Your experiences of holidays/travel after brain injury

Hi everyone, 

We're writing an article on travelling for the next issue of Headway News. We'd love to include feedback from our members, so let us know your top tips and experiences of holidays and travel after brain injury below.

For instance, what difficulties might arise and how did you overcome them? What essential items did you pack? Were there any things you wish you'd known before you left? Were there any particular tips that helped to make your holiday special?

Thanks for your help.

Best wishes, 

Andrew

42 Replies

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  • Hi Andrew.

    I am lucky that traveling is not a major issie. The build up is horrendous though.

    The only way over it is to forget I am going until the last minute. Yes it can be achieved with the help of family.

    The only other problem is the spund in airports. The echo and multi noise over powers me so much that I have to take medication to chill me. This can make me annoying to others as O find everything funny.

    This is a brief discrption any more info needed just ask.

    Pax

  • Sound issues in shiny floored public spaces are overwhelming. My worst (have to run out the door) experience was at a new Pizza Express. The sound of everyone laughing and shouting to each other, the chairs scraping the floor, the cutlery being thrown into boxes, the till, the Muzak, the air conditioning.........argh.........and yes, other people don't understand. It's also hard to concentrate on the conversation at your own table when the intimate conversational details of everyone sitting nearby is just as loud. I'm thinking of writing a book based on all the stuff I've unavoidably overheard recently. (Not really - but there's definitely enough material there!)

  • Its even better when you end up joining in nearby tables conversation by mistake.

    The blank look on your friends faces is a picture.....usually followed by the next table looking angryly at you.

    Oh the fun times I have had.

    Pax

  • Hi Andrew

    Will this be turned into a booklet like the other Headway booklets?

    I have managed to go  abroad twice without it being a total disaster or having a meltdown.  Before going on holiday I need to include the fatigue factor.  If I take a flight, I will be wiped out for the next day or day and a half.  I have to rest totally.  Do nothing.  I am talking a four hour flights.  That means I lose a day and a half recovering from travelling

    I cannot pack too much into one day and must take breaks consistently

    Noise is also a big issue, it wears me out so I take musicians earplugs and sound cancelling headphones.    This obviously affects where I stay.  It has to be quiet - no children, no noisy neighbours.  If I were to do a group activity holiday I would need to 'drop out' of some of the activities to rest.

  • Holidays are a big challenge for me to manage with my frontal bi.  I get very anxious and stressed in the week before just preparing to go. A bi OT previous made me check lists for holidays compiled personally for me. They have been laminated and I tick things as I pack or do (also has leaving house things e.g timer lights etc). I can reuse them as us a wipeable pen. I have ones for me, my son, my dog and a general one of other bits and bobs plus food if self-catering is required (however I prefer all-inclusive as have problems with the process of cooking).  I use a Sat Nav to get me to the venue and go to places where all activities for my son are on site eg Butlins, Center Parcs etc as I am unable now to plan, organize or manage days out etc eg the beach doesn't have a postcode for the SAT Nav.  My focus is on my son (10yrs) being able to enjoy a holiday. I have to admit that sadly I would rather stay at home with the routine and familiarity of my own surroundings. My son is more independent now and in the safety of the holiday complex he has more freedom to go and make friends etc. I do join him in some activities but tend to stay in our accomodation a lot as my social abilities are limited and very problematic. I don't engage with others. But there is not much at all I can do in a room with little to do! This results in me getting very bored, frustrated, upset and very irritable which is not good for my son. Xmas 2015 for the first time we went away on holiday with fully inclusive meals over the festivities week.  This was to give my son a better Xmas than I could manage at home with meals (especially Xmas dinner), other children to play with and plenty of activities and shows to entertain him. I didn't used to have problems going places or holiday ing pre bi and even would travel abroad on my own.

  • I've been a wuss Andrew and not ventured anywhere in the past 4 years.

    But that's about to change this year ; I'm determined to at least get across to Ireland for a few days !

