Highlights of 2015

Hi everyone! Firstly apologies things have been a bit quiet on the blogging front recently. But don't worry it's not due to being too ill to do so. In fact I've just been enjoying squeezing as much as possible out of life recently. Focusing on Christmas, family and friends. And I've been feeling very grateful lately and full of hope and positivity, which just feels amazing in itself.

Positivity and gratitude have been things I've really worked on in recent years and although at times it can be difficult to do, especially with a chronic illness, there are plenty of ways and means to at least try. Trying in itself is a great thing. Of course there have been plenty of times this year where I have felt down, alone and left out but trying to be as positive as possible has been a highlight this year, for sure. Whilst I'm on this topic, I want to mention the wonderful Meg Says' blogpost on how she keeps positive living with a chronic illness, which you can read here. It is a thoroughly recommended read by such a ray of sunshine.

Continuing the positivity theme, today's post is my highlights of 2015. "Wow! What a year!" Also where on earth did the time go?

Back in February my Mum and I went on a long weekend to Brussels to visit family, and to eat waffles and chocolate of course. I had not been on a city break since I'd been ill and had my fears about doing so but I coped really well and in the process had a lot of fun. You can read more about my trip here.

In April I managed to meet up with one of my dearest friends, Ali and her family for a weekend. We have met up a couple of times before, having originally got to know eachother online through the chonic illness community and finding we shared much more than an illness. We speak every day but spending time with her in person is extra special, especially as it takes a lot for both of us. But time spent with this sparkley princess is well worth it and I am very thankful to have her and her beautiful daughter in my life. We both did a blogpost about our weekend as part of ME awareness week, which you can read here

On May 12th ME awareness day myself and several other wonderful ladies and one equally wonderful man dressed up as Princesses (or a Queen in my case) to raise awareness as we took part in another The Princesses and ME event. This year I am so proud of the fact that Team Princess fundraised for every single ME charity in the UK and one in Australia. I really wanted to expand the event this year and to be sure we were championing the cause as a whole, from the charities that raise money for research, to those that offer invalueable support for sufferers and their families. Together we raised £6288 and in the 2 years this event has been running we have raised over £10,000. I am so grateful to all that take part each year, who give it their all even though what they have to give might not seem a lot. They're true princesses. You can read more about The Princesses and M.E event here.

I feel incredibley lucky to have received a Smile for ME gift this year. Smile for ME is actually a small charity that we helped during our Princesses and M.E event. They send gifts to people with ME or their carers that might be in need of a smile and a pick me up when things get particularly tough. I am in awe of the work that Gracey and Alice, the charity's founders, put in to this despite suffering with ME themselves. Their wish to make others happy is so simple yet so important. Kindness often gets overlooked in this world yet it is one of the greatest gifts that you can give someone. You can find out more about this charity at www.smileforme.org.uk

Also in May I was back in the theatre to watch Pasha Kovalev, from Strictly Come Dancing in his own dance show. It was a great show and made me feel so positive and humble. I also got to meet him and the other dancers in the show afterwards, which left me literally speechless even though I have met him before. He is just so handsome and such a gentleman. I'm gradually reintroducing myself to the theatre. As I used to work in theatre it's been something that I have avoided for more emotional reasons as well as the physical ones. Dance shows have been an easy reintroduction as they are a bit more distant to what I would be doing and of course Pasha helps. I look forward though to hopefully enjoying more theatre in 2016.

In July I went on holiday to Zante. As many of you will know I've been on holiday a few times since getting ill but this again felt like a challenge. Going away is always a challenge, however another big factor here was that we travelled to somewhere new. I achieved a lot on this holiday and was made up with the amount of walking I managed. Needing a wheelchair at times got me down whilst in Zante, more than it has before, mainly because of accessibility and being limited. As well as at times feeling like you are known more as the lady in the wheelchair rather than just Sian. But overall I am really glad we tried somewhere new and got to see a bit more of the world. I am still trying my best to give myself as much life experience as possible, despite my condition. You can read a bit more about my holiday here.

This could well be the highlight of my year, or actually much longer than that. I was incredibley lucky to win tickets to be in the audience of Strictly Come Dancing, back in September. I still can't quite believe it happened, it's very surreal but I had the most wonderful time. I love Strictly and getting to see it filmed live was just incredible. Honestly I struggle to find the words to describe the experience, I did blog about my Strictly adventure though where I try to put it into words, which you can read here and here. Also I can confirm that Gleb is just as hot in real life.

On the day of my birthday I was fairly unwell and completely bedbound but I wasn't going to let that get me down. I had had a lovely weekend seeing family and was boosted full of happiness by lots of lovely birthday messages from friends. The postman had been kept very busy bringing cards and parcels, which I managed to open a few of in the evening after the sugar rush from my amazing birthday cake from Sponge. When you have a cake like that it's bound to turn a frown upside down. I felt very blessed to recieve such wonderful gifts and have such gems for friends.

