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A life ruined by multiple sclerosis

Hello everybody,

Well, where and how do I begin? My name is Aydin and I’ve been an MS patient for the past 13 years. And my life has been one spiralling downslope ever since.

I used to be an English teacher(I live in Antalya, Turkey, btw). About a year ago(and after a very severe attack), I realized I could not go on working anymore and applied for a disability retirement. I got retired from my job about 7 months ago and oh boy, was that a big mistake. You see, I’m one of those really unfortunate people who could not move out of ma&pa’s house. It was 5 years ago that I was finally able to get steady employment through disability and I came to a point where I could simply not continue working.

Why am I complaining? Well, first off, my salary got a 60% slash(I was already making lousy pay so imagine the position I’m in now). To add insult to injury, I have to live with a father who openly told me that he hated me and a mother who said she had “written me off the books.” 6 years ago, when I first started taking copaxone shots, everybody was in line trying to help me. Fast forward 6 years, nobody gives a crap and they are NOT shy to say that they don’t give a crap.

I’m currently on my 4th prescription of sleeping pills(the other 3 didn’t work) because for the past 4-5 months, I’ve been losing sleep(2-3 hours a day max). I’m excessively unhappy; depressed even and I can’t see a way out of my current predicament because I’m stuck with toxic people and I can’t even afford my own place if I wanted to move out(a move that everybody is looking forward to, apparently).

On the MS side, I’ve been on Gilenya for the past 3 months as copaxone could no longer contain the situation(having had yet another attack 3 weeks after getting retired and spending a week at the hospital) . The right side of my body has been severely affected; especially my right leg is almost completely dead as I can barely move it anymore(it is always numb and stiff). As for right arm, it is slightly better but if and when I get really tired, half my arm goes numb. In that case, I can move my thumb, pointing finger and middle finger but my ring finger and pinky are a different story.

Like I said, it’s been 13 years since I’ve been diagnosed and my life has been a spiralling mess for most of that period. I graduated college with a fast deteriorating state of health, and even went on to finish a second. I served in the military(Turkey being one of the last 3rd world countries that has conscription) which of course only lasted 1 month(but probably stole 10 years of my life) because I was deemed “unfit for duty” and I’ve become a crutch wielding cripple throughout the last 7 years of my life(from a 100m in 14.72 seconds sprinter). I’ve never had a girlfriend, of course, seeing how shallow women of my peers are that they could simply NOT see me as dating material. I’ve thought long and hard about killing myself because I realized for the past 6 months, I’ve done nothing but: Go out, have the only meal of the day, go back home and sleep off the intense fatigue that such a trip has upon me, surf the Internet, play ages old video games and go to bed. I know this sounds more like a suicide note that anything else, but having absolutely no friends(and I mean none as is not one) I have nobody to talk to and share my problems with. Can someone give me a piece of mind because I’m literally at the end of my rope, thank you.

I wish I could offer more than sympathy, but sympathy is all I have. I am sorry that life is so tough for you.

Alison

Read the happy thread I set up - MS is sh1t no arguments but you have to savour little victories.

You have friends you just don’t know it - if I wasn’t and didn’t care I wouldn’t be writing this. Girls is a tough one -there are girls ( and guys) who will run a mile, but there are good, caring and honest ones who won’t. This is a bit harsh, so apologies, it’s not the MS that puts girls off its the negative attitude. You can’t do anything about the MS but a smile and a positive attitude will have them flocking.

Sounds way. It isn’t it will be tough but tomorrow’s a new day so break the routine and do something new. When you have done it, tell your new friend (me) what you did.

Look after yourself

Jase

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Hey r3gr3ssor, How are yer ? Can I say ditto to all of the above… joining the party. The count’s gone upto 2. (It may get a little surreal from here…)

Make that 3 :slight_smile: and welcome x

Can i ask how old you are?

I need to digest your post and think about my reply.

There is one thing though you make who you are… You live in Turkey are you British or Turkish…?

Anyway would help to know your age too. xx

Hello,

My name is Aydin and I’m Turkish(unfortunately) but I was blessed to have lived in the US for 2 years where I learned to speak English. I’m 32, btw(my birthday is on the 23rd of this month).

Why unfortunately? There are some really nice things about Turkey- as I said positivity

Facebook’s “positive living with MS helps”. It’s not all happy clappy keep smiling stuff - but her way of thinking about life with MS has helped me through some dark times. I think of it as a 1% improvement in my life, and if I can find 10 things that give a 1% improvement then things are 10% better.

