Christmas and New Years for a spoonie

 

Christmas and New Years can be difficult times for spoonies. The whole holiday is packed full of messages to have fun and celebrate. To enjoy and be happy. And it's not that we are not happy. I've even said many a time that I'm wierdly the happiest I might have ever been. It's more that the increase in activity that will inevitabley happen around these times brings with it a whole heap of moments where you're reminded of the things you can't do or have difficulty doing. All in the space of a short time. And being constantly reminded like that can feel like we're being taunted.

 

Lying in bed because you're too ill to be downstairs and hearing everyone else as they eat Christmas dinner is strange and can make you feel left out and lonely. Or even if you cannot sit around the table as you need to have your legs up, is isolating. Not being able to open your presents by yourself or hand presents out, cut up your dinner or pull a cracker reminds you how weak you are. So you get the hint. Lots of little things all at once that can add up to a bigger overall feeling of well pantsness.

 

Then there's New Years where it's kind of expected you go out and party, make new years resolutions and hear all about how rubbish peoples years have been and how 'next year is going to my year.'

So how can you help yourself during these times? To keep your head above water and not feel utterly miserable.

 

Evaluate- Think what Christmas means to you. The nice things that is. What is it you want Christmas to be? Does it have to be a big dinner with all the trimmings? Do you need to leave the house? Do you need to play hostess?

 

Prioritize- All of us have to prioritize or 'juggle' over Christmas. You try and please everyone but don't want to show favouritism. But what's important is once you have evaluated what Christmas means to you that you make choices made on that decision. That may mean only spending a short time with family or only being able to go to one celebration/ dinner/ gathering/ do/ knees up. If you answered that Christmas for you is all about seeing your child(ren) excited on Christmas morning, then make that your priority. Sure you may need to negotiate in some areas but when you do bear this next pointer in mind.

 

Be realistic- know what you can manage. If you can't cook a full on Christmas dinner but aren't going elsewhere then ask yourself 'does it really matter?' If you have spent your spoons getting up to watch your kids open their presents who says you can't have a picnic in bed with them come dinner time. And be realistic with your family so that they know how much you can honestly handle. Your friends Christmas Eve, your family Christmas day, his family boxing day, just isn't going to work. Especially if you have New Years plans too.

 

Pace- I'm sure I don't need to explain this one. How many times do we hear it?Little by little. A bit at a time. Don't spend all your spoons in one go (unless you want to.)

Share your plans- tell people what you think you'll be able to manage. That way they can help you to achieve that. And they also know that you achieved what you set out to achieve and don't feel too bad for you.

 

Don't be down on yourself- like I said the increase in activity over Christmas and New Years can really mean being reminded more often of things we can't do or are missing out on. But remember THAT IS NOT YOUR FAULT. You will achieve what you achieve on those days. To others it might sound very little but do not judge yourself by others standards. And what you do achieve will mean more. Again remember your evaluations.

 

Ask for help- If you need help you can only ask. Family to help take you shopping. Going elsewhere for dinner. 

 

 

If you can, and want to dress up or put on make up- if you have enough energy to spare then looking good on the outside can help you feel better emotionally. Plus, we don't really get many ocassions to wear our best clothes  or just clothes that are not pyjamas. So if you have the spoons go for it. If not then save those spoons for festive cheer  and sod it if that means wearing pj's it means wearing pj's.

 

Check in with your spoonie friends- chances are you won't be the only one stuck in bed. And whereas most of your healthy friends will not be on their phones much your spoonie pals just might be. So wish them a Merry Christmas and have a little chat. It's a definite way of not feeling so lonely if you're feeling like you're missing out.

 

Random Acts of Kindness/ Give to charity- At this time of year when it's easy to get carried away in the commercialism of Christmas it's good to remember that Christmas is a time for giving. Sadly there are many people that are worse off than us. So if you can think what you can give to someone. It might be a donation to charity in the form of a donation or a gift. Or buying an extra advent calendar and some extra food to give to a food bank. Helping out where you can at community Christmas dinner schemes set up so people don't have to spend Christmas alone. Donating any unwanted clothes, toiletries or toys to a homeless shelter. Going to have a cup of tea and a chat with someone in your community you know is struggling. Or it could be as simple as sending a letter to someone. Spread some cheer.