Christmas this year was full of loveliness spent with family. Being surrounded by those you love most and who support you unconditionally is the best. I was spoilt with lovely gifts and cards from friends and family. For me Christmas is a time of giving and I loved planning the gifts I got for people. I will speak a bit more about some of the gifts in my next post. When you hear that they have evoked such emotion and happiness it's heart warming. There is no greater feeling than that of boosting others up and making them feel happy. The star on top of my Christmas was the fact that my health held up really well and allowed me to achieve more than I ever could have hoped for. And so of course I made the most of that wonderful silver lining.

One thing that I am particularly proud of this year is the way in which I have 'made a stand' and said I am not going to put up with feeling neglected (medically speaking) anymore. That it was ridiculous to be suffering so much and not even going to see my doctor. They can't even try to help if they don't know how badly you are suffering. So I am so glad that I took my health into my own hands in a way. 2016 promises a lot on the medical front, which will be tough but this is one of the most important 'projects' I will ever undertake and by gum is it worth it.

The best thing about this year though has not been an event or something physical but the people that I have shared my year with. I know that's so soppy. But I feel very blessed to have family and friends to share these moments with. Who physically care for me and make all the events possible or even just considerable. Who hold my hand through the bad times and clap their hands through the good times. They celebrate my achievements without judgement and with genuine compassion. Most of all they make this world less lonely and fill it with smiles and laughter. They make me happy and they make me feel safe. There are not enough words for how much I love them. Thank you everyone, you're my heroes.

So far his blogpost has included some of my biggest highlights scale wise and when I wee them all put together it really makes me feel quite staggered and amazed by what I have achieved this year. For many it may even look like I'm not all that unwell. Non of it has been easy by any means and my health has deteriorated even more but I refuse to let it win. I refuse to not be happy and not at least try to live as much of a life as I can, within my capabilities.

There have been many other highlights that may be considered smaller but to me they are still very big achievements and have a definite space in my heart. And I couldn't write a highlights post without including them.

* Having my first stand up shower in 3 years

* Managing to walk from the car to inside a restaurant

* Making Rocky Roads and actually going to the shop to get ingredients

* Managing a 6 hour road trip

* Being able to wrap Christmas presents

* Each meal I have managed to have out

* The visits to family

* Every single laugh and smile (cheesey I know)

And there is probably many more. 2016 will bring plenty of new challenges and I will need to dig deep and give as much grit and determination as I can give. But I can do that. I have to do that. Because there is the promise of better days and happiness.

Happy New Year to you all! I hope it is full of beautiful moments that you cherish, smiles and laughter. Hold on to each one and give it a space in your heart then you'll always have so much to be thankful for. Remember, you've got this! 

Sian 

xx

Spoonie Christmas Gift Guide

Hi everyone!

I did a similar post to this last year and actually a lot of people found it really useful. When opening some of my gifts I could clearly see they had paid attention. Some even said thanks for the ideas. So bring on a post where I shall be dropping some very big hints haha (ahem Pasha Kovalev please!). I did contemplate whether or not to create a gift guide again for this year but seen as I seem to have mistakingly deleted last years post that pushed me into deciding that I would create another for this year. Plus many of the items on last years might not have been available anymore. Having said that I want to point out that these are all just gift ideas, and the photos and links are mainly for reference. Click the title next to each number to be directed to the item. So for example if you see an eye mask or pair of pyjamas that you feel are more suited to the person you are buying for then of course opt for those ones. But hopefully this gift guide will help you to purchase a lovely gift that will mean a lot to the spoonie in your life and give you an idea what to look for. 

* A Spoonie is a nickname of sorts for someone that suffers from a chronic illness. In reference to Christine Miserandino's Spoon theory.

* All photos are taken from the websites referenced

Spoonie Essentials

1. Kindle Perfect if they enjoy reading but struggle to manage books. Kindles are lightweight and the touch screen ones make them even easier to use.

2. Kindle Fire  All the joy of a kindle but with more apps and internet access. As well as letting you watch films. Great all in one. If you want one lightweight device for multiple purposes.

3.  Mug All female spoonies are wonder women. But any mug with a great saying or cute design that matches their personality or interests is a great gift and helps bring a little smile to their day.

4. lunch boxes Great for keeping snacks in their room so they'e easily accessible and fresh. 

5.  Electric Heat pad Perfect for keeping warm and helping ease pain. Without the hassle of having to refill a hot water bottle. Plus you can lie on this to help soothe back pain. As well as adjust the heat setting. You can read my post on my Dreamland heat pad here.

6.  Starbucks Cocoa Duo As we can't always get out, being able to have our favourite hot drinks at home is a simple pleasure.

7. Book of Mindfulness Mindfulness can be a great technique in helping promote calm and acceptance. It can really help you cope with stress.

8. Eye Mask Great for light sensitivity and helping to get promote sleep. A mask with a funny message on it, is a fun touch too. Opt for one with a better strap, the ones with elastic that look like a hair bobble can be uncomfortable and cause pain.

