Suggestions please!

Morning everyone!

I’m in need of some advice or recommendations from any of you. I am willing to try anything at the moment!

My hubby has booked tickets for the Formula-E racing at Battersea park in a few weeks time. When he booked, he thought there was seating, as I said to him I didn’t want to stand for the day, and thought I’d find it difficult. We have since found out that the viewing areas are standing areas, and you are not allowed to use fold up chairs in the viewing areas. Now, my problem is that I am going to get really tired, really quickly. I tend to get a cripling lower backache (unsure if MS related, although when I look at the wear on my shoes I must walk ‘differently’ on one foot as the wear on that shoe is different to the other) if I stand for more than 20-30 minutes. Even if I take painkillers 30mins before I know I’m going to be on my feet for a while, the pain is still quite significant.

I don’t want him to feel guilty for making me go, but equally I am dreading it because I know I am going to be in pain and it is going to be exhausting trying to make it through the day. I have only been recently diagnosed (partly due to me ignoring the symptoms over the last few years or blaming it on my weight and being unfit etc), and the last thing I want is for him to miss out, or feel guilty. Does anyone have any suggestions for making it through the day? I have actually seriously considered getting a wheelchair, but that seems so wrong because normally I am fine… I just don’t know what I can do.

Hi,

I would contact the venue, and see if they can do anything.

I would definitely not be OK to stand all day, either - and yes, I’m sure it’s the MS. But like you, I would not be prepared to opt for a wheelchair just yet, because I am fully mobile - I just need the opportunity to sit down, but NOT in a wheelchair.

I can’t promise the venue would be able to do anything, but surely if you explained the tickets were bought in error, not realising it was standing room only, and one of you has MS, they might be able to change the tickets, or come up with some suggestion. If a wheelchair would be fine, why wouldn’t a folding seat - it doesn’t take up more room? I know there’s often a very black-and-white concept of disability - that either you can stand all day OR you’re in a wheelchair, but there must be lots of people in between those two extremes. Most people over a certain age would struggle to stand all day, regardless of health - it doesn’t mean they all ought to be in wheelchairs!

Tina

I would have suggested using a wheelchair for the day, why does it seem wrong? It makes sense to me that you would be comfortable, being able to sit down, & your hubby would be able to enjoy the day, knowing that you’re ok & not getting over tired.

If you’re worried or embarrassed about using a w/chair why not have a practise at a garden centre or somewhere that provides w/chairs for their customers. It’d be a shame to spoil the planned outing with your hubby

Rosina x

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Hmmm. Just had a look at the website. Looks like a rip-off. The ONLY area with seating costs £224, but there is no view of the live action, and you have to watch it on a big screen! Honestly, who’d pay £224 to watch on telly, basically?

I think this is not a disabled-friendly event, but see what they say if you raise it.

If the worst comes the worst, I think you will have to bite the bullet and tell Hubby you can’t go - but don’t stop him going. You’re not going to have a nice day if you’re not able to sit down - I know I wouldn’t - it would be murder.

It seems pointless to go if you know you won’t be able to enjoy it. Hubby will be disappointed, but will get over it. He’s going to have to get used to it that some things are a no-no for you, isn’t he?

I know he didn’t do it deliberately, and it’s unfortunate he didn’t realise there are no seats - but it does say so quite clearly on the website. He’ll have learnt his lesson, and have to get used to checking these things, instead of just assuming. Don’t go just so as not to disappoint him - it’s really not worth being in pain all day, and I doubt he’d want that either.

But at least speak to them first.

Tina

x

Tina

Another suggestion is can he go with someone else , and you do something you will enjoy, I know were you are coming from regarding the wheelchair, mine was given to me when i requested assistance from the NHS needless to say talk about treating something with a sledgehammer, I use a walker sometimes and the wheelchair is in the garage, some friends have used it but not me. Saying that hubby has suggested that i use it and he gets the stare.

I had to cancel the hogmanny party for the same reason , some things are not achievable.

Thanks for all your suggestions. I really don’t want to ruin his day, and I know if I don’t go he will feel bad about it. He’s quite sensitive for a man, and will feel bad for having even asked me.

I’ve looked into it some more, and it looks like there are places where I can go and sit down. I won’t be able to see the racing live, but tbh, it’s not really my ‘thing’! I can sit somewhere by some screens showing the race with a drink while he watches it ‘live’. He might be happy to do that. I’ve also booked a doctors appointment to see if there is anything he can give me painkiller-wise, just as a one-off. In the past its been a case of ‘grin and bear it’, but we never tended to go out for long days out like this. He has been saying for years he wants to go to a theme park, but I have never suggested a date, and he hasn’t either, so I’ve got away with it! There’s no way I will upgrade those tickets to the ‘gold’ ones at those prices. That is just plan ridiculous! I have seen another page where they say that there will be wheelchair ramps to some of the viewing areas, but I would just feel like a fraud if I did use a wheelchair! I am wobbly on my feet, and stagger off occasionally (especially if I am stood talking to someone and not holding something! It can be quite amusing when I suddenly disappear!), but I am still totally mobile!

To be honest, I think I have to go for his sake. If I don’t go, I am certain that he won’t either. Not even with a friend. If I thought he would, I would suggest it to him. I guess that’s why I’m getting worked up about it. He has put up with a lot due to me, and I don’t want to spoil this one thing, which he is really excited about.

What’s with the wheelchair hating? I just don’t get it!

You would not be a fraud!

In order for you to fully enjoy the day you NEED a wheelchair! You don’t have be unable to walk to justify using one.

I have used one for many years so as I can keep doing the things I want to do, like family days out. Now, on a good day, my husband will push me around from shop to shop but I will get out of the wheelchair and walk around the smaller shops (it’s so frustrating looking at things at someone else’s pace!).

People will be helpful and you will be comfortable. You can hire wheelchairs, I think, from the Red Cross

Would you judge some one as a fraud if they had sprained an ankle and used a wheelchair instead of crutches?

It doesn’t sound as though you’ve discussed with your husband, give it a try (talking to your husband and the wheel chair)

If you do hire a wheelchair make sure it’s a self propelling as, even if you can’t propel yourself, you have control over which way you face etc. One other thing, make hubby promise not to jump on the back when going down hills!

Teddie x

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I think, unfortunately, you might be setting a dangerous precedent there, of agreeing to things you can’t really manage, to avoid causing disappointment.

Think very hard about how you want to play this - not just now, but for the future - because you aren’t just suddenly going to feel better one morning. How you behave now will set expectations for the future about how you’re going to manage your illness, and if you take the line from the beginning that your pain is secondary, because you don’t want to disappoint, you are paving the way for a lifetime of doing that. Your husband’s pleasure is NOT more important than your pain.

I don’t mean it to sound as if I’m advocating selfishness. I am in a way, but only because MS is non-negotiable. It’s not something you can selectively ignore, if it would make life nicer and more convenient for everybody else. So perhaps Hubby needs to learn early that you (and he) can’t just carry on as if you didn’t have it. That isn’t being selfish - it’s reality.

I’m concerned that you’re already talking in terms that he’s “put up with a lot” - but no more than you have, I’m sure - and no more than spouses promise to do for one another, assuming you had the traditional: “in sickness and in health”.

Yes, of course there has to be give and take in any relationship, but while you might be willing to compromise, the MS might not. Don’t underestimate the consequences of trying to ignore it. You can make yourself very miserable, very quickly, by going along with things you know, deep down, are too much.

Tina

x