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A life ruined by multiple sclerosis

Really what you said isn’t a rant, just the facts and everybody needs to vent sometimes. This disease makes everybody irritable and difficult. It feels like everybody’s making fun of you or just trying to get on your nerves and you want to just lash out like a cornered wild animal at times.

I’ve been accused of having delusions of grandeur, that by referring to people around me as “them” makes me look like I have some sort of superiority complex. I don’t have a superiority complex. But there are certain facts that CANNOT be overlooked. I graduated 2 universities, for one. I have a master’s degree in English teaching. I’ve travelled. a lot. Seen places, met people.

Just the neighborhood I live in; I’ve been living here close to 20 years and within the first 6 months, you could tell pretty much what everybody around you is made of. And then you figure out how poorly educated and culturally dim they are. You have nothing to talk about with them. You try, oh you try so hard to connect with them at some level. But there is nothing.

English is my life. It wasn’t just a job(like the way most of my colleagues see it here) I feel like I’d been dead until I actually had the chance to see, to experience the US. Not just the US, the outside world. To get a chance to see what’s going on in the world first hand. And that of course, messed me up for life. I’m stuck in a constant culture shock that simply won’t go away.

I’ve tried to get out. To make some new friends(or any), to interact with people somehow because I’m no introvert and need to socialize. I’ve tried local foundations for people with disabilities, tried free occupational courses funded by the city to try and get to know new people and I realized people are severely turned off by the thought of having a disabled friend. You could see the disappointment in their eyes when I tried to talk to them or get friendly with them. And that made me even sadder and more depressed.

I have to go to same place to eat(and I realized I’ve severely understated the distance I travel) mostly because it is the cheapest place I could find so far. When you are on a budget as tight as mine, you have to compromise some things.

Fair enough dude. But now you ARE among friends. There are some clever people on here. (I’m not claiming to be able one though. My grandfather always told me - Keep your mouth shut and look stupid than open it and remove all doubt…) I graduated with a first, but not in anything helpful. :smiley: But be positive. We’re all here for you. Take care, Andy.

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It’s a good job my invisible Skittles eating friends won’t talk…

I know you miss social interaction as well as intellectual stimulation, but for the latter at least, can I recommend Futurelearn? https://www.futurelearn.com

It’s all online, and it’s all free, and it’s high quality education from leading universities and acclaimed centres of excellence around the world. There are dozens if not hundreds of courses to choose from - you’re sure to find something that interests you.

They are almost all delivered in English, but your English is more than up to it.

A small minority of courses are delivered in the native language of the presenting institution, but with English subtitles.

With no cost, and no penalty for joining a course but not completing it, why not try a couple?

It has discussion forums, but (as yet) no way to private message fellow students, so it’s not going to open up huge social vistas, as there’s no way to swap email address or number with anyone. Although you register and post in your own name, not a nickname, so there are possible ways round it by inviting people to search for you on social networks, IF you wanted to pursue a correspondence off-forum. I’m sure it would get removed due to privacy concerns if you posted your personal contact details, but if you posted: “Just search for me on Facebook/LinkedIn and I will add you”, I can’t see that you’ve given any more away than by posting in your real name in the first place. You are ONLY discussing with people who also want to learn, so you know you have at least that much in common.

Also (from what I can gather) quite a high proportion of students are retired or sick/disabled - people for whom conventional university probably wouldn’t be an option for whatever reason. So nobody’s going to laugh at you for being ill or not working - not that you have to disclose it of course - but once or twice I’ve disclosed - usually because it was relevant. Once was on a course about the brain, and we were invited to summarise why we were interested - several students, including me, said it was because they had an existing neurological problem, which they hoped to understand better. Another time was when a fellow student on a Dutch course, discussing the favourite Dutch mode of transport - cycling - said she wouldn’t be able to, because she has MS.

So that provided a natural opening to say: “Oh, bad luck - me too!”