9. Snack box Snacks are always handy, especially if we are unable to use the kitchen. This one is a vegan one but there are many to choose from, from retro sweets to gluten free. And these boxes are great for introducing us to new snack ideas. 

10. Hot water bottle As great as heat pads are sometimes you still need a hot water bottle too. Especially if you're on the move. 

11. This Works dream team set or bigger version here A lavendar spray and roll on are great for helping to promote calm and sleep. As well as help headaches. The mini ones are perfect for travelling too.

12. Colouring Book Colouring books are the latest trend in mindfulnes and calming techniques. There are a a whole range at The Works from animals to Game of Thrones and some come as a set with pens, find them here

1. Notebooks Whether we need to write down our symptoms or remind ourselves to do something notebooks are very useful. Especially if they're a blogger too.

2. Diary To help organize and remember all the appointments etc. Brain fog can't be trusted.

3. Line a day diary This kind of diary can really help you see how far you have come over the years.

4. Twinings tea set If they are a tea fan getting them a selection of their favourites is a lovely treat.

5. Big bag Whenever we leave the house we usually need to take a lot with us so a big bag is a must. 

6. Spoons Because spoons are always needed. Especially if there's dessert.

7. Wheat wrap Again in addition to a heat pad, these microwaveable wraps are great for neck pain or for lying on. And their lavendar smell can help relaxation too.

8. Lap tray Great for using your laptop in bed or even eating your meals in bed without burning your legs. Or making a mess!

Pampering gifts

Everyone deserves a good pamper, especially when you feel rubbish. Again think about their capabilities, if they can have a bath or a shower. Also think about their skin type. A lot of spoonie's will get dry skin stuck indoors a lot or have sensitive skin so select products with this in mind. 

1.  Soap and Glory Belle of the Ball set

2.  Burts Bees Kit

3. Simple gift of kindness mini gift set

4.  Zoella Beauty Cosy Toesy set Plus you get a cosy pair of socks. A spoonie must.

5.  Aromatherapy Associates gift set

6.  Bath Salts

7. Palmers Gift Set

8.  Burts Bees Tips and Toes set

Crafty gifts

If the spoonie in your life enjoys getting their craft on or would like to take up a new hobby, then here's some kits to help them create some masterpieces.

1. Jewellery making set

2. Wrap bracelet set

3. Kirstie Allsopp button jewellery kit

4. Message in a bottle necklace kit

5. Coin purse kit

6. Felt penguin sewing kit

7.  Owl family knitting kit

8. Modern quote cross stitch kit

Alternatively if you enjoy crafts then making them a personalised gift, made especially for them is really meaningful.

Nightwear

For people that spend a lot of time in bed or resting you can't go far wrong with nightwear.

1. Pyjama set

2. Slogan pyjama top

3.  Cath Kidston Christmas pyjama top

4. Dressing Gown

5. Cuffed pyjama bottoms

6. Slippers

7. Take a nap bedding

8. Cosy Blanket

Vouchers

Sometimes vouchers really are the best way to go. Especially if you are unsure what they would like or need. Obviously the type of voucher can depend on whether they are housebound etc. Not much use in a spa voucher if they can't leave the house at all. Here's some suggestions:

Amazon, Kindle and Audible

Itunes

Netflix

Magazine Subscriptions

Snack boxes

 Graze

 Costa

Restaurant vouchers

Beauty boxes

 My Little Box

 Birchbox

Feel Unique

Boots

Especially for Spoonies

I also wanted to point you in the direction of two fantastic small businesses that are ran by two chronically ill friends of mine, that specialise in great gifts for spoonies or in fact any one in need of some tlc and a pick me up. But you also have the added perk of supporting small businesses and gifts that are more personal and meaningful.

 Spoonie Survival Kits

Each kit contains items to make the recipient smile and cope a little easier with the onslaught of chronic illness. Proceeds also go towards ME charities. 

Bear Hugs Gifts

There are several different 'hugs' to receive from colouring to a movie night theme. So you can tailor your hug to the recipient.

Or you can make up your own personalised hampers full of their favourite things or on a specific theme. Below I've shown some ideas from Pinterest:

Source: Pinterest

Source: Pintetest

Wantfeed

Alternatively you can always set up a wantfeed account, which is an online wish list where you can list all the things you want from hundreds of different stores. That way people know what you would really want. You can even make money if someone buys that item by clicking buy and using the unique link. You can make separate lists for different ocassions like birthdays or Christmas. Set up a wanfeed here. You can see my wantfeed on the following link http://wantfeed.com/Queenie/wants

Finally I just want to make a quick note about wrapping your gifts. Take into consideration that some spoonies will struggle to open gifts. Whether they have painful hands or wrists or simply don't have the strength or energy. So consider using a gift box or bag. Or if you do wrap go easy on the cellotape, or use cheaper paper that's thinner and easier to rip. 

I hope this post has been useful and that it's given you some gift ideas. Spoonies be sure to share this post if you want to give friends and family some hints. 

