Taking Chances

Source

Over the next two months things are about to get hectic. Admittedly things already feel hectic and that's from just trying to haul my ass through the pain of each day and make it out alive. On top of that I've been trying to change up my room. Hey I need a change of scene. I bought new furniture way back in January and only in recent weeks has it made it's way to my room. Trying to go through everything and throw away all those bills from 2010, and socks that are sadly not going to be reunited with their sole mate (see what I did there) has been arduous. It's frustrating wanting to get things organized, especially when you are surrounded by piles of stuff that has no place until you can put the new furniture in. And all that clutter is somehow oppresive and has it's own kind of noise that creates so much discord. I just want to get it done! However of course it's not that easy. I need to pace it. Doing too much on one day leaves me unable to do much apart from stare at all the stuff yet to be sorted for the next few days.

However this needs to be put on hold a little longer as things outside of the bedroom are about to get busy. Although ironically during most of that time I will actually be confined to my room a great deal more to be able to reserve as much energy as possible to cope with these events. In the next 6 weeks I have 2 big events going to watch Strictly Come Dancing and a holiday to Portugal. And after that it's my birthday. I feel a little overwhelmed but at the same time incredibley grateful. I know it's not going to be easy. I know things could go glitterballs up. I know it's going to take every little scrap of energy and I know it's going to give me horrendous post exertion malaise, making me very unwell. You should have seen me the day after getting the news I had Strictly tickets, fighting for breath and feeling like I had been ran over by the Strictly Express. I also know that maybe it's not the best thing to do in order to preserve my health and to try and avoid further setbacks. But I have said it before and I'll say it again life is still for living. Each opportunity is a gift. A chance to have something more than a closed off world of drawn curtains, high pain levels and mobility aids. Where all you see in a week is 2 or 3 people and generally that's just to give you some kind of assistance.

 More than ever lately I have felt the heartache of how small my world has become. How separate I feel from the real world, the world just behind my closed blinds or just downstairs. I spend so much time listening to all that's going on and not being able to be a part of it. Yet my resolve to try and make this life as good as it can possibly be for myself is at the most determined it's ever been. And that's saying something. I've been of the opinion that it's our own responsibility to create our own happiness and give ourselves chances for a long time. Possibly because I've spent more than half my life now with one chronic illness or another. Or perhaps as I have previously suffered from depression, anxiety and self harm and told myself countless hideous untruths about how worthless I was and that there was no point being alive. Maybe that has given me a greater perspective as well as a healthy respect for my mental health.

People say wow you're lucky and I'm not sure how much I'd agree with that. Yes I have a horse shoe in my room and a four leaf clover in my purse but I don't feel lucky. I'd rather my luck granted me good health and more independance, the ability to work and be more social. These opportunities have only come about though because I applied or booked. I put myself in the frame to have these chances. And chances is the right word, because they are big chances. I'm taking a gamble and hoping that on the day I can get out of bed. There's a high possibilty I won't be able to. That they'll go the way of many other failed attempts and literally all end in tears. Many will say I'm setting myself up to fail. I see it as setting myself up to try. And being a tryer is one quality I will always admire in myself.

Like I said I know there is a high chance things could not work out. I have a full understanding of the reality of the situation. There are many precautions and stratergies that go into any opportunity. Planning to the nth degree to make things possible. And like I said I am fully aware of the reality that things might not work out, despite everything being carefully planned out. As well as the effect such mamouth efforts will have on my health. You can read more about how I manage to leave the house from time to time and the effects it will have in my blopost let me put this in a way you might understand, which I have linked below.

