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 

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