Personality change

I wrote the following some years ago, since then my symptoms have worsened, bringing many other challenges, Which have only served to reinforce my personality change.

I would be very interested if other people here, have experienced any similar changes to their personality or character.

I’m not defined by my disability, but I am by my reaction to it. In general I believe that I’ve coped quite well with the physical, and many of the emotional and mental aspects of my illness. With some difficulty and with lots help, I’ve learned to adapt to the ever changing symptoms as they developed.

From the day that I was diagnosed with having MS, I’ve spoken with my health professionals and read as much as I could on the subject, and so was prepared for many of the subsequent problems that arose, though being prepared for something, and experiencing it, are two very different things.

What I didn’t expect, and came as a complete bombshell, was how drastically my personality would change. Before my diagnosis, I had an easy going very positive outlook, I saw silver linings everywhere, and my glass was most definitely half full. Now every cloud is a supercell thunderstorm in the making, my glass is emptying rapidly, and the little that’s left inside is very bitter to the taste. I have become a mirror image of myself, from a person whose friends would describe as, wearing rose coloured glasses, to one who is blinkered to anything positive. Every new symptom, increase in pain, fatigue, and even financial worries, all had an effect on me. By far the biggest effect on my personality however, is that MS is a progressive disease, meaning my future will be a continuing downward slope, over which I have little or no control. I can’t help but feel that an important part of me has been stolen away, like a character from The Body Snatchers, taken over by an alien while I slept. This change has not only been dramatic, but happened very quickly when taken in the context of the rest of my adult life.

That inability to influence the outcome of a major part of my life, has reminded me of something I’ve always been aware of, but failed to fully appreciate, that ultimately everyone is subject to any number of outside forces that could fundamentally affect the course of their lives. My former belief that the world is basically a hopeful place, if not wrong, was naive. For many people the world is a very difficult place, and no amount of positive, or for that matter, negative thinking will change that.

I hope none of this reads like a self-indulgent rant. I know that I can be prone to that on occasion, or that I think everything is doom and gloom, far from it. There is much in my life that’s very good right now, and I still look forward to many things. It’s meant to be an honest attempt to put into words some of the debates I’ve been having with myself lately, and what, if anything I can do about it.

Even if I could jump into the TARDIS and go back in time, it would not change any of the facts. I would still have MS, and still be facing an unsure future. If I want that future to be as comfortable as I can make it, then I must decide what my priorities are. I think it is time for me to see myself and the world as they are, and not what I would like them to be. If that means accepting that I am a very different man to the one that walked into that doctor’s office before my diagnosis then so be it. I should not see that as a weakness, but as an opportunity to re-energize my efforts in those areas of my life where I can still make a difference. Worrying about whether I’m an optimist or pessimist, and things I cannot change, is a waste of time and energy, that would be better spent on what is really important.

And so, let me introduce myself. I’m Steve, a grumpy old man who has MS.

I’m off now, to listen to, The Dark Side of The Moon, but this time without any sadness or sense of loss, just an appreciation of its brilliance, and if that goes well, I might even try some Leonard Cohen, or Mazzy Star. (I’m feeling brave).

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I think a person has to be some philosopher to recover from the rude shock of finding out what rubbish is the comfy notion that we steer our own ships through the waters of some Panglossian best of all possible worlds. :slight_smile:

And no, I haven’t managed it yet either.

Alison

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Great post Steve and yes, I completely get your point and feel the same many days.

Stephen

I too have changed with a sedentary approach to life. I appreciate every day as this condition continues, a bit like the Wizard of Oz… The brains of a scarecrow the joints of old Tin man but the lions courage is key for me… It is difficult all the time & I am with you on the way the personality changes. I used to be a bit uncertain could not see the world for what it really was. This is the gift of realising the truths that lie out there in the world and being careful is key… for me.

I am happier being a bit grumpier Outwardly!! Now if i am in a queue or situation that does not agree with me physically, i don’t have no bad feelings about letting go of that stress. Embarassing for the others but not for me…COURAGE! The lion in me.

