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 

Long haul travel tips for Spoonies

Finally, here's my tips on how to cope with long haul travel as a chronically ill or disabled person. Buckle up, ironically this is a long post.

Research

When planning your trip it's important to consider the length of time you want to go for. Be realistic in remembering that the journey will require recovery time, which could be longer than you first imagine and you are unlikely to get to see much of your destination. However of course the whole point of going is to "explore" a new place, so you need to give yourself enough time to do this, whilst also allowing time for rest and recovery. Also think about recovery time if you want to go on any day trips whilst away. 

Also consider whether you can afford to upgrade to better seats with more leg room on the flight. Having more room is certainly an advantage however of course paying for the privledge is not within everyone's means. Ring your airline or visit their website to see where their special assistance seats are, whether they have set seats for each class, or whether they will allow you to choose where you want to sit. This can all depend on your disability or illness too, so discuss this with the special assistance team. All airlines will prevent you from sitting in the exit rows for safety reasons but there may be other extra leg room seats you might be able to reserve, which would be beneficial especially if you're in economy. Choose one that is close to a toilet if needed. 

For more information on the best plane seats visit Seatguru at www.seatguru.com to research good seats for the type of plane you will be travelling on. Perhaps have this open as you speak with the airlines special assistance team.  

When researching destinations be sure to check if you need immunisations to travel to where you wish to go. Consider whether your body will be able to handle such injections.

Check your medication is legal in the country you are going to and seek advice on how to proceed. You don't want to get stopped by customs. You should always carry a prescription with your address on it or medical note anyway, along with your medications in your hand luggage. Also whilst on the flight remember to take your medications as per usual. Keep your watch on the same time as your home country so you can keep an eye out or set alarms on your phone or watch.

 

Visit the airlines website. Make yourself as familar as possible with their special assistance policies. Check the types of meals and snacks that are available onboard, especially if you have allergies or food intolerances. This will help you plan what food to pack in your handluggage or to be bought at the airport. You can check what films and tv shows they will be showing. You can plan what you want to watch or if nothing really takes your fancy then you know to bring plenty of your own entertainment. Whether that be downloading films to a laptop or tablet or bringing a kindle, books and puzzle books. 

Visit the airports website.  I would look up the special assistance policies for each of the airports you will be travelling through, so you can have an idea what to expect. Remember although you book special assistance through your airline they are only responsible for your care on board. Whilst you are at the airport you're in the hands of their special assistance team, so be sure to check both your airline and each airports policies.

 Also whilst you're on the airports website look up what shops and restaurants are available at each airport you will be at. This can help you plan where you will eat or get snacks. Again this is particularly useful if you have food intolerances so you know that you can get food at certain places. This can be really useful if you have a layover as you can plan where to go and how best to utilise your time. Alternatively there is the app gareguru and trip advisor.

If you suffer from food allergies or intolerances and have concerns about managing abroad be sure to take a look at www.celiactravel.com for advice on how to ask for free from foods and printable cards in different languages to explain your intolerances. If you are staying bed and breakfast, half board, full board or all inclusive contact your hotel in advance to enquire what free from foods they provide, or put in a special request for certain items.

 

Consider booking into one of the airport lounges so that you can relax in a quieter less chaotic environment before your flight. This is also a great idea if you have a stopover between flights, so you can have somewhere quiet to go recover and prepare for the next flight. Or if you are travelling alone as you know you can get everything you need in the one space without going far and the airport special assistance team know exactly where you are to collect you. If you are travelling alone and haven't booked into a lounge my friend Hannah recommends trying your luck and asking if they will let you wait in there for some peace and quiet. You never know. If they say no, ask them to take you to a quieter spot and don't be afraid to ask them to get you a drink or something to eat.

Packing and preflight

Getting a lot of good quality sleep before you fly is recommended. Sleep is our bodies way of recovering and also keeping our health in check. If you do sleep on the plane it won't be as deep a sleep with being in a busy surrounding. So get plenty of sleep before a trip as well as trying to sleep on the plane as much as you can.

You will often get a sleep kit from the airline with things like a small pillow, blanket and sleep mask however I recommend taking your own things so that you're extra comfortable. Having your own things that are tried and tested to make you feel safe and cosy especially if you are an anxious flyer is a bonus. Sometimes just the smell of them can evoke calm. A sleep mask can help you block out any light and aid better sleep. Also consider noise cancelling headphones or earplugs to help block out noise. 

I say this is in any of my travel posts but it's so important. Pack the items that you need to feel as comfortable and relaxed as possible in your handluggage. Whatever you use at home to achieve this, bring it. You need all the extras you can when in a new and potentially uncomfortable environment. Anything at all that you use when you want to try feel better.

So pack those favourite fluffy socks or essential oils, as long as they're under 100ml and in a clear bag. If you drink a special tea to help you relax bring some tea bags and just ask for hot water when you're on the plane. Comfort is key! These items will help you during the flight but also throughout your trip. Having items you're familar with and known to help you feel better will help comfort you when you are having a flare.

On that note sadly you can't have a hot water bottle or electric heat pad on a plane. Although you can pack them in your checked luggage, which is what I do. If these are things you rely on and worry you might suffer aches and pains you would usually treat with heat, purchase some heat patches that you apply to the skin. You can buy different types for different areas and they last up to 8 hours.

Comfort is key! Yes I said it again. Choose a travelling outfit that is really comfortable. I'd wear pyjamas but I think that's frowned upon. Although I've seen a few people (older than 3) brave it out. So wear the next best most comfortable thing. Stretchy trousers that don't cut you off at the middle. Remember your stomach and legs swell whilst flying so a forgiving waist band is best. Wear shoes you can easily slip on and off and pack extra socks or slippers to keep your feet warm. A big scarf is often good as it can be doubled up as a blanket or as an extra cushion. Layers are also good as you never know what the temperature on the plane is going to be. Just remember to take them all with you when you land.