Living with a chronic illness and knowing there's no cure or effective treatment I think you become even more aware of how unpredictable life can be. You feel that most of your adventures are probably behind you. That your life will never resemble that of the average human being again, or what we perceive to be average/ normal. It's a mental health disaster zone in many ways. But the human spirit can be a powerful thing. Somehow you find the strength to get through each pain filled day, somehow you adapt and find ways to cope. Yes, you cry and you curse and ask why this happened to you but somehow you find grit and determination to tackle each obstacle that is thrown at you. It's amazing. I have the upmost respect and admire everyone that gets through each day with a smile on their face and hope in their hearts. Hope is so important. And I think that by giving myself these opportunities it is a way of retaining that hope for me. I have to find some kind of life in this half life existence. I can't have the every day freedom and pop to the shops when I want. Nor work in my dream job as I trained to do. To leave the house at all it's in a wheelchair and with a family member. I'm the woman still going on holiday with her parents, which I didn't expect to be doing at this age, nor does society expect it. However it's the way things need to be to at least make travel somehow possible. To quite literally broaden my horizons. I can try and go after the extraordinary every now and again. As the saying goes "Shoot for the moon, even if you miss, you'll end up amongst the stars."

Sian X

Related  posts:

Let me put this in a way you might understand explaining how mitochondria work and how being able to leave the house on occasion doesn't mean we're better.

Holiday Get ready with me how I prepare myself to go on holiday, step by step from 6 weeks before to leaving for the airport.

Forget the boom and bust? Another post on taking chances and making the most of opportunities if we are able.

The Memory Jar A way of documenting all the special little moments and trying to seek out the good, despite the often bleak existence of chronic illness.

  

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

 

 

 

 

Travel interview with Hannah (including long haul)



copyright: Hannah Wallace



 

Today's post is a spoonie travel interview with my darling friend Hannah, who was a very lucky lady recently and travelled to Mauritius. How divine?! As this was a long haul trip, (as well as drawing from some of her other long haul trips) I added in some more specific questions relating to how best to cope with travelling long haul as a chronically ill person. A few people have also asked for this and fingers crossed this is something I hope to do in future. The thought of it does fill me with apprehension, so I personally will be taking notes.

 

Illness/ disability:
Ehlers danlos syndrome, POTs, Fibromyalgia, Bursitis in my hips due to EDS, ME and a number of allergies

 

Destination:
Mauritius

 

Who did you travel with?
Partner

 

What airline did you use?
Air Mauritius

 

First of all, how was your holiday?

 

It was amazing, beautiful and relaxing

 

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

 

Obviously getting more ill on holiday is always a concern. For me things like dislocations, pain, stomach issues and fainting are a constant worry but I try to think I have good medical insurance and I'm with someone that will really look after me. Plus all these things could happen at home too. I've been unwell a long number of years but I remind myself that I'm lucky I'm able to do this with these illnesses. I try and look for the positives. I think being organised is the key, having plenty of help and plan, plan, plan. I think it's natural to worry about things but if I choose to embrace this worry I'm in control. Also I'm very aware how stress affects the body so I try and be mindful about that.

 

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

 

I had body temperature issues and struggled regulating it. This always happens when I travel as POTs can be iffy in the heat but I'm very mindful of this, so I work with it daily. My joints flare up if it's too hot as it can make me more stretchy, due to the defective collagen in EDS sufferers. Over all my health was all about the same as it is at home, besides bite reactions, a whole mouthful of ulcers (which is very normal for me) and a few nasty headaches. I tried to generally plan well so if I did more activity I made sure recovery was planned after. I realise it sounds not great but it was ok as it was not much more than what I experience at home.

 

How was Mauritius as a destination in relation to your illness/ disability? ( Accessability, flat, close to restaurants etc, quiet)

 

The resort was great. We stayed at the Westin Turtle Bay hotel and I was very impressed overall by the Westin group, especially concerning dietary requirements they were really good. The food and restaurants were over all really good.  It was very accessible as the hotel had been rebuilt due to a recent fire. I would recommend the place. The hotel was quiet too and plenty of space. One day they told us there was going to be some building work near our room and so they moved us to a quieter area.

