It's not always ME

I have seen many a tweet or post from people with M.E and other chronic illnesses about doctors lack of understanding and 'horror stories' about appointments and hospital visits. And I'll be honest, for a while I gave these posts too much head space. I started to believe that I simply must suffer in silence and accept that my health was getting worse and that no one could do anything.

Until one day when even breathing felt like too much hard work I declared that this was madness. Because if someone that was otherwise healthy felt half this bad they'd be calling an ambulance or at the very least seeing their GP. Yet because I have a chronic illness and think I know what is going on I simply have to put up with it and keep quiet. Well I wasn't having that! It occurred to me how ridiculous it was to be suffering so much yet my GP obviously had no idea how bad things had got. And if I didn't tell them, how could they know? 

What was more ridiculous is the fact that I've always had good experiences with my GP's, they diagnosed me early, have made referrals to OT, home visits and helped me find a good balance of medication. I've not had the bad experiences others write about and fear will happen again.

The thing is though regardless of your medical history we all need medical attention from time to time. Whether it's to simply review medication or make referrals because our illness is becoming more severe. We cannot do what I've actually seen some suggest in keeping clear of doctors. This is not to say we should accept poor treatment. Far from it. There are good doctors out there that do understand M.E, it's a matter of finding them. They're the ones we should be taking advice from, not some naysayers on the internet. It must be so hard on them too, to see so many patients asking for help but the science and research is so far not progressive enough to help them. When all they can do is help keep us 'comfortable,' try to manage our symptoms and rule out other things.

Because that is another reason why seeking medical attention can be so important.  Sometimes it's not going to be 'just M.E' 'just fibromyalgia' or 'just IBS', etc etc. I think many people avoid getting help because they feel they'll be told it's just (insert known diagnosis). To be fair in some cases it will be. Or you will be sent for some standard blood tests or an ECG etc only for them to come back 'normal'. It can be disheartening, believe me I know how it feels, especially when you feel so far from normal. You just want answers. Or something with a quick/easy fix.

However, when it comes down to it this is also the best we can hope for. We already know we have that condition and probably have built up a wealth of knowledge and coping mechanisms to help. We also know recovery is an ongoing process filled with peaks and troughs. Having recently been on the other side, where test results came completely out the blue and needed looking into urgently, I can tell you being on that side of the fence is certainly not the better option. So my opinion on negative results has certainly become more 'phew what a relief.' Hopefully, I'm doing okay though.

Sometimes we might even get some answers that can be more easily solved, our iron or vitamin D levels might have dropped, which can be fairly common if we are housebound and not getting all the nutrients we need for whatever reason. So a short course of them can help us get back on track.

Then of course, like I said there are the times when it's not going to be just M.E etc. And obviously we can't know this until it's confirmed. But what I feel it's important to say is, we are not immune to other illnesses, chronic or short term. From common coexisting conditions such as many M.E sufferers also being diagnosed with fibromyalgia or POTS to infections, lumps and bumps and even mental health problems. Or heaven forbid breaking a bone or muscle damage, which when you think about how drained and weak we can be could easily be a possibility after a fall.

Which is why I totally rolled my eyes when I saw a post about the junior doctors strike making no difference to those of us with M.E because the NHS can't do anything for us. If only having M.E made us exempt from accidents or other illnesses. Sadly it doesn't. Of course in those situations we cannot always guarantee we will see a doctor or nurse that will also understand M.E or other condition, but in those instances we just have to remember that we know better and we're there for another reason.

This is why it's so important to be self aware and know what is normal for you. And that includes self examination of your bits and bobs too. I have a blog post explaining how to do this for women here and for men here. I think as long term sufferers we're pretty good at being self aware, because we are constantly self evaluating and assessing. Judging how many spoons we might have. Do we have enough to have a shower? Knowing when we need to stop and rest. The effects of PEM on your body and how it will differ from activity to activity. The difference between PEM and a relapse. The difference between a flare in M.E symptoms or a flare in fibromyalgia symptoms. You become an expert in you.

However of course there are going to be times when things feel brand new and out of the ordinary. Symptoms you may never have experienced. Symptoms that scare you, such as paralysis or feeling completely trapped in your body unable to communicate. And when you are treading that line between is this just another M.E etc symptom or something else, isn't it best to be on the safe side? Wouldn't you rather know for sure that it's nothing else on top of everything else?

Not long ago after I had been in a neurological hospital for a week I began to experience a dragging sensation in my face and my speech began to slur with it. It was something I've never experienced before and with this being a key symptom of a stroke you can bet I was spooked. And so even though I was struggling with PEM, I knew I had to get it checked out. Luckily it wasn't a stroke and thank goodness for that. It turns out it was a new PEM symptom, a reaction (or overreaction) of my diva body to having been in hospital for a week and only getting 10 hours sleep in that time, when usually that's what it needs a day. Did I feel better for knowing I wasn't having a stroke? Yes, of course. Did my doctor feel I'd wasted their time? No, they were concerned too and checked me over and spent ages on the phone to my team at the neurology hospital.

Sometimes, even though we're self aware we can also not pick up on some things because we're also so used to being in pain or other symptoms. These might mask other things that might be going on. I know someone that didn't pick up on a kidney infection until they almost got sepsis, which sadly could have been fatal, because back pain and fevers were common when they were flaring.

So my point with this blog post is, be vigilant with your health. Know what's normal for you and what isn't. And if you think something is amiss find out for sure. I know it's hard when you already feel so awful but you need to be safe. Find a good doctor and never think that you have to put up with bad treatment or poor opinion. Move on from them and block out their unhelpful comments. You know yourself and you know you are far from a lazy malingerer or hypochondriac. Because you really do need someone in your corner. I disagree that we do not need them because we all need medical care, whether it is for our chronic illness or for anything else that might come your way. Remember we can't get help if we don't at least ask. Don't suffer in silence. This is all part of treating yourself with love and respect, of wanting the best for yourself.

If anyone knows of a good resource for finding an understanding GP or medical professional please do share.

Take care everyone

Siân
X

Spoonie Travel Interview with Anna

Malaga
photo by Anna Jones

Illness/ disability: ME/ CFS

Destination: Malaga, Costa del sol, Spain

Who did you travel with? 

My boyfriend, Mr Tree Surgeon

What airline did you use?

British Airways

First of all, how was your holiday?

Wonderful thank you!


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

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

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

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

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

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

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

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

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

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

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

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

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

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

Most definitely

View from my bed
photo by Anna Jones

What items would you not travel without?

Ear defenders!!!

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

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

What other disability/illness related essentials do you pack?

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

What are your favourite holiday beauty products?

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

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

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

How are you after the holiday?

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


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

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

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

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

Sian x

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 

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