Wear flight socks/ compression stockings. This will help reduce any swelling in your legs and help prevent DVT's. They are great if you are not used to sitting for that length of time and if sitting usually causes your legs to ache. Or if you experience blood pooling, poor blood flow in your legs. Put them on before you get on the plane.

Bring snacks- You get food on the plane but this might come at times when you are not really hungry or you just don't like what's on offer, or they don't provide anything suitable for your dietary requirements. Especially bring food with you if you have allergies or observe a certain type of diet. You can pick things up at the airport (again visit the airports website to see what shops are there, so you know you can get snacks there) or if you have room in your handluggage bring things from home. Don't put anything in tin foil though as this will cause trouble going through security. Graze snacks are great as they are in small packets. They now do the slightly bigger ones too. I found some in a WH Smith at the airport last time I went away which was useful. Also look at kids lunch box type snack packs like dried fruit or cereal bars. You could also take some things like porridge or noodles that only need hot water.  Again check security restrictions as to what you can bring through security.

Invest in a water bottle with a filter. Such as the bobble bottle. That way you can make sure you stay hydrated but not have to worry till the next time the drinks trolly comes round. Simply ask the air hostesses to refill and the inbuilt filter will filter away any mankyness of airplane water. Plus you don't have to buy another bottle of water because you've had to chuck one before going through security. Although you will need to make sure it's empty as you go through security. They are also great for using at your destination as that way you can be sure the tap water filtered and less hard, as well as saving money on bottles of water. I would double check though that the tap water where you are going is safe to drink though first.

 Pack a portable phone charger in your handluggage. These are great for if you are using your phone a lot at the airport/ on the plane (on flight mode) as they give you that peace of mind that should you run out of battery you are not stuck without the use of your phone. Or feeling reassured you have enough battery life to use your phone when you land, should you need to contact your transfer or hotel etc. They're also great if you are delayed and stuck at the airport or on a layover (especially if it's a long one). You don't have to worry about finding a power socket in order to charge it. It also doesn't matter then if you are in another country but your plug adaptor is in your checked luggage. 

Stay hydrated. Planes will quickly dehydrate you. Drink as much water as you can before and during a flight to stay hydrated. Avoid alcohol and caffeine as this will dehydrate you even more. I know this can be difficult especially if your nerves affect your bladder but do your best.

Avoid big meals. Before flying and during a flight be aware of what you eat. Eating smaller meals and snacks is best because of the effect of the air pressure on your digestive system. Your body cannot digest food as well when you are at altitude and so a bigger meal will cause even more bloatedness and cause you discomfort. Give your stomach an extra helping hand my choosing more easily digestable foods. This is another way you can help ensure you feel as well as possible after the flight, because let's face it you're going to feel cruddy enough.

At the airport

If you are using your own wheelchair your wheelchair will be stowed in the hold at the gate, usually after you have boarded the plane. If you have any stopovers chances are you won't see your luggage until your destination but it's important to check with your airline what the policy is for medical equipment. I've heard that in some instances your personal wheelchair will be tagged with your final destination and therefore once you land at your layover airport it will be taken with the luggage to your next plane. Meaning they won't reunite you with your personal wheelchair until your final destination and you'll be given one of the airports during the layover. Do seek advise from your airline over what to expect, especially if you have a specialist wheelchair designed especially to fit your personal frame and keep you supported or a power chair.

A lot of airports now have those massage armchairs or some even have masseuses, before you board this may be an option to help get your blood flow going. In particular if you are at a stop over airport and you need to recover from the first flight. Keep the pressure light though. Plan your time- One of the things that I predict I would struggle with flying long haul is what to do for that amount of time. Ok I'm used to hours of doing nothing confined to my room but not spending that amount of time on a plane. Spending an hour on a plane is enough for me in all honesty but the world has some pretty fab places that are more than an hour away.  In my travel interview with Hannah, she said that she likes to make a rough plan of how she is going to use up the time, which also allows her to pace and ensure she gets plenty of rest. Plan to get as much rest or sleep as you can but also use lots of distraction techniques like watching a film or listening to an audio book, especially if you are a nervous flyer.

Coping with jet lag and managing your stay

 Commonly the advice with jet lag is to fight it and to get yourself in line with the time zone as soon as possible. However being a chronically ill person we know that fighting our body is never going to end well. We have to listen to our bodies. Chances are after such a long flight and stresses of airports you are going to feel pretty unwell and will need to go to bed as soon as possible to recover. Let yourself recover properly before trying to adjust to the time zone and increasing your activity. 24hr room service can be quite handy here or having someone that can go out and stock up on food and drink would be useful.

The unknown is always going to be your biggest obstacle and challenge, however if you prepare yourself as much as possible and have lots of coping mechanisms you can feel more comfortable in the knowledge that you're prepared and armed to tackle any challenges.

Lastly my advice is enjoy it! Have fun and experience as much as you can to the best of your abilities. Also be appreciative and thankful that you have this opportunity. Don't forget to give yourself some appreciation too for taking on this challenge and giving yourself new experiences.

I thoroughly recommend you search Pinterest and other blogs for long haul posts to get as much info as possible from experienced long haul travellers.

 

I hope you find this post useful. Please comment with anymore tips if you have any, would love to hear them. I've linked some more posts that are related below. Or for all my posts on my spoonie travel series visit my travel tips page.

 

Sian X

 

Travel interview with Hannah, including long haul tips

Researching a holiday

Planning a holiday

Getting travel insurance

Booking special assistance