If you’re interested in languages generally, not just English, another site I’d recommend is Babbel. This one is not free, but quite modestly priced. I’m learning Dutch and Russian on there. I suspect the English course would be too basic for you, but you might be interested in learning something else. Also, when you get tired/bored with learning, you can stop to help people who are asking for assistance with their own studies. It’s not paid, of course - purely voluntary, as a pastime. But I usually find the people I help are incredibly polite and grateful. Also it’s really interesting, because they ask things I’d never considered about my own language: “Why’s it A, and not B?”. Sometimes I think: “Oh, what an interesting question; yes, why is that?”, and have to think really hard before answering. So it makes me see my native language (English) in new and interesting ways - as a foreigner sees it. As you have been a teacher, you may find it is an outlet for some of your teaching skills. There’s always a stack of people wanting things explained, or wanting a native speaker to correct a text they’ve written.

A free language site is Duolingo. This offers a similar selection of languages, but is a little more quirky. Sometimes you are asked to translate very strange things, such as: “His grandfather is a sheep”, or: “I’m sending the galaxy through the mail.”

But once you get used to the surreal brand of humour, it’s really quite good.

Tina

x

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There is an online translation company called Flitto. It may be a suitable way for you to make use of your language skills and earn some extra income too. :slight_smile:

My heart goes out to you. My smart, funny, clever daughter ‘confessed’ that she’s had overwhelming anxiety all her life . She’s got a great job, has started weightlifting and joined a choir. You need to get out of your parents’ war zone. Or tell them how you are being sucked down into depression.

Changing your life to looking out, not into a deep pit will be magic. Maybe there’s a local course to help you get outside? Many people are lonely and sad and you may be surprised at what is on offer! Okay, lots may be retired, but appearances can be deceptive. I’m in my mid fifties and feel 31 . A good age to be.

antidepressants can help a lot. I’m far better at coping with life’s ups and downs now that I’m on escitalopram. Walking is really great for endorphins. I bought a static bike as my knees are too badly damaged to walk far. I love cycling to music. You never know what’s around the corner.

You can always say that your crutches are from an injury. I use a stick and tell the truth - that I have completely ****ed knees.

You will meet good people who will like you for you. They are golden. I will make a wish for you and I hope you manage to get a better life soon.

very best wishes for you to meet some great people soon!

K

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Thank you so much. That means so much to me. That’s all I was looking for: Some support, somebody I could talk to. I think I’ve laid out the reasons why communication with anyone in my immediate surrounding is near impossible.

Last week, I ran into an old acquaintance. Before I worked for the state, I taught in a private language school for a year where I met some pretty cool people like doctors, nurses, lawyers and other teachers, because I had made a name for myself: “Wow, this guy speaks just like an American. You gotta see it to believe it!” After I got state employment, tenure and full medical coverage, I honestly didn’t really feel the need to call any of them up. And most of them either got married or transferred out of town or their numbers had been changed.

Anyway, this guy is a retired English teacher(retired through age, not like me) and he had attended my classes just to get a chance to talk to me. And he has a great idea: A speech class for English teachers. That is one of the things I’ve seen that this country sorely needs. The teachers could write book after book on grammar and rules and everything but when it comes to practical skills, the majority usually sucks so bad. Back to topic, he took me to this language school and introduced me to its owner with this idea. 5 minutes with the guy and he was more than impressed. If I had told him I was American, he would have bought it. There are certain things I have to be careful about, though. Due to the circumstances I got retired, I cannot officially work on the clock anywhere or I’d lose my pension and healthcare coverage. And when the pills you take cost 85 dollars each, I can’t risk it but I’m sure he’ll come up with some plan, and I could use the extra income. I dropped off my resume and currently I’m waiting for him to get back to me.

So thanks again for the moral boost and take care yourself, Aydin.

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Aydin - dude ! That’s brilliant news !!! Really happy for you. Hope it all works out, and you find what you’re looking for. We want frequent updates !!! Well done mate. Take care, Andy. :slight_smile:

I had to come back to this thread as I wondered if the help I had might help you. Lots of people tell you to have a positive attitude and that you’re not alone. I heard all that kind of stuff and thought “well I’d like to and I try to but it just feels like pretending”. The question is one of how to develop that positive attitude. It sounds like you just don’t know how - if that’s how you feel then you really aren’t alone, that’s how I was. I started my MS journey with walking problems and bowel incontinence and after 15 months I was told it was a clinical isolated syndrome that may be the start of primary progressive MS. Then just left alone to see whether it progressed. I tried to keep a positive face on things, but every time I was alone, even just brushing my teeth, I’d be sobbing. I felt suicidal and admitted I needed help. I started on antidepressants but was fortunate to also see the clinical psychologist at the neurology department.

