?"

"Back to reality tomorrow"

Followed of course by one of the following statements when they get up the following morning:

"I hate Mondays"

"Monday is the worst day of the week"

Etc, etc, etc you know the kind. Just scroll through your timelines on Facebook or Twitter to see more.

But to all of you lamenting that the weekend is over; that you have to go back to work; facing another 5 days of early starts and commutes. That you had a fantastic weekend spending time with family and friends and now it's back to reality. Or lamenting that once again you didn't win the lottery and no longer need to work as you will be in a different country every week. To all of you, I say I would gladly swap with you. 

I would happily wake up early, even on the cold winter mornings when the car needs to be de-iced and go to work. Then spend 8 hours sat at a desk, staring at a computer screen. Staring out of the window on hot days wishing I was really sat in a beer garden. The office bitching, the person that has stolen your dairylea triangle that you wanted for your lunch. There being no spoons in the office kitchen for you to stir your tea so you end up using a fork or a pen. I would very happily be looking forward to facing that tomorrow. 
 
photo source: Pinterest
And one day I hope I might make that a reality. Maybe not necessarily working in an office but out there working. Earning my own money. Money that could give me back some independence. To drive again too, will just be fantastic. To go where I want, when I want. To pull up at work and say "come on then what is today going to bring?" and leave thinking "I achieved something today." I am tired because I have done a days work. Importantly I think a big factor will be just being more social everyday. To be around people of a similar age. To enjoy work banter. To enjoy company. 
Bring it all on. Yes, I absolutely wish I was going to work tomorrow. I envy all of you that are. I know that I perhaps will not work in stage management again, but you never know. I do know that I will enjoy work, of course moan on occasion, but I won't work myself into the ground either. It will be 'work to live', which is a complete flip around from my previous beliefs. But in all honesty I would absolutely love to just have that normality and I would be extremely grateful for it. I would love to not feel completely knackered just waking up and having breakfast. That that morning routine just becomes a process that actually doesn't require much thought and then off out the door I go. And the tired I feel when I got home afterwards was a 'good' tired; a 'you've done a full days work' tired. To wear proper clothes everyday and not just stare at them, hanging in your wardrobe only coming out on special occasions.
 
Why? Because right now, things are far from normal. Weekdays and weekends don't even have a difference, because each day is another day of fighting. Of suffering. Of getting little respite from your symptoms. Of asking for help over and over each day. From help me sit up to can you feed me. Being so helpless some days. So very far from the career I was forging and helping others more than myself. And it all changed so very quickly. Life can change in an instance. 
 
So I dream of all the things most people are tonight moaning about. I want what you have. So you may not think you are lucky and that things are unfair but you are the envy of so many. You can earn your own living and not have to spend most of it on medication. You have freedom. You have company and social interaction, that's away from a phone or computer screen. You can make plans for the weekend and know that you can keep and enjoy them. Most of all you have your health. Health honestly is wealth. So many take it for granted. I know I did. But never again. Good health will take you places. So treat yourselves well and be grateful that you have it. Good health is something that is often under rated, something you don't really fully appreciate it until you fall ill. And no one thinks that will happen to them.



I don't mean to sound maudlin here, nor am I saying you should live your life constantly looking over your shoulder. I simply mean, enjoy life, make the most of having good health and if you want to and are able to make changes then do so for the good of your happiness. But also appreciate that all the things that you consider normal, even the dreaded Monday morning alarm are things that many others would love to be their normal. Instead of day upon day of emptiness at the mercy of your symptoms. We're not lucky to be at home or in bed everyday, you may think we are, but it soon wears thin. I wish I could swap with you, I really do. But on the other hand I wouldn't wish this on anyone.

So tonight as you go to bed try and think of the positives rather than the doom and gloom thoughts about the dreaded Monday morning and maybe think twice about those statuses.

Sian





 
 

Thursday, 17 July 2014

Spoonie Travel Interview with Sophie


As part of my travel series I wanted to interview some other chronically ill people that know about their experiences of travelling to give you all as much information as possible as well as ideas where is good to go. Today is the turn of my good friend Sophie, who earlier in the year went on her honeymoon. 


Name: Sophie
Illness: Severe M.E and spinal damage
Destination: Lisbon, Portugal
Who did you travel with? My husband
What airline did you use? EasyJet
 
 
First of all, how was your holiday? It was lovely, it was our honeymoon and was very much worth the 9 month wait! 

What was your biggest worry before travelling? And how did you overcome it/ justify it? Flying is always my biggest worry with travelling, not only because of the standing around at airports, and business, but because I hate flying. My fears of the airport itself where overcome when suggested to me (by your lovely self), that I book assistance. The assistance staff were all very helpful and even took care of me when I had a panic attack about the actual flight and my husband wasn't near me. 



Did you notice any changes in your health whilst away? Good or bad? Any new symptoms? I was able to walk a bit more than I can at home, I think the warm weather helped in that regard, although I did over do it. It is a very hilly city, and in my stubbornness decided I could climb them. I didn't notice the effects of this until I got back to England though, I was enjoying my honeymoon too much to notice!