    Sorry I couldn't contribute this time.  Regards, Cat x

  • Hi there cat your not a woss  your just begin  careful I'm about 3 years after my aneurysm  and I find the thought  of flying scary ! I hope your  feel well lately ! I'm having my moments recently being more down than up ! Take care david !

  • Thank you David.  Please can you tell me what's bringing you down ?  x

  • Hi Andrew,  As the wife of a BI person, I find travelling very difficult now so we tend to go on coach trips where there are other people around.  On our trip last year   (a cruise) my husband got lost every time he left me to go to the toilet.  Couldn't find our cabin and even if I wrote the number down for him, he forgot he had the paper.  The worse thing of all was when he went to the toilet in the airport in Tenerife and presumably came out of a different door,  I couldn't find anyone who spoke English, the airport was heaving and the plane was almost finished boarding.  We only just made it so never again.  Insurance is also a bit problem as he has other medical problems too.

    Janet

  • Well.... where to start ... 

    Travel insurance was an issue - but a well known high street pharmacy has insurance that covered ( covers ) me.

    I was scared the first time I flew after my cvst - but travelled with friends  to Portugal for 9 days last May ( one of whom is a nurse so I felt a bit "safer" ) . Holiday was generally good - though I was still ( and still am ?) a bit stroppy and not always best company. I did need to go to bed much earlier and spend some quiet time - was pleased not to be "in charge" all the time. Wish I had had better explanation for my moods but tried to enjoy the things we did .... DID go off on my own one day because the others didn't want to do bus trip - was later pleased with myself that I could still be independent.  No alcohol when the others were indulging was hard :-( 

    Since then ? travelled to South Africa on a tour ( profile piccie taken just after doing the Devils pool at Vic Falls ) with a company that does adventure tours. Was concerned a bit before - lots and lots and lots of lists and questions - but had a great time. Planning I would say would be the key - but then it always was for me ..... I opted NOT to join in a few of the optional activities as I needed to rest / have massage / sleep - but that was fine. Was worried about all the "what if" situations - best thing I got beforehand was a great ID wristband - one that has a slot for folded paper with many details on - condition/drugs taken/hospital and consultant phone numbers etc .... It helps make me feel a little more confident about going out and about ...  because "what if" nothing bad happens .... I'd be stuck at home wondering why I didn't get out there.

    Making sure I had/have enough of the right drugs with me ... and prescription in case customs anywhere want to know what they all are. 

    LOVE my good earplugs and dark eye mask - so I can sleep almost anywhere. as well as my relaxation cd on ipod and phone.

    Taking the Transmongolian railway soon and staying in China for a couple more weeks after. Heaps of preparation and plenty of lists but trying to remain calm and have factored in some "rest days" on the part of the tour I had prepared for me. 

    Before my acute CVST in Oct 14 I had planned to take a whole year out but can't do it the way I wanted ( ie rent house out for a year) - I'm going to do it in chunks of a few weeks here and there ...... Next time I may have to purchase and take a portable INR testing machine if still on warfarin - but I am not going to let the blood clot take away my travelling if at all possible ( lost my partner and job) .... 

    Not sure if any of that helpful ........ 

  • So happy to read your post and all that you're achieving. It's given me hope :) 

  • Hi Andrew,

    Take several photos of where your car is left parked at the airport!  I spent nearly 2 hours walking with a case rolling behind me before I finally flagged a bus down who kindly called out car park security who kindly drove me around and around until we found my car LoL  Was not one of my greatest moments!  Thankfully I had dates in my bag so munched on them while we looked !   Felt such an idiot.  He said it happens all the time although difficult to tell how polite he was being!   I couldn't quite work out what would happen if I never found my car again.  It was all a bit other worldy!  I can laugh now.  My health and memory is much better now so I'd like to think it wouldn't happen again......

    Take calming music and set of headphones so you can plug in anywhere and everywhere if you feel stress of noise, busy, large echoed bright white airport or transit areas. 

    Take sunglasses to block full sunlight which can be intense if you have been inside for a long while.