Okay, so you’ve heard anti depressants and psychologists before, but bear with me…

The first few sessions we went through my history and talked about all the standard things you’ve no doubt heard psychologists say before. I tried everything as I had nothing to lose, but even though I knew the logic and sense of it, it didn’t actually make me feel any different - it was still pretending to feel good.

But then I went my next session and my psychologist told me we were going to try something different. She said she’d been reading about Compassion because it was the new buzzword in the NHS, but as she was reading some literature she kept seeing me in it - all the examples it talked about were just like me, they had the same kind of history and events in their lives, they said the same things I said to her, so perhaps it was worth looking at.

It is all based on new understanding of how our brains work, but I won’t start with that. The best explanation I got of it was to think of your brain as like an iphone. You have different apps on your iphone and use them for different things. If you’re like most people, you get distracted. I might want to check how far a journey is so I go to my iphone to use navigation, but see I’ve got a facebook notification, so go onto facebook. Then after going on facebook I usually check my emails, so I automatically go to my email account. After looking at them I put my phone down. Some time later I realise that I forgot to actually check that journey. What went wrong? I used the wrong app!

So it is with our brains. The science bit is that they’ve found we have 3 main systems in our brain: there’s a drive system, that makes us seek food, shelter, etc. That rarely goes wrong. There’s a fear / anxiety system, that helps us deal with threats. And there’s a soothing/contentment system - the one that makes us feel better / happy.

I was well aware of my fear / anxiety system, but the idea that I had a soothing/contentment system was news to me. But sometimes, for reasons in the past, some of us find ourselves in the situation where that soothing / contentment system doesn’t work very well. So this therapy approach, called Compassion Focused Therapy, is about two things: firstly learning how to activate that system, and secondly, learning to recognise when you’re “using the wrong app”, relying on your fear /anxiety system when actually that soothing / contentment system would help you more.

My psychologist explained it was a new approach, but had proven effective, and in particular, it was proving effective with patients like me - the ones who said that all the conventional stuff they’d tried didn’t make them feel any better.

Conventional therapies would say things like “If you’re finding it hard to walk to the bus stop then start by walking 20 yards, then 40 yards and gently increasing the distance”. Compassion focussed therapy would say start by activating the soothing / contentment system. It’s really hard to talk about how you do that without sounding a bit stupid, particularly to people who have got a pretty good soothing / contentment system anyway. But it sounds like you don’t know how to use that system, and if that’s right, this is the booklet for you, which explains the theory, gives examples, and gives the exercises.

http://www.compassionatemind.co.uk/downloads/training_materials/3.%20Clinical_patient_handout.pdf

I was actually quite terrified when it was explained to me. This wasn’t just about my MS, this was about the whole me - would I still be the same person after trying it? I’m happy to report that I was, in fact I felt a better sense of who I am and have a lot more confidence in me.

I really hope you do give it a try and stick with it for a few weeks, really giving the exercises a go. It doesn’t sound like you’ve got much else to do, your english is good, and it’s free - the booklet is really all you need. Some of the exercises won’t work at all, some of them will. I didn’t notice much difference in the first few weeks - but I did get around to putting up some coathooks I’d been meaning to do for 12 months, so that was progress. I stuck with it and spent a couple of months on it. I found compassionate letter writing a really hard thing to do, but trying to write a letter to myself without giving advice was the most worthwhile thing I’ve done. Now I can get into that state of mind more easily and I can kind of think about problems better, and often end up amazed by how I turn things on their head.

2 years have gone by and I still catch myself “using the wrong app” - but the thing is I catch myself doing it, and can turn the “right” one on. Since then my walking has gotten much worse, I’ve lost the use of my right hand, my husband has had severe clinical depression. Things haven’t been easy at all, and I have times when I get frustrated and fed up. But I now feel like I have the tools to help me feel happy overall.

Good luck!