“Put em up, put em up!” i say…

More power to us…

Seeing a clearing & Going for it…

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I was eleven when over a million cubic feet of coal waste obliterated an entire school in Aberfan. I kept the newspaper article for a long time.

Later I was astonished by how much hatred men could feel towards others as I discovered the death camps of the Second World War. And I was stunned when I realised that so few men could destroy the planet, with their warheads, at the flick of a switch.

But, for all the feelings I experienced, I was a detached observer. These things didn’t touch me. They didn’t belong to my world.

Now I have a personal crisis to confront and I can’t forget that it happened. I can’t look at it and walk away. I can’t fold it up like a piece of paper and put it a scrapbook.

I am in the full knowledge that complications from MS are likely to be the cause of my death. I’m like a submarine on it’s last dive. Watertight compartments are shutting down and bulkheads are being sealed off until the hulk finally buckles under the pressure.

Is it any wonder that I’m a different person to the one I used to be. The question is, what sort of person do I WANT to be.

I can choose.

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Hi Steve,

I think most of us will get what you are saying. For me, this is what I am currently struggling with the most. I have only been diagnosed since October with ppms and it has hit me far harder than I had expected after spending about 3 years reaching a diagnosis point and being pretty certain during that time that I almost certainly had ms. I had thought it would have little change to how I already felt to actually have a diagnosis but I was wrong.

I am still trying to get to grips with the new me and to understand her as well as I did the old one and I am finding it difficult to meet friends and loved ones expectations that ‘you are still you’

I am not. I am a whole different other.

sallyx

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Hi Steve

This is something I have often said upsets me the most about ms and I have referred to as one of the most hidden affects of ms.

I was always very outgoing whereas now I have lost a lot of my confidence and I get embarrassed when I am struggling to keep up with conversations, I feel like sometimes I just don’t have a lot to offer anymore.

The haunting sadness and living in pain does get to me as well.

I choose to look at the little picture these days because the big picture is scary… one day at a time!

Always take the chance, now I am cautious. Strongest there, now I need defending. Self assured now I cant make even small decisions easily.

So Steve, I agree entirely, I am by no means the same person I was.

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Hi Steve

I was diagnosed a year ago. My first symptoms were 37 years ago but thankfully they disappeared for a long time. I was pretty certain that it would be MS once problems started showing themselves again.

I have always been a glass half full person…happy, smiley and very positive. The diagnosis most definitely changed me - for a long time I was suffering with symptoms and trying to get them under control. I was miserable, cried a lot, felt VERY sorry for myself and I wanted sympathy! I didn’t like me then, not one little bit.

Gradually over the past year I have been coming to terms with my symptoms, getting medication that deals with most of them, most of the time and I have been trying to get back to being me again. I can say that right now I feel like my old self…thankfully pretty symptom free now, back in the gym and looking forward to life. There is and always will be a tiny part of me that goes into ‘what if’ mode if something new happens, but i’m trying to take things one day at a time - which is all any of us can do really.

I am not who I was - but i’m as pretty damn close as I can be and that in itself makes me happy.

I wish us all the very best our lives can give us.

Juls

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Thanks to everyone for your comments, it’s very reassuring to know that others have had similar experiences, and understanding.

For a very long time following my diagnosis, I felt like being woken from a childhood dream, where I was surrounded by my friends, everything tasted of chocolate, and the warm wind carried the comforting sound of my mother, into a strange, frightening world, unable to understand the language, and lost in an unfamiliar landscape with no map to show me the way home.

Learning how to navigate this new land, was for me, quite difficult. My first thought was to find a comfy corner, and pretend I was still in the dream, of course that approach was never going to work, nothing magically disappears by simply ignoring it, or wishing it away. Sooner or later, I would have find a way to face my fear, " Grow up"and “Come out” so to speak, into reality, however scary that seemed to be.

I cannot say that I like, or fully understand where I now find myself, but at least I have finally accepted it, and where I go from here is in my hands.