 

Enjoy it- whatever you end up doing over the holidays enjoy it. Yes that might be hard if you're really bad. But when you can join in relish it. When you give out your gifts take time to look at their reaction. Enjoy tucking into some yummy food. Laugh. Love. Eat. 

 

Make resolutions you can keep- most resolutions are cursed from the get go because they simply aren't realistic. "This year is going to be my year," is always one that makes me cringe. And we can have all the will in the world but we can't always have total control over our lives. Otherwise I'd be healthy and lying next to Pasha Kovalev right now. All we can do is try and I think trying is a good resolution in itself. To adopt an I know I can't control everything but I can control my reactions and try to be happier/ more appreciative/ more body confident (insert your aim here). Having a chronic illness I know that some things are beyond my control. And I can't tell myself "next year will be better" but I can say I'm going to do my best and will take things as they come. That I will try to be happy despite the illness, because that I can have some control over. (Please note for anyone with depression/ anxiety that I know happiness isn't as simple as making a choice. That it can actually be hard work. Really hard work. And time.) 

 

Memories jar- one way of trying to be happier overall and one that has really worked for me this year is to make a memories jar. You can read my post on it here and I will soon have a review post up. Ah that sounds scary! Seriously where has this year gone? Basically the memories jar is a jar that you put notes in and on the notes you write down anything good that happened or something funny somebody says etc. Big or small. Then at the end of the year you can open up the jar and read all the lovely things that happened throughout the year. I think it's particularly good if you don't have any plans for New Year. I don't know about anyone else but I always feel a bit funny on New Years, like you need to be making a big deal that it's the end of the year and the start of a new one. So I think this is a good and positive way to reflect and look forward to more happiness in the year to come.

 

I hope these tips help you through the festive period and that you are able to have some joyful times. Do take a look at last years post with more tips too What are your plans? Do you have any more tips for coping over the holidays? 

Sian x

Invisible illness week

 

Unfortunately I've not been able to prepare a dedicated post to mark invisible illness awareness week, which  was this week 8th-14th September. I've been trying my best to finish other posts that I'd been working on for weeks and feeling really rough, with 3 days of being bed bound. However what I can do is to use this week as a jumpstart. 

 

For a while now I have been thinking about the reasons I started this blog, one of which was to raise more awareness and to let more people know about an illness that they'd perhaps never heard of before. Mainly because there is not a lot of help out there and a true life account is the most honest way to share what it's really like to be chronically ill. Being told that you have a condition that you have never even heard of is frightening. You would think that an illness that can be so disabling would be more common knowledge but sadly there is a lot of misconceptions and untruths in what little understanding there is. So I wanted to share the truth and perhaps create a little corner of the internet that could help other sufferers, new sufferers and friends and family of sufferers to help nurture understanding.

 

 

With this in mind I have been wanting to branch out a bit (there will be a lot of branching going on hopefully in posts to come) by featuring lots of other chronic illnesses that a lot of people have never heard about. What I want to do is to educate myself and others about more invisible illnesses and share them on my blog. To try and raise more awareness.

 

I already have a few in mind. Some of which I have experience of and I will be doing more mental health posts. However, I would like your input. Do any of you suffer from a chronic illness other than M.E or Fibromyalgia? Would you be willing to share a little of your story and information to help educate others? Even links to charities, organizations, blog posts and articles you have found helpful would be much appreciated. You will be credited of course unless you want to remain annonymous. Your help will be gratefully received. Please contact me in the comments or through gmail. If we can raise more awareness and educate people then all the better.

 

 

Lastly I created the photo at the top of this page after seeing a similar post that my friend Olivia did. These photos were taken on the same night. Now looking at the photo on the left if people didn't know better they would assume I was healthy but the truth was I was only out of my chair for 2 minutes to take the photo. Even the photograph in the wheelchair does not portray the whole picture. It says I have a disability but does not portray the days of being bed bound, needing care every day and the lack of independence. In both photos I'm the same level of ill but who would guess? The point is we never know the full story and therefore shouldn't judge. Many of us are fighting silent battles behind closed doors. But when we do go out we crave that little bit of normality that we don't get to experience often.