Sian 

Spoonie Travel Interview with Lisa

Illness/ disability: ME

Destination: Cala Galdana, Menorca

Who did you travel with?

 My husband, Stuart

What airline did you use?

 Easyjet. We book a package deal with them on easyjetholidays

First of all, how was your holiday?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What items would you not travel without?

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

What other disability/ illness essentials do you pack?

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

What are your favourite holiday beauty products?

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

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

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

How are you after the holiday?

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

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

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

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

When things go wrong

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

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

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

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

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

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

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

Hope you're all having a better time.

Sian X

Related post: What an M.E crash is like

Strictly on wheels: Strictly Audience Experience from disabilty/ chronic illness perspective

copyright: Sian Wootton
In the queue to get our tickets validated

Today's post is the second on my Strictly audience experience, but today I'm going to talk in more detail about the experience from a disability/ chronic illness point of view. For more of an overview of the experience take a read of my first post Strictly Audience Experience if you have not done so already. To set the scene, as it were for this post I want to refer back to something I said in my post Taking Chances, which was "life is still for living. Each opportunity is a gift. A chance to have something more than a closed off world of drawn curtains, high pain levels and mobility aids. Where all you see in a week is 2 or 3 people and generally that's just to give you some kind of assistance. More than ever lately I have felt the heartache of how small my world has become. How separate I feel from the real world, the world just behind my closed blinds or just downstairs. I spend so much time listening to all that's going on and not being able to be a part of it. Yet my resolve to try and make this life as good as it can possibly be for myself is at the most determined it's ever been." For me applying for Strictly tickets was part of this. I am such a big fan and it always makes me smile. I'd often watch and wish I was there so putting myself in with a chance of being there was an easy decision. To then find out I had won tickets and was one in 4.5 million was very exciting. The excitement actually drained me quite badly but that's ok, getting to be that excited about something is a big deal and quite precious.

 Of course when you need to start thinking about the how to's, things get a little more complicated. Just leaving the house with a disability/ chronic illness can be a big palaver. But with plenty of planning it can all come together. And with experience and common sense you have a good understanding of the precautions you need to take. You just have to hope your health holds up enough for you to actually make it. As soon as we found out we had tickets we looked into hotels to stay the night before the show and after the show to break up the trip a bit and make it more manageable. Especially given we had to travel down from North Wales and needed to be there early the morning of the show to get our tickets validated. Luckily we found the Ibis Borehamwood, which is really close to the studios and so we booked that straight away. I then started to look into trains, however having never used the train with my wheelchair and not really feeling very confident in doing so given the greater margin for things to go wrong we later decided that Mum would drive us down instead. It just seemed so much easier than getting a lift to the train station, getting one train, then another train, hoping assistance was there and they had the ramps (even though we would have prebooked), then finding a taxi that would take my chair. As well as have to struggle with our luggage. And have to book each part of the journey separately rather than purchase one ticket. It's all a bit much. At least with driving we could take our time, stop as much as we needed and know that we could just pack up the car and go. We weren't relying on several other factors that could easily go wrong. It also meant we could pack as much as we wanted and not worry about creasing our Strictly glam outfits haha. Plus the added joy of heated seats, which are ideal for back pain. Going in the car certainly did make a big difference and although I couldn't switch off too much as chief navigator, it was certainly less stressful, which meant I wasn't wasting precious energy that I needed to pull me through the event. As I was going to need every last scrap of it. To learn a bit more about the mechanics of energy and it's role in M.E sufferers and how we try to manage it for activity/ events take a read of my post Let me put this in a way you might understand.

 A few days before I did start to panic because I caught a cold that left me feeling quite rotten. A cold on its own might not be a lot but a cold on top of a chronic illness can be very draining and make you much worse. I was also miserable that I might have to miss out. Cue lots of hot blackcurrant, steam, vicks, olbas oil and vitamin C and luckily it held off enough to let me go. It was funny though because as soon as we got back in our hotel room I was coughing and hoarse again. I do accredit some of the hoarseness to cheering though of course. Thank you to the cold gods or the Strictly gods, whichever of you it was.

So moving on to the more interesting bits. I did think about just sending my Mum to get the tickets validated in the morning so that I could stay in the warm and again make sure I saved up energy. Especially after the what ended up as a 6 hour drive and not a great deal of sleep. However I wanted to get the full experience of this opportunity and thankfully I didn't feel too horrific that morning. So I wrapped up in a blanket to help keep my legs warm (I find they get cold very easily with not moving and then that can cause pain) we both joined the queue to get our tickets validated. Luckily the weather was dry and not too cold. If it had been raining or really cold I probably would have stayed at the hotel, not wanting to make myself anymore unwell and potentially not be well enough to make the show. It felt nice to be in company and chat to people that love Strictly just as much as I do. This again is something so small but it can mean a lot when you're used to only close family.

