Blame and causes of MS.

Everyday living
1

Hi everybody, sorry for anon- bit crap at talking about how I feel.

Having some really difficult emotions at moment; been reading lot about causes/ triggers for MS and everywhere I turn I come across EBV (Epstein Barr Virus) I remember an ex of mine at the time I started getting ill, mentioning once that they were a chronic carrier of EBV (I got quite annoyed at the time, thinking I could get ill-tonsilitis or mumps I thought, I had no idea about MS)

Seen on facebook that this person is getting married and buying a house and is very happy and sorted (so different to my life- single for years, living with parents, no job/money, not many friends etc) I just keep thinking I’ll probably never see those kind of milestones in my life now.

I would never blame anyone else for my MS and I know there’s no proven cause and even if there was it would probably be down to multiple factors (bad luck included) but I just feel so terrible going over all the what ifs and things I could have done differently, I feel so angry with myself wishing I could have done things diffrently.

Sorry for being so self pitying, know there are worse things going on the world, just wanted to talk to people who might understand-get advice how to stop feeling like this.

2

Greetings

I think at times we all wonder about this. What happened? When was the turning point?

I think ms is caused by many and varied conditions, different for everybody. The moment somebody has a theory as to its cause, another has a reason to dispute it.

I control my ms with diet. Removal of my amalgam dental fillings have seen further improvements, at a time when I was about to hang up my clogs, physically.

The real reason we shall probably never know. It is most probably in the hands of the gods, but these elements help me to some degree. Of course it is far from the result we all seek. At least it is a start.

Mark

3

They say a virus may be the cause of being type 1 diabetic http://www.umm.edu/patiented/articles/what_causes_type_1_diabetes_000009_2.htm

Now I was told that thyroid, type 1 and MS go hand in hand its down (maybe to type of genes)

I don’t think you can blame a ex for MS I never had mumps, tonsilitis, measels or the flu yet I have MS.

I would love to blame a ex as maybe I could sue then be able to buy my own place again

Anyway back to the real world, I would put this energy you have for ex and past and move on and fight
your MS and work on a plan for a social life.

Your situation is similar to mine and if I lived thinking about past ex’s and what lives they have now
I would have gone mad.

Talk to friends, or goto MS branch as its a easy way to meet new people and get out.

4

I think you’ll find most adults have been in touch with the Epstein Barr virus and there are lots of diseases that are linked to it, usually those diseases that no one knows the cause of!

Wendy

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5

EBV is looking like a bit of a dead cert as one of the main factors in developing MS, but there are others too and only having EBV is absolutely not enough to get MS.

I got glandular fever when I was 16 - from my (now) husband. Do I blame him? Nope. Plus I have no idea if I’d already had EBV by then - it causes milder fevers & sore throats etc as well as glandular fever and I’d had plenty of them growing up.

One of the other factors is a lack of vitamin D in the womb. Do I blame my mum? Nope.

Same goes for genetics and vitamin D while I was growing up (why oh why did my dad take that job in Glasgow?!).

I do wish I could go back and talk myself out of smoking - that one I did to myself. Stoooooopid! Still, I didn’t know at the time that it increased the chances of developing MS.

There really is no one to blame. As you said: it’s just bad luck.

Remember that lives displayed on facebook are often very different to reality. I was once unbelievably jealous of a girl I went to school with because she was living with a boy that I had long had a major crush on. I told her, years later. She just laughed. She had been utterly miserable - he had been cheating on her and treating her like dirt the whole time; she had married someone on the rebound and had been physically, mentally and sexually abused by her new husband for many years. She is one of the nicest people I know and deserves to live like a princess. Life had other plans.

You still have time to make changes and hit some milestones yourself. Never say never!

Karen x

6

Hi

As you and everyone else has said, I don’t think you can blame anyone (or anything) on getting MS (you don’t actually say that you got EBV yourself). And it’s natural to feel angry - it’s part of the normal grieving process (do a google search for ‘stages of grief’ and you might find some stuff you can relate to).

Beating yourself up probably isn’t going to be helping your body very much, so it might be good idea to start to forgive yourself. And I reckon there’s not a right lot we can do about our past - what’s happened in the past has happened. However, what we can do is take responsibility for our present. If you feel there’s mistakes you made, then try & learn from it. And spend time looking into the things that could help you physically and emotionally - diet, exercise, positive psychology…

Dan

7

Hi, I believe that the stress of moving house and going back to work (after maternity leave) in the same month triggered my ms. I had bad post natal depression for months and I think the combination of these events was too much stress on my emotional and therefore physical health. I try not to dwell on this though as it was what we wanted to do at the time and I had no idea how things would turn out. Plus of course it could be pure coincidence and it would have happened anyway. I try not to stress about the what ifs because it does me no good although easier said than done. I hope you are feeling better soon.

