Packing for holidays!

Yay! I know I have wrote a lot on this subject but I wanted to share with you some of the tips and tricks that I've shared throughout my travel series put into action to help me pack for my holiday. Mainly because this time I remembered to take photos. Apologies it's a few weeks late too but my head and body are probably still back in Greece. I've struggled a fair bit since being back for various reasons but on with the show.

My hand luggage: All the things a sick chick needs to survive 4 hours on a plane. As you can see I packed a foldable walking stick too, which you are entitled to carry and is not counted as an extra piece of hand luggage. Although I use a wheelchair I took the stick mostly for use on better days on holiday for short walks (I mean like 15m short). Also for use on the plane if I was ok enough to walk to my seat (although in the end I opted for the evac chair instead, due to my symptoms) and if I needed to use the bathroom on board. See my hand luggage post here for more details. Including a list of all the spoonie essentials that I pack.

Also in my hand luggage was this little clutch bag, in which I put the items I needed for take off and to get myself comfortable. As it saves searching around in your main bag for everything you need. In this bag I had an inflatable back cushion, inflatable neck cushion, travel bands, some chewy sweets to help any pressure in my ears and some face wipes. I have face wipes because often if my head begins to struggle with the pressure on take off or I get panicky then I get really hot; so I have these to help cool me down. They got a lot of us on our landing back home too as it was really bumpy and scary. So I kept dabbing myself like Mrs Bennett.

This was all my tablets for the two weeks. There was A LOT! Most went in my hand luggage but because of the sheer amount and because it was a 2 week holiday I put some in my main luggage too. I made sure I had some of everything in my hand luggage though. I also had all my tramadol in my hand luggage because it has been reclassified  so I wanted to keep it with my prescription in case there was any security issues. Which there weren't. Do remember to carry a prescription or doctors note with your medication and name on though. Read more about transporting your medication here.

Lastly in my hand luggage was all important straws. Why? Because they don't have them on planes and sometimes I struggle to hold a cup so straws come in handy. I feel really self conscious if someone needs to help me drink.

When it comes to actually packing little and often is key and always work from a list; especially if you're liable to brain fog. Also if you can get help doing the actual packing then all the better. Especially getting down your case.

 

As you can see from the photo above I packed my shoes along the sides of my case. This is a good way to utilise the space in your suitcase. You can even put smaller items like socks into them to save more space and also to keep the shape of your shoes. Remember to pack the shoes with their soles against the lining of the case as they might be a little dirty or dusty and packing them like this will stop your clothes getting dirty. Another tip is to put a shower cap over your shoes to further prevent any dust getting on your clothes. This could be really useful on your return journey when your shoes are likely to be covered in dust and sand.

In my packing post I featured a photo of a medication organizer that had jewellery in it so that it wouldn't get tangled. However I don't wear much dainty jewellery, I'm more a statement jewellery person, so I needed to find a way to pack that and avoid any tangles. What I did was to put each necklace into an organza bag, which I have loads of from jewellery making, but small plastic bags work too. Then I put them into a small wash bag to keep them all together. As you can see I packed a lot. I just couldn't decide! Plus I really don't get much chance to wear it at home. However because it was so hot I didn't wear necklaces often. Necklaces and sweat don't mix. 

Also in my packing post I mentioned that I also pre-pack my beach/pool bag to save myself time and spoons when I get there. It's an idea to also pre-pack your evening bag too. However as I doubled up my take off essentials bag as an evening bag I didn't do this.

Do take a look at my other posts on packing for lots more tips

hand luggage

hand luggage only

my packing list

packing tips

 

Sian x

 

What an M.E crash is like

Lately I have been doing it tough health wise. Or should I say tougher than usual. So I thought it would be a good time to write about crashes and flares. Although due to the flare it's taken me a good while to write.

You may have heard many sufferers talk about having a crash. Now to most people, myself included, that conjures images of them having been involved in a road traffic accident. But what is actually meant by the term is a sometimes literal crash to the ground of their health, energy, concentration. It can often signal the onset of M.E if you are previously undiagnosed and can be known as a trauma. This is what happened in my case, which you can read more about here. Other traumas include infections, accidents and bereavement. Something that will stop you in your tracks and knock you off course.