 

 

I have wrote other posts on invisible illness and M.E before so please do have a read of them too.



 invisible illness week 2013

Am I Invisible

 

In my 2013 post I say that the best way to educate and spread awareness that is truthful is to read the blog posts of sufferers. Below are links to some of the blogs I read regularly, all written by some very lovely people that are doing a sterling job at raising awareness through their bravery. As you can see there's a fair few. All ladies though, I need to discover some male bloggers. Come on fella's.

 

All About ME by Alison

Meg Says by Meg

ME, Myself and I by Anna

The Chronic Ills of Charlotte by Charotte

A Life Within An Illness by Clare

Life, Love and M.E by Hayley

Nonsense from my 'home office' sofa by Sophie

M.E and Me by Chloe

The Pillow Fort

Emma's Looking Glass by Emma

Freckles and All by Faye

Katherine and ME by Katherine

Chronic Fatigue & ME by Louise

Let's Pretend I'm Interesting by Poppy

Smell the Roses by Rachel

Spoonie Sophia by Sophia

Around and Upside Down by Vicky

www.chelseyjay.co.uk by Chelsey

Smoothie Spoonie by Lennae

 

Sian

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

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

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.

Add caption

 

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

 

Packing tips

Such pretty cases; photo source Pinterest

It's finally time to get packing those bags to go away. I wish! Firstly, the golden rule if you have a chronic illness, as highlighted in my pre-packing/ planning post is to leave the week before you go away as free as possible for resting. This is also a useful tip for anyone wanting to take away some of that pre-holiday stress, you know that feeling when you're so stressed with so much to do that you need a holiday?

Again for anyone with a chronic illness get as much help packing as possible. You can supervise with your list and with all the preperation you have done. 

For clothes that are more likely to crease put them all together at the end of the rack in your watdrobe, to put into your case the day before going away.

Again, always work from a list, so not to forget anything. Below I have put two photos of comprehensive lists of the types of things you need. You can print copies of these and view larger versions by opening the links from my pinterest. You can use these as a starting point and then write a more specific one, 'blue floral print dress' for example. Descriptions are great if you are not able to sort through your own things and getting help with packing.  

photo source Pinterest

Photo source Pinterest

Know your baggage allowance and any sizing restrictions and adhere to them, those fines are hefty. Always weigh your bags at home before you go.

I have been looking up some packing tips on Pinterest too. Some of my favourites are 22 Easy Tricks To Make Packing So Much Better, some seem a bit extreme but others look genius, one of which being to use a foldable wardrobe storage, like you would use for camping to pack foldable clothes that you can then put straight into the wardrobe in your room. Another favourite was from twotwentyone, that has some useful tips for packing jewellery and keeping things organized.

Other tips are to always put the heaviest items at the bottom of your case

I'm sure many of you have heard that rolling your clothes is better and more economical with space, rather than folding. However I read a great tip about folding on the way there and rolling on the way back to know you have room for any purchases.

Wear your heaviest items to travel in, trainers for example or carry your coat.

Put the items that you are likely to need first at the top of your case. A change of clothes etc. Often for those with a chronic illness that is pyjamas, to rest after travelling.

I also pre-pack my beach/pool bag, with towel, sunglasses, sun cream, flip flops etc, so that I am not having to pull everthing out to find things. I can simply grab that bag and get soaking up those rays.

I saw a great tip on Pinterest and have included a photo of below, it applied to travelling with children but I think it could work for adults too. It was to create and bundle together an outfit for each day, so for example t-shirt, shorts, socks, underwear, hair accessories then place each bundle in a zip loc or vacuum bag and label with a day for each day that you will be away. Then do another bag for swimwear and pyjamas and some extra clothing just in case. If they are creasable then take each outfit out of the bag the night before and spray lightly with a water spray and hang up. I think this could work well for many people. As for children it promotes responsibility and helps them get dressed by themselves.

