It's official; I'm becoming a hermit

I just turned down a social invitation - and it’s not as if I get that many.

Basically, a long ago college buddy (circa 30 years ago) is visiting from Australia. He and another guy from college days wanted to meet up. One of them even wanted to pay my hotel bill, because he knows I’m not working.

BUT, the arrangements have been a fiasco from start to finish. The guy who’s coming over didn’t even mention it until last week some time. At first it was going to be Slough - not too bad for me, as it’s a straight run on the train. BUT he still couldn’t tell me dates or times, so I wasn’t able to go ahead and book train tickets or accommodation.

Then I didn’t hear anything until he posted on FB that he’d actually left Sydney for England. He must have known what he was doing by then - nobody flies to the other side of the world without knowing what they’re supposed to be doing when they get there.

But still no dates or times. Then all of a sudden, it’s not Slough, but Tipton (West Midlands) - never heard of it, and much harder to get to (got to change at Brum) - plus talking about next week, but still no confirmation of exactly where/what day, so still can’t book tickets or accommodation, and train fares are going up every day we delay (advance fares all gone now).

To cap it all, back has been out all week - was absolute agony a week ago, and has been alternately improving/worsening a bit for several days. Even though I travel light,I can’t risk setting back the recovery by hoiking luggage on and off a train.

I keep wondering if I could do it if I tried, and am just making excuses. I think one of the things that’s putting me off is that with less than a week to go, I still don’t know what I’m doing, or even which day for sure.

Even back trouble/money aside, I somehow can’t cope with still not knowing what I’m meant to be doing, and only finding out a day or two beforehand. I feel like a real spoilsport saying: “OK, enough, I’m not going to do it!” - especially when one of them was even willing to subsidise me. But is it unreasonable that someone who is ill and on a budget needs to know more than a week before if they are meant to be going away somewhere?

I’m feeling annoyed with my friend (the expat) because I can’t believe he has travelled all this way without having some idea of his itinerary, and I can’t understand what all the uncertainty and faffing about has been. He’s here for work, NOT some leisure trip where he’s a free agent, and might decide to go anywhere. So there must have been some sort of plan of where he’s going to be, and when. I don’t know why he couldn’t just share that with us, so we could make arrangements.

Instead of that, we are still piddling about (not even clear if he means Monday or Tuesday, or where in Tipton), and that is when I decided it’s too stressful, and I’m calling a halt.

I don’t know when - if ever - he will be in the UK again - so I might have passed up the only chance to see him. But I just can’t take it anymore.

Am I being silly or unreasonable?



You are not being silly or unreasonable Tina. I know exactly how you feel. I easily get stressed now and must have time to organise and prepare. Any indication of being rushed or pressure put on me then I panic and become even more confused. Now, if someone was to step forward and offer to drive you from A to B and home again then that would be the answer for me. Do miracles happen?? Good luck x

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If you produced a bar-chart to illustrate the relative amounts of sweet life spent so far worrying about this proposed meet-up by (a) you; and (b) your friends, what would it look like?

Exactly. And the more you keep worrying about it from now on, the wider the gap will get. Let it go, Tina. You’re not being unreasonable; you’re a person with a chronic progressive neurological disorder that messes up life quite a lot and in a way that ‘normal’ people, even sensitive ones, have no particular reason to understand.

Your back gives you a perfect excuse. If I were you, I would give my excuses with a good grace and knock the thing right off your worry list without further ado.


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Thanks Blossom,

I have to admit spontaneity was never my strong point, even before diagnosis. I was never the kind of person who was footloose and fancy-free, and didn’t mind being rung the day before and asked to go somewhere.

My work reviews, whilst generally positive or better, did tend to mark me down on “flexibility”, as I was never very comfortable with having to change plans at short notice, or not getting any notice at all!

But, it has got worse as I’ve got more ill. As you say, just feeling stressed and under pressure. I need time to prepare myself for things - both psychologically and physically. It takes me an age to get organised to go anywhere, and I can’t live with: “It’ll be next week some time - we’ll be in touch.”, as it’s making me anxious.

I think the chaps assume that because I’m not working, I can do whatever I like, whenever I like, and advance notice isn’t necessary. Strictly, that’s true - I don’t need to negotiate time off work or anything - In that sense, I am my own master. But that doesn’t mean I have high tolerance for not knowing what’s happening next week.