Once you have M.E, crashes can happen frequently. They can be triggered by an overload of activity or what our brains perceive as such. Many of us aren't physically overloading ourselves (by which I mean often next to nothing and the most active thing being going downstairs) however there seems to be a fault in our nervous systems that tell our bodies there's too much going on and they need to shut down in order to cope. As well as chemical changes such as adrenalin levels. Crashes can also occur from an overload of emotion or too much activity going on around you. For me personally my biggest trigger is loud music, in particular really bassy music. You know the stuff with the really thumpy bass. It makes my whole body reverberate and feel like I'm being thumped, and torn apart, which causes agonising muscle pain and the feeling I'm going to pass out and a crash can come on in a matter of minutes.

Often there are warning signs but they never really prepare you for them. Because when your body decides to crash, that's it going into hibernation. Much like a computer that's been on all day with lots of tabs and programmes open. Chronic illness and M.E in particular is a constant series on peaks and troughs that can vary a lot. A crash is when you find yourself at the bottom of one of those troughs. 

Now let me just point out I'm not talking about organs shutting off or failing, and in need of a crash team and defibrillator it's not that dire. What I'm referring to is a power cut of sorts and while it's not critical it can be dangerous, especially when it comes to when and where it happens and it's often very frightening.

A sudden crash can come on without much warning. It may also lead to a flare, where you will experience high levels of symptoms for days or even weeks. Or worse still a relapse, where you struggle to improve for a prolonged period of time. So what happens? For me, I can experience anxiety type symptoms as though I'm about to have a panic attack. My body becomes tense and I can be feeling somehow overwhelmed, like something bad is about to happen. This is the fight or flight mechanism kicking in. When our bodies and brains perceive they're under threat this kicks in to help us get away from any danger. You can often be mistaken for being drunk, because you become very unsteady and start to slur your words. Often drifting in and out of consciousness. My eyes struggle to focus and blinking becomes rapid. Then I start to feel very heavy like I'm being pulled down. And the brain starts to shut off. You close in on yourself. Almost like when you are having an anaesthetic and the anaesthetist asks you to count down. It's not as controlled as falling asleep nor is it the same as being asleep as you still have some perception of what is going on around you. Hearing etc. In fact sleeping at that time can be difficult because of the adrenalin in your body. It is more a matter of different states of consciousness. However, you can literally feel yourself shutting down. It's very scary.

 Your eyes can either be open or closed. However, it's like the lights are on but no ones home. Usually they'll be closed but you may be able to open them up after a while, all depending. As I said my first crash I couldn't open them for 3 days. If your eyes are open then everything is blurry. Regardless whether your eyes are open or shut being able to communicate is difficult. Your ability to speak is lost and it can take a lot of effort to mouth or whisper words. 

Now you'd think that at times like this some of your other systems would shut down. Like your bladder and your thirst. Which as you can imagine when you're feeling completely shut down and unable to communicate well is hard. With your bladder it's again because of the fight or flight instinct, your body wants to lighten itself in case you need to flee. Gee thanks  primeval get me away from woolly mammoth instinct. 

Luckily the other day as I felt myself starting to crash I had made sure I had my phone literally at hand and put it so that when the screen was unlocked it was on my messages. It did take a while to get to that stage to be able to unlock my phone however. And I was only able to press a random letter and send. The problem was that my family thought that I was actually fast asleep. So although they were getting messages they thought I was leaning on my phone. So other people knowing the difference can be a big issue. 

Thankfully they soon realised I needed help. I could only mouth what I wanted. Luckily I have a commode, so as I was downstairs and very weak it was very handy. Of course I needed a lot of help just to sit up and up on to it. I was extremely weak and floppy. Another issue is of course you can be desperate for a wee but don't have the muscle capacity to do it. That's how you know you're weak.

Below I've listed some things that you and your 'carers' can do to help and keep you safe.

Things you can do:

Try not to panic. This will drain you even quicker. Take deep breaths and reassure yourself.

