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Not ok

I feel like I am about to implode. I can’t cope any more

We cannot help that much on here, but we can listen. So offer up some details and rage hard, it is sometimes cathartic to do so. Phone some helplines and scream in the shower. I am so sorry that you are struggling. Ali

Sarah,

sorry to hear how bad things are.

I really hope you feel a bit better soon.

Mick

Dear Sarah,

Please tell us why you are feeling like this.

We’d love to help and you know that we are here.

Anthony

Oh Sarah

This is one of the stages of the MS diagnosis I suspect. You’ve managed so well with getting your head round it. And you’ve been trying to help other people with their diagnosis too. But then, almost inevitably, you get to a point where the crap that you have to try and live with just gets too much.

Don’t think that you have to be ‘OK’ with it, or ‘accept’ the ruddy disease. You can be as F’ing angry and just buggering well furious at what has happened to you as you need.

Let us know how we might be able to help. Or even if you just need someone who understands to rant at, that’s alright too.

Sue

Thank you one and all. I am trying to understand weather it is an ms issue or a seasonal relationship issue.

What I do know is that I am not as emotionally strong as normal. I cryed at work 3 times tonight.

If I had a ‘proper’ bitch I know you would all support me. That’s what is so special about this fourum.

So the real issue I am trying to work out, are people close to me being Anoying (polite way to put it) or are the struggling with my Dignoses. If they are dealing with it poorly I can forgive them.

If its exceptence & their anger at ms directed at me I can understand & forgive.

Or … Are my relationships with those closest to me based on my being there for them & its not two way. That was unfair. I have chosen to be the ‘supportive’ one.

I think those very close to me are finding it hard to adapt to me needing support & understanding.

They also are not dealing with me having no short term memory. Xmas games I love. But it did not work. Makes me sad but hay ho. (I feel my family were idiots) quite angry to be honest, if they had a bit of patience it would have been cool.

Ok, I was trying not to bitch, but…my hubby did an amazing job of Xmas dinner (two meats, seven veg, ect) tasted amazing & we all thanked him loads. But … Since he has been moody. Then yesterday I (my day off) cooked shop pie, 3 fresh veg & pots (a few were undercooked.). He got cross & said he couldn’t believe I had served up such shit after all the efforts he had made.

i so could carry on, jerrymy kile eat your heart out not just hubby but adult kids attitudes with me wanting thinking time with

games.

their are people in my world who show compassion, but not those I need it from.

I don’t know how to solve it… Ps, they are all great people. I know it dose not sound like that. But they are, they love me & are good people. I need to explain that as I know you could read this and be critical of them. Well yes, they haven’t adapted quick enough for me.

hi sarah

i know just what you mean.

my husband loves me which i know but my symptoms are annoying the poor man.

now my latest is so embarassing to me (bed wetting) and changing the duvet is like hippo wrestling!

so that’s my job for the morning.

got an appointment with my ms nurse next week so i’ll tell her about it.

it just keeps on giving this bloody ms!

you’re not alone love

carole x

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Sarah,

You are not alone in this and your family sound just like “normal” people.

My amazing wife is very supportive and caring but on occasion gets very frustrated and irritated when I can not do things / chores / jobs at a “regular” pace, so if she is down or tired she sounds like she is having a pop at me but in reality she is raging at my MS.

It gets complicated when I have put in loads of effort and I am tired or drained too.

This poxy MS adds another “less than positive” aspect to regular life.

My comment to you would be - be aware that we operate at different speeds and energy levels but do not be afraid to say “hang on, my MS will not allow me to work at your pace”

In my experience people are more considerate if you let them know how you are feeling. (without banging on about it)

As for changing a duvet cover “fit and healthy with a full set of dexterous limbs” I was rubbish at this job, my MS takes it to a new level of rubbish.

Hope you feel happier soon.

Mick

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Hi Sarah

I suspect there are several factors at work here.

You perhaps hit the nail on the head when you said you were always the supportive one. It’s hard I think for your family to get to grips with their ‘strong’ and supportive wife and mother needing support and understanding herself.

For all your children’s lives, and all of your marriage, you’ve probably been the person who copes with things, who helps and supports the others. Now when you need help and patience, they’re struggling to understand the differences MS has brought you and having to alter their view of you as a person.

They will get there, it’s just going to take time.

And your husband is probably about as furious with MS as it’s possible to be and some of that is spilling over and coming across as irritation with you.

Sometimes we forget that while we didn’t choose MS, and can’t give it back, it affects all our relationships just as much. So you were given a diagnosis of MS, and so was your husband, your children, the rest of your family and your friends.

As you know, the person inside us remains the same regardless of brain fog, memory loss, physical limitations and fatigue. But to the people who love us, something has been lost. They have to grieve for the person we used to be, just as we do.

My husband still gets irritated by me, my limitations and problems caused by MS. And so he should. It’s bloody annoying, and just as I’m irritated by my cognitive problems, not to mention my physical limitations, so is he. But he wouldn’t be human if he wasn’t annoyed at times. It doesn’t make him a bad person, it just makes MS a crappy disease.