It was conspicuous they didn’t even try to involve the other chaps from college (they were all chaps, apart from me!), on the assumption they’d be working, and not able to make it anyway. So obviously, the logic has been: “She won’t have any demands on her time, so the ideal person to ask!”

I don’t mean, by that, that they didn’t genuinely want to see me. There wouldn’t have been the offer to help out financially, if they didn’t hope I would go. But they just don’t get what living with chronic illness does for spontaneity. If I’m really honest, I’d have needed to know a couple of months ago to feel truly comfortable with it. Not: “Hey, Tina, you up for coming to Slough/Tipton/somewhere next week?”

I don’t really work that way.

And it doesn’t take that much to make me feel I’ve got a really heavy week, even if only a couple of days are spoken for. Unusually, this week, I have college on Saturday, because of a lecture we missed months ago, which the tutor always promised to make up. I love college, but it tires me out, and usually the following day too. Then, on the Wednesday, I have college again (the usual day).

And in between the two, I am supposed to go to Tipton and back for a night out, but we don’t even know which night, or where in Tipton it is.

I’ve friends from Australia who seem to think the world should stop just because they’re visiting. Sure it’s 12,000 miles and all that, but as you suggest a bit more prior notice would be nice!

And, besides, I try and avoid social situations these days. Am finding it increasingly hard to relate to people.

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Thanks Alison & Jen - sorry our posts crossed.

Even my non-expat pal - the one who had offered to pay the hotel - sounded slightly peed off about it this morning, and the words: “P*ss-up” and “brewery” were mentioned - and he’s perfectly fit and well.

So even he is becoming slightly frustrated about the failure to get three people together for a simple meet-up, because one of them seems unable to name a time and place, and stick to it!

The Ozzy guy did sound genuinely disappointed I pulled out, so I don’t think it’s that he doesn’t really want to do it, and is hedging. I’m not quite sure what the problem is, that means he couldn’t just say a day.



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I can’t keep up with the sudden spate of replies!

Thanks Clucker Pigeon, too.

That’s the weird thing! I’m sure a trip all the way from Australia isn’t just organised on a whim - he must have known about it for some time, AND he must have had a pretty shrewd idea what he’d be doing here, and where/when. You can’t tell me you just set off from Australia without having pre-booked any accommodation, so he must have known his itinerary.

I believe he is attending courses over here, so they must have a fixed time and venue. It doesn’t make sense that, with less than a week to go, he’s still vague about arrangements.



You are not being silly or unreasonable Tina. I hate not knowing exactly what I am doing and when. With the dreaded MS it is important to know exactly what is going on so as not to stress and make ourselves feel even worse.

Do what you feel is best for you as you are the one who has to suffer the consequences.

Take care and stop beating yourself up.

Shazzie x

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You most definitely are not being unreasonable or silly. It sounds to me as though he is trying to juggle a social life while he is here and is assuming you will fit in with him last minute. Although I am sure he does want to see both you and your other friend he is the one being unreasonable in not making a definite arrangement.

If I have a rare social night out I have to plan it with precision. I wash my hair the day before, style it on the morning and stagger all other preparations throughout the day. People who don’t have fatigue don’t realise what it means to those of us who do. Then there is all the other problems such as your back to deal with.

I would have suggested meeting the other guy at a later fixed date, but as you say his partner probably wouldn’t appreciate that.

Try not to let it worry you, I hope you get another social invite soon.

Jan x

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hi tina

i understand your angst at the lack of firm arrangements.

this damn ms has a lot to answer for!

i used to love spur of the moment plans in the good old days before ms.

my best friend was working in london and had a room booked at Travel Inn.

she asked me to go with her because she didnt like the long drive alone.

i went like a shot. wandered around london whilst she was at work, met her outside her office to go back to hotel.

then she was going on to weston super mare and i went along with her.

i’m so upset when i remember my ability to enjoy things like that

but onwards and upwards eh?

carole xx

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Thanks All,

Whilst I wouldn’t wish this on anyone, and dearly wish I wasn’t like it, it’s reassuring to find others can relate, and that it’s probably not just my “uptight” personality, but something to do with MS and fatigue, that means I dislike short notice and “surprises”.

Jan, I think you are right - if he hasn’t been in the UK for some time, he almost certainly does have other friends and even family he’s trying to squeeze in while he’s here, and college friends from 30 years ago aren’t top of the list.