    Take woolly hat for the plane - if the air conditioning or light is blowing down or beaming down on you - put your hat on over your head and eyes, the warmth and darkness offer a protection to induce a calm state. 

    Surround yourself with lovely people on your first holiday to make the travel away worth it and a positive experience to repeat rather than avoid.

    Listen to your body while away - if increased activity and stimuli have exhausted you - sleep - don't over plan whole days but plan for half days and see how you feel as you go.  Much better to enjoy a little very much than to do a lot and not enjoy it.

    Best

  • headwayuk aug 2012 went to visit my friend, i was living in west sussex he lived in kent. everything was fine, it had only been 6months since my stroke ( left with weakness down the left side but to look at me every thing seemed ok ). going there both trains were quiet, coming back from kent to victoria the train was quiet, but the train from victoria to bognor regis was noisy.

       that was the last time i travelled or even went out on my own. gradually my mental health deteriorated to the extent the extent where my wife could no longer deal with my mood swings.

     i have been to visit my daughter in dubai a couple of times but found the travelling hard going so no longer go.

       we do go away but travel by air no longer than 21/2 hrs max. i find i get tired very easily but push myself for my wifes sake.

       being ex forces my interest is in military history, mainly the first world war and would go away on holiday with a load of strangers.........keep well away from strangers, its bad enough ive got a new psychiatrist, was just starting to open up to the old one, only took about 3yrs.

       so if we re going on holiday or away for the weekend , it needs to be properly planned.....any deviations and im one unhappy chappy

  • I've done a few plane journeys now and every one of them have been fine but my top tip would be to try to relax about going and have faith in your NS, if they say it's safe then surely it must be, I mean after-all we have allowed and trusted them to operate on us and they've known what they were doing, so take that as a guide to build your confidence up and try not to put off til tomorrow what you can do today...get a holiday booked, what will be will be! Yes it's a terrifying thought after having surgery to the head but then so is being alone sometimes, as is being in a large group. We have conquered lots of things since our lifes were turned upside down so if you feel you would like to travel then I say get it booked! I was a little uncomfortable on the plane but I also have cervical spine problems so I hate not sitting comfortably but make sure you book the exit seats with nobody infront of you(if you're flying economy that is) ;), take a neck pillow, don't hassle yourself with lots of jewellery and tight watches etc, definitely do not wear slip on shoes (as in dolly shoes...even more so if you're a guy) ;) as if you're anything like me your feet will swell and you won't be able to get them back on and that just gives you something else to fret over! Have a walk up and down the plane every now and then to keep the blood circulating and whilst sitting do the exercises suggested, e.g. moving your feet round and round, up and down, etc etc etc, drink plenty of water, remember to take any meds in your hand baggage, use a cross over travel bag with different sections for passport, travel documents, purse/wallet, a little description of what your ailments are etc, do not put them all in one pocket incase you get brain fog and pull them all out and drop something, take a few little snacks incase of fatigue (pringles work for me....but that's anytime) haha, along with old fashioned boiling sweeties for sucking on take off and landing.   Oh and also, get in the mind set that as gorgeous and lovely as babies and small children are, if they start crying or making a fuss it won't bother you as they have the right to be on the plane as much as you do! Do draw the line tho at older children kicking the back of your chair but don't get the "head injury" strop on, remind yourself there are ways of speaking nicely to people! ;) If you worry too much about what to take, how much stuff to take etc etc, how you will manage, try to leave packing until the week before you go(but remember to order enough medication) because if you pack too soon you will rifle through the case a hundred times, creasing everything you've already ironed just to ensure that you put that certain little top in and you will drive yourself crazy keeping checking, so make a list of all items as you put them into the case. Try to travel light (says me with the biggest case that even Paddington Bear would be proud of! Give a copy of all your trip details to a trusted family member or friend including flight numbers, times, dates etc, along with hotel names and dates at which you will stay at each hotel, include a list of all medication you are on and make sure you have filled in your emergency contact details inside your passport (it won't be needed but you will feel better for it), take a crossword book(if your eyes and mind allow) incase you get bored, watch a film to keep you calm and to pass the time, never be afraid to ask cabin staff for a drink when you need it but do not be one of those who chats all the way to the poor passenger sitting next to them....that's an absolute no-no! ;) And certainly do not try to feed the guy sitting next to you yoghurt (that's what happened to me...a guy started firing a teaspoon in my mouth and telling me how tasty it was, I'd left it as I don't eat yoghurt...most inappropriate, he actually lifted my headphones off my head to talk to me...I nearly got the "head injury strop" feeling but thought oh well at least after everything I have been through I still know thats inappropriate)!!! Ladies take your make up bag and have a little touch up before landing to make you feel normal again (if you can be bothered). Always, always, always either take a look at the inflight shopping magazine and dream about what you would love to buy or do actually buy yourself something, I think we are bad at not treating ourselves and then sit back and breath a sigh of relief that you have lived to be on that plane in the knowledge that your NS said you were fine to fly...before of course you start thinking about whether or not your ears will pop on landing and if you have the correct currency for a taxi to get you to wherever once you land ( after all that will be in one of the pockets of the travel bag, along with a little note to remind yourself of your bank pin numbers...of course all jumbled up looking like a telephone number, in a way that only you can decipher(or can you)?! ;) Seriously try to relax about travel and give yourself some credit knowing that you can manage. Leave plenty time to get to other terminals and last but not least...do remember to try on the clothes you wish to take as it would be a real catastrophe to get there and suddenly remember that since your BI you haven't done much and are now two sizes bigger than before and the only thing that fits you is your sunhat (which is of course a must have item! ;) Happy travelling friends!  xx

