Hi I am nearly 40 have had MS for 16 years and my fear of travelling not necessarily flying is getting abit out of control.
Many times I have cancelled work meetings even if I am travelling on the train and its a couple of hours away if I do not get good sleep the night before, I literally cannot cope in the morning saying I havent slept and ontop of my MS fatigue I feel rubbish and cant travel
This again is one of my biggest issues if I know the next day I have a meeting or catch a flight my brain will just not let me sleep and then I wake up the next morning maybe with one hour sleep and my brain goes even more crazy, omg I didnt sleep I wont be able handle my anxiety this is the day it gets me hard.
I have so far cancelled 3 flights this year because of this and the relief I get from cancelling makes me so happy. Now I have family holiday next week flight is 1hr 40min and really cannot afford to cancel anymore flights and my kids etc are looking forward to it, a month after that I have another flight for work 2hr 40min which is a very important one they paid for.
Now I dont think the issue is being afraid of flying etc its more I feel away from my home where I can control MS more if that sounds weird, also I feel claustrophobic in things like planes e.g what if I havent slept get bad anxiety or attack and am somewhere else, I dont like being far away from my comfort zone, my house e.g more then 1 hour by car, if I am tired and havent slept I really cant control it
Hi and welcome.
I know exactly what you mean by your home being your safe zone. Mine is exactly the same. Had MS 23 years and retired from working. Sorry I can’t advise apart from mindfulness and meditation may help you with anxiety. I traveled to US alone earlier this year for the first time visiting friends I met out there. British Airways had brilliant wheelchair services which I used and would highly recommend.
All the best Anita
A couple of nights of not sleeping and I turn into someone I don’t even recognise. I definitely hear you on that, and on the vicious cycle of anxiety leads to insomnia leads to anxiety squared and so on.
Is it worth reviewing your meds with your GP? There are different anti-d drugs that help with anxiety and poor sleep as well as low mood. That’s why my GP recommended mirtazapine for me and I have to say it’s really suited me well. I don’t know you at all of course but you do sound awfully like me!
It might help to chat with your GP about tweaking your meds to better handle the anxiety and sleep issues finding the right balance can make a world of difference.
When it comes to anxiety or just something bothering me and knowing well I won’t be able to sleep, I have my diary to turned to. It really works well. I pour my heart on the pages even in the middle of the night to be able to get to sleep again.
I’ve been finally diagnosed 4 years ago. I used to travel a lot to faraway places but since diagnosed I was very weary at the beginning. I have to take a flight to Europe to see my elderly mum so that first trip 3 years ago just after Covid was rather nerve-wracking but I made it.
I find planning and factoring my MS symptoms in gives me peace of mind.
I’ve been brave in April and embarked for trip to South Korea for 2 weeks. The anticipation was overwhelming to the point I started to feel rather unwell but I’ve turned to my diary to share my thoughts and concerns. I have planned the trip for over 6 months, even found appropriate hospital over there should I need one, (unfortunately I did), decent travel insurance so I have been reassuring myself that all will be fine, and I was right.
I have to say I have isolated for month before my travel to ensure I am in the best condition I can be for my holiday. I have started new diary just for the trip as the excitement when I was there was able to keep me awake. As out of my own country, I tried to be as much respectful to my MS as I could but at the end I have had a great time and learned a bit more how to be kind to myself and be still able to travel with MS.
So my saviour is and always will be my diary, planning and trying not to stress about with what ifs as one can never know. FYI, I’m on Copaxone as well.
I wish you all the very best while travelling regardless how short and long your journey will be.
In the morning I had extreme anxiety and panic attacks, as I was overtired on top of my MS fatigue.
Tried to muscle through and go to the airport as the family were looking forward to the holiday, had a further six panic attacks and by the time I got to the gate my vision went blurry and my MS fatigue was the worst its ever been, literally like I was not in my body and it was shutting down triggering more anxiety, felt like I was having a stroke.
Couldnt board the flight and we all misses our holiday paid thousands for, feel so guilty, but it was extreme fatigue and anxiety I couldnt control
Trying to overcome this maybe need a new MS med or some different anxiety meds
One of the things I like least about MS is then it makes me look like the weirdo. I’m just home from a big sit-down birthday lunch party on the sweltering patio of a friend. There was a gazebo, but it’s a total sun trap. My cooling vest was v helpful but not enough, so I had to excuse myself and go indoors like an old lady with the vapours, leaving behind people 25 years older than me but doing absolutely fine and (in their case) making and causing no fuss whatsoever and just being normal and putting up with the heat. It’s a tiny example next to your family’s expensive disappointment, of course, but it’s just embarrassing and makes one feel stupid, doesn’t it? I really feel for you.
Hello, and yes I have felt some of what you experience. I think it was maybe during the first few years after diagnosis- I would find myself having to leave hairdressers, dentists, trains and if I was in a meeting I would have to make sure that I was sitting nearest to a door. Flights were a horror and after getting off the plane I would have to find somewhere quiet to sit or walk ( after a late flights I would sometimes be walking around a more or less empty airport- god knows what the security staff were thinking). Same with car journeys.
I put it down to something like fear of lack of control, confined to seats and not being able to escape or something like that. That all made sort of sense to me - my mind was panicking because it was stuck with a disease which was attacking it and over which it had little or no control.
I can’t remember how but the panic slowly subsided, I learned to control it and keep calm and having my wife with me helped ( couldn’t take her to work meetings etc )
Anxiety about travel was an issue for me prior to PMS
I have used meditation to help me navigate stressful times/situations
CDs can help you to begin the practise
Good luck
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