We were told that we needed to come back at 5pm rather than the 3pm it stated on our ticket, which was good as it meant a little longer to rest and recover from the morning  before the show. Cue lots of lying very still. One achievement that could easily have got lost in all the hype was that I managed to take my first stand up shower in about 3 years. Yes it was only 2 minutes, it made me pretty dizzy and my Mum was on stand by but I did it. Things like this might seem small but they are big achievements when you haven't been able to do them in years. All glammed up, including my blinged up wheelchair we arrived back at the studios for 5pm and were told to join the front of the queue so that they could get anyone in chairs or others with reduced mobility into the marquee first and seated at the front near the entrance to the studio. Making it easier for us to have access into the studio later on and not be fighting through the crowd. This was one thing that I was a bit worried about before going, getting through crowds is never easy when you're not at people's eye level. I had visions of struggling to get through the crowd of people but luckily good foresight on their part meant this was avoided. I do love that level of organisation and planning, the stage manager in me was very pleased. Even when I needed to get back to our space in the marquee after going to the toilet (the swankiest disabled loo I have ever been in) the staff helped to clear a path for us. It does get you a few stares or sympathetic looks and can make you feel a bit awkward, however it's much better than having to fight to be heard and seen whilst avoiding laddering anyones tights.

Speaking of the staff I really have to commend them, they made the whole atmosphere of being there even more of a pleasant experience. On a practical level they were really helpful, holding doors open so we didn't have to struggle with the door and ramp. Helping us up and down the ramps, in particular the steep ones and at the end of the time when they had got a bit slippy. And it all seemed very instinctual. We never had to ask for help. Someone always just appeared and helped with a smile on their face. From holding the toilet door open as Mum wheeled me up the ramp to helping us down the slippy ramp at the end of the night. I felt so looked after, but never patronized or made to feel like a problem, as can sometimes be the case. It was nice to feel like a person. Whatever training they have in place regarding persons with restricted mobility it's working.

They were very aware to communicate often and to accomodate the different needs that everyone had. The audience manager sought out those of us in wheelchairs and asked whether or not we could transfer into a normal seat to know where to seat us. She then said that we would be one of the first to enter the studio to get us seated safely and at roughly what time. Other members of staff spoke to those with sticks and other mobility aids about their needs and capabilities to know where best to seat them, ensuring their comfort. And they also made sure any pregnant women had a seat by the doors too. One woman looked in so much pain I was convinced she'd go into labour. What a birth story that would have been. This discussion I believe is important as it shows an understanding that everyone is an individual with different needs. But it's also done in a discreet way too, which I found very respectful. 

 I did find that the music in the marquee was too loud. A lot of people struggled to be heard over it and I know my Mum who wears a hearing aid and another person that I was speaking to that also had a hearing aid found it hard to know what people were saying because of the background noise. I know we were about to go listen to a live band but as I can find noise quite draining I felt very conscious that it could drain me of the energy and concentration that I really needed for the main event.

 



Copyright: Sian Wootton
with my validated tickets, resting before the show



When they bought us into the studio I had such a wave of nostalgia. Seeing the props and the white gaffa tape marking the walkways reminded me so much of my stage management days, pre illness. From the marks on the dance floor to the extensive lighting rig and fly tower it all made me gulp in reminiscence. It bought back how much I miss working and all that I'm missing out on. But rather than get upset I decided to use that feeling to make me even more determined and dare to dream again that things one day might be different. As well as simply getting to sit in such a great seat getting to revel in the behind the scenes of one of my favourite shows and feeling very lucky that I got the chance to experience that. That in itself is beyond compare. Nevermind getting that opportunity when you face so much hardship.

We were given plenty of time and not rushed to transfer into our seats and my Mum showed them how to collapse my wheelchair properly. I'm not sure if they needed to do so or not because I'm not sure where they stored our wheelchairs after we took our seats. But they were respectful that they were a piece of valuable equipment and treated them as such. Once we were seated one of the members of staff also let us know where he'd be should we need anything or need to leave the studio.

The one other thing I found difficult was that the chair was uncomfortable. I really should have thought on and kept my cushion from my wheelchair but I wasn't really thinking practically at that point. My head was just screaming "Aahhh you're in the Strictly studio." Plus I should have taken my painkillers a bit sooner rather than worry about getting them out of my bag shortly before the show began and I suddenly thought "ouch I'm in a lot of pain" and "doh I've not had my pain killers." Taking my tens machine with me would have been a good idea too. By the end of the show I was in a fair amount of agony, I could barely get out of my seat and back into my wheelchair. But I did have help. I did ask if Pasha could come lift me into my chair but sadly this didn't happen.

 It took a while to get off to sleep that night but this was more from trying to wind down as I just felt so ecstatic. I was high on life. Like how has this just happened to me? This is so very far from my everyday life. I just feel very lucky that my health held up enough to let me do this. Yes it hurt a lot afterwards and I was very exhausted. It took two weeks to fully recover. However it was a happy two weeks spent reminiscing. It made the pain and fatigue much more manageable and worthwhile. I know a lot of people think it's cruel to suffer so much for having fun or trying to do something normal (not that this was normal) but I don't mind too much as I can justify it. It still hasn't sank in that it actually happened. No matter how many times I have rewatched that episode. But I am beyond grateful that it did. I got the chance to make a dream a reality. That's priceless. And no matter what the road ahead has in store I'll always have that. Sorry I'm being so sappy.