8

Even if you blame yourself for everything that goes wrong in your life, whether it’s your fault or not, MS is the one thing that is absolutely not your or anyone else’s fault. Even I don’t blame myself for having MS, and I’m an Olympic-standard self-blamer normally. So please try to let yourself (and other suspects) off that hook right now. It’s human nature to cast around for someone to blame when filtered word happens, but sometimes life just isn’t like that. Please give yourself a break here - you have enough to deal with without festering about what-ifs.

Alison

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Also, Karen’s dead right about FB. If you went by FB status reports, it would look as though your whole circle was enjoying a gilded life of fab holidays, brilliant careers, gifted children and dream homes. No one broadcasts to the world that the fab holiday is a desperate effort to shore up a failing marriage, the brilliant career is heading down the toilet, the gifted children are managing to fit Class A drugs into their busy schedule, and the dream home is about to be repossessed.

A

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Slightly off topic - when and where were you in Glasgow? I’m a Hamilton girl [just 12 miles away] went to college and worked in Glasgow.

Liz

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I think that if there was one particular person or thing to blame for people getting MS, that person or thing would not exist for very long. You have MS because it’s there, you’re right about the bad luck - I have a brother who is 2 years younger than me, we grew up together, did mostly the same things, he seems to lead a charmed life - he doesn’t have MS, I do, our mum did too. S***t happens. There is no sense looking back at all the what ifs, and there is no sense being jealous of what others have, it’s not healthy, and stressing about these things will make you ill, that’s a definite.

Hope you feel better soon,

Luisa x

12

Hi anon, I think you’re showing some classic symptoms of depression. Looking back with regret. Looking at the lives of others with envy. These are very obvious signs of depression that are caused by negative thinking. The good news is that this type of thinking can be changed by a form of therapy called Cognitive Behaviour Therapy or CBT. Your GP will be able to refer you for a course.

Don’t worry… it’s not a case of going every week for years and talking about how your mother forced you to eat weetabix every morning! It’s a quick, practical course that teaches you how to change the way that you think so that you don’t get caught in these negative ‘loops’.

Google it and see what you think.

Good luck and hope you feel better soon.

Pat x

13

For the record I didn’t say stress caused my ms I said I believe those events triggered it for me. For whatever reason i was predisposed to having it. Obviously there are a lot of other far more stressful circumstances which people endure and they don’t end up with ms. The point I was making is that i too have tried to ‘make sense’ of where it has come from but dwelling on the what ifs doesn’t do a person any good.

14

Hi Liz.

I was in the south side of Glasgow from 1968-1987 (Crookfur very briefly and then Clarkston till 1984, then right opposite Queen’s Park for second year of Uni (Strathclyde), next to the Queen Vic Hospital for third year of Uni, then back to mum & dad’s in Clarkston again for the last year of Uni, 1987). Moved to St Helens, Merseyside, 1987-1990, then back to Clarkston 1990-1994. Worked all over Scotland 1990-1994 including calling on Asda, Hamilton to sell them pet food :slight_smile: I remember the Grocery Manager there with some amusement. He was very hands on and I would always find him with his sleeves rolled up moving fixtures about or something, but he was useless at stock control. Just one or two arguments we had about that… :slight_smile: Just remembered - the parking there was awful! Am I remembering right?? Didn’t they close that store though?

Where & when did you work / study in Glasgow?

Kx

15

Hi, you don’t say how long you’ve been DX, I’m taking it as not being long, I think in the begginning we wonder way, I know for me the first thing I said when the specalist who work in the stroke dept, (because at first that what they thought had happened), when he said you have lesions on the brain, this could mean you have MS, I said where did they come from, how did that happen, and you start to troll the net looking for reasons why it has happened, and thinking if only, well I don’t know whether it’s just me, but I’ve stopped all that now, I just try to get on with my life the best I can, I know it’s hard for you, and I’m really sorry you’re having a bad time of it, but being and feeling like this, and I’m sorry to say wasting you’re time looking for reasons why, when you should be living you’re life to the full, and who’s to say you can’t have these things, ok in a different way, but still have then, god I’m sorry if this all sounds a bit hard, I don’t mean it too, you take good care, ((((((HUGS)))))), Jean x

16

Hi,

I’ve been reading the books by Catherine M Simone on Interstitial Cystitis recently. Her third book - I think it’s called Awakening Through The Tears is about the mind/body/spirit link and illness, and about how we attract illness to ourselves. What makes us more likely to get ill with MS, IC or whatever than someone else? It means having a good look at what led up to your illness, possibly for several years beforehand, and being really honest. Catherine felt that she was letting others walk all over her and that getting ill was her body’s way of getting her to slow down and re-evaluate things. Forgiveness isn’t about letting others off the hook for their bad behaviour, but about allowing yourself to move on and heal.

My “trigger” for MS was pregnancy, but there’d been a lot going on emotionally since childhood before that. I realise that I need to let go and move on.

Just a thought.

Heather

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Heather I want to kick off by saying that what follows is not a criticism of you at all, it is a comment on Catherine Simone’s approach as you outlined it.