 

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

 

Other travellers were really nice. Obviously people wonder what's wrong, especially as sometimes they see you walking small amounts etc and others you are in a wheelchair. I think at the end of the day it's natural curiosity. I guess it's how conscious you feel about that. For me personally I'm not too worried. I'm just so appreciative I'm having these experiences that I think screw it. Obviously it's not always been easy to have this attitude, I've lived with this 15 years and learned you have to choose to adjust or it'll torment you. There's always going to be a few twats in life and I have adopted a no twat policy in my life. And to be honest if someone was rude I'd say something back. You do get nosey people but it's the same at home. The locals there were very nice and kind.

 

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

 

I think it's a personal thing to decide. Obviously a big factor is how unwell you are how well your illness is managed. Like any risk assessment you have to weigh it up. For me it's worth it. But it's been trial and error over the years. It's about being realistic with it all and prepared. Life is full of cause and effect, it's finding the balance within this. Most important is choosing to go with people you trust and knowing you'll be well supported and looked after. If you don't have this it wouldn't be a good idea.

 

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

 

Good planing all the way is the key. As well as maintaining your routine while away is a good idea. It sounds very controlled but then this allows for flexibility with things. Be organised take the important things from home that keep you comfortable. Be researched on where you're staying even down to the small details, especially with diet stuff. Try and keep any dietary requirements as you do at home. Tummies abroad are definitely more prone to things so by not upsetting this to much you help yourself. Compression socks are essential for flying even if it's only an hour. Make sure they are put on at least an hour or two before the flight and leave them on for an hour after landing. Keep hydrated. Don't wait till your gasping for a drink and have it in a routine as our bodies respond to rhythms. Re-hydration pills are a very good thing to use regulary on holiday especially because in the heat our bodies can react and are extra sensitive to heat. If you can't tolerate booze don't do it I know it's boring but it's not worth it. If you can do it cause I bloody would :))). Keep up your salt levels too, to help muscle cramping and restore anything lost through needing extra hydration or sweating. This all sounds boring but have fun in the ways you can because these moments are so precious. Best advice ever is don't worry what others think end of full stop. ( not the easiest one ) but it will empower you and free you once you embrace this.

 

What items would you not travel without?

 

Aside from medication I wouldn't travel without my supplements I've found things which help and I keep this up while away. Salt is a must for me as I have low blood volume, so I need to put it on my food and take it off my hand regularly to help stop me fainting. I use Redmonds Real Salt, the sea salt. Re-hydration pills. Noise reducing headphones. A super soft neck pillow. My own blanket for the plane. And super warm socks. My silk pillow case and silk dressing gown because these make me feel good. My yantra mat. My iPod and kindle. Pen and notebook. Ghds. Lipstick. A good face cream. A Mala, which I wear. A few crystals, cause I'm crazy. And Miffy of course ;)

 

What are your favourite holiday beauty products?

 

My fave beauty products are not the most luxury but are necessary. I suffer with prickly heat so the Rona Ross prickly heat wash and lotion and skin repair lotion work great, they aren't super expensive and I never travel without them. Other essentials are: Aloe Vera gel. Hydrocortisone (you never know). D pantenol which is great for bites and burns. Marula oil, I love this stuff and use a few drops under my moisturiser. A good cleanser is essential for getting the day off, I tend to take Liz Earle on holiday as I find it the best staple it removes every thing properly. I use Liz Earle face mask that's hydrating too great for after being in the sun or I love aromatherapy associates rose one they work !! Lip balm. Carmex. Good hair protection, this time I used Aveda spray.

 

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

I don't think I'd do anything differently as I'm fairly well practised. I think I just need to keep being mindful of my limits and be cool with it.

 

How are you after your holiday?

 

Well I didn't expect to feel great after the flight but that was as expected. I did get a minor ear infection which has been a pain but I've made sure I've really rested up after.