Again I want to say a big thank you to everyone that works at BBC shows and tours for helping make the experience even more joyful and stress free. You have a great team that you should feel very proud of. They could easily get overshadowed by the celebs and glitz and glamour but they really do add to the experience and make a big difference. I actually want to go work for them if I ever get this illness under control.

Sian X

Strictly Audience Experience

Copyright; Sian Wootton
From l-r Front entrance of Elstree Studios, our tickets validated with our sticker number, Strictly glammed up, in the queue waiting for our tickets to be validated, the queue as we left at around 9.30am, us on the television

Funnily I'm still struggling to find the words to fully describe this experience, but I will try for blogging purposes. And there is just so much to talk about. So much, I'm going to split it into two blog posts, but this is still going to be quite a long one. One post will be on the audience experience, which will hopefully be of use to any lucky folk that manage to get tickets. Or anyone that wants to learn a bit more about behind the scenes of one of our biggest television shows. Then I will do a separate one on the experience from a disability/ chronic illness perspective. So as not to bore the healthy folk hehe. Also apologies for just the one collage of photos the computer I edit on is in for repairs, so I could only do the one.

I signed up for Strictly tickets in late August. I think it was the day they opened the application. You can apply for as many dates as possible, including Blackpool but only once and only a maximum of 2 tickets per household. It also comes up with the option to put in whether you have access needs and what you need. You should then get an email to say you have applied and when you should hear back. Generally it's 2 weeks before the date. I applied for most dates. And was lucky enough to win tickets to the first date I applied for, which was 25th September. The first of the live shows where the celebrities dance for the first time. This show is a little different to usual as not all the couples danced and there was also no elimination show, so the experience is a little different to the normal Strictly experience. I heard I'd got tickets on 11th September, firstly via text message then email, which had an attachment with the tickets to print out.

On the ticket it explains the dress code as glamorous, strictly no jeans, and what you can and can't bring into the studio with you. It also explains that the ticket you recieve via email does not guarantee you access. You need to get them validated on the day. This is because they send out more tickets than there are seats available, in order to guarantee a full studio, as they have a fair amount of no shows. I'm not sure of the actual figures, however on that date there were around 500 audience plus friends and family. All in all they process 650 people. As there was only 6 competing couples dancing on that date I'm not sure how this is reflected in the normal ratio of public/guest tickets or whether the numbers are the same. On the email print out it explains that they will start validating tickets from 9am and access on site is from 3pm. It's important to read between the lines here, and know that getting your ticket validated is the only way to guarantee access. Which means queuing up in the morning. If you look online you'll find varying information about what time to start queuing and I'm sure it changes from date to date. Especially from year to year, and panic builds that last year the person queing from 7am got tickets 50 and 51 and the year later those in the queue from 7am getting tickets 100 and 101. That's just an example don't take those numbers as gold. The best I can do is share what happened on the day we went, which I will in a bit. Then it's down to everyone what time they decide they want to queue from.

As we were travelling down from Wales, we decided to travel down the day before and stop over night near the studios. We got a room in the Ibis Borehamwood, which is the closest hotel to the studios at only a five minute walk. You simply exit the front of the hotel, turn right, cross over at the pelican crossing and take the next left. Go past the visitor entrance through a small car park and ahead you'll see a field with a path on which people queue. The Ibis is a nice enough hotel, with plenty of parking as it backs onto the civic centre car park. A lot of people use this car park for the studios. Hotel guests can park there for free with a voucher from reception.  Breakfast is £6.50 for continental and £8.50 for cooked (and continental) but wasn't really worth it. To be honest we probably should have bought something with us. On a practical level you can probably get in the queue quicker too.

We got into the queue, just after 8am. I was quite shocked by how many people were in the queue already. There were people sitting in camp chairs, wrapped up in blankets, even some in those foil blankets. All to the annoyance of the parents doing the school run. Apparently those at the very front that looked liked they had camped overnight had queued since 2am! Luckily it was quite a nice day and most importantly dry. I think they should put a porch style roof over the walk way, as I imagine if it was pouring down it would be quite hard, especially later on in your Strictly glam. Although it does say on the tickets to be prepared for the elements. The atmosphere in the queue is fun and it's great to talk all things Strictly. There is a Costa Coffee in the Tesco nearby (don't ask me exactly where, as I don't know) if one of you wants to go get a hot drink. There is also some bushes if you really do need to go to the loo. Hehe. Just after 9am the validation staff came out. There were two people scanning the tickets and giving out number stickers and a man with a mic, who came along and explained what was going to happen. He does repeat it at different points in the queue but do ask questions too as you go passed should you wish. As the show that night didn't go live until 9pm he explained that even though it said on our ticket access on site is from 3pm that we could actually return at 5pm. The queue then moves quite quickly. I think those arriving around 10am would get a totally false sense of how many people had queued, until they saw their sticker number. We got sticker numbers 207 and 208. I later spoke to someone that queued from 10am and they were sat on the upper level opposite the Clauditorium. Being in a wheelchair our sticker numbers didn't matter so much in terms of seating but it was still important we got them and our tickets validated to guarantee entry.