As soon as you start to feel a crash coming on. Get yourself to safety and comfort. Lie down on your bed or a sofa 

Avoid walking too far incase you fall and avoid the stairs. Try to avoid lying on the floor if you can. One because it's cold and uncomfortable and two because it's going to be hard enough to get up as it is.

Have your phone close by. As close to hand as possible. And like I said above ifyou have it set up on phone or messages. 

Maybe set up a sign system with your 'carers' so you can effectively communicate what you want. Or cards with yes and no on them. Obviously develop this on a good day

Also make sure your 'carer' knows your triggers 

If you are out and about, particularly if you are on your own, carry a medical identification card. You could make one yourself, providing information of your condition and what others can do if they find you. Providing contact numbers can also be useful

Stay put for as long as you need too. Do not get up or move until you feel strong enough and only do so with help

The next day spend it resting and doing as little as possible and for as long as it takes for you to regain your strength. Remember this could take weeks, and your post exertional malaise will be even more significant. You may also find that you sleep more

If your relapse is prolonged or more severe seek medical help

Make use of youtube, iplayer, Netflix etc if you can tolerate it, as it's a way to keep occupied but not having to hold up a book etc, which can be painful

Things others can do for you:

Put communication devise by them, if they don't already have it

Stay close

Know the likely triggers of their crash and do what you can to stop it. Example, loud music- put ear defenders on them (if they can tolerate it) or relaxing meditation music can help cancel it out. Try and get whoever is playing the music to turn it down or off

Try to eliminate as much activity as you can around them. Switch off the telly etc

Make sure they're warm or cool them down if they are overheating, a wet wipe or face wipe is useful. Note that temeratures can change quickly too so keep checking

If you do need to lift make sure you lift correctly, bend your knees and try not to hurt yourself

Ask questions, do they need anything? But be specific so that they can nod their heads rather than saying. for example; Do you want a drink? Do you want any painkillers?

If you're giving them a drink use straws 

Sometimes a crash can be due to low blood sugar so get them a sugary drink to help raise it again

For the next few days you will need to be on hand more. You may need to help getting them up, feedin, managing their medication. Especially things that take much concentration. 

Try to make sure that they do not over exert themselves and are resting properly

If a relapse lasts longer than usual or is more severe seek medical help

I have also found this online paper here that can help others understand what is going on in these instances. What signs to look out for and how they can help you. It is well worth the read. Apologies it's been a long one folks but hopefully it's been useful.

Sian x

Travelling with children

 

Following on from my last travel post, which was an interview with my friend Ali about travelling with her husband and daughter, which you can read here, where she shares some fab tips; I thought I'd do a post with some extra tips and advice I've picked up whilst researching for this series about travelling with children. 

Firstly I wanted to share this youtube video from Louise from SprinkleofGlitter. On it she shares her tips for travelling with children, along with some ideas on keeping them entertained on the plane. I thought this might come in handy for any of you that have children and be a great addition to my travel series. It's certainly worth a watch.

https://www.youtube.com/watch?v=H8RIgqhuZEY&featurhttp:/=youtube_gdata_player

 

Some other tips and tricks I've come across are;

 

Remember too that children get the same baggage allowance as adults so make the most of it. When it comes to packing for your children forget the less is more rule and go with the ' I need to keep them entertained and behaving' rule.

 

 

 

If you are travelling with a baby or toddler then bottles, or beakers of milk, water or juice are allowed to be carried in your hand luggage. Just be sure to tell the security officer as you are putting your hand luggage into the trays for screening. They may also be checked with a litmus paper test.

When it comes to snacks and meals. Firstly take a look at your airlines website to see what is included with your flight or available to purchase. If you are travelling short haul or wish to save yourselves the extortionate onboard prices then eating at the airport or purchasing food to eat on the plane atthe departure lounge is a good idea. You can take a look at what restaurants and shops are available on the airports website. The gateguru app also has this information for some airports. You can even bring food from home, just check that it is allowed. I know some airlines might be getting tougher on nuts due to the contained atmosphere and nut allergy risks. 

