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So sick of it all

This isn’t my first post - I used to have an account, tried resetting my password and somehow I can’t reset it, but that’s by-the-by.

Does anyone else just think “screw this” and want to bring this all to an end? I know that sounds a tad dramatic, but bear with me. I’m 40, been living with this godforsaken evil disease for the past nine years - officially diagnosed in 2016 - and I’m starting to notice things that are different now than what they were when I was still in my thirties. Because of the MS I’m not as active as I once was. My life is now a constant cycle of “get up, take Tecfidera, try to deal with whatever side-effects it may throw at you but do so before you have to go to work, head to work, feel remarkably crap because you feel less and less able to do your job, go home, take another pill, try and have something to eat, then feel like death because the MS has decided to treat your body like a half-charged battery, fall into bed and then somehow do it all over again”.

I used to want to do things. To see places, to go travelling, to have adventures and have fun. Now I just feel like my life is dominated by a bloody illness that is slowly and surely eating away at me, both physically and emotionally. When I was diagnosed three years ago I didn’t cry, I didn’t “grieve”, I didn’t do anything like that - I just got back to work. Well, what else was I supposed to do? I had this crazy idea that everything would be “Normal” and everything would be “Fine” and now…now that I’ve turned 40, I’m starting to realise that MS has started to overrule everything I do. I’ve not been on holiday for nearly twenty years. I’m scared to go on holiday - anywhere - because I’m not even sure if I can. I’m angry, all the time, sheer and pure unadulterated rage that I somehow keep contained and manage not to hurt those around me because they think they’re doing the right thing by making me do X thing when I know - I know and have told them - that X thing is not what I want to do or feel capable of doing. I want to learn to drive but I’m terrified to get behind the wheel of a car because I’m not even bloody sure if I can. I’m sick to the back bloody teeth of people telling me (and always in that forced-cheerful manner!) that I should be “grateful” that I “only” have MS (I’ve got relapse-remitting) and not something “Awful” like cancer or Alzheimers. I want to punch people, hurt people for these comments, I want to actually throw people in front of traffic for being patronising and belittling.

I had a severe dizzy spell at work this morning, so severe that I had to come home. I was escorted - bloody well escorted - to the front door. I’ve never felt so patronised, so belittled, so humiliated. And why didn’t I say anything? Because if I try to vocalise what I’m feeling when I’m stressed or worried, I stutter. I stumble over my words and I can’t speak properly. I sound like an idiot. So I keep my mouth shut. But, oh, you can guarantee that I’m furious inside.

And then the fury subsides and I become depressed. And then the suicidal thoughts come on. Dark, horrific thoughts of killing myself, actually researching ways to kill myself in the quickest time possible. I’ve never went through with it, mind you, because I’m bloody scared of dying (oh, the irony!) So I try to find ways to combat the depression. I went on anti-depressants before - not recommended. So I’ve turned into a serial Instagram stalker. I put words into Instagram that I associate with being happy and I have an entire Instagram profile that follows nothing but travel bloggers and hashtags of places I went in my youth, to remind me of better, happier times.

And then my mind slips and I find myself fantasising about winning the lottery and going travelling. I remember going swimming in the Pacific and I remember how it felt. And then I remember that, thanks to the god-damned-evil-disease, my legs don’t work like they used to. That I’ve got reduced mobility in my left arm. So the chances of my swimming like I did when I was twenty are nil. And (to carry the oceanic motif forward), the depression crashes in on me like a wave. Again.

It’s a vicious, neverending cycle of hurt. And I’m sick of it. I’m sick, sick, sick, SICK of it. I hate how my life turned out, how my life has just collapsed in on itself and I hate the people around me who think I’m “coping fine” when in fact I just want to burn everything down. I just want to end it all and be done with it. Just wish I wasn’t so bloody scared of death.

Rant over. Call me psychotic, delusional, whatever. I just needed to rant somewhere where no one knows who I am.

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Wow let it all out your right none know us , just been diagnosed looks bleak indeed

  • wow

hi Catdragon

sorry that the enormity of your diagnosis is hitting you hard just now.

i truly get what you are saying.

however there ARE accessible places that you can go to on holiday. i will have to trawl through my messy memory to tell you where though.

as for work - how chuffing awful that you were escorted out for having a dizzy spell.

have you told your manager about having ms?

there is a law stating that employers must make reasonable adjustments to keep you in work.

there is a scheme called Access to Work which could be of help.

they liaise with you and your employer. however you will need to tell your employer first.

i took early retirement on medical grounds in 2012 (i am 60 and was diagnosed in 2010).

there are too many people who give random advice that wasn’t asked for and who would profess to have your best interests in mind. these people aren’t worth getting upset over.