  • Hi Andrew

    Top tips from me are

    An eye mask 

    Ear plugs or prescribed filters

    Wrap around sunglasses/over glasses (available from RNIB online).

    PLENTY of fluids.

    Other family issues mean that flying is very unlikely and I have to say I'm grateful for that as the very thought of any of our airports fills me with terror.

    I picked up on an article somewhere recently about some places providing a quiet room or space for children with autism and wondered if they would be available for us

    For holidays in the UK I've learned not to give a time of arrival .....more "between 3&7. This removes the pressure of arriving on time.

    The holiday starts as we leave the house having gone through a check list to make sure that things are safe and secure.

    Take as many breaks as you need and enjoy the journey. It's part of the holiday too.

    I absolutely love what @Recoveringh said about it being better to really enjoy a little than try to do a lot and be unable to enjoy it.

    Oh yes one other thing try to leave the first day of the holiday free for recovery from the rigoirs of the journey.

    Love n hugs

    Xoxo

  • Sorry should have added that the check list is laminated and has tick boxes so that we can wipe it clean when we get back.

    Things on the list are

    Medication

    Are doors/windows secure?

    Is the rubbish out?

    Clothes packed.

    All gas off.

    Money and cards.

    There are more items but you get the idea.

    It really helps us and I hope it can help.

    Love n hugs

    Xoxo

  • Dear headwayuk,  obviously we are more than happy to help out the good cause. So could i make a suggestion that we break down very broad questions in to several posts ovet several days. E.g instead of asking "what diificulties arise"  break it down into smaller chunks for us e.g "because of your injury what have you found difficult in planning and organising your holiday?"

    So we can bring in more specific issues like moo196 mentionned insurance hadnt thought of that 

    Plus if you tell us you want help with a set number of questiond over a number of days,  as sad as it may sound - we have something to look forward to :-)

    Keep up the good work

  • Hi sospan, 

    Yes certainly - thank you for your comment it's a really good point and we'll bear that in mind in future.  Doing a series of questions on a particular topic would be excellent - we don't want to come across as 'taking over' the forum but it's always wonderful to have the feedback from our members!

    For this article we know it's certainly a very broad area and the answers have brought in some points we wouldn't necessarily have thought of. This has really shaped our thinking on what to include and I'm sure it'll be useful to our readers. 

    Thanks again, 

    Andrew

  • No problem

    Many of us have trodden many different BI paths and have consequently seen diffeent things on our jouney and are willing to share our experiences.