I think that the theory that we attract illness to ourselves (and, by implication, are responsible for it) is toxic nonsense. Harmless nonsense is fine: toxic nonsense isn’t. It is just dangerously wrong-headed nastiness, and I think we should all avoid that sort of thing for the sake of our health and sanity.

Alison

18

Couldn’t agree more, Alison.

I don’t want to sound critical of Heather either, but I can’t go along with any therapy that is based on analysing how we “attracted” bad things to ourselves. OK, sometimes our own bad or foolish actions do lead to unhappy outcomes, and in those cases, it’s worth understanding the mistake, to try to avoid repetition. But I simply can’t accept that everything bad that happens (or good, for that matter) is self-induced. Sh*t happens. That’s all there is to it. We don’t have as much control as we’d like to imagine, and sometimes stuff happens that we couldn’t have caused OR avoided.

A friend of mine has sarcoidosis - sometimes just called “sarcoid”. Nasty thing, with similar presenting features to MS. Sometimes spontaneously resolves, but occasionally fatal.

She’s seeing a therapist, abroad, to examine what she did to cause it. I find it very difficult, because she’s such a clever girl, yet prepared to pay good money, and travel to another country, to hear this kind of thing.

Maybe it makes her feel better, to have the illusion of some kind of control over it. But there’s no evidence sarcoid is psychosomatic, any more than MS is.

Tina

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Sh*t happens. That’s all there is to it. We don’t have as much control as we’d like to imagine, and sometimes stuff happens that we couldn’t have caused OR avoided.

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Tina, I think you have hit the nail on the head with the control point. I think we are very bad, in general, at getting our heads around how little control we actually have over what happens to us. The daft theory that our behaviour can attract MS is a good example of this ‘control fallacy’ at work. That’s the trouble with us humans - we think it’s all about us!

Alison

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20

Hi Anon.

I dont kow if you are still reading responses to you original but if so then I hope this helps (and I would be quite happy to continue sharing experiences and feelings).

First some general stuff - migh be boring and frustrating to read but bear with me.

Yeh - MS is st. Totally and utterly, I think we are some of the unluckiest people in the world. Not the unluckiest by any means - I would hate to have been born in a drought/famine/conflict/poverty ridden place (and for example I am a male but oh my would I hate to have been born a woman in some of places where women are treated like 'st). There are some far worse diseases to have (I haven’t counted them up and compared them but MS must be up there). And by and large all those unfortunate to have those diseases did nothing - nothing - to deserve them and the cause if known are quite out of their control.

But turning back to we ‘unfortunate few’ - yes why oh why did this happen to me. MS - a disease for which there is as yet no known single cause, no cure and its impossible to be sure about how it is going to progress.

In terms of cause well no one seems to know but from what I can see the general picture seems to be one of a particular genetic make up that can make people susceptble to MS. Various environmental factors can then contribute to and spark off the MS. In my case I can see some particular events coupled with a bad long lasting flu type thing as being the ‘tipping’/triggering point although I can also see possible very early symptoms from much earlier days… So for you - who knows it might have been the EB virus - could have been other things, a combination of things, perhaps a complex mix and interaction of things .

I have seen and known some who have MS and what has happened to them is not very encouraging. So yes - its a horible, horrendous new reality to be dumped on us. Awful - and in everything I do there is now the black cloud of uncertainty, fear, and a loss of identity; confidence; sense of worth and of ‘being a man’ and some limitations - perhaps worse to come.

So yes its awful and you - all of us are bound to feel angry, confused and lost. And it is quite understandable and natural that you want to target that anger and upset that You aren’t alone. Not at all. I retired early becaue of MS or rather because I wanted to make sure that I would have time to do something other than work before the MS hits too much. What I hadnt counted on is that at work I had a (relatively) important role and I think that (within limits) what I was doing was worthwhile and I was adding somehting - had something to offer. And I suppose that in the past (pre MS days) I had looked forward to a happy retirement and old(er) age. But now I am struggling to balance the freedom that retirement gives me against the feeling of worthlessness - a middle aged guy who is no longer a ‘proper man’ has somewhat unpromising prospects and might well come to rely totally on others. Somehow or another I , we, you have to face a new s…ty reality and get what we can from it.

I havent a clue what I am going to do - other than make it up as I go along and try, try try, to take and enjoy as much as I can. So - and I know this might sound patronising or perhaps insulting to your feelings - but yes feel angry, express your anger, write it down, sit there and write in anger and fear (write them about and to your ex if it helps - but whatever you do dont send them to him/her - it will just make you feel worse!!), just keep doing that over and over and over. But also begin to write down your new reality - exactly what it is and then slowly identify the things that you can take from it. The things that please you and be kind to yourself - take time to try and experience and enjoy the new things. Oh I know I am going on and on and I’m sorry for that. Its all much easier said than done. I suppose I am just trying to say - yes its crap, and it probably (but who knows) wont get any better . But lets take and enjoy what we can get from the time and possibilities left to us.