A great thing to pack is a refillable water bottle with a filter, such as this one on Amazon. They may be expenisve initially but think of the money you will save on buying bottled water, whether you're abroad or on a cruise. Also lessens the rush to get to the shops and allows you to refill at the airport without purchasing another bottle.

If the bathroom is small in your accommodation or does not have much shelf space use an over the door washbag or one of those shoe holders (as seen inn photo beleow) to store your toiletries. This is great for cruises or caravan holidays.

As well as luggage tags, which could easily rip off put a piece of paper with your home address and holiday address on, on top of all your items inside your case, making it easier to be sent to you should it go missing.

This isn't a packing tip as such but could come in handy for anyone travelling with young children. If your accommodation only has a shower, consider buying an inflatable paddling pool or boat to be used as a bath. Guess that could be used for spoonies too. Remember you can tranport 2 pieces of medical equipment with you, free of charge, so one of these could be a shower stool or wheelchair.

Check out my post on special assistance and medication for more information on travelling with medical equipment. 

Do check out Pinterest packing tips for lots more tricks and nifty ideas.

Anymore packing tips then please leave a comment. Remember to pace as much as possible and get help where possible too. You may notice I've not mentioned hand luggage, well fear not that is coming up next. I thought it deserved a post of it's own seen as it would be carrying the majority of your spoonie and travel survival toolkit.

Sian

Reminiscing

That title took several attempts, my spelling is atrocious lately. I've been spelling things as they sound. Naughty brain.

Anyhow, today I'm diverting a little from my travel series because as the title suggests I've been doing a lot of looking back lately. I know the importance of trying to live in the moment and most the time I do. I often surprise myself with how fast time can go when you feel it should be dragging from doing very little over and over. However it's inevitable that we'll look back on occasion. Thinking about our lives before M.E and how much things have changed.

Lately I've been thinking about life a year ago and although I still had M.E when I think back things were very different. Just over a year ago my friend gave birth to a gorgeous baby boy and myself and another friend went to visit. But the big thing was that I actually drove the 20 minutes there and back. That's the last time I drove. I wasn't originally supposed to drive, not wanting to use up too much energy and fearing not being well enough to drive back, but my friend got lost so I had to go find her and then she followed me there. And all was fine. I do miss driving and the freedom it brings but right now I'm sure I wouldn't have the strength to use the pedals or handbreak.

What's more, a year ago I actually went to a football match. A 25 minute car journey 25 minute train journey, a ride on the top deck of the soccer bus, waiting around before going to our seats, climbing the steep steps to our seats, sitting for 90 minites, celebrating goals and then the same journey home. How the heck did I do all that?

I remember I wasn't going to go too, as I was feeling rough and hadn't had much sleep. Again, what was I thinking? In truth I was thinking I needed to escape my thoughts. I'd found out a few days before that a friend was in an induced coma after developing double pneumonia (hmm no problems spelling that) and all I wanted to do was rush down there, 3 hours away. But obviously I couldn't. It was very frustrating. So I think I was running off adrenalin. It also helped that I rested in the car and train and used minfulness. The good news is that he came out of the coma on Easter Sunday, so we now call him Jesus, which he relishes.

Looking back it's crazy to think about doing those things but I did them. I was very much of the opinion of trying to do what I could and grabbing opportunities. Perhaps subscribing a little bit too much to the boom and bust theory but I didn't care. I simply wanted a normal life when I could. And now that my conditon has got worse and fibromyalgia has set in I'm glad I did them.

If I could recover my health to what it was a year ago, first off I'd be extatic, I have no doubt I would be a bit reckless. Make the most of it. It may not be good in the long run and could end up relapsing again but at least I'll have intetesting memories. Of course I would ensure I got plenty of rest too and not do too much knowing full well a relapse could happen but if there was an opportunity and I was well enough I'd grab it.

Now those opportunities might just be to get out for half an hour round the shops but they're still opportunities I grab when I can. I remember being on holiday just before my diagnosis and telling myself that although my life was about to dramatically change that if I could still steer it in a good direction and make new memories then I had to make the most of things when I could. I'd try my best to not just be defined by illness and keep developing the condidence I'd gained. That's when I took a dip in the sea from a boat (I didn't jump). I am terrified of deep water so I shocked myself with that one. But I was so proud of myself.