I would also recommend packing some straws for older children if they have a drink on the plane that doesn't have a sports bottle top so there is no spillages.

 

Planes aren't really the cleanest of places so packing antibacterial wipes and hand gel can come in handy. Also pack extra dummies should one get dropped. You can also buy portable disinfectant pots for dummies. And plenty of baby wipes to keep your own childs hands and faces clean.

If you are travelling with a baby take a look on the airlines website to see if they have cots available. Airlines that do will usually have this facility by an extra leg room space, like at the front of each class section. I would also check whether you are only entitled to one space in that row of seats, which is often the case. So you may want to prebook another seat(s) on that row to all be together. As well as the benefit of having extra leg room, there is also the advantage of being able to put down a blanket and creating a small play area for baby. Thank you Pinterest for that nugget of information.

The problem here is other passengers, but being polite and asking first will win you brownie points I'm sure. Remember the point I made above that it is likely you will only automatically be allocated one seat with the cot facility. The others can be selected by any other passengers. And they're popular, because of course there is the extra leg room. If you want to be guaranteed those extra seats in that row pre-book them. FAST. And be nice to the people sharing that space with you.

Just another note on seating your child. Children under 2 are permitted to sit on an adults lap, therefore saving you the cost of a seat. However I have read a few posts stating that often it is best to get them their own seat, that way both you and your child are much comfier. For take off and landing they will have to be seated on your lap however. If you do decide to get them their own seat, you can then fit a car seat in if needed. That way you are not stuck with a wriggly baby on your lap for the duration of the flight. And they will sleep better. However, there seems to be a lot of confusion surrounding taking car seats on to the plane. Obviously there are different regulations for each airline but I have read that there seems to be confusion between check in staff, ground staff and cabin staff having different opinions. I recommend reading the following blog explaining the issue a bit more. I can't say I have ever seen anyone take one. So I would say to double check with your airline and print off any information from their website so that you can show them that that is what their company states.

Another advantage for using a car seat is of course if you are planning to hire a car abroad. That way you know it's safe and you don't have to pay to hire one.

As for buggies/push chairs you can keep these with you until you go onto the plane. Make sure that they get labelled at check in. Then when you get to the plane hand over your buggy to ground staff who will put them into the hold. When you arrive at your destination buggies will come out of the hold first and will be waiting for you to collect by the plane. That is if you checked them with ground staff and not with the rest of your luggage at check in, in which case they will be put on the carousel.

In this day and age of technology make use of tablets, ipads, phones etc to help keep older children entertained. Load it with games, films or tv shows before you go and remember to turn any electronic devises to airplane mode before you get on the plane. This is particularly useful for shorter haul flights.

 If you only have one devise but more than one of you want to listen to something then get yourselves a headphone splitter, which allows you to plug more head/earphones into the device. Before you travel maybe download your child/children's favourite film or tv programmes or perhaps a new film that they haven't seen. This might be a good idea if you are travelling with more than one child. Or before you travel ask your children to agree on a film/ tv programmes they will all enjoy. If however you are not all seated together maybe work out a timescale for each child to have the device/s for. This could also work if you have different devices. Either way set the boundaries before travelling and involve them as much as possible (obviously depending on age etc.)

On longer haul flights entertainment is provided in the form of tv screens on the back of the seat in front of you. And includes a range of films, tv shows and games. You can usually check on the airlines website what films etc are showing. If there's nothing on there that will interest your child then take back ups. Also remember to pack head/earphones to be able to listen to them.

The following link is some tips on how to  negotiate whilst at your destination for parents/guardians of teens.

 

 

Sian

Why people with chronic illnesses dislike #challenges

First things first. Let me just say this is not a stab at any genuine efforts to raise money for charity. I, perhaps more than many understand the value of charity and how much it is needed. It really should not be the case that it is, when it comes to medical funding but sadly it is and without it many people that are facing a chronic illness would have no hope. I am one of those people. So in no way would I ever dislike such efforts.