We were back in our hotel room around 9.45am, and had the rest of the day to relax and then get Strictly glammed up. Around 2.30pm we went downstairs to the bar and ordered food from the snack menu, which is available 24 hours so could come in handy for any after show munchies. It's not so much a 'snack' menu either, with toasties, pizzas, mac and cheese and a green Thai curry on the menu. However this was good for us as it meant we could have a big lunch to help see us through the evening. We then started to get ready. We decided to leave our mobiles at the hotel, given you can't take them into the studios and I'd heard the queue to get them back at the end of the night can be quite long. Although of course if you are driving or on the train then it may be best to hand it in.

We arrived back at the visitors entrance at 5pm and there was a long queue outside again. With being in a wheelchair we were told to go to the front, so that they could get those with mobility issues into the marquee safely and sat down at the front. So I can't really tell you how long you're likely to be queing. As soon as you're inside the marquee, you hand in your phone and also go through security. Once inside there's lots of seating where you can sit and watch tv and chat to other Strictly fanatics, that still can't quite believe their luck. Or admire everyones outfits. There's a cloakroom where they recommend you leave your coats as having them on the back of your seat will look quite messy. This is the BBC darlings. The queue to get your coats back is not long especially compared to the queue to get phones back. There's a bar, and a separate stand for tea and coffee. You can drink in the marquee but once you go into the studio you can only take water with a screw top in. Outside the marquee, are some rather plush portaloos. The hosts on the mic will tell you countless times to use them before you go into the into the studio. As once you're in there, there's not much chance to go. Also a new addition for this year is a photo booth, which has a Strictly background and where you can pose for 4 photos with various props, including the scoring paddles. You get 2 free printouts. I think this is a great touch, as a little extra souvenier to remember your time there. Especially as you're not allowed to take your own photographs. I tried to be too posey and just ended up looking like Claudia trying to read the autocue.

We were in the marquee till after 7pm. The hosts kept us up to date at all times, building up the excitement, joking and sharing some Strictly trivia. They liked to remind everyone that this year 4.5 million people had applied for tickets, and so we were very lucky. Just after 7pm once everyone was in and the studio was clear of people rehearsing, they announced the first lot of numbers, which were 1-24. The host joked that these were the people that had been queing up for 3 weeks. After them they took in our group of those in wheelchairs and less mobile. You enter into the studio from the back, so facing the band. It was exciting to see some of the props and wonder who would be using them. When I saw the giant storm cloud I got rather giddy that Carol and Pasha would be dancing that night. I'm not sure if the memory of Pasha on that cloud will ever leave me. As we came out of backstage and we were out on the Strictly set, it was such a bizzare moment. A bit like finding Narnia at the back of your wardrobe, even though you know what's coming. It's rather surreal and much bigger than expected. The first group of people were sat at the end of the dance floor, facing the band and the main staircase. At first I was quite confused as I expected our group to be sat there. When I'd asked in the morning that is what they had said. Also I thought that with those ticket numbers they would be sat on Bruno's side of the judges table and most likely to be on the television. To add to my disbelief they then wheeled us over to the chairs to Craig's side of the judges table and said we could transfer into them. I thought they were joking, especially as they said the front row. When I was safely in the chair I felt my tummy go "oh heck." I'm not sure how many times me and my Mum said no in utter disbelief. Then I had a moment of "I wish I had my phone, look where I am?" Like I said we had stickers 207 and 208 and I saw the women that were in the queue in front and behind us were sat on the opposite side to the judges table about 3 or 4 rows back.

Once everyone was in the studio, including all the friends and family, Stuart the warm up guy took over. Grabbing everyone's attention in a leopard print suit and green shirt. He was really great at getting the audience even more excited for the show, as well as explain what was happening. He explained that first they were going to prefilm one of the pro dances, the one you will have seen on week 2 results show (4/10/2015) and shortly after introduced the pro dancers. Oh my they are all stunning. Brendan told us to cover our hair with our hands as they had to take Aliona's extra long skirt over our heads. Stuart had warned us though not to do it (or scream of the static shock ;-) ) when they took it back over us during the dance and the cameras were rolling. I had Ola at her starting position to the side of me and Pasha on one knee infront (of course I said yes). They had to stop the first take quite soon though, as Oti had hit a woman in the audience during one of her moves. Luckily she was fine, and poor Oti took some ribbing from Stuart. Ola turned around to me and said "it's alright I won't hit you," for which I'm glad she didn't. They then did another 2 takes. I didn't really know where to look as there was so much going on. When all the couples were in hold it was pretty spectacular. I got goose bumps. It actually topped Janette spinning at break neck speed on the aerial, which was also pretty incredible.