The one time it bit me in the ass (although the payback actually wasn't too crazy) was when I went horse riding on holiday. It was more than I was expecting, we did a lot more cantering than I could cope with and I was clinging on as I was so tired. My horse also hated this other horse who's rider kept trying to talk to me about Prince Harry getting naked (he was a German man that turned up in just speedos, sandals and a bumbag, that's a memory in it's self). I forgot just how much hard work horse riding was.

But again I did it. I know some people will say well if you did that you can't have had M.E and indeed it is a big difference in the scale of things now. M.E is a journey with peaks and troughs. Those things weren't easy, there was plenty of resting and payback. However memories were made at a time I thought I'd be very limited to making new and exciting ones. I'm so glad I did.

Of course now they might be more tame memories to make but with the help of my memory jar I'm appreciating them all the more. Life is not just about the big events it's about experiencing great friendships and love, laughing and learning.

So many people take their health for granted. It unlocks so many doors and opportunities. So although I know I would grab opportunities and be a bit reckless once I reduce the severity of M.E, I'll be sure to look after myself too, so not to come crashing down again.

If you had the chance to do something new or revisit something, what would it be?

A photo collage below of some of those memories mentioned in this post. Check out those bruises!

Sian

Some useful tips for travelling with a chronic illness: special assistance

<a href="http://www.bloglovin.com/blog/11331707/?claim=3bqgj73bhrh">Follow my blog with Bloglovin</a>

Apologies for the interval between this series of blog posts on travelling with a chronic illness. Perhaps now is a good time to start up again though, with the advent of Spring (yes I'm a comedienne) putting many people in the holiday mood, or more likely just the rubbish weather making us want to escape to the sun. I know that I certainly am desperate to jet off to my favourite Greek Haven.

Just to recap, I started this mini series of posts to give advice to help chronically ill people know that there are ways and means to travelling when you have an illness. Yes, it requires a lot of planning and consideration but it is possible. The first installment of this series on research, a very important stage of preparing to go away can be read here. My tips on finding travel insurance can be found here and a list of all the planning, a checklist of necessities that you will need to do here. You can read about my adventures abroad here, where I had a meltdown at the airport because I could literally not walk another step, so we had to ask for last minute assistance. This is also where I knew that when I got back from holiday I'd be needing a wheelchair to help me get around. Then the next time we went away I used prebooked special assistance, which you can read about here.

This post is dedicated to the mecca of spoonie travel and that is special assistance. It really does make all the difference. Special assistance is a service that helps those with a disability of any kind or those that cannot walk far through the airport and on the flight.

Airports are big, busy places, generally with lots of walking and waiting/ standing around. Cueing to check in, cueing at passport control, cueing at security, cueing for the toilets (ladies), cueing at the boarding gate, cueing on the plane as people stow their things. And the distance to your gate can be long. Therefore special assistane for anyone with limited mobility is ideal. 

I reccommend anyone with a chronic illness or disability, invisible, hearing or sight problems or otherwise, including learning or mental health difficulties consider adding special assistance when booking their flights. Say for instance you are travelling alone and you are hard of hearing then special assistance through the airport can help you get through the airport and onto the plane. A member of the team can help you at check in, security and th boarding gate. Also I have seen people who are very nervous about flying use the service so that they avoid cues getting onto the plane, which may bring on a panic attack. Special assistance through the airport is usually ran by a seperate company, however it must be reqested through the airline so that they have all the necessary information to keep you safe during the flight and arrange assistance on arrival at both airports. I will list the special assistance pages of a number of airlines at the end of this post. However when booking assistance I always reccomend phoning them as you can discuss your needs in more detail then. Phone numbers can be found on each page.

If you have mobility problems and use a walking stick or crutch then these can be taken onboard, they don't incurr any extra charges and don't count towards the number of carry on items you are allowed. The only rule is that they are scanned and that they do not obstuct the planes ailse once onboard. For wheelchair users or those that need to use one to cope with walking distance at the airport but do not have your own whelchair, then you can request one to help you through the airport. Sometimes if you only require assistance to your boarding gate a buggy may be used. You also have the option of someone taking you, which s good if you are travelling alone or one of the other members of your travel party can push you. Before boarding anyone using special assistance is asked to wait in a designated  area, where members of the special assitance company will come and collect you for boarding. 