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I wish I could agree with you. I don’t feel I belong here. I have ABSOLUTELY nothing in common with these people(thus; my solitude). I spent almost 5 years in one school and some of my(so-called) colleagues, I’ve known throughout that time and I can assure you that I did every one of them some sort of favor or some good along the way. It’s been 7 months since I got retired and how many of them would bother to pick up a phone to check how I’m doing? None. Sure, we were all there for the same reason: Money. I get that. But still, it kind of stings when all of a sudden you have no friends, no social life, nothing, nobody.

We have had a crap couple of weeks - My daughters friend died of cystic fibrosis age 32 - in the same week another friend of hers - who had suffered with depression for years - hung himself. age 32. The son of a friend died - age 15 - he had an operation on his heart a month ago - infection in wound killed him. Another friend died of stomach cancer age 62.

What with funerals - and finding a home for a dog - owned by the chap who killed himself. Everyone heartbroken - wishing they could have done more etc. l find myself forgetting all about my troubles when you think how others suffer. OK - l cannot walk unaided - [had PPMS for 33yrs] but l always put others before me. l never even discuss my ms with anyone - except on this forum.

You are depressed - and sleeping pills can add to your depression and suicidal feelings - so can many of the meds. Amitriptyline is one. lf you read the leaflet in most of these meds they warn you of the side-effects.

Your parents attitude towards you is not because of your MS. OK - perhaps they do not understand the implications of the disease - but it is probably your defeatist attitude that exasperates them. Get a grip - and do something different EVERYDAY - get out of the rut you are in. And for fu(ks sake - SMILE.

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I’m sorry to hear that you are surrounded by death. I really am. But it is far beyond me at this stage to smile. I simply can’t find anything to smile about. I used to turn to stand up comedy for a quick laughter fix. Then, my favorite comedians started dropping dead: Richard Jeni blew his brains out, Freddy Soto ODed, Robin Williams hanged himself.

I have lost pretty much everything at age 32. I’ve never had a girlfriend, for one. And from the looks of it, in this pathetic state that I’m in(the state pays me 350 dollars as a pension and I can’t work) that’s never going to happen. I tried looking for somebody in similar conditions as I am, that was a dead end. In no way am I in a defeatist attitude. I am surrounded by people who are overly aggressive and hostile; first to each other then to everybody else. I just don’t want to deal with their crap anymore. Being a retired military officer, pops just loves to lecture(and not in a friendly manner, more like Robert De Niro in “This boy’s life”). I know my limits and they are not very high or long at this point in my life.

I am sure that everybody here has somebody to talk to, to share some of their lives’ burdens. I am utterly, completely, helplessly alone. I check my cellphone’s call records and consistently, there are only 3 numbers: Food orders, taxi orders, calls to and from the bank(which have stopped recently because an ongoing issue has finally been resolved). There are only 13 numbers in my call registry. I have thought of and searched for something different to do. I swear I did. But, doing something different requires something that I no longer possess: energy. I have to travel for 2 km on a bus to get something to eat(because nobody cooks at home anymore) and by the time I get back home, the only thing I can think of is hitting the sack(when it is 40 degrees centigrade outside, that doesn’t help, either) because I’m drained of energy; literally drained.

I’ve been on any and every kind of antidepressant you can imagine. If you can think it, I’ve taken it. For the past 9 years, I’ve spent more time in hospitals and in doctors’ offices than I spent time anywhere else. Every neurologist and psychiatrist knows me, pretty much. And it’s always the same BS: You’ve got to keep your spirits up. How? The only time I truly felt happy in the last 10 years is when I fell in love with a woman 4 years ago who played me like a harp from hell. You can imagine what happened next: “Oh, I’m sorry I gave you the wrong idea, I love you like a brother.” Not only was I crushed, the shockwave ended with me back in the hospital with the worst attack I’ve had that left me almost half paralyzed. It sucks that I have a disease that is DIRECTLY connected to my mood. Something upsets me and I can’t find the energy to get out of bed.

Spacejacket, I am sorry that you and your family have had a tough spell and are under a lot of strain, but your own troubles do not magically turn the old ‘get a grip and cheer up’ line into helpful advice to a person in pain.

Alison

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Dude, you’re not surrounded by death. Everyone dies, and these people in the public eye, you’re buying into an image… It’s not your fault, or any reflection on you when it goes tits up. I loved Robin Williams, hell, I’ve nicked some of his lines, but his private life was…complicated. You just have to enjoy the good times and don’t dwell on the bad… it sucks. As for your situation… you can’t alter how people are to you. Working in retail, everyone knows my job better than me, despite my training/degree/knowledge I have. Now I just smile and have a ‘right you are…’ attitude. I get paid regardless of how many twat pills they’ve had. (And no one other than my wife/mother rings my phone (unless I’m (not) wanting an upgrade))… I was on a down curve for about four years, doesn’t matter how many times you hear ‘get a grip’. Doesn’t help, even when it’s Steven Tyler telling you… :wink: You’ve made a start though. You’re on here. Vent your spleen. That’s what we’re here for!!! Stay positive. Take care, Andy

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You have an excellent grasp of the English language, have you considered teaching one to one, English to Turkish or vice versa.