How was.... as a resort/ destination in relation to your illnesses/disability? (Access, flat, close to restaurants etc, quiet) 
Lisbon is a lovely city, but it isn't easily accessible, it is built on 7 hills of varying height and the streets are narrow and paved with a marble-like cobble effect which makes them slippery. 
Some of the things we went to see were accessible, the Oceanarium and Zoo, for example. But other's weren't so easy like the Estadio De Luz which was out of the way and took a lot of walking to. The Castle wasn't easily accessible by foot either, but there was a bus that went up to the ticket office. 
We didn't stay in a hotel instead we found a lovely apartment from Air BnB to stay in, and although it was in one of the small streets it was quiet and in the centre of everything. 
The open top tour buses were fully accessible with wheelchair spaces and friendly staff - we used the City Sightseeing company, but there were 3 other companies who all looked as accessible. This was a brilliant way to see the city without doing too much walking. 
  

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


 
When we were out I had my fold up stick rather than my bright pink crutches. Simply because my crutches were just getting in my way around the streets, and it was easier to not use them. So people didn't really notice there was anything wrong with me, just that I walked slowly and stopped a lot!


From your experience(s) what piece(s) of advice would you pass on to other spoonie travellers? 
Make sure you check your destination is accessible. We didn't when we booked it as I wasn't very ill, but 2 weeks before I had a knock back and my husband was close to cancelling the trip after I looked to see how easy Lisbon was to get around in a wheelchair.


What items would you not travel without?
My fold up stick. When the streets were too difficult to use my crutches, my switch stick was my lifesaver. 


What are your favourite holiday beauty products?
My GHDs. I never go to stay anywhere without them! 
 
 
If you were to go on holiday again what would y do differently?
Next time we will make sure our destination is accessible, I will have no choice but to use my wheelchair on our next holiday and we have learnt from our mistake! 


How are you after the holiday?
I was a wreck when we got back and have taken a long time to recover, but I was so ill when we went that I think not going wouldn't have made much of a difference to how I am now.


Do you thin that despite all the extra 'hassles' of travelling as a chronically ill person it is still worth it?
Definitely, we might have to do it differently to other people, but just because we are ill doesn't mean we should miss out on holidays!
 
I hope you have enjoyed this interview, if you want to read some more from Sophie, take a read of her blog nonsensefrommysofa.wordpress.com


Sian x

Monday, 14 July 2014

Sleep in style

Take note!
pj's from www.forever21.com

This week, after a hectic but wonderful weekend I think this week is going to be a predominantly pyjama week. Although truthfully that is true of most weeks.  Recently I posted my first outfit post, as part of my travel series. As someone who spends a lot of time in their pj's, I do see how writing a fashion post could be quite ironic. You might not think that style/ fashion were much of a concern but actually I'd say it has come to mean more to me. My style has certainly changed since becoming ill. I'll talk some more about that in a future post because pretty soon I'm going to talking a lot more about disability and fashion....

But let's begin with what I mostly term as 'everyday wear' or 'leisure wear' and with any luck 'sleep wear'. It's the chronically ill uniform that is pyjamas.
 
 
For me pyjamas or night wear, is all about comfort. Yes, there are a lot of gorgeous nightwear out there that are pretty and skimpy and you would wear in the honeymoon phase of a relationship but when night wear becomes every day wear, and sometimes your Dad needs to spoon feed you breakfast, skimpy doesn't cut it. So it's all about being as comfortable as possible. One of my symptoms is that I often get really cold feet or the lower part of my legs. So more often than not I have too opt for long pj bottoms, even in summer and they're covered there's no way my brain will even think about sleep. On the other hand I can also suffer from night sweats and can often break out in hot flushes throughout the day because our bodies have a poor temperature gauge. So this can mean a few changes of outfit throughout the day/night.

Some of my pj's (apologies about the creases)
Here's a selection of some of my favourite pj's that I own. I have way more than this. I buy a lot of my nightwear from Primark as I think they're actually really good for what you pay and because I need quite a lot it doesn't brake the bank too much. These have actually lasted better than a pair of M&S ones my sister got me for Christmas that have completely shrunk. 
 
www.forever21.co.uk
 
I love these statement pyjamas from Forever 21. I think they sum up spoonie humour really well. We certainly would get more use out of that little black dress. If it's not very clear the black vest says "I don't hate morning people, mornings have nothing to do with it."
 
www.asda.com

The supermarkets can also be great for pyjamas at great prices and of course if you're chronically ill getting things under the same roof can be useful.

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I love these zebra ones. Some of my spoonie friends have Hypermobility syndrome or Ehlers Danlos Syndrome and they are often referred too as medical zebras. I will explain that a bit more soon hopefully.

www.thepillowfort.co.uk

The Pillow Fort is a great website for your young people with a chronic illness as it really focuses on positives and learning to appreciate the smaller things in life. They also have a small shop that sells lots of fun yet essential items for spoonies. Take a look at some of their sleepwear above.

www.ldifme.org.uk

And if you want to give back and do your bit for charity in a way that's just so perfect for the chronicly ill person then Let's Do It for M.E even sell nightwear in their shops.

So there you have some of my current favourite sleepwear on the market right now and all at spoonie friendly prices. I also fully recommend reading some the lovely Meg from www.meg-says.com blog post on her favourite nightwear too. Read it here, she has some gorgeous selections.
 
Sian x