“Aw, you look so good” a rather difficult comment friends and family say when they meet me for the first time after a wee while has passed.
Whilst it is irksome, at first it used to almost anger me, not so much now, it is a comment that has made me so much more wise to the world around me.
I see fellow ‘sufferers in silence’ so much easier now than before and find myself very sympathetic to their needs and struggles. This mainly takes place whilst I am holding on to a shopping trolley like it’s the edge of a very high cliff edge like my very life depends on it
I spent some of my younger years in the armed forces and have a rather unsympathetic nurse (sister of a ward and Scottish!) mother and a Royal Marine father. This fostered a very strong will in me and a ‘can do’ approach to everything even when it’s pretty obvious a ‘can’t do’ situation.
This leads me onto something I find really difficult. It’s not just me but those around me too.
They see me looking, ok slower than normal, but coping. I’m still obsessively tidying up and organising things but in so much pain, and at times confusion as to what I was actually doing, that for all intents and purposes, I look ‘normal’ to the casual observer.
How does one bridge this? I become so lonely in my own world of shite but brave facing it so as to not cause undue stress on this around me.
My wife even said to me yesterday - “how can you not sit for over and hour in the school theatre chairs but can sit in a car for the same”
Interested in others views on this and also what if anything you’ve done to help others in understanding. I tried a sign around my neck but kept forgetting to wear it!
It sounds like there are a few things going on here.
You mention your own military background, the “can do” attitude. That obviously has its positive side - courage is a virtue. But it also suggests a kind of “tough guy” model that fails to account for something like MS. So I imagine it must be particularly hard for you to adjust, even within yourself.
Then added to that, your own efforts to be brave and keep going actually lead others to assume you are doing fine. They don’t get that there is anything wrong if they can’t see it. I get this so often, people saying “you look great though!”. It’s meant to be a positive thing, but I’ve learned not to say it - for example, to people with cancer or anything else - and instead to ask people how they feel. I suppose it is human to assume that if you can’t see something, it isn’t there. Some people don’t even accept that we have MS if we’re not using a mobility aid! But yes, it leaves you alone with the problems.
What to do? Well I’m sure you will find some sympathy on here from people who’ve faced similar responses. You could also try to make contact with a local MS group if that might help. And if you really want to just say what you feel, in confidence, and not be judged, why not call Samaritans and do it?That’s what they are for.
Would you be able to explain to people around you how a) it is important for you to do what you can, but b) this does not mean you are fine.
Your experience with MS seems to have made you better able to empathise with people and their “invisible” problems - potentially a wiser and kinder friend.
You mention your background in the armed forces - are there organisations, e.g. of veterans with MS, that you could join? I imagine it’s quite a common reason for people to withdraw from active service.
I would bet that nurses’ and doctors’ children have the best attendance records on any school roll, ‘you’ll feel better when you get to school’ being the response to most childhood ailments. I think there’s something about occupational exposure to death and illness close to death that can leave a person hard to impress! No wonder if the adult child finds himself wondering whether he’s sick enough to be ‘allowed’ to be a sick person whom people will automatically make some allowances for.
The obvious answer is to not give a stuff what other people think, but we’re social animals and few of us are tough enough to face that one down all the time, are we? And of course no one wants to decline into being His/Her Majesty the Invalid, who can be a tyrannical holy terror and a misery to all around. But there’s surely a middle ground where people cut us a bit of slack and kindly acknowledge that we’re doing our best even when our best isn’t great. I guess it’s a work in progress for all of us. And it’s a sad fact that everyone else has his/her own stuff going on and that this will affect how much patience they have to spare to be thoughtful about our predicament.
Hi there. In part I’m not totally sure what you mean or are asking but , at the risk of offending you, it’s reads to me that you are struggling a bit with coming to terms with the diagnosis of MS ? It’s is a s**t and it took me a while . Totally shattered my self image of a fairly successful guy , good salary, successful at work and in private life. Generally an enviable life style. You sort of try to carry on in that mindset while knowing that I’m no longer that guy. Retired early (with a decent pension ) and left with a mindset that , ‘that’s me , an aging guy with little to offer etc etc etc’. And no, folk neither understand MS nor what you are going through. Many don’t want to know - and why should they? They have their own lives and worries
So, it was time to make a new life, a sort of ‘new me’ with new ‘ambitions’ for myself on how to deal with MS, how to enjoy and fulfill my life with MS etc etc.
Somehow I had to ‘fix myself’. So, for a while i got myself some counselling sessions , just talking out all my fears, clarifying my emotions, some anger etc . I’ve also written down on paper ‘ what are the things that are important to me - a list of things and under each one , what am I going to do about them.
Thinking about the ‘you look well’ thing, I do think that illness makes people around us uncomfortable and saying (and pretending to believe) ‘you look well’ is really to reassure themselves that you’re OK really so they don’t have to feel uncomfortable about you any more. So it’s not about you at all: it’s about them. It feels like a put down - 'there’s not much the matter with you really, is there? - but that’s not really where it’s coming from.