there are also people who can brighten your day by being comfortable to be around and non judgemental.

try to surround yourself with the latter.

thank goodness for your fear of death!

you have a lot to do before you can think of going anywhere.

sending you a warm, gentle hug.

carole x

if you want to talk further feel free to private message me

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Hi Catdragon,

Shit, i’m so sorry you are in so much pain. It sounds horrible. I recognise it. I have been there. I can’t say i don’t still have depressed days but going to therapy helps me manage them. I can’t recommend it enough. It sounds like you need to process some difficult thoughts. Suicidal ideation is the worst but it is more common than we think. i don’t want to minimise your pain but i just want you to know that you are not going mad. I get the anger too. When i was struggling so much and somebody said something insensitive i used to feel like i could punch through a wall. But i learned to focus on the fact that they are trying to be kind and they are just ignorant (that was hard, it took time, i still fail sometimes, especially when i’m especially fatigued). I know it still hurts. If you feel strong enough, maybe you could try to tell them that it hurts to hear these things. That it does in fact minimise your pretty friggin’ difficult struggle and you find no comfort in it. Before my MS got bad, i feel like i was saying all kinds of dumb shit to ill people and disabled people. I dread to think. It took MS to school me. Unfortunately.

You are definitely not psychotic or delusional. You are going through very real difficult struggles in your life and your response is understandable.They would be a challenge for anyone. MS is hard. The practical advice above about Access to Work sounds useful. I had to stop working cos my fatigue and vertigo and spasticity got too much to handle. I am now living on benefits and slowly retraining to be a psychotherapist (after being helped so much by that profession) and i will practise a couple hours a day from my home. Skype therapy is a booming business too. I’m prattling on about my life plans to illustrate that just because some great things end (i used to be a touring musician (professional) and a rock climber (amateur) ) it doesn’t mean you won’t find new totally awesome things. I still travel but i do it differently and slower. I played in NYC last year. It wasn’t as part of a six week tour but it was still amazing!

Your self-care in the form of following stuff you are interested in on instagram is evidence that you do want to be kind to yourself and look after yourself. Let that part run riot and send the depressed part to therapy. I know it can be intimidating if you’ve never been before but it has really helped me stop falling into despair in quite a transformative way.

I hope you start to come out of this mood soon and keep yourself safe

You are important

Kate X

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Hi Catdragon, I believe we go through the stages of grief when we are diagnosed with MS. I dont think you have got to the ACCEPTANCE yet.

I wrote a blog about coping with a progressive chronic disease. https://livingdailywithmultiplesclerosis.com/2019/04/13/coping-with-a-progressive-illness/

Basically we have been robbed of the person we were its like waking up and being a POD PERSON. Like the film alien abduction. We wake up and well we are no longer who we used to be.

I had a brilliant job. I worked sometimes 60 hours a week. I loved my work. I was full of it, my brain constantly working, and I taught I.T. in flexible learning. I had a great job, great life, went on holiday with hubby. Everything was just great.

I went to Brazil in 2000 for a holiday and it went down hill from there.

16 years later i was given a diagnosis of PPMS.

I struggled with being ill without a diagnosis, i felt useless, angry, frustrated. Since i lost hubby in 2017 my life has spiralled out of control. The pain is overpowering me. My mental status is poor. I have to find reasons to keep going.

I have a monkey chatter who constantly tells me i cant do things. I do tend to use him as excuse not to even try.

But life with a progressive disability is hard.

I find my life just an existence. I often lay here in the dark waking up in pain and think what the hell is the point?

I think we all get to that stage. Its how we use that information that counts.

My point is this. I have two daughters 44 and 48 who need me. I have a dog who needs me. So I keep moving forward. I have tried to find things that will make it worthwhile getting up.

I wrote this in one of my dark moments. I have found that every morning now when I wake up I am looking forward and hoping to see my hedgehog spike who has taken to me and comes for his breakfast, alongside the magpies, crows and about 100 sparrows in my hedge lol.

https://livingdailywithmultiplesclerosis.com/2019/09/14/the-simplest-things-can-heal/

I try to really look for the positives in my life not the negatives.

You say you havent been on holiday for 20 years, but you have had MS 9. Is there a reason other then the MS which stopped you going on holiday. You dont mention a family?

I think following hashtag holidays is actually counterproductive it just reminds you of what you did and you can know longer do. I find facebook hard, as so many people on there enjoying holidays and my sister doesnt help bragging about another cruise.

BUT really is there any reason why you cant go on a holiday? If your financially strapped have you applied for PIP?

Start small. A weekend away. You can go on holiday in the uk now quite cheaply by using Air BnB.

You can hire an electric wheelchair a foldable one.