I’m trying to understand your position but the only thing I can think of is to say try to do one positive thing every day. Make your parents a coffee, smile at a stranger, cook a meal (eggs on toast is easy) and would take less energy than a bus journey in excessive heat to have a meal, simple exercise to maintain core strength, tidy up, sort out your possessions (we all have loads of stuff we don’t need). I think you are not in a good place to start a relationship first you need to deal with your emotional problems, which hopefully will lead to you dealing with and accepting your MS. Then perhaps you will be in a position to start and maintain a relationship.

What medication do you currently take? Are you on any DMDs? Have you had counselling?

Why did you pick a name like aggressor?

Jan

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Well, thank you. I’ve spent the last 25 years honing my skills(most people can’t tell me apart from your typical yank, lol) I have given out hundreds of business cards to people who said they’d be interested in private tutoring, but in reality, they were all “all talk, no walk”(they were probably expecting the lessons to be free). I can’t work on the clock or else I’d lose my pension and nobody’s hiring, anyway.

We don’t have a relationship with my parents where I can just “make them coffee.” You see, it’s a war zone where my mother hates my father to death(and I mean it), my father hates my mother and I get my fair share of the hatred. They don’t talk to each other, they avoid each other, they get into really loud fights from time to time and it’s been that way for the past decade(attaching the opposite sides of electromagnets would be an easier feat than getting them to sit in the same room).

Honestly, I don’t buy what I don’t need and don’t keep what is useless to me(basically, my room is empty). There are certain advantages to having had a military figure to look up to(not now, maybe 15 years ago). You learn discipline and organization.

Cooking in THAT kitchen is a major problem in itself, unfortunately. Especially when your mother is a hygiene nut who believes everyone else but her is a pile of filth, I’d rather not take any chances.

I currently take gilenya. I took copaxone for the 6 years before that, but the number of attacks deemed it necessary that I switched meds. The shrink gave me cedrina as sleeping pills and I believe I finally got the right medication. I couldn’t sleep at all before that.

My nickname is actually regressor :slight_smile: it’s something that just stuck with me and I never really felt like changing it in the last 12-13 years that I’ve had it.

Hi Aydin,

Social isolation - whether or not as a result of disability - is not a uniquely Turkish phenomenon.

You assume “everyone here” has someone to share their lives with. Well, a lot do, but a lot don’t - I’m one of those that don’t.

Last week I didn’t know I’d actually lost my voice, because I hadn’t spoken to anyone in three days, and it wasn’t 'til I popped out to speak to a neighbour and only a whisper came out that I found there was anything wrong with my voice.

My mother phones once a week for at least an hour, and the conversation consists entirely of how awful her life is, and all her various ailments - which, according to her, I can’t possibly understand because I’m too young - never mind that I’ve been seriously ill for years! After the call (and sometimes before) I need a tranquiliser!

I’m not saying this lessens your troubles in any way - I’m just saying it’s an illusion that everyone else’s lives and relationships are perfect, and we all have devoted friends and supportive parents. We don’t!

My most supportive friend was diagnosed with dementia over a year ago, and has gone downhill very quickly. She is not well enough to go out, or come to visit. Last time she tried it, she was still driving, but couldn’t find my house - which she’s known for years - by herself. I had to go out in the street and look for her. Since then, she’s given up driving (very sensibly, as her driving was scary), and I don’t drive either, so I doubt we shall ever see each other anymore. And if we did, through no fault of her own, she can’t be the friend to me that she was - we’re not going to do stuff together - she’s not going to help me with the housework, or run me to the hospital on the odd occasion. She’s still alive, and still my friend - but not the person I knew.

My sometime best friend has been worse than useless - wittering on about “glittering new career”, and “light at the end of the tunnel”, when I was made redundant at 46, and with a serious degenerative illness. OK, I know “thinking positive” is important, but nobody 46 with debilitating illness, who’s been in the same job for 23 years, is going to walk into a new one next week, in the middle of a recession, and have a “glittering new career”.

There’s “being positive”, and there’s utter patronising bilge, that denies life’s harsh realities.

The last contact I had with her was she sent me a txt, to inform me she dreamt I’d died, and wanted to check I was “OK”. Well firstly, I’m NOT “OK”, and never going to be, but secondly, at least I haven’t died, but it’s hardly a comfort to hear from “friends” that they believed I might have. Especially by txt, for goodness sake! How thoughtless and impersonal. She didn’t literally say: “Have you died, because I thought you had?”, but it wasn’t far short of it.