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Hello TrippySpice,

I mean no offense and in no way want to sound disrespectful, but I’m doing the same again. I join a group, or a forum and soon after everybody’s rushing to find something to help me. I try the methods put forward and at most times I feel much worse than how I started out. I will give it a try, nonetheless so thank you. You said you are married. See? there you go. The one thing, the only thing in life I simply could no make real. Forget marriage, I’ve never even had a girlfriend. I’ve been sick through most of university and the second they find out you are ill, your so-called friends disappear into thin air. Here’s another confession for you while I’m at it: I’m 32 years old(birthday is on July 23rd) and I am yet to hold hands with a girl(forget anything else). In the 15 years of my adult life, I’ve only been interested in 3 women(1 in university, 1 after graduation and 1 after I started working for the state). Especially the last one devastated the hell out of me. She led me on, gave me hope(and she was 9 years older than I am), treated me like I was special(we’d met at a seminar and she’s an English teacher like me). When I finally opened up to her about how I had desperately fallen in love with her and that I’d wanted to spent the rest of my life with her, oh boy did I slam into a brick wall. “Oh you misunderstood me. I love you like a brother. Why do men always think you want to be lovers with them just because you are nice to them?” That put me in the hospital in the following 2 months with the heaviest attack I’ve had so far and that just elevated my walking status from cane wielder to crutch hobbler.

Best advice you will ever get - forget about girls for a little while. Sorry ladies - love you all, Forget MS girls are tough and if you ever work it out you could sell for millions - I would buy.

Sort out the other stuff, get your positivity back and then think about it.

Jase

PS you never told me what new thing you did

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It doesn’t sound as if your friend (as she saw it) was deliberately being a manipulative b*tch. It sounds as if there’s been a genuine misunderstanding. You had feelings that weren’t reciprocated. That’s common in life - I’d almost say everyone’s experienced it at least once - many of us more than once. It doesn’t mean the opposite sex are all scheming and heartless and wanting to inflict maximum damage. It doesn’t even mean the person who caused the hurt intended it. The girl may very well have been upset too, that she couldn’t love on demand, and that you had misread friendship as something deeper.

You can’t love someone because you think you ought to, or it would be more convenient if you did.

At the moment, what I’m taking from you is that all women are either shallow (wouldn’t consider anyone with a disability), or scheming b*tches who just want to toy with you and torture you. But the reality is you don’t really have much experience of women, to come to these sweeping and derogatory conclusions, do you?

There are women out there who’ve had their hearts broken - as well as other men, of course. It’s not unique to you, and it’s not an evil conspiracy against you, that all women are secretly complicit in. If you want to have any chance with a woman, you’ve got to drop the baggage, and the preconceptions of what “all women” are like, and accept they are people, just like you - some good, some bad, some who could be on your wavelength, some not.

This: “Everyone’s like this, everyone’s like that” is characteristic of depression, and is sometimes called: “black and white thinking”. It’s when you extend one traumatic experience to: “Everyone always does that!” - which isn’t true, but means nobody who might like you is ever given the benefit of the doubt.

I think Jase is right - you need to tackle your own self-esteem issues and negative thought patterns before you start trying to drag anyone else into it. If you secretly think everyone’s mocking you, or plotting to bring you down, then of course it doesn’t set the scene for a blossoming relationship. Any girl you have your eye on will sense you don’t trust or think much of her sex, and that’s hurtful and offputting if she happens to be genuine.

Tina

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Excellent news now its onwards and upwards. There is always something around the corner if you look. I hope it works out for you.

What a brilliant post Tina.

You cant love someone until you love who you are. We are always quick to blame OTHERS on our failings in life, when in actuality its our own self that causes it.

I have had some brilliant men friends, some gay and some straight, who i just felt so comfortable with. Not everything is about sex lol.

32 is YOUNG, in my eyes. A lot of people get involved far too young, married early and divorced early, some are grandparents at 32 lol…Actually my step son is 32 and he has had one relationship which lasted a week, she was too needy and he had far too much to do, cycling all over the place, playing rugby and getting drunk to be involved with girls he hasnt even settled down yet lol…and like he said women are a drain on the finances and they need too much work ha ha.

Aiydan if your reading this. I know of quite a few friends who have partners with MS, who have MS.