My other friend does work, but he is on the rigs, and on his shore leave at the moment, so has no conventional work commitments for the time being, either. I guess that means we are seen as the two who can fit in with whatever’s left over at the end, because we haven’t got to clear it with work. People don’t understand (and can’t be expected to, if they don’t know me, or anyone with MS) that there can be other things than work that interfere with someone’s flexibility to do things at the last minute.

The pity is that I almost certainly would have gone if we hadn’t still been dithering about like this at the eleventh hour. Yes, I do sometimes find it hard to follow through on what I’ve agreed - especially with menaces like the bad back to contend with (probably not directly MS, but not unrelated either, due to the weak muscles…) But generally, if I get something definite in the diary, I make every effort to do it, even if I wake up feeling like sh!t that morning. It’s all this: “Oh, I dunno, I’ll get back to you soon about it…” I can’t cope with. It’s not that the trip is out of the question, I just hate the not knowing, and not being able to prepare. Even checking trains and going on Trip Advisor to find a good place to stay all takes time and energy. I don’t want to be phoning round trying to get a room, two days before I’m supposed to be there! Where the heck is he staying, and why couldn’t he just offer to book us in at the same place? Seems the most sensible thing - then we could all have had a jolly good drink, and nobody would have to worry about finding their way back to their digs half-cut.



Oh Tina, they might already think they were half cut in the Tilting Barrel pub in Tipton! Tipton is about halfway between B’ham and Wolverhampton,not a great many hotels, sounds like a lot of faffing about unless you stayed in Brum and tell them, they’ll have to come to you!

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Hi Anitra

I think you’re feelings, ms or no ms are entirely understandable. if a town can’t be agreed, let alone a date/time, i’d not bother either as they’ve got to realise that giving such information in advance is a basic matter of manners irrespective of illness.

I’d meet up with the guy who offered to pay at a time that you’re both able/ happy to meet, let the aussie know when/ where. if he turns up, great; if not, his loss.

life is too short after all! hugs, fluffyollie x

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Hi All,

I feel slightly sad about having said no, but overall, I do think I feel better today, no longer having it hanging over my head.

No idea if the other two are still planning to go ahead anyway, or if the other chap also finally drew the line at having no plans, this close, and gave it up as a bad job.

Thinking about who really wanted it to happen, and who’s not that bothered, it’s obvious the one who used to have a thing for me at college (but never said) - and who also offered to pay the hotel bill - is the one who was serious about getting something sorted. If the other one, who is over from Australia, was really keen, there is no way he would have got as far as setting off for the UK without already having agreed anything, and still be messing us about now he’s here. It’s not that he doesn’t want to do it, but he’s not that bothered either way. Someone who didn’t want to miss a rare chance of catching up with pals from 30 years ago wouldn’t have been this slapdash about it. He’s not acting like someone who is excited, and keen not to blow the opportunity.

It’s the other chap that wants to go for it, isn’t it? Hmmm. That might be stirring a hornet’s nest, too. Wonder how things are at home for him right now? Obviously, there’d be no issue if we were all three of us meeting up, as there’d be clearly no funny business going on, but I wouldn’t meet him on his own, away from his partner. Not because I don’t trust myself - or him. I just don’t think it’s really the done thing to fix up to spend time with someone else’s partner - especially one who’s open about having fancied you in the past. Nothing would happen - I wouldn’t let it - and there’s no suggestion he’s unfaithful anyway. But you know the old saying about playing with fire: somebody gets burnt!

Maude - even though I don’t know the place, I did get the impression there’s not much at Tipton. Would probably only have been looking for a B&B or somewhere modest anyway - especially if someone else is paying (not sure I’d have allowed that). But yes, it seems an awful lot of hassle for what would essentially be ONE night out. No offence to anyone who is from there, but it didn’t even seem the kind of place to combine with a short holiday, to make the trip worthwhile.

At one point it looked like it might have been Stratford (I assume he must have meant on Avon, not Stratford, London) - which is quite a tourist destination in it’s own right, and I thought might be worth staying an extra day for a look round, and maybe catch an RSC play. At least, then, I’d have had a little break away, and not gone to all that trouble and expense (cheapest rail fare £52.10) just for a single evening. It does seem excessive, when you look it at like that - it would have been a night out, NOT a holiday, and needs to be a pretty bloomin’ good night out to justify going all that way - on public transport - with MS!