I know MS rarely kills, but I’m sure I’m not alone in having the fleeting thought late at night. So certainly not appropriate for someone who claims to be my friend to feed and water the idea. What could she be thinking of? Not how I might feel about her “premonition”, that’s for sure!

Sorry for the long rant, but maybe it helps to see everyone else’s life is NOT always rosy, and it has little to do with what country you live in.

I’m sorry I can’t advise on practical matters, because I have no idea of the Turkish welfare system, and whether there’s any realistic possibility of you being able to get out from under your parents’ roof, which seems to be a major part of your unhappiness. What happens to adult ill or disabled in Turkey who don’t have family they can stay with? Is there some form of social housing? Can you apply for this, even if you’re not literally on the streets?

You say you are well enough to go out every day - do you do anything to vary the routine, go to different places, or do you have to eat at a certain specific place because it’s subsidised or something?

You do sound stuck in a rut, but if you’re well enough to get out every day, there should be changes you can make to introduce a bit of variety. You don’t have to spend a load of money - just go somewhere you wouldn’t normally go, or haven’t for a long time. It stops every day looking exactly the same.

Tina

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Hi well i have read your posts and to be honest usually i can say something useful but you come over so defeatist and well TOXIC not sure i can help with anything i have to say.

You say :

I have ABSOLUTELY nothing in common with these people(thus; my solitude).

These people? Do YOU think perhaps some of your problem is you have lost your heritage or you think perhaps you are better then THESE people? When you call people THESE people its quite insulting isnt it? Do you mean your parents, friends, colleagues etc. Perhaps you come over badly and that is why your phone is silent as THOSE people cant be doing with your attitude lol…

You say you have lost everything at 32 well welcome to the world… you say your father is a strict disciplinarian and ex military and your parents are living in a war zone. At least they have allowed you to live there havent they. They havent thrown you out.

You have MS well so do over 100,000 people just in the UK. Its not a rare disease lots of people have it, and simply get on with their lives.

You can WALK, talk, catch a bus, eat … WOW lucky you. So you havent lost EVERYTHING. To loose everything at 32 is to loose complete mobility, have to be fed by someone, have your bottom cleaned and your bladder emptied by a catheter, and be bed ridden. Thats loosing everything.

Whilst you can communicate, walk, talk, catch buses you can get yourself out there and DO something. I have no idea how Turkey works with regard to people with disabilities. If you lived in the states did you make friends there is there no way you could go back and visit?

Seems to me your focusing on everything you have lost but nothing on how you can change it all. You are using all your energy to feel as though this is it, rather then think ok, I am in a bit of bind, I have MS, how can I make it easier for myself.

Jeez when i finished reading your posts I felt quite depressed lol…

Your SO LUCKY. You have a home, parents, food, warmth, you can go out, eat, be by the sea, i sit at home all day at 63 have to rely on someone to take me out, i dont do holidays as its too waring for me, and I lost a brilliant job I used to teach.

I havent lost everything far from it. God gave me a new route to follow in my life, and i am following it. I am always doing things. I have started to breed bantam chickens (yes how boring), and now i know loads of stuff about chickens, breeding, and i have even brought in new rare breed from europe and will be breeding them next year as long as i can still stand i will keep going. I have learnt so many new skills, and tons of friends on facebook and groups, and have helped a few along the way.

Instead of focusing on all the negativity surrounding you, think of doing something. Your an intelligent young person, write a book, set up a web site in Turkey to support others with MS, because hey you wont be the only one. Use your experiences to help others.

No one owes you anything you make your own life by your own choices. Your so focused on depression and tablets and MS you cant see anything else around you. God your so lucky i would give anything to be in Turkey right now on holiday lol…I can just get to my gate.

As to women, well hell hun, we all have horror stories to tell people about relationships going wrong believe me i have been there done that and wore the Tshirt lol.

It took me until I was 43 to finally find my partner. We have been together 22 years in sickness and in health. We have had a lot of trials and tribulations lol, but we keep going.

You have a lot more then you realise hun. MS is not terminal, life is sadly and a lot of the people you mentioned sadly had loads of rubbish going on around them. Life isnt a box of chocolates its blooming hard work, now the hard work starts and you have to really deal with it.

Sorry but i dont think you have lost everything at 32 no way. I would swap you your MS right now in Turkey for my MS in the UK AND my recent diagnosis of Transient Eplipeptic Amnesia. Just to live somewhere different lol… just kidding. Everytime i have an episode of TEA i loose a little bit more of my biography, but hey i keep going lol.

Sorry i hope i didnt come over too harsh but i think you need a bit of a shake lol…gentle one of course. I have kids older then you lol…

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Some of my best conversations are held with myself…

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Smile :slight_smile:

it makes people wonder what you’ve been up to!

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