You are using your MS as a barrier. Its just MS, its not the end of the world. Why is it when people get MS some of them assume its all down hill, well its not.

I have friends who have had it since 1970, married afterwards, and one is still showing her dogs, albeit she has to rest and have bad days, but its how you tell your brain you want to cope with these things, FLIGHT or FIGHT I think.

I FIGHT. Everyday. Yes its hard, yes i am depressed but there are no guarantees in this life.I am 64 now and i have had 3 friends loose their breasts to cancer only recently and one is going to loose her life over it. I know where I would rather be.

Another thing what if you didnt have MS and got married, and then was diagnosed with MS, would your wife just turn away from you…hardly.

My husband is sick probably more sick then I am. He has COPD. Sometimes he can hardly walk, but he still goes fishing, he is about to rebuild a classic motorbike he can still use his hands just barely (he has bad shakes), but he just gets on with it.

Depressed people live under a cloud, and cannot see the beauty around them, only the negatives.

No point in telling someone depressed get over yourself etc, they have to do it for themselves bit like an alcoholic, who have to really want to kick the habit of drink, its the same as depression, some people like to be depressed, i know a few believe me lol.

I love this forum, i dont post much as i am so busy all the time with my chickens and just chilling out lol. But its good to say how we feel.

x

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Ditto the advice from Jase (hey dude !), Tina and Golden girl. Stop fretting about chicks. There may be opportunities in your new opportunity. … when I was at uni, I wanted a girlfriend. Now I’m married + kids, sometimes I wish I was single !! Careful what you wish for !!! :wink:

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Oh, how I wish I could have lived in a tolerant and understanding culture like yours. Turkey has one of the highest interrelated marriage and resulting handicapped birth rates in the world, yet people act like they belong to some ubermensch race when they see you are ill.

I’m going through the “beast” complex. You must have seen “Beauty and the beast,” where the beast through years of despair and hopelessness has cut off all bonds with civility. I feel just like him. But there is no beauty out there to sort me out. I’m stuck in a really vicious circle. Everyday, everyday I feel something is missing. Something I had just the day before isn’t there anymore. I couldn’t walk as fast or as far. And everybody I meet on a bus or on the tram is always so curious about what’s wrong with me. I’m holding myself back really hard not to just scream “NONE OF YOUR GODDAMNED BUSINESS!” in their faces. I’ve met hundreds of Americans, Britons, Canadians in recent years and nobody has ever asked me what was wrong with me. Not one. See the kind of struggle I’m in?

Trust me, I don’t like to be depressed. Just the other day, I downloaded sound editing software to do some mixing. Music is one of my biggest passions(Freddie Mercury being my idol). I used to be able to play the keyboard. I got what they call “musician’s ear,” where I could play a song simply by listening to it. I’m also very much into singing but after weeks of searching, I could not find one place to give me singing lessons. I’m apparently “too old.” R-tards. It’s the same money.

The number of the beast ??? We don’t tend to ask what’s wrong in this country, just point and laugh… Too old to sing ? Bullocks. I’m 43, and I’m still gonna play download. … :wink: Mercury/Queen puns to follow… Just wait for the hammer to fall. …

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I’m more like waiting for somebody to gimme the prize. But I guess I’ll never find my killer queen that I could call my best friend. You know, somebody to love, somebody who could save me. Like I said, I want to break free but I simply can’t afford it at this stage. I want it all but I’m stuck in my own innuendo. I’m just waiting for the miracle, you see. But the more I think about it, the more I realize I’m going slightly mad. But in the end, like they say, the show must go on.

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Oh, I have so forgotten about girls at this point, it’ll make your head spin. I was born in the wrong era. I’m a romantic, you see. I want to love and be loved unconditionally. But women of that caliber don’t exist in this day and age, apparently.

Ha ha. Dude, Don’t lose your head, it’s good to have One Vision. You don’t want to go running Headlong into One Year Of Love. It’ll be over in a Flash. It’s A Hard Life you know, always Under Pressure. Too Much Love Will Kill You anyway…Don’t Stop Me Now, especially as Now I’m Here… C’mon, Play The Game, a Crazy Little Thing Called Love…, or a Bicycle Race, your choice. … :wink:

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