 

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

 

I always get a private transfer from the airport but I know people who don't and they have found it ok and people mostly helpful.



Copyright: Hannah Wallace

 

What do you pack in your hand luggage to help you survive a long haul flight?

 

Salt (as explained above). I get coconut water at the airport from Pret or Boots one to have at beginning of the flight and one for just before landing as it's isotonic so it's great for re-hydrating. And I buy loads of water after security so I have enough for the journey. Dark chocolate. Some form of gluten free energy bar and some crackers of sorts. A warm blanket I fold it up and sit on till I need it. Thin gloves. Neck pillow. Warm socks. Lip balm Hydration face spray. Moisturiser. Small hair brush Kindle. iPod. Noise reducing headphones. Mala beads of course ever the yogi. My own Silk eye mask. A bottle of aromatherapy associate breathe oil to sniff and some lavender oil. This time I took small post cards to colour in. I layer clothes so usually take an extra cardi or jumper and pashmina. My own water bottle. Wipes for hands or face. Tissues. Sunglasses for reducing light and headaches. Walking stick. And finally spare pants!

 

What is one thing you should know about flying long haul that is a great tip but a lot of people might not think about before hand?

 

Wear flight socks to help your legs. Also find out if the plane is full. If it's not you may be able to get a few seats to lie across which really helps when flying economy. Don't drink totally cold water, drink it at room temperature or warm it shocks the stomach less If you drink herbal tea take a few bags they'll happily give you hot water.

 

How do you cope for such a long time on a plane?

 

If you haven't flown long haul before becoming ill it's probably not the best time to try it unless you need to for some reason or feel you can cope with this. I cope by making a schedule of sorts. You know food is served fairly soon when you take off and another meal towards the end. Also lights will be dimmed during night hours at some after the meal service for sleep. So I try to make a plan such as meal service, movie, drink, nap, drink, meditation, drink, nap, listen to music, sleep relaxation app. Sometimes I watch two movies but I try to sleep. I find with pain etc it's often harder to sleep and it's frustrating when I see others snoozing away. So if you're lucky sleep as much as you can. But if I'm struggling I try and do it in blocks of 40 mins or an hour and half as these are sleep cycles and you tend to not interrupt sleep cycles. It's never going to be a bed of roses but I highly recommend trying to plan it. Also be aware in sleep times they tend to heat the plane up more so you may suddenly feel warmer, that's why layering your clothes is great. Keep hydrated, it's essential even if you need the bathroom more often. If people around you are asleep you can call a steward to help and take you. And you will always be seated near a toilet and if you're not ask. Making sure you relax properly will also help, which is why all these new relaxation apps they have are great. Noise reducing headphones are definitely a help too. Making a plan really does help because it helps break up the journey too. Move your ankles and feet too, this helps blood flow. If you're ill and travelling alcohol is not a good idea. Wear comfortable clothes you can still look good and comfy but it really makes all the difference. I used to worry saying exactly what I needed from the airline etc but I've learnt being clear with them is good. Chat to the special assistance team of your airline before you fly to arrange what you need and discuss what is available.

 

How do you cope with layovers for connecting flights?

 

Find a quiet spot to relax and get some rest. Having access to an aiport lounge can be a big help. If you don't have access to a lounge then head phones that reduce noise and an eye mask can help you get some quiet. Find a floor or row of chairs where you can stretch out. This can be helpful, not the best but if needs must. Assuming you have people with you to help watch you and your bags. If you're travelling alone it could be worth putting it out there and asking if they could put you in a lounge as special assistance at the airport will help you from the plane and later on, onto the next plane. Again keep hydrated.

 

 

How do you help manage jet lag?

 

I think depending how well the flight goes for you it definitely affects jet lag. But I use extra melatonin to help me. Magnesium oil is great if I can't get a bath. Rest more after your flight and go with the flow, listening to your body. Also when I arrive somewhere I lie on the floor with my legs against a wall well supported and padded this helps blood flow. I do this daily anyway but it's a helpful inversion. Make sure you get up slowly! If I arrive somewhere and they have a bath I will have one before bed. Once I'm back home I will always have a magnesium bath with flakes. Trying to keep to your normal times definitely helps too, although not always easy.