Or you could ask a friend to help you?

There are ways of having a holiday.

Silence your monkey chatter lol with a bit of tape. I know i should do the same. But hey I am 68 been there done that. The thought of going on an aeroplane holds know love for me. I like my little flat, i feel safe here.

You work and i agree with others you should see your HR. Did they escort you out per se, or was it they wanted to make sure you got out safely and how did you get home? I do think you should have been dealt with a bit better.

You are still working fair play.

I just think you haven’t accepted your illness, and your still looking for the old you. Sadly she may look like you in the mirror but behind she isn’t. BUT YOU are articulate, intelligent and have great communication skills, so there are things you can still do.

You don’t mention if you go out with friends. Its like there is just you and work and your MS.

I am hoping you feel better this morning, but believe me we all have been there.

Talk to MS Society helpline. The may be able to point you in the right direction for support and respite holidays.

If you haven’t applied for PIP do so.

Today is another day. I hope yours is a better one. hugs.xxxxxxxxxxxxx

Catdragon i know just how you are feeling I feel very much the same as you.I have had MS 27 year and i am sick of fighting now.I am sick of fighting the lack of understanding.I am sick of fighting a broken health and social care system.I am sick of fighting the DWP and sick of fighting people who think they know it all and know nothing.Hope you can find the strength to keep going on as hard as it.

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I can’t imagine what you are all going through, you just need to know people care about you all and even if you feel tired from the fighting just know it’s not in vein, hang in there. You are making a difference to everyone around you and the people you interact with, even if it’s small. Give yourself a challenge within your own capability and do something new! What have you got to lose right? Take your mind off it. One sentence I liked from a TV Show (brownie points who knows where its from) is ‘How can we help?’ Is there anything, we as a community can do for you? Kind regards, Rich.

Catdragon - I get you completely - I’ve been diagnosed 20 years and now 51 & wondering how much longer I can commute to work in the car - Traffic is a nightmare, plus feeling rubbish and want to sleep all the time,plus looking in the mirror, all I see is a fat, greying, balding old man that is struggling to cope with keeping up with life, working & private - I often look back to the late 80’s / early 90’s when I was young, healthy and enjoying life - how it passes quickly, but & there is a but,we have to try and make the best of a bad job and sometimes thank our lucky stars that we are still breathing & able to live our lives, even thought MS limits things so much - but I fully get you 100% - we’re in this fight together…

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Hi all I’ve been reading the posts and it’s great to see the support people offer, I’ve just been diagnosed with ms , I was told I’ve had it for many years but it’s been hid by my diabetes only came to light when I went to see my doctor as i kepted falling over and have major problems walking , it came as a bit of a shock , you find out who your true friends and family members are too but once again great to see people supporting each other

Hello Subzero

It seems that your earlier comments have been ignored. Sorry about that, welcome to the forum anyway, a place you probably never anticipated finding yourself.

Let us know if there’s anything we can help you out with, information or support. The best way to do this is to start a new topic. You do this by hitting the New Thread button above the current lists of posts. Give your thread an appropriate title, then post whatever you like. We’ll do our best to answer you.

Sue

Interesting reading this as my partner has the same thoughts sometimes. She’s had MS now for 25 years and moved from RR to SP these past few years. However hard we try, her world is shrinking. We used to travel the world, now it takes all her energy and my physical strength to get her out the house to go to the local cafe.

She’s making a bucket list and we’re trying to tick off as much as we can. Sometimes not major things, e.g. we’ve never seen Durdle Door so that’s on there. Certainly the big ticket items like Machu Pichu and Australia are now out of reach! This gives us something to aim for over the coming months - a concert later this month, then Christmas, a trip in Spring, a (fairly) major trip next Sept etc. We talk about this as our ‘next lamppost’ plan - keep gong forward to the next lamppost, always something to aim for.

She has talked about going to Zurich - in fact she’s always said when the time comes that she’s losing all dignity then she won’t want to just ‘exist’, which is what is expected. If she can’t ‘live’ then it will be time to bow out gracefully. She’s mentioned this a few times recently to me, and I know she’s also discussed this with her GP too but I don’t know whether she has actually contacted Dignitas yet. That’s her choice at the end of the day, and as much as I might not want something to happen I will always respect her decision.

She has a DNR in place and living will (she is adament that she never wants a PEG to feed her). We hope we still have a number of years left together, but she will know when her time is right. I’ll be here for as long as she needs me.

We are always open with each other which I think helps her. She knows she can say whatever she likes to me and I won’t judge or make emotional blackmail. Catdragon - do you have a friend you can confide in openly who won’t judge but will isten? I think that would be really be important for you, especially on your bad, down days.

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