The issue comes when a fundraising concept turns into a social media phenomenon. In one way this is great for awareness, getting celebrities involved and sharing with their millions of followers is a fundraising dream. But somewhere along the way the charity and awareness drop off. What was the #ALSicebucketchallenge just becomes #icebucketchallenge. People get caught up in watching famous people scream and then daring their mates to do the same, because 'it will be a laugh,' or you want to get your own back. The illness it's in aid of gets forgotten. It took me a good few videos until I found out it was actually for charity.

The ice bucket challenge was devised to mimic the seizing up of muscles that ALS, or Motor Neuron disease as it is also known, patients experience. A lot of thought went into what would be an applicatble fundraiser for this devastating illness. So to all of you that have done the challenge and actually made people aware of the reasoning behind it and told them how they can also help to raise money if they want to, then I applaud you. I hope you've also donated what you could too.

But raising awareness and funds for diseases should not be about showing off, or wanting to upstage your mates, and forgetting why you're doing it. It shouldn't be about nominating someone, daring them, calling them a chicken if they don't. Charity is about generousity and belief in a cause not badgering. How many times do you pretend to be on your phone because you don't want to talk to the charity people on the street? Saying I nominate you to do this is also saying I nominate you to give away your money. Something I'm not sure you would say to someone, unless they were Bill Gates or the like. Why not just say 'I'm dong this to raise money for ALS and if you would like to donate here's how?' (Details at the end of this post.)

I know, people go to great lengths to raise money for charities that they believe in but the difference there is that they always stay true to their goal and the reason why they are raising money. Often it's personal and they want to make a difference for someone they care about. Charity is personal, it's about giving somebody that little bit of hope that things will get better with that money. How many of you well up at all the video clips on Children in Need and Comic Relief? Seeing charity offer people a chance.

As I said I am one of those people who is currently relying on charities to offer me some hope. To find answers. So perhaps you can imagine where I'm coming from, when I say don't get swept up in a craze without thinking about the difference people are trying to make. I'm not saying don't do it, post that no make up selfie or throw that bucket of ice water but please do so with a responsibility to the charity. Putting your hand in your pocket, or spreading awareness is much more important. And if you tell your mates how they can help too then even better.

So this does not come from a place of bitterness. I'm not in a tiff, thinking 'this should be to raise awareness for...', or 'such and such is a more worthy cause.' Of course I would love M.E to be recognized on that kind of scale of fundraising campaign. And one day hopefully it will be. Jealousy amongst charities is sad. I simply wanted to point out the nature of charity and how it's something that doesn't deserve to be turned into a dare. So please do the challenge responsibley and mention how you can help. Just in case anyone didn't know, you can donate via text message with the following info, no freezing yourselves is required, unless you really want to.

Text ICED55 followed by £1, £2, £3, £4 or £10 to 70070

Sian

Travel interview with Ali

 Today's post is another interview with one of my spoonie friends, the very lovely Alison, who travelled with her husband and little girl to Palma Nova in Mallorca. I think it's great to get as many perspectives as possible of travelling with a chronic illness and this interview has the added perspective of travelling with a child too.

 

Name: Alison 
Illness: M.E
Destination: Palma Nova, Majorca

Who did you travel with? My husband and my little girl
What airline did you use?
 Jet2.com. We also booked the holiday through them

 

First of all, how was your holiday?
Really nice, the sun always helps my symptoms and it was our 3rd time at the same hotel so I knew everything would be good re accessibility etc.  Was nice spending time with my daughter doing things like finding shells on the beach or being in the pool with her.

 

What was your biggest worry before travelling? And how did you overcome it/ justify it?
I was panicking about how much the travelling was going to wipe me out. I had to try to tell myself it would be worth it & had some tips from friends about how to stay calm!

 

Did you notice any changes in your health whilst away? Good or bad? Any new symptoms?
I always find the sun helps with my pain a bit but then, despite hiring a mobility scooter, I walk about more than I should be doing so end up suffering afterwards.  I always tend to sleep better on holiday which may be down to the sun plus doing too much!!

