MS holiday blues ……


Is it me or is going on holiday with MS exhausting and traumatic?

All the advice on websites and social media states that planning is the key and we can all have an enjoyable, stress free holiday as long as we spend months thinking through every detail. I always plan my trips within an inch of their lives but this year I’ve still been caught out and feel I need a week alone in a dark room to recover!

Why do holiday companies advertise their accommodation as “fully accessible” when what they really mean is, “we’ve ticked a few boxes so hopefully you can manage”

I wasn’t even able to get in to my accommodation last week as there was a step and the door to the bathroom was too narrow to get my scooter in. I then had to spend days trying to get it sorted out and relying on my husband to heave me in and out of the loo! I’d spoken to people on the phone before I booked and trusted the glossy pictures on the website so how much more planning can I do?

Sometimes things are completely out of our control though and no amount of planning and imagining worse case scenarios can prepare us for what goes wrong. I learned this the hard way this year when a badly fitted shower seat came away from the wall while I was on it, depositing me on the floor with no way to get up! Luckily, I plan for “miscellaneous occurrences” and my sister was there and marched down to reception in her pyjamas for help, otherwise I might still be there! It would be nice to be able to trust the accessibility of places though and be able to be independent!

As a result, I’ve spent much of this year writing strongly worded complaint emails and am still waiting for the outcomes but why does it have to be like this? Why can’t things just work out? I do my bit; planning, so why can’t holiday companies and hotels do their bit and have adequate facilities for disabled people? I wouldn’t book accommodation with a flight of stairs or insufficient equipment as I’d have a stressful time and would have to rely on those around me for help so I need to be able to trust that when it says “accessible” it means it!

I have had good experiences too though, there’s a lovely hotel in Sussex my husband and I stay in that has a wonderful accessible room so it can be done!

I’d love to hear recommendations from people too; where are all the good places?




12 thoughts on “MS holiday blues ……

  1. Hi, I really wanted to empathise with you here as I’ve pretty much stopped trying to stay away from home for similar reasons.

    Like you, and as everyone advises, (does anyone like us ever just drop everything, travel and think it’ll be okay?), I planned the living daylights out of every trip and yet … same problems. Despite promises and even photos, I’d find steps, too narrow door frames, inaccessible bathrooms, doorways, wrong equipment delivered and it went on …

    It was all so stressful, me and my husband came to dread the entire experience so, for the moment, have stopped doing it.

    I feel irritated to have ‘given in’ but life is so stressful anyway that, while my husband works full time, the least ‘stressful’ holiday time is for us to ‘staycation’. Hopefully, at some point in the future, we will try to venture away again but not until he stops working, I fear.

    I keep hoping travel will become more disability-friendly but not much evidence of that to date, sadly.

    However, as the bulging, demanding, supposedly well-off, baby-boomer population gets older, perhaps that will drive through disabilty positive changes that will benefit you and I? Not too much longer to wait for that to happen …

    Kindest regards, Elle 😉😊

      • I thought just that..MS, can’t walk write, swallow that well, anything much, wheelchair/walker.Chose Centeparcs at the cost for facilities…it was great, but fell after 1st night. Split head open to skull when fell against bedside table.
        Put everyone off trips away! Well especially my husband!
        Easier to stay home!

  2. Dunno Abi, I am new to all this ‘accessible room’ thing, it has all rushed up so fast. I can tell you Holiday Inns have ok rooms but bloody heavy fire doors so I have to ask to be wheeled to my room…

  3. I am so sorry you are having these issues, Abby, Mark and Elle. I don’t have a solution, but I would certainly “go up the ladder” to try and at least get a refund. If that doesn’t work, I would (and have) left long reviews warning other disabled folks not to stay at any of their establishments. I can tell you one story . . .
    Soon after I was diagnosed, my husband and I had to go Johns Hopkins Medical Center in Baltimore. Since we received a discount for the hotel, we decided to stay in an “upscale” establishment to try and find something positive about the trip. The room was beautiful and totally handicapped accessible.
    But, after raving about the room to my husband, he asked, “Now what do I do if there’s a fire?”
    At the time I was in a wheelchair. They put us on the 16th floor and he would have had to carry me all the way down the stairs since the elevators would automatically shut off when the fire alarms sounded.
    Even at the best of times, there are still challenges! Hopefully, the more we write about it, the most people will realize the struggles many of us face. Keep your chins up (literally)!

  4. when booking I now ask for photos to be emailed to me of the bathroom and access to the building ..however we are now past that as my husband needs hoisting ..there are quite a few places mostly self catering that have ceiling hoists ..however while my husband had the scooter we stayed at bluestone in wales the disabled accomodation was good ..i have always found premnier inns good …marriot hotels are good too ..

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