 

What do you find are the biggest challenges flying long haul as a chronically ill person?

 

I think the biggest challenge is coping with pain if it flares up, that's never easy. Being sat for that long with your legs low is a bummer too. That's why even if I'm shattered or painy I like toilet breaks as I know it's moving blood flow. It's the unknown that can be our biggest worry but like my mum always this is the risk you take. I think the time factor is never easy as it's a long time, we tend to do much shorter things so it's demanding, which is why you need to take extra care.

 

In your opinion is it worth paying extra for an upgrade to better seats?

 

It's definitely worth paying for the upgrade if you are able to. Having your legs elevated and more space is a very good thing, you do notice it makes a difference. And if you're not able to my tip is checking if the plane is full or not and asking if you could move to an empty row, so you could stretch along a few seats. I think making sure you meet your personal needs is most important.

 

A big thank you to Hannah for taking the time to do this interview and sharing with us a bit more about how she coped on holiday. It's much appreciated Han! Also a big thank you on the insights into how to cope on a long haul flight. I'm hoping they might come in handy in the future. Hopefully soon I'll have a tips post on more things to consider if you're planning a long haul trip. If you have any specific concerns about travelling long haul that you would like to see mentioned then please leave a comment below and I will do my best to answer them in the tips blogspost. Thanks again Han!

 

Sian

Holiday Get ready with me

Copyright: Sian Wootton

Here's my get ready with me holiday post. But one with a bit of a difference, not just a get ready with me for a day/night whilst on holiday but in this post I'm going to go into detail about how I prepare my poorly body to go on holiday. Covering everything from about 6 weeks to go until I leave for the airport. Although I'm writing from a chronic illness perspective hopefully this post will be useful for the organizers and planners out there too. Or anyone wanting to be more organized when it comes to holidays.

 6-4 weeks before

Admittedly pretty much as soon as I've booked a holiday the next thing my mind turns to is clothes. I can't help it! And so the internet browsing amps up a notch, looking for some pretty new outfits. However it's good to see what you already have too. I like to have a trying on session just to be sure things still fit and if they don't I know then I need to look for alternatives. At this point I start thinking about what I want to take with me and the different looks I want to go for. I love to scour instagram and Pinterest for inspiration.

Copyright: Sian Wootton

I like to mix and match possible outfits. Often I will lay them out on my bed (as in the photo above) and then see what other pieces will go with that. This is a good tip for if you need to pack light or pack a capsule wardrobe. It can also help you think about any other pieces that you might be missing. Or items you want to get to complete your holiday wardrobe. Get shopping.

Travel insurance- I make sure my travel insurance is still in date and if not that I take out a new policy. I tend to do mine online through the post office. It's handy because it allows me to input all my medical conditions online and not need to phone up.

If I'm going to Greece then in the weeks before I go away I like to brush up on my Greek and get used to speaking it again. I'm by no means at a level where I can have a long conversation but I can be polite and order in restaurants/cafes. To me this is something I enjoy doing and it makes me feel accomplished, at a time when I can often feel unaccomplished. Plus you're not just the person in the wheelchair but you're the one that can speak Greek too. I would recommend to anyone to learn a few words of the language where they are holidaying. It's polite and it's fun. Also because I'm in a chair there are times where the need to say thank you increases, so it's nice to be able to do so in the native tongue.

3 weeks before

Medication- Time to check if I have enough medication to take on holiday with me and if not that I order more. I say I but this is mainly my Mum then later on I will count out the meds I'm taking for my own piece of mind.