 

 

How was Palma Nova as a resort/ destination in relation to your illnesses/disability? (Access, flat, close to restaurants etc, quiet)
It's a really good resort for wheelchair or mobility scooter users. There are many places to hire disability aids from & it is very flat. The only problem I found was that there were no flat kerbs in some places on either side of road so if you wanted to cross you could get down onto the road but not over again on the other side! Had to try to remember where the sections were that did have flat kerbs on both sides! Otherwise would have to drive on the road which with how they drive over there I didn't fancy!The beach is good as it has a wooden platform with a covered area which you can drive straight onto & leave scooter on (in my case).

 

How did you find attitudes/perceptions towards you by other travellers and from the locals?
Really good mainly. As I am young I am used to getting looks from people when I am in wheelchair or scooter but didn't notice it too much.  People were helpful regarding opening doors & passing me stuff etc if I was on my own.

 

From your experience(s) what piece(s) of advice would you pass on to other spoonie travellers?
Always use special assistance at the airport if travelling by plane.  Makes such a huge difference & makes travelling not seem as daunting or scary.  Also make sure you find out as much as you can about the resort/accommodation & how accessible it is if you use walking/disability aids.

 

What items would you not travel without?
Painkillers!! Heatpads, which I used on my back during journey to help with the pain.  Ear plugs to block out excess noise & eye mask for light sensitivity or for when need rest.

 

What are your favourite holiday beauty products?
Not sure if classed as a beauty product as it's more a necessity but I love Malibu suncream, the smell is yummy! I use anti shine face sheets from e.l.f on an evening, I have to take a few lipsticks & eyeliner, anti frizz hair serum to try to tame the huge holiday hair, I always take some Elizabeth Arden 8 hour cream & will never be without nail polish remover pads & a few polishes!

 

If you were to go on holiday again what would you do differently?
Not panic as much about the travelling as it wasn't anywhere near as bad as I expected!

 

How are you after the holiday?
It took it out of me for a while after getting back.  We had a late flight home plus a horrible experience when the plane was about to land & the landing was aborted due to the weather so that really freaked me out & probably flared my symptoms too.

 

Do you think that despite all the extra 'hassles' of travelling as a chronically ill person it is still worth it?
100%. I would definitely rather have a holiday than not.

 

What are the biggest stresses when it comes to travelling with children when you're chronically ill?
 For me, keeping them safe & making sure they stay with you whilst at airport.  I have always travelled with special assistance so she either walks with us or sits with me on wheelchair. Thinking about all the stuff they will want to do while you're away & knowing you won't be able to is a bit stressful but is more upsetting!

 

Do you have any tips or methods of getting your child more involved with packing etc?
She tried outfits on before we went so she knew what we would be taking & she would be wearing whilst there. She helped fold stuff up & put in case! But other than that, not really. I always pack as much in advance as possible.

 

What are your top tips for keeping them entertained on the journey?
Buy them a kids magazine, they usually come with a gift of some sort & have various puzzles games & stories in.  Colouring pads/pens. I got her a colour your own pencil case in which kept her occupied for ages. And snacks/sweets!

 

 

How do you balance keeping your child entertained and having a good time but also making sure you get the rest you need? Is this something you feel is important to consider when choosing a hotel/ resort?

Make sure you have someone else with you who can do stuff with them!!! ...Our hotel had a children's club which she joined in with a few times but she was quite happy going in the kids pool & we could be at the side to keep an eye on her if didn't want to be in the water.  She was also happy on the beach making sandcastles so I could sit next to her & chill while she did it.  She is 5 so it was much easier than in previous years as she never stayed still! I would preferably opt for a hotel with entertainment so they can join in with kids club in day then disco & games at night rather than try to find things to do with them outside of accommodation.

 

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, encounter any problems about this?
No transfer was (& has been on previous holidays) included in holiday package & they take us on a coach so always room for wheelchair in with the baggage.  If we booked separate flights & ,accommodation though we would have to arrange own transfer.

 

Thank you to Ali for taking part and offering up some insight into what it's like to travel with a child in tow. Although her little girl is angel and very well behaved. You can read more about Ali and how she manages motherhood with a chronic illness over on her blog beingamummywithme.blogspot.com