    Others will probably chip in that aiding the knowledge of dealing with BI is vey close to our hearts - so ask as much as you want.

  • It's good to see you back sospan, or is it me that's been away too long? 

  • Answering like that is a bit like when the wife turns to me a goes "do you remember when ..." and then gets that knowing look and goes "never mind"

    Either way its nice to be reunited :-)

  • :-)  ..... :-) 

  • All I can say, is before I joined Headway, I was nothing. 

    Headway made me a PERSON again, and I have now accepted the 'new' me! 

    I now do a little Volunatary work for Headway, and I hope that through my work, I can help other BI people, start to feel 'Whole' again. 

    Headway is such a wonderful organization, and they deserve all the donations they receive. 

    I am now also doing a tiny bit of Voluntary work in the Portland Ward at Poole Hospital, and one of my roles, is to encourage the BI rehab patients to Join Headway when they leave the Hosptal!

  • Dear Headway,

    Firstly, thank you for attempting to out this together, even reading all the fantastic posts above has given me great ideas and hints and much inspiration. I'm a relative newbie compared to others - so my holiday experiences post bi aren't very extensive, but having been made to surrender my driving licence, I'm the proud owner of a bus pass, and you'd think that was a simple thing to negotiate, but it's not. Considering that I once managed a travel angency (some time ago) and have worked as a holiday courier, I should be able to travel the world unaided.....sadly not. So here's my contribution to local travel:   At first the bus pass seemed like a golden ticket......independence.....mobility, and in many respects it is, but only if you remember you have it. So (laugh here if you wish people, cos I am) several times recently I've gotten on the bus andpaid the fare instead of showing the bus pass I forgot i now own. On a few occasions the bus drivers have looked at me in an unusual 'Are you sure you're entitled to a disabled bus pass?' Sort of way. Don't blame them.....everyone else is getting on with walking sticks, and I'm getting on with walking boots. Sometimes they look closely at the photo to see if it's me......like I'm going to tty to use someone else's bus pass fraudulently. So....I'm on the bus now (fare paid or not) and we're going along enjoying the scenery and I'm trying to ignore all the people that I'm terrified will speak to me, (don't like talking to strangers....more on that later), and I start thinking....where is this bus going? There are several buses which follow the same main road route before branching off in various directions. Where do I need to get off?  Mild panic sets in before I tell myself that it doesn't really matter where I get off, cos I can get off now and another bus if I want to. It's not like I'm trying to get to work or have to meet anybody.....I have all day.....let it go. So I wonder whether to get off or not. Sometimes being brave I might ask a fellow passenger, but only in extreme circumstances. Usually I get off and catch another one, even if it doesn't go exactly where I want to go. Here's the big tip (courtesy of neuro team).......While you're waiting at the bus stop.....as the bus approaches the stop....take a picture of it on your phone. If you forget which bus it is, you have the evidence in your hand. Also - the buses which pass nearest to my home arrive at the stops on opposite sides of the road from different directions. They have to leave the main road route and then follow a circular route before rejoining their onward journey. Unfortunely they don't all follow the same circular direction, so I'm still totally baffled by which direction they'll be coming from and often find myself leaping across the road at the last minute when I see one coming......I jump aboard and ask the driver where he's going.....into town or out of town? Then have to get off if it's not the one I need, and go back to the bus stop (to the amusement of the passengers who have had their journey unnecessarily interrupted). Life's not simple is it? So that should be it right?, no.....I also forget that you can't use the disabled bus pass before 9.30. a.m. (but luckily I'm happy to pay if I accidently board the bus at 9.25 on a forgetful day. And grrrrr........didn't you know that  it's the law that all disabled people must be in bed by 10.30.p.m.? So if I'm lucky enough to have had an evening out (six to be precise in the last eight months), I need to remember that disabled people can't use their bus pass after 10.30. at night, so have to be sure tod keep the bus fare handy next time I'm trying to get on a bus at (whoo) 10.40.p.m. at night. No seriously......I'm very very grateful for use of a bus pass, it's a great thing, but I fail to understand the organisation of some of the routes,lack of clarifty on bus signage, and rules surrounding times they can be used. It would be helpful if the bus stop signs stated the destination. Instead they all display the same timetable. It's anybody's guess which side of the road to wait. I believe there's a secret language that only pensioners and people wearing fur hats and sunglasses understand, and I know I must learn it if I'm to get back to work. (No offence to hat wearers :) intended). That's enough on bus travel......don't start me on train travel.....people who block seats by spreading out all their belongings, people who put their feet on the seat, dirty carriages (eye masks and headphones come in handy), people who eat food on the train that smells strongly .......my problem not theirs - I've become hyper sensitive to smells. I'm going to start a new post on talking to strangers, but need to go lie down after thinking about all this. Have a good day everyone. 