Different airports and airlines have different boarding policies, some will board you first, others last, sometimes there is some cross over with other passengers so be careful and clear that once on board you do not want to be stuck in a cue as others stow their bags. This is why you are usually boarded first or last. To get onto the plane you have the option of walking up the steps if you are able to or to use a special lift. Once you're up you can then choose whether you walk to your seat or use a specialist wheelchair that will fit down the ailse. The lift will be used at the back of the plane for reference on how far you will have to your seat. Think about the size of the plane you are on. Last year I choose not to use the lift and was boarded at the front of the plane, our seats were towards to centre but it was still quite a walk, luckily by that point everyone was sat down and I had help of one of the ground crew to lean on. Funnily enough there had been some mix up between the airline and special assistance company, so the gate manager was wondering where the heck 7 passengers were and a wheelchair to go in the hold. A few more minutes and they probably would have had to have took our bags off the plane. I was just grateful that everyone else was sat down and the aisle was clear.

In terms of your seats again it varies between airlines. Some have specific seats that have moving armrests on the aisle seat for easy transfer and slightly more leg room. These seats will be reserved for you at no extra cost. When we flew out last year I was lucky as we got 2 rows between 4 of us, so I could stretch out my legs. it is dependant on how many passengers there are. Other airlines will allow you to book seats where you like, other than on an emergency exit for safety reasons. Of course it can also be dependant on what class you are flying.

I mentioned there about wheelchairs going into the hold. If you are taking your own wheelchair, which you can do free of charge then it needs to get tagged at check in. You can stay in it until you are on the plane and then it gets put in the hold. Once you arrive at your destination it will be taken out first and be ready for you to get into. If you are using the lift you will usually sit in one of the special assistance chairs until you are on the ground and can be transfered into your own chair. One thing to note if you are taking your own wheelchair is that if you have any tools for your chair tell security so that they can be put into your tray to be scanned. 

It is also possible to use a scooter but there are different rules about types and batteries, which can be read in each airlines policies below. The same applies for powered wheelchairs. Sometimes you will need to give dimensions when you book to assure there is room in the hold. All airlines are supposed to give an allowance of 2 pieces of special assistance equipment to go in the hold, unless the flight starts or ends in America in which case there is no limit.

There is a range of other in-flighg services available too depending on your airline and often destination. For example an onboard wheelchair for access to the toilet. On board oxygen. Specialist meals for different dietary requirements. Captioned entertainment on longer haul flights. Again it is always best to ring up the airlines special assistance helpline who can taylor requirements to your needs.

Here is a list of a number of airlines special assitance pages click on the names to be taken to the page.

Ryanair

easyjet

Virgin Atlantic

Thomon Holidays as Thomson is a holiday company they also have more information about assistance requirements needed at your resort or onboard one of their cruises.

British Airways

Stay tuned for the next installment, all about medication whilst travelling.

Please share your experiences if you have ever used special assitance to go abroad or have any more tips to share.

Sian x

The Princess and M.E and The Big Sleep For M.E

Sleeping Beauty photo source: Pinterest

I bet you thought that your only chance of becoming a Princess was to bump into Prince Harry in a London nightclub (chance would be a fine thing) or to wait 17 years until Prince George comes of age. Well think again! As part of M.E awareness day on May 12th and the following week, there are so many events happening to help raise awareness and fundraise for M.E charities. One of which is The Big Sleep For M.E (the link will take you to their website
.)

The Big Sleep is a fundraising event that is inclusive for severe sufferers, that are housebound or bedbound. Because all you need to do is go about your usual day and have a big sleep if you like all in the name of raising awareness. Show people what living with M.E is really like and help raise the illness's profile as well as raise funds for much needed research and a centre of excellence. See my previous post for more information on why this is so important to us sufferers and what The Big Sleep will help fund.