 Pre holiday skincare routine- I use some more moisturizing treatments on my hair to get it ready for the heat. I try my very best to up my moisturizing too but I am generally rubbish at remembering, then moan when I look at my legs and they're scaley. I love the moisturiser sprays you can get now as they are so quick and easy. I love the Vaseline Cocoa one and the Palmers Rapid Moisure one too.

2 weeks before

I force myself to fine tune my choices of what I'm taking, especially in relation to clothes. I know that seems crazy early and the chances of changing your mind about 20 times in those remaining 2 weeks are high, but I at least like to have an idea. I will then separate what I intend on taking either at one end of my wardrobe or on hooks. It's good to check everything is clean too or whether it needs to go in the wash first.

Make a packing list- I list everything I am going to take and put it into sections, such as clothes, toiletries, make up, beach bag necessities, medical essentials and I write a separate list for hand luggage. I like to keep my lists handy so that I can add to it as I think of things, which is all the time. It's staggering how much you need to take with you.

I also make a 'last minute packing list". This is a list of all the things I can't pack until the night before or day of. Mainly these are medical related items like my heat pad (yes I take it with me everywhere, regardless that it's a hot country) that I may need until just before we leave. By making a list I know that these things that could very easily be forgotten will definitely get packed. On this list you could also put last minute things you need to do before you leave such as checking all the windows and doors are locked and that you have all your travel documents and passport.

Once I have written my list I then start to pull everything together and put all the things I will be taking together in one place. As I collect each item I  put a tick next to it on my list so that I know I have it ready to be packed.

To be extra organized and save myself some time and energy once I get there I like to prepack my beach/ pool bag with my beach towel, sunglasses, book etc.

Currency- If you're going abroad, you'll need to order foreign currency. This can be done online for ease but sometimes there might be a minimum amount that you can order so you may need to plan to go to a post office or currency exchange desk. I think it's best to do this before hand rather than at the airport because you get a better rate and therefore a bit more money to spend.

1 week

Sort out plane "entertainment"- In my travel anxiety post I wrote that I like to have a playlist of relaxing music and guided meditations to help me should I start to panic. So during this week when I need to stay as calm as possible I go over my playlists and add newer ones, testing to see if they actually do help keep me calm or not.

I'll also browse Audible for a good audio book to download, that I'll be able to listen to on the plane. I found this really useful as it kept me occupied but didn't make me feel travel sick like reading a magazine or book would.

5 days before

Copyright: Sian Wootton

Finalize handluggage- Well the bits that are not last minute items anyway. Again I know it seems early but it needs to be done. My handluggage always weighs a tonne, because it has so much in it. All my medication and various bits and pieces to keep me as comfortable and healthy on the plane. Plus I always pack a bikini in there, just in case my luggage goes missing. I struggle finding them in this country never mind a foreign one.

Rest!! The most important step of all. Generally the 2 weeks before I go away I try my best to make sure I have no plans, so I don't have anything to recover from. This means I can try my best to conserve that energy for going away. However in the 5 days before I go away this is when that resting steps up even more to being really restrictive because I am trying to make sure I get myself onto that plane in one piece.

Last minute beauty pamper- I try my best to get myself looking a bit less ape like and defuzz.

2 days before

Time to pack- Or in my case get someone to pack for me as I supervise and tick off each item on my packing list.

Day before

Copyright: Sian Wootton

Lay out travel outfit- I try to be as organized as possible, so that the time before I go to the airport is as smooth running and stress free as possible. So I will lay out my travel outfit and have it all in the one place, including any underwear, socks (usually of the attractive flight sock variety) and shoes.

Copyright: Sian Wootton
Apologies this photo is so poor, it was shot in bad light

I will also lay out anything else I intend to use before I go. Again to make things as simple as possible. So I put any skincare or haircare products and make up I want to use, as well as my mirror on my nightstand for easy accessibility.

