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How not to discover just how much my MS had progressed

Hi,

My husband and I went to Normandy last September for a short break, stayed in a nice hotel with an adapted room. We knew the facilities weren’t perfect (when are they?) but manageable. The hotel had a fabulous spa pool with a hoist which we used just once and wished we’d tried it earlier. We did some walking (pushing) on the seafront, did some sights and ate some lovely food.

So we thought we’d go back there this September. Booked the same room as last year (unfortunately we’d not taken any photos of the room), and thought it would be great. Unfortunately, what I could cope with last year was not the same as this year. We’d simply not remembered the room exactly. I had trouble using the loo - there was just one bar and even using the wheelchair as the second bar it was difficult. The shower chair had no arms, or brakes, nor was it fixed to the wall (in essence just a plastic chair) and there were insufficient grab bars. I had one shower, felt very unsafe and decided against any more. We’d taken a portable bed bar to help me hail myself around in bed, again just like last year. That was pretty much insufficient, every time I moved my husband had to help me, in bed, out of bed and in the bathroom. We both felt exhausted the whole time, it was just so much effort to do anything. We decided not to use the spa pool as it would use up even more energy. We went out one day and had a nice time but ultimately decided to cut the break short. It cost us an extra £60 to change the booking to get the ferry home sooner.

Altogether it was a very expensive, uncomfortable and exhausting two day break. We came home last Friday and I’m still so fatigued I can’t entertain my friends who are here from Edinburgh for the weekend. I woke up this morning at 10:15, got up and have had to send them out without me (OH has taken them to the beach where the 5 year old can play). I can barely contemplate doing anything for the rest of the day apart from going back to bed!

The way I feel now, I never want to leave home again. It’s taught us that I’m much less able than I was a year ago, last year I managed much easier with the help of my lovely husband. We now know that returning to the same hotel needs the same careful planning and examination of all the facilities as if we’d never been there. We will now always take photos of hotel rooms and especially bathrooms wherever we go, and we’ll wait at least a few months before we book anything else.

I feel worse for my husband than for me to be honest, he’s worked all his life, retired 2 years ago and always wanted to travel more. Now everything he suggests is difficult/impossible because of my ever increasing disability. I know we will go away again, but right now I just feel so tired!

Sue

Sue I’m sorry to hear that you had a horrible reality check with your brief time away, and that you have been left probably despondent and a little bit disillusioned. Please try to stay positive and strong. You will get over your current fatigue, but reality is hard.

I felt your story hit home, as we went on a family holiday 2014, and my husband is keen to return there or somewhere similar. However, although I did have a nice time, it was marred by the effort and hard work involved with the unfamiliar, and I too have probably deteriorated, so don’t know what to do.

I do hope you can get something from this and give things another go. Take care xxx

Hi Sue, so sorry to hear this,its awful,its like a slap in the face,when the reality hits you, i gave up going away 5 years ago,infact the last holiday we had i was in bed for the full week we were there,

i was worrying if i could get up to fly back home, cant believe the effort it took me to get on the plane home i, cried for weeks when we got back home,because it hit me that it was the last holiday we would ever have,

i mean whats the point of paying all that money to spend it in bed,when you can do that at home,

it was a very hard lesson to learn,but i knew i wasnt going to put myself through that again no way, i really missed going away the first few years,but i got used to the idea,same as i did when i had to give up driving,that hurt like hell too, at the time.

hope you feel a bit more rested now.

J x

Thanks to you both. I still feel wiped out, but will pick up soon I should think. I think we will try to go away again, we’ve already said we’ll go back to Malta next year for a friends 70th birthday. We think that’ll be OK so long as I don’t get too much worse. Again it’s a hotel we’ve visited twice before and we are fairly certain it’ll be all right. I think the main thing for me to get my head round is that we can’t replicate holidays we had before, when I could walk / hobble with crutches. It would seem such a shame to completely give up on having holidays. I do feel for you MrsJ, it’s a rotten thing MS, there are so many things we have to give up. I wanted to go somewhere warm where I could swim in the sea one last time. We got as far as booking a holiday in The Gambia about 4 years ago so I could go in the Atlantic just once more while I still could. As luck would have it, it was already too late, I wasn’t capable of it and we had to cancel. Nowadays we go for walks/pushes along the seafront (we’re lucky enough to live a couple of miles from the south coast) and I feel so envious on hot days of people in the sea. I’m also envious of people able to walk on the sand when the tide’s out. But I manage to console myself that at least we get to see the sea.

Sue

This could be me talking. This is so much like me. Love and hugs. xx