  • Eleanor 3, what a lovely insightful reply. I'm sorry I had to laugh at the "secret language" of timetables. I tried to suss my local train station one out a few weeks ago and discovered theŷ only seem to go and not come back on the one I was looking at, went inside and couldn't see any return one! Remember this is not thenUK  here! But st least I can understand the 24hr thing! :-) except they don't run that long here either. 

    Loved your reply! Shirleyx 

  • I should have added also that I recently discovered that one of the buses which used to stop in my area last - on it's circular route, changed it's circular direction one day without warning. It still went to the same destination, so no problems in that sense, but stopped on the opposite side of the road. Everyone else seemed to know about it??? What am I missing? Ha ha answers on a post card :) 

  • Like a lot of us I have trouble with simple maths on times. Sometimes working out timetabling is a bit tricky - catching the 11 o'click train to get somewhere by 13:00 with a 47 minute journey and a 18 minute bus ride etc.

    The is also the strange self doubt, am i catching the rignt train, i am on the right train etc. There is also the speed of thought - the next train / bus is coming in on platform x and i am on y.  Can i work out how to get there before it departs.

    It would also be very helpfull if at larger locations; mainline stations and airports they allow disabled and vulnerable people earlier notice of the departure gate/platform. It wold stop us staring perpetualy at a departure boaed - not good when you have attention and memory problems and also get us ahead of the stampede when the departure is announced.

    In a few other posts i tend to have episodes where i miss read things by seeing a word and a similar one is read  - i had to go and see a specialist in Queen Square recently i however I read Queen Street. Even after reading the address many times, i got the same wrong answer and ended up miles away from where i wanted to be

  • Very much relate to the self doubt (even when you're right) and the seeing words that are close to what you're looking for and taking incorrect action as a result. 

  • At first I thought it was a form of OCD, then I realised that it was just poor memory :-)

  • Rather depends on the question.

    In terms of travel, I don't do well on buses so can't imagine coach trip being great.

    Though I find trains tiring I have gone on a sleeper to Fort William. And having a quiet cabin etc was lovely.

    I can drive but I do tire and have to be careful I'm still safe to be driving.

    Flying the main problem is the airport which tend to be huge malls, which over load me. Though last flight we got upgraded to business so could use the Londges which was great, nice quiet places to chill.

    Once on holiday new stuff is tiring so we try to hav clear days for crashing as I just run out of go. Ie try not to do too much.

    I'm not the easiest to get though airports my wife has wondered about assistance but largely I don't need physical help genrally I avoid the travelateors which my balance system can't cope with well.

  • Further to my earlier post about buses - I said I'd expand later on the trouble with strangers. Since my bi I prefer not to talk to or deal with strangers, not like me before the accident at all. Anyway - not wishing for strangers to speak to me if at all possible seems like an annoying but small issue. The bigger issue is self generated - as alluded to by @sospan - I can't help merrily joining in with total strangers conversations if I for instance happen to know he answer to something they're deliberating about. In I jump with both feet without thinking - then remember that I'm a bit slow speech wise and start hesitating. Then ensues an embarrassing few minutes while they look at me as if I'm speaking a foreign language (which I may as well be) and then they delicately untangle themselves from my company or else I do if I can think of a way. If this happens while I'm with my partner - it's not too bad, and he gently helps me to exit stage left. Like the AA Milne poem - sometimes I wish I didn't :) 

  • Ha, I sometimes think I know people, when they are strangers, takes me normally 10 mins of confusion before I realise it's my poor brain, making 7 out of 2+2!