Cross my fingers and hope for the best- Even though I know I've tried my best to conserve my energy as best as possible to try and be able to go, I also know that sometimes that is not always enough. That my illness will get the last say on whether it's a green or red light.

Morning of

Assess- Sadly sometimes regardless of how much I have tried to prepare myself to go on holiday having a chronic illness means nothing is ever guaranteed, so the very first thing I need to do on the day of going away is assess whether I am actually well enough to travel. Am I well enough to even make it out of bed? This moment is critical and can be touch and go for anyone with a chronic illness. I would advise that you be honest with yourself and make a fair judgement. Only you know what you are capable of. Remember to let others know to check in with you that all is ok to actually go ahead. If all is ok then I go ahead and do the following steps:

Pack those last minute essentials- using the list that I made.

Get ready to go-  I get ready at my own pace and as calmly as possible. Stress at this point is really not good, as it's going to drain you of energy really quickly. It's good to remind others of this too. Airports and travel can make people extra stressed but you need to put yourself into a bubble and just focus on each step you need to take to get yourself onto that aeroplane.

Final checks- Go over my list one last time to be reassured I have everything I need and done what I've needed to.

Take a deep breath and go- Off you go enjoy yourself. I always remember to give myself  bit of a pat on the back at this point too and say well done, as well as be very grateful that i'm actually getting this opportunity to travel. Like I said it certainly isn't guaranteed that you'd be able to go so having a few moments of thanking your lucky stars I feel is a good step. on the journey to the airport I always try to rest my eyes as much as possible and use up as little energy as possible, because once I'm at the airport I'm going to need to focus. I also try to reman calm and take deep breaths to keep any travel anxiety under control. You can read my post on coping with travel anxiety here.

For more detailed information on any aspect of travelling with a chronic illness I have a whole series of posts, which can all be found by clicking this link, or by clicking on the travel tips page in the right hand column of the blog layout. There you'll find posts on everything from researching a holiday to how to cope during a flight. You'll also find interviews with others about their experiences of going on holiday as a chronically ill person.

My next post will be an interview with Hannah with an emphasis on long haul travel. 

Sian X   

 

 

 

Let's talk about me

Hi everyone,

First of all I want to say a very big thank you for the amazing response to my last blogpost Let me put this in a way you might understand. I am so humbled that so many people read it and for the lovely comments I recieved. Thank you to anyone that shared it, inparticular those that shared it with family and friends in the hope that they may understand what it's like living with M.E or chronic fatigue as a symptom. I really hope that it helped.

It's been a little while since I've actually done more of a chatty post and actually discussed how I'm getting on lately, so I thought I'd take the opportunity to do so now that I have quite a bit to say. You know what it's like, living with a chronic illness you spend most of your time feeling like you are just going through the motions, trying to keep your head above water and get through it. Admitedly I have been doing my fair share of this for a good while now. However it got to the stage a couple of months back when I thought stop! I'm actually tired of feeling so helpless and hopeless. I think some of this feeling was bought about during May and M.E awareness month, because it becomes even more of a focus and you see so many posts and tweets. In no way is that a bad thing, I commend everyone that really made the effort and put what the could into raising awareness. However as a sufferer there's only so many of those posts you can read and not be reminded that we have it tough, and not many people out there are offering us any hope. Which then leads on to thoughts of how crazy and neglectful that is, when there are hundreds of thousands of people who are incredibley unwell. It makes me sad and it makes me angry. Anyhow, these feelings made me think "am I actually putting up with this a little too much?" Let's face it if anyone else felt half as bad as we do for only a day they would probably go straight to the doctor or hospital. Yet because we know we have M.E, we automatically put up with it and think well it's just the old M.E. We're just so used to feeling horrendous and being told that there's not much that can be done for us. I think this can be dangerous sometimes, especially if we develop new symptoms, because we're not immune to other illnesses and conditions either. We shouldn't always put things down to the old M.E and neither should our doctors for that matter.