Of course that’s slightly unfair: they also want you to be OK because they’re nice people and they like you and they want you to be happy. But what they really, really want is for them to feel comfortable and not awkwardly obliged to worry about you.
Hiya. Thank you so much for an excellent response to my morning musings.
Not really a tough guy thing but more a grin a bear it which adds to a perspective of ‘he doesn’t look ill’. Dealing with MS which seems to be some niggling pain but mainly my head is a shed. I struggle cognitively in a massive way whilst the ankylosing spondylitis (not fully diagnosed yet but seems to be based on bloods, scans and symptoms) makes it for an interesting ‘buy one, get one free’ scenario.
Whilst these things are going on privately behind the curtains, so to speak, I try to crack on and still do as many things around the house and garden as possible to not put a strain on the dear wife who has had to shoulder the financials now that I can’t work.
What you, and others, have said has helped me wise up to it being an adjustment period that’s needed. One that I have to own
The assistance side of things - It’s very much, one size doesn’t fit all, for me. There’s a myriad of differing perspectives, scenario’s and approaches that I have found only places like this can help jolt ideas out of my grey matter. I really have grown to appreciate this site and the people within
Are you kidding? You’d go to my Mum with an arm hanging off and she’d say ‘ach, it’s just wind, you’ll be ok later’ then you get the typical ‘wimp’ from the bootneck father. Not allowed to be ill
Your last point hits the nail on the head, doesn’t it? We’ve all got our own shit going on and wrestling with everyday and I suppose that it’s mainly that once something knocks you off your rails, only then do you see and feel what’s going on around you.
Ah, I’m not one that can be offended so easily @Hank_Dogs
I really appreciate your response. It seems to be a similar journey to mine. Six figure salary, global travel and work but then boom, I can about manage to walk the dog and feed the chickens each day which is a highly successful feat once I remember to do it
I like your end points in particular about owning the situation because no one is going to do that for oneself. I’ve had counselling in the past and don’t think it’d fit, for now, but I do understand the point. I guess that i’m using this forum for this purpose just now.
Ah, you were somewhat more successful than me! It’s is 14-15 years since I retired but I didn’t make the six figures and my work travel was around Europe . It is hard to reinvent and remain positive. I guess everyone does that all the time in response to setbacks etc but as with everything it’s just that bit harder with MS and is an ongoing ‘work in progress’.
I’m a great one for making lists whether of jobs/ tasks to do or more general nebulous things concerning my outlook etc. and dealing with MS through e.g exercise, diet, keeping mind and body calm.
I did and do find it useful to write down the things / aspects of my life which were important to me and what I wanted to do under each heading. I once came across a suggested exercise of drawing a circle in the middle of a sheet of paper and with various spokes running off that circle. The circle represents me and the spokes, however many, represent the important aspects / dimensions of my life eg, immediate family , travel and holidays, home and garden. Under e,g immediate family and at the end of the spoke I had a list of e.g ‘FaceTime parents twice a week for general chat etc, visit parents 4-5 times a year (they lived around 380 miles away).
I reviewed all this every 6-12 months and it changed when e.g my parents needed a lot more help ( both died a few years back and , fortunately at good ages).
I think that in general I was aiming to give my life structure and purpose ( in terms of what I thought and felt was important to me). Around that central circle was an outer circle representing my wife to whom I am enormously grateful and appreciative of her support and general ‘presence’.
Somehow, writing down everything gave me some mental/ emotional structure after the general mental/ emotional chaos and uncertainty ( the Black Hole?) of the MS diagnosis
You say that @Hank_Dogs but the success I had was more around the happiness of my daughter and wife than anything else.
I appreciate your perspective on these matters especially the writing down matters with the aim of adding structure. I worked in such a tightly regulated and structured environment which gives an ex-forces person like me such comfort, to have all that structure and order so rudely and promptly taken away may explain my ‘lost at sea’ moments.
I’ve found Siri to be my biggest ally now. Short-term memory being so short, as to add insult to the word short, means that, regardless of whatever current activity I find myself in, I can ask Siri to add a calendar note or message my future self to remember to order cheese, for example.
Who knew that there was so many things to remember until one has to leave messages unread, or add calendar invites for tasks like feeding the dog. A decade or so ago and the inside of my house would be as technicolored post-it-note collage of first world chores.
I shall take note to structure something from what you have said. I can no longer go bungee jumping or use a wing suit for base jumping but I can re-invent some daredevil tasks. Maybe knit a scarf or take up decoupage, I jest but seriously, this is a good idea.
I don’t know if you get MS News today but this guy (ex Green Beret and Ranger) posts quite a few rather good articles. This one is about staying ‘mission focussed ‘ : the mission being living as good a life as possible - which seems to be a good piece of advice!
I’m currently trying to work out whether a holiday in Estonia is a possibility or just a pipe dream!
I think there’s something about occupational exposure to death and illness close to death that can leave a person hard to impress! No wonder if the adult child finds himself wondering whether he’s sick enough to be ‘allowed’ to be a sick person whom people will automatically make some allowances for.
and the people within