On May 12th and the following week there will be all kinds of sleep related events, some people will go to work in their pyjamas, take part in sleep walks, sleep walkies where you can get your dos involved. The Big Sleep organisers will be doing a prize giveaway, as well as an online disco. I wonder if they will have a chill out music session, like in Ibiza? Some lovely relaxing tunes to get us all calm, ready for sleep.

So where does the becoming a Princess come into it? Well myself and other M.E sufferers on Twitter are going to be becoming Princesses for the day, to help raise awareness and hopefully rise some funds. Why Princesses? Well it came about through a bunch of Twitter M.E spoonies saying that we were the real Sleeping Beauties (we're not vain honest, and most of the time we can look how we feel) and also that instead of having a pea in our bed causing discomfort we have M.E. Although those with fibromyalgia too will know that a pea in your bed (yes, go on laugh) could actually cause you pain. And well because those battling chronic illness day in, day out deserve to be a Princess every now and then. Heck, we're demanding enough. Can you get this for me? Can you help me out of bed? May I have a straw for my drink? So the idea of dressing up as Princesses was born and it has sky rocketed since.

Please note that you don't have to have M.E to join in, everyone is welcome. M.E isn't prejudiced and neither are we. So anyone wishing to join us and become a Princess for the day (go on convince your bosses) and for all the Princesses already aboard the carriage here is what you need to do:

1) Contact me on here or on Twitter @sianwootton

2) The group The Princess and M.E is already registered with The big Sleep but if you want to register separately and be in with a chance of winning a Big Sleep Mascot Bear then you can do so here. Fill in the form and state that you are part of Team Princess. #teamprincess #theprincessandME

3) If you want to have some printable materials advertising The Big Sleep then download them here. This includes logo's suitable for printing or use on the internet, school leaflets, sponsorship forms, parental consent form for photos of children and fundraising and information pack.

4) We have set up a just giving team for fundraising here. As you can see their are 5 princesses already but some pages have more than one name, for those that don't want to set up an individual account, or find it too much. So you can either ask to be put onto one of the already set up pages or if you already have a just giving account you can click on 'join in the team' on our Princess page, just a note to say this only shows up when using the full version of the site. Also note that your chosen charity is set to Invest in ME. If you want to create a new page then use this link and again choose Invest in ME as your charity.

5) On May 12th (although some people are doing it on the 11th due to work) dress up as a Princess, or a Khaleesi if you wish. Those that are feeling too bad on the day please don't push yourselves too much. Put up logos if you have printed them from the toolkit and simply post a photograph of yourself to social media, stating why you are dressed as a Princess. If you're using Twitter put @thebigsleepforme in your tweet or #theprincessandME. You can also Facebook at The Big Sleep Facebook page or on this blog's Facebook page. Or instagram using hashtags #spoonie #MEcfs #myalgicencephalomylitis #theprincessandME #thebigsleepforME

6) Keep an eye out on Twitter and Facebook for different giveaways and competitions, vintage wedding and homes uk have kindly sponsored the event and there are some other sparkly businesses involved too like Tinkerella loubella, they make some great personalised wine glasses and even a sign that says 'shhh Princess Sleeping', oh how apt! There's also Bling Mama, who have some amazingly sparkly shoes, check out the picture of the cinderella shoes below!

If you would like to make a donation use this just giving link. Donate to anyone of the Princesses on there and you will be entered into a prize draw to win a cosmetics bundle from e.l.f cosmetics worth £50 or a Hug Box, a box full of chocolates and sweets. See photo below. Even a retweet or a mention is great as it helps us raise more awareness.

I am also making some jewellery with half the proceeds going to the just giving page, and again anyone purchasing one will be entered into the prize draws. I've posted a photo below with what I've mamaged so far but I will do a separate blog post soon.

Help us spread awareness of us real Sleeping Beauties and believe me all our Princesses are beautiful people, despite battling this disabling illness. The film versions of Sleeping Beauty might have waltzed off into the sunset with Prince Charming but after our Big Sleep Event our big hope is that more people know about the seriousness of M.E and we are a few steps closer to getting much needed research to help us find a cure. That will be our Happy Ever After.

I wouldn't say no to a Prince Charming either

Many thanks

Sian x