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  • Well Steve you sure waxed lyrical there.it hit the nail on the head,as they say.I feel that you
  • Have said exactly ho you w the majority of us feel.me! Most days I don’t even like myself never
  • Mind anyone else.I have alienated myself from even members of my own family.people must say"she’s depressed,unhappy,anxious, all I can say is try and walk in my shoes for a day and then see how you cope.oh!and by the way the next clever d I c k that says"at least
  • It’s not terminal" then I will forget that deep down I am A Nice PERSON…
  • GRIP IT BY ThE BALLS. Pardon the grammar everyone…
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  1. Denial

  2. Anger

  3. Bargaining

  4. Depression

  5. Exceptance

The 5 stages of grief, how apt to this conversation. It feels like a bereavement, I feel a part of me has died, haven’t got to 5 yet, 12 years on, maybe I never will. I fluctuate between these points, sometimes all together, but ever present. I’m haunted by the past “me” but she’s gone, now I am a new me, & I can’t say I like her, I miss the original “me” but I can never get that 1 back. I’m at 2 writing this, but at least it’s invoking some reaction in me. Oh God, how miserable I sound, sorry. Tracey

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Tracey I’m miserable with you. I’m crying writing this. Crying because my boss took a job off me that I could do becuase she didn’t want me working when poorly. I’m not poorly I had my injection last night and it knocks me. I’m crying because I shouldn’t need help I should be at work its a job I’m more than capable of!!I just can’t do it fast enough. Also I have to pick up my nan later whos in her seventies to walk the short walk to my daughters school to get her becuase I’m scared I will fall etc and I know I simply will not make that walk. I feel useless. Don’t know what point I’m at but it’s not nice. And no this is nothing like me normally. It’s nice that this forum is here I just upset my loved ones if I tell them how down I am. I know I should be grateful for all the help and I am I’m just I’m sad I need it I used to be so independent capable and strong. Sorry everybody.

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To be honest Tracey, after 20 years I veer between stages 5 and 2. I generally accept that this is me now and it’s not likely to get any better. But reserve the right to every now and then swear like mad at the damned disease and my disabled body. I too miss who I was.

I think if you can avoid depression, or get past it however you can, then you can learn to live with MS, even if it takes time to come to terms. It’s dwelling in the pit of despair that makes life really difficult.

Sue

Bless you Flutterby, I’m sorry if I’ve made you feel horrible, its a s**t this bloody thing, reading your post I realise how more fortunate I am than others, I don’t have young children to look after & I dont know how I would feel in your position. All I can do is send my love to you & might be a cliche, but your not alone & anytime you need someone to sound off at feel free Tracey x

steve

both your posts were so beautifully written.

that bit of dreaming that you were a child with the smell of chocolate and the comforting sound of your mother’s presence… wow.

saying you were off to listen to the dark side of the moon, again wow!

such poetry in amongst the misery and pain.

i salute you

carole x

Thanks Sue, I do try to miss the depression bit nowadays, get more angry at myself more because I can’t do things but really I know its a vicious cycle, because its the bloody MS which means I can’t do things, there should be a 6th part, flipping frustration!!! Tracey x

Thank you Tracey x the second I pressed post I felt awful because I know I am better than others who deal with so much more I guess sometimes it’s the 26 year old me feeling restrained. I don’t think I’ll ever accept ms and needing support. I am lucky and genuinely happy it’s that awful black cloud hanging over it soaks you because when it rains it pours!! For a minute it takes me off guard. Love to you all … I have found a chocolate bar in the fridge silver linings x

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Sorry Steve, in my self absorbed misery, I forgot to say Comfortably Numb does it for me, awesome, in fact, that will lighten my mood! (Might throw in some Bon Scott whilst I’m at it) Tracey

You enjoy your chocolate, I’m going to have a virtual head banging session, glad your feeling better, here anytime Tracey x

Hahaha I have just put Bon Scott on… “tell you about my baby”… “makes me feel so good” … I’m laughing whereever you guys are I hope you are listening to it to. Thank you for expanding my musical repitoire! X