  • Hi headway, 4 ths after my Haemorrhage I planned, organised and managed my own flight back to UK from Beziers. Now I can't even organise a taxi to go shopping unless I think about it for days. I stay indoors now, it's easier. Last Xmas I was supposed to go down S to stay with an expat online friend who helped me via online when I drove myself600 kms  up here, i got so confused with the airfrance website and The train timetables one, to give me alternatives - I didn't go anywhere in the end. Can't even think again about doing it, I forget where my local friend parks her car if I come out the supermarket before her. She basically doesn't understand why I'm like I am, because I can walk and talk (yes same old, same old story) I don't even bother telling her anything now. 

  • Hi Sambs,  sounds like you're in the position of trying to manage everything, and on top, manage how others are treating you.....it's really hard. Sending you a hug. x

  • Thanks v much Elenor3, yes I am, it keeps me out of mischief I hope :-) - but no not quite on top of things yet, so that why I persevere.  I'm a stubborn woman, my undoing perhaps, but like a leopard too old to change my spots now  :- I don't mean old old, but have more life behind me than ahead, so hope experience counts for something. 

    I hope you are doing well, also that you have a good BH weekend! xx

  • Hello, I don't post often but please accept my little contribution.  I love & dread our holidays in equal measure. I am 9 years post frontal lobe injury (from falling the full drop of our staircase), I rarely leave the house alone due to anxiety issues & recurrent spells of dizziness.  I simply don't feel safe which exacerbates the anxiety & panic attacks.  Our holidays consist of a week in Cornwall, staying in the same apartment so I feel some familiarity there.  The build up to a holiday is always draining as my mind won't switch off, we use a simple list system to ensure we take what we need & that we left the necessary provisions for our neighbour to feed the cat.  So a week or so prior to departure my sleep is worse than normal, leaving me 'wired but tired' - in need of rest but unable to rest.  The car journey is the killer for me & I don't even drive, I think it is the problem of having so much to process; new sights, sounds etc.  Neither eyemasks nor sunglasses help, I still feel overwhelmed & overloaded & it makes me somewhat afraid of the world. Since my injury I am also a very, very nervous passenger & regularly feel stress hormones flooding my body.  Once we arrive I feel as though I have been sideswiped by a fastmoving train, I am tired to the point of exhaustion & not having the strength to lift my head up.  In addition, my usual symptoms are worsened & intolerable; headpains, headaches, unrelenting nausea, dizziness, feeling displaced & unsafe, vision problems, sleep problems, inability to cope with noise, bright lights etc etc.  Last time this lasted four days, I had one day when I only felt slightly unwell & then I was totally wiped out again. The morning we were due to return I felt so ill I didn't think I would be able to travel, sadly we had to come home for an appointment & I had to push (in reality wade) through the exhaustion & symptoms of illness.  Once home a week of bedrest helps resbuild some energy.  This is no way to live & I am (excuse the irony of phrase) tired of it all.  

  • Hi Curious Connie, what a descriptive post, I love your phrase 'wired but tired' - so familiar with that state but never had a good way to describe it. It perfectly sums up that 'exhausted, but mind still working nineteen to the dozen' terrifying feeling I sometimes have when I can't switch off and get some badly needed rest. Hope things settle down for you at some point before yiur next holiday. x

  • Oh and - the main reason for my reply.....I'm sure you have already tried this but - re dizziness - have you seen a vestibular specialist & had a try of the Epley Manoeuvre? It doesn't work for everyone I know, just thought I'd mention it :)

  • Hi Elenor, thank you for your reply & for your suggestion. It is not something i have heard of & so will research what it involves. xx

  • Been to scared

  • I'm fortunate I grew up in the travel industry and later went into work in it (I'm not working in it anymore) Despite loosing my memory this is one section that came back 😁.