Between takes you'll find Anton larking about. He made one woman scream as he snook up on her from behind. He came up to a lady on our row and said "hello Nanna" (she wasn't) followed by a kiss on the cheek. Then proceeded to give our whole row (all women) a kiss so we didn't feel left out. So I guess that makes me the envy of a lot of Strictly fans.

Once they finished filming the pro dance, the pros went off to change for the show and the stage reset. During this time Stuart picked one lady from the audience (sitting on Bruno's side of the table a few rows back) and asked if she wanted to walk down the famous stairs. She was shaking so much "because this is Strictly" in disbelief at getting to walk down the stairs. She and Stuart walked up the stairs, he announced their names, to which we all cheered and they walked down, stood pretending to get the judges comments for a while then walked off and up to the Clauditorium.

Then he introduced Tess and Claudia as they came into the studio. I'll admit to never being the biggest Tess Daly fan beforehand but she is actually really warm and personable, plus absolutely gorgeous. Plus she did say "Hi, sparkly lady on the front row" to me so that gave her some extra marks. Both hers and Claudia's heels are ridiculously high, Claudia could barely walk. Claudia was really nervous too, but used it to her comedic advantage. Joking that her dress smelled of sick after just throwing up. She was also thrilled to see a man from Great Ormond Street hospital in the audience and introduced him to everyone. They rehearsed their opening as well as some other bits. This was as much for the audience too so that we knew not to sing along to the themetune and when to react to their lines. They then left again for final preparations. During which time Stuart reminded us to give as much support as possible to the contestants as the came down the stairs and as they performed. Especially as this was their first time dancing and they were very nervous. And I think having the support of a live audience helped them be more confident.

Not long before going live they gave us a Kit Kat, 4 fingers no less and a box of apple juice. Although there wasn't much time to actually eat/ drink much, pretty soon they were rushing around trying to collect all the rubbish before the show started. During this time the judges also came onto set. They were introduced to the audience and then they posed for some photographs with paddles that spelt out "vote."

The next thing we knew there was 5 minutes till we were going live. There's such a ripple of excitement that goes round the audience at that point. Everyone got into their starting positions and Stuart reminded us to show the couples as much support as possible. Then all of a sudden they were counting down from 10, the theme music began to play and we were cued to start clapping. Just before this I had started eating a cough sweet and consequently tried to hide it in the side of my mouth as the camera went passed, it resulted in me looking like I was giving Craig a dirty look haha. Lesson learned. I did like his sparkly brogues though.

Watching the show live you get so caught up in the atmosphere of being there and getting to experience the show in a way you can't get watching it on tv. You forget that it's actually live on tv too. The six couples performing on that night were Kelly and Kevin, Anthony and Oti, Helen and Aljaz, Carol and Pasha, Daniel and Kristina and Anita and Gleb. Kelly opened the show with such confidence and attack, it really got the audience going. Although the loudest cheer probably went to Pasha as he was flown up in the air on the storm cloud, poor Carol could barely start her weather forecast part. The biggest suprise for me was how well Daniel O'Donnell danced. I was expecting him to be the comedy turn this year, but more fool me, he was really graceful and didn't go wrong at all. It was almost as big a shock as seeing that rip in Anthony's trousers. However the night belonged to Anita and Gleb, she really looked like she had such a good time and gave such a confident performance. Watching Gleb dance was no great hardship either.

All too soon the show had ended. It went by so quickly. I could have happily sat there a whole lot longer and wished we could just continue with the rest of the couples. We did get a sneaky peak at some of them though as after they cut they did some quick rehearsing on the dance floor. Both myself and my Mum were amazed by Jay's hips and predicted he would do well. Aliona looked like the cat that got the cream. The only protest for not being there longer was from my back. The seats are rather uncomfortable and didn't do my aches and pains any good. I should have used the cushion from my wheelchair. As we left the studio and the marquee all the staff asked if we'd had a good time and wished us a good night. I really have to applaud the audience staff as they were all so friendly and helpful. The whole organization of the evening was geared to give the audience a fantastic experience, beyond the entertainment on the dance floor and my Mum and I sure did.

It was all very surreal in all honesty. As we left the studio and walked back to the hotel that seemed to be the theme of conversations. No one could quite believe they were on Strictly. I was so excited though to get back to the hotel and see the messages on my phone. There was lots of photos of friends tv screens and even video and people in shock at how good our seats were. It did take a while getting to sleep that night, trying to wind down from so much excitement. Even after watching the recording of that nights show (a fair few times) and seeing myself on tv, it still hasn't fully sunk in. Watching the show now is not the same, I love the show more than ever and I feel so privileged to have experienced it live. However each week now I long to be there. It really is an experience that will stay with me for a long time.

A very big thank you to everyone that works at BBC shows and tours and to the cast and crew of Strictly Come Dancing that work so hard to make this show the institution that it is.

Sian X