Sue

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I can’t believe how great you guys are. You seem to ‘proper’ hear. Thankyou

Sarah - you have been the supportive one, yet when you need support/compassion there’s none forthcoming. No, they are not as you say ‘good people,’ they’re selfish sh***. And don’t try to make excuses for them saying they’re having trouble accepting your diagnosis etc. It’s no wonder you’re talking about being frustrated/imploding because you’re denying what is obvious - you have done your bit - your family haven’t. Stop blaming yourself for their failings. There is nothing wrong with your response - the problem lies with your family. So the next issue is how do you get non-caring relatives to care/be compassionate - is that possible? My guess is that if you stop/withdraw a bit from caring for them and get a mindset and appear that you’re not bothered if they don’t care for you then things may improve. Finally, is there someone in the family who is the main culprit for not showing care/compassion and is he/she influencing other family members.

Dear Sarah,

A diagnosis of MS for everyone in the family is hard to bear and to top it, the season of Christmas is set out to be romantic and wonderful, however, for many of us it exposes all of our weaknesses. Christmas can be really ruinous.

My frustration this Christmas is that everyone seemed to say…“oh! Your not as bad as I thought that you would be?”

or…

“oh, you are not working, I know plenty of people with MS that haven’t taken time off of work, they just carry on as normal?”

I don’t think that people try to be horrid, they just get it so, so wrong and I do hope that you did not implode but rather, found ways to be really kind to yourself and those closest to you.

Warmest regards Ali

[quote=patience]

Dear Sarah,

A diagnosis of MS for everyone in the family is hard to bear and to top it, the season of Christmas is set out to be romantic and wonderful, however, for many of us it exposes all of our weaknesses. Christmas can be really ruinous.

My frustration this Christmas is that everyone seemed to say…“oh! Your not as bad as I thought that you would be?”

or…

“oh, you are not working, I know plenty of people with MS that haven’t taken time off of work, they just carry on as normal?”

I don’t think that people try to be horrid, they just get it so, so wrong and I do hope that you did not implode but rather, found ways to be really kind to yourself and those closest to you.

Warmest regards Ali

Thankfully they are the exception but I’ve found a couple of people to be horrid. A work colleague who went out of his way to make life difficult, a close relative who excludes me from family gatherings whenever possible.

The danger of not acknowledging that these people exist is take all the blame on ourselves when things are not working out.

Communication is critical for any relationships. I’d suggest a sit down family conference (mandatory), where Sarah tells hubby and kids EXACTLY where she is struggling , like cooking and remebering stuff. In turn they can tell her where THEY are struggling. Family relationships are give and take, both sides need to listen. If hubby is acting as carer, then do you know he is entitled to his own carers assessment? And do you know there may be help put there for him?

Contact https://www.carersuk.org/

I totally agree.

That is precisely what I was thinking and reddivine has put it better than I could.

I hope you can use this advice Sarah. It couldn’t be any better.

Regards,

Anthony

Since my last post their have been a number of responses. Thank you for caring guys. I am currently angry with all the people I love & trying to find a way to make it ok. I have always worked on the principle that if two people piss me off it may be me, if in a day three people do it is defenitly me.

I wont be jumping off a cliff tonight!

I quite like your theory that if 3 peeps piss you off maybe its you,and as i get pissed off by a lot of people i will try to consider that and take a look at myself!

I struggle knowing what to do or say to help and support my wife and no doubt piss her off by getting it wrong most of the time.

She particularly gets pissed with any criticism of her adult kids who live with us and seem quite happy to allow her to carry on doing everything for them even though its bloody obvious to a blind man how much of a struggle basic things are for her now.

It does often feel like i am treading on eggshells and i have had to put a bit of a filter between what i think and say(which isn’t natural to me!) BUT i have never ever before or after her getting MS even felt like saying or thought "I can’t believe you have served up such shit " Seems a bit out of order to me and i reckon my wife would be likely to have slung it all over my head if i had,and would be deserved!

Ollie

Karkowian, interesting point you made about ‘influenceing’.

Just so things make sence I will explain my circumstances. My adult kids are at uni so we’re home for Xmas, and now gone again. My husband works two weeks on 2 off, he has now gone back to work, so I now back to home alone. (A bit of a relief sadly).

I am managing (just) to continue working full time, a busy Xmas was a real challenge. My husband regularly suggests I ‘use’ ms as n excuse, that I am no different than a year ago. Lol, it’s been a household joke for years, that if I am asked how I am my response is ‘tird’.

it feels like he finds it easier sometimes to ‘blame me’, and ignor that it’s ms that is the issue. I suppose if it’s me it’s possible for change if it’s ‘ms’ he has to accept what he doesn’t want to accept.

i don’t know, all I know is he is an adult it’s up to him, but what I have re found through you guys is my strength. I was really wobbling, now I feel I am back to ‘me’. Yes shit to deal with but strong and determined.

Sarah, I think that you hit on the head a nail that many of us will recognise in our own lives.

Alison

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Sarah,

I don’t know if you’ve seen https://www.mstrust.org.uk/a-z/fatigue

There is also a booklet that you can order (a link to it is on that webpage). Maybe you could order the booklet and give it to your husband to read. It seems clear that he isn’t 100% clear about what is ‘you’ and what is ‘MS’. So perhaps a bit of education (for him) might be helpful.

The trouble is that when it’s you trying to explain how you’re feeling, it’s difficult to find the right words. And a simple ‘knackered’ or ‘tired’ just doesn’t explain MS fatigue. And as you’re still trying to do a full time job as well as deal with the other aspects of MS in addition to fatigue, you might need a different way of explaining your feelings.

Sue

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