I have RRMS and have multiple symptoms, especially, dizziness, numbness, fatigue, toileting issues. But, luckily, I present well eg. I am walking without a stick. (oh, apart from my language, thinking, organisation is rubbish too!),
My question then…How does someone show others that they have a disability. Eg. Simply, the airport was horrendous this week. Stress was unbearable, fatigue was horrid and symptoms were up.
Is there a card? or do I get a letter from my GP? What have other people done? I don’t want to cheat anyone, especially those with more disability than mine, but I do feel as though I am walking through thick, thick treacle whilst pulling ten tonne sacks of cement.
I rang the Society, and they sent me some cards in the post, about credit card sized, fit into a purse and can be waved at people. I try not to resort to using it unless I have to, but the fact that the cards are in my purse gives me more confidence! I also have a letter from my MS Nurse to back them up when travelling…
New Year’s Eve when I went outside for a cig (bad me), I was a little ‘wobbly’. I had had a whole 3 glasses of wine all night, so merry not drunk. The door people would not let me back in. I explained that I had had ms and had a few drinks but I was not drunk, happy to leave, but I wanted to go and get my hubby to leave together.
They let me, but followed me in & out (very embarrassing). Doorman asked why I did not have a ‘bracelet’ ! ???
its strange, it’s probably the thing that bothers me most about my ms, the fact that I can’t enjoy a night out because, if I am tired I get hit randomly by vertigo, after a couple of drinks one and all (partner included) see it as ‘drunk’. The upside is that hangovers are a thing of the past (my legs /balance goes before I have had enough to get a hangover).
Interesting the airport issue, at present I have got no further than having a ‘date’ for my hol. Not too sure if I actually want to go on one !
You don’t have to prove that you have MS to get airport assistance. All you need do is book special assistance. You then sit in a specific place where transport will turn up to take you to the gate. If you need it, you can get assistance (ie a wheelchair) from the check in desk all the way through to the special assistance collection spot. You then sit in a chair until your transport to the gate arrives. Once you’re on the plane, check that they are aware you’ve asked for assistance so it’s waiting for you at your destination. You could if necessary get assistance all the way from the car park. Just phone the airports assistance number and book it. We have to do that because it’s not possible for my OH to push me plus push/pull luggage. It all works very well.
This doesn’t exactly help with the ‘looking drunk when sober’ problem. One answer there is wearing a t-shirt that says, ‘I’m not p*ssed, I have MS’.
Love the tea shirt idea ! Lol, it’s more the yes I am tidily, but no I am not drunk problem. Hay ho, my physio is referring me to some ear people ( can’t remember exactly what she said but somethin to do with build up of cristals in ears ? That maybe solvable). It would be great to lose the vitiligo). If they solve it I will get to prove I have not just become a ‘light weight’ with alcohol.
Not sure how I feel about ‘assistance’ at airport. It’s great it’s available, & if I was traveling alone a ‘must do’. It’s a shame us guys who do not need a wheelchair and can ‘just about do’ can’t just have a VIP card so we get to avoid the long ‘q’s’ and standing around. Without the need to share publicly our issues. I can accept that sometime in the future I, in order to do stuff I may have to, but at the moment I value my independence !
We have made use of the passenger assistance for years with my step daughter who is completely wheelchair dependant.There are only a few different options but we find we book the highest level but when we actually get there the people are more than happy to do slightly less than is stated in that to fit with our needs.She was only pretty small and light when i came on the scene and we were ok to push through airport and lift her to seat so just needed the lift to get up to floor of plane,but after one occasion when we were put on last and Ryan air failed to save 2 seats together for her and one of us at least and i had to walk up and down plane with her at shoulder height keeping her higher than height of seats whilst they tried to get it sorted! since then its been the works including using the special aisle trolley chair and 2 guys to lift her in her all day sling into seat with my supervision!
Sarah i don’t know how bad you are but its pretty stressful and hard work getting through airports at best of times,would you perhaps just about cope through sheer bloody mindedness but this then contribute to ruining several days of your holiday through fatigue and increased pain?
I understand your reluctance and my wife had the same concerns about this time last year,6 weeks after she had a major attack (which eventually led to ms diagnosis last month) and we went to Spain to get away,she was walking with a stick and pretty slowly but no doubt could have coped with Bournemouth airport but at the other end the walk at Malaga is a very long one and i would not have been able to help her and carry bags so getting pushed in wheelchair on that side was definately the best decision. Especially when they got her on golf buggy but no room for me and luggage so left me running behind trying to keep up for probably half a mile pushing a wheelchair full of luggage, buggy was flat out and she was facing backwards so could laugh at my efforts all the way!
I had a similar experience to Sarah’s at a wedding last year. It got to about 10pm and I’d drank nothing but water since about 6pm so I was stone cold sober and found myself outside bent double coz my back was seizing up and I was in agony, one of the doormen was giving me the “eyeball” It was only the next day I realised he must’ve thought I was roaring drunk!
i do have an MS card my MS nurse gave me but I’ve never used it. but I also have a badge to wear on my coat it came from USA iand reads “fighting MS every day” I don’t understand why we can’t have a necklace or something like the medic alert or a lapel pin or SOMETHING?
i hacks me off all anyone says is “but you look so well” what you mean is, you really need people with MS to turn purple or something so you can see it! bloody idiots!
I also have RRMS, lucky enough to still be working and so don’t claim any benefits.
How do I prove my disability, I could really use a disabled person railcard or bus pass, but can’t apply as i am not in receipt of a disability benefit to be able to prove my M S.
That’s a good idea. Unfortunately I don’t have a letter of diagnosis. In fact, I got my diagnosis from my GP (probable MS based on my MRI scan). The neurologists I’ve seen since then have never bothered to write a letter confirming the diagnosis.
I can prove that I’m disabled with my PIP award letter and/or blue badge, but can’t prove that I have MS. Sounds like one of those cards would be a good thing to have.
but why does anyone with a disability have to ‘prove’ they have a disability? Does anyone have the right to ask what our disability may be if we’re, say, wanting special seating at an event? The able-bodied are never asked to prove their status.