    I had a CVST in Aug 2007. It wasn't until 2009 that I did my first aeroplane trip again, just to France and I was OK. Had to do a DETAILED itinerary with one copy in my handbag, one in my hand luggage and main luggage and ditto for my poor husband too!

    Good ear plugs (Recommend those waxy one's that mould to your ears!) Eye mask. Despite an un-Godly early flight, I tried to keep to my routine, and instead of staying up late in resort to socialise I went to bed as soon as dinner was over.

    TIP: If going on a ski hols, go for a chalet, talk to the ski company and avoid chalets where they have a large group booking in. Make sure your bedroom is as far from the communal areas as possible.

    Honeymoon - Supposed to be to Florence but missed that, due to suspected Appendicitus, reckon I laughed too much on my wedding day 😂😂.

    TIP 2: Insurance. We're more "challenging" to get insurance for BUT if travelling with a partner or a friend. It is ESSENTIAL to get them on the same insurance reference. We missed our honeymoon. My now hubby was on a separate policy, 6 years later we're still fighting to get any pay back!

    Took my first long haul flight back in 2014 for work. Same methods as above with detailed itinerary.

    TIP 3: As soon as you board the flight adjust your watch to your destination time zone. Jet lag is a pain...avoid it as much as possible. If you would normally go to sleep at 22:00. Try and get some sleep when it's 22:00 in your destination. Limit the amount of movies and if travelling business try and stay off the endless supply of alcohol!

    TIP 4: If in transit, if you can get lounge access do, alternatively a lot of the good international airports offer showers, nothing as good as a shower after a 13 hour flight!

    Travelling by myself for the first time in years, make yourself known to the ground crew and keep an eye on your transit details.

    Once I got to my destination 3 phone calls I had to make: 1. Parents, on mobile. 2. Office via hotel phone (They're paying the bill) 3. Husband by FaceTime through the hotel wifi.

    FINAL TIP: Take any clothes, teddy bears, perfume etc. That reminds you of home.

    FINAL FINAL TIP: This isn't just for travelling, don't be afraid to try something new. I.E If my neuro and pain team turned around and told me standing in my head for half an hour a day may help...I'd give it a go.

    Remember everyone we're alive, we're breathing and if you're considering travelling, whether it be, long haul, short haul or even to the next county that in itself is a small step achieved, and worthy of a massive high five!

  • I travel a lot now. I go all over Europe by bus and train. I find it pushes me out my comfort zones and I have to plan carefully so it make me think. I always take a horse shoe shaped cushion for my neck and a pressure cushion to sit on and I sleep for as much of the trip as I can when it's night and look at the fabulous scenery during the day. I make sure everywhere is paid for before I arrive such as hostels and I text my son's everyday to make sure they are OK and they know I am.

    I keep all my pre- printed tickets in a bright pink plastic envelope with my passport. I have that in the bag am allowed to take on the bus. I also carry an organizer I made with toiletries for the bus and train ( I am sometimes on one for 40 hours so teeth cleaning en route is vital ) and in winter I take a quilt I made to wrap myself in on the bus or train. It reminds me of home. I start packing a few weeks before and list everything in my rucksack so I don't forget anything. I carry a portable charger for my phone and ipod. Some of the buses don't have charging points. I also take a continental plug adaptor.

    I get money exchanged well before for the journey to get coffees and food en route but I carry a Eurocard I use to buy food with and other things at my destinations. I love travelling. I was in the Merchant Navy before my brain injury and travelling keeps me sane. I've also learnt foreign languages. That gave my brain a work out and was slow going but I've managed to learn French, German and some Hungarian and some Greek.

    It can be overwhelmingly tiring but I make sure I get at least one night on arrival in a single room before I go to a cheaper shared dorm hostel.

    I am off to Hungary again soon and am planning a trip to Russia next year. I can't wait. My brain damage never seems so obvious to people when am away.

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