So I decided to make an appointment with my gp and talk a bit about how neglected I feel. Not neglected by them as a gp practice but because I feel so left out in the wilderness due to the lack of help there is for us in general. It really baffles me how so many people can just be left to suffer and nothing is done about it. It felt good to get things off my chest. My gp decided to run an armful of blood tests, to check how everything was. Or you know whether they still say you're a picture of health (eye roll), which of course they did. My folic acid was a little low which could have affected my fatigue level a bit, so I did have a course of that for a month to help boost my levels back up.

I took the opportunity to share some of the research that I've been reading about online. Inparticular the one about changes in the white and grey matter in the brains of M.E patients. If you would like to read more about this click here. This was one I resonated with, because a few months before I was diagnosed I needed to have an MRI scan because my prolactin hormones went a bit crazy due to some medication and anxiety. However when they did the test they found what they described as lesions and abnormal changes in my white matter for someone of my age. The neurologist I saw was a bit baffled as to why this had ocurred and why I was not having any physical symptoms. Apparently the findings were conclusive with mini strokes. However with my health seeming to be ok, other than my anxiety, we simply decided to change my medication and to monitor any physical symptoms should they arise. I did get retested shortly after my M.E diagnosis and things seemed to have stabilised. However when I read about this research it did make me think about this time and whether this was some kind of precursor for things to come. This combined with an increase in muscle switches lately encouraged my gp to write again to this neurologist to investigate further and find out whether there could be a connection. Who knows when that appointment will be though? I've not heard anything so far. Plus I'm not holding out too much hope for it seen as we're used to things not being that simple. But you never know.

Recently I read a blogpost by Jess at Why is life so lush all about how she had got her mitochondria tested through a blood test. You can read that post here. This blood test is not available on the NHS but is one of the tests offered by Dr Myhill. Jess wrote about how she had had the blood test and sent it off to their laboratory to be tested. Dr Myhill then analysed the results and sent the findings along with suggestions of future treatments that she recommended based on the results, to her gp. I've been reading a lot about mitochondria lately and I think it offers a real explanation as to why we feel as we do and how post exertion malaise is our enemy. Therefore I think getting this blood test would help in a way to have more tangiable proof that something is wrong not just feeling terrible and a whole heap of symptoms. Although part of me does think that mine will come back and tell me nothings wrong, just to bite me on the bum. I showed this to my gp and discussed it with him as I wanted to have his cooperation on it too. To be sure that he would take on board the results and suggestions and help me to implement them. This is not something he'd heard of, however he was keen for me to give it a go if it meant having answers and that he was made aware of things to try going forward. I think having your gp's cooperation on this is important as they are the ones that will recieve the information and who can hopefully help you afterwards. I'm sure some would disagree with it but luckily mine was willing to help. Unfortunately as it's not available on tbe NHS it's quite expensive, so I've waited a little while till I can afford it. Saving up for a blood test is definitely a new one. However in that time the site has gone a bit crazy and had a big influx of patients, meaning they've had to put a holt on any non direct patients for the time being. They reckon this is possibly the result of her new book Mitochondria not Hypochondria. So that was a bit annoying. In the mean time I've ordered the book in the hope that it holds some answers too. I'll be keeping an eye on the website for when blood tests can be reordered.

So that's pretty much where I'm up to lately. Trying to get by but at the same time being so fed up of just getting by. I need to try to stay as positive as I can but at the same time I recognise that getting upset and angry is ok. It doesn't mean I'm hurtling down that depression spiral. It just means I'm acknowledging that things aren't lollipops and rainbows and is it any wonder? It's healthy to acknowledge these feelings and let them out. I think it's a miracle how we're not breaking down more, with all we have to go through. Hopefully soon I'll be back to my chipper self.

I have a few other things I'm looking into to help me regain some control of my life and illness but I'll save them for another day when I'm a bit further down the line.

I hope everyone else is doing as well as possible.

Sian X