hayla 14/02/15
Last reply 3 years ago
Relationship Stress

MS is stressing. We MSers know that first hand. Unfortunately seems that my boyfriend of 6 years is only now realizing that.
We have been fighting a lot and he has said very hurtful things to me. Its true that he apologizes when his temper has cooled off but truth is that for the past few months we hardly ever speak unless it is about /his/ projects or he is yelling at me about things I unfortunately have no control over.
That along with my migraines and insomnia (both hormonal and stress health related), my other health problems – yes because apparently MS isnt the only thing I might have to worry about both now and in the future – is making me feel worse by the day.
Apart from some brain fog/harms&legs discoordination/memory lapses/dizzy spells I usually can be kind of independent but then there’s other times when fatigue gets a hold of me that I need help to get from the bed to the bathroom.
My boyfriend used to be pretty helpful, ‘understanding’ and made me feel better about needing help but nowadays it feels the complete opposite.
Falling down suddenly is almost a normal thing for me, if Im alone I either crawl to bed or the sofa and wait a bit till my legs cooperate again, if he is home he /used/ to help me up and take me to bed or the sofa till I recuperate without me asking him help which nowadays I have to if I want him to help. Unfortunately lately the whole ‘caregiver’ role seems to be taken its tole on him and our relationship has taken a turn for the worse.
I still love him dearly but feel we arent a couple anymore, more like Im simply the one to take the brunt of his temper while he helps me /sometimes/.
I wish I could get someone to help around the house and help me when I need it to take that off his shoulders but unfortunately I live in a country where they help with close to nothing unless you have more than 60% impairment…..I only have about 40% on the worse days so for me that only means I get Tysabri for free and nothing else, no monetary help for the other drugs I need whatsoever nor anyone to make things easier for me at home nor anything else for that matter.

Im stressed out and to help matters all my docs (GP, Neuro, Psychologist) agree that Im relapsing on my depression. If now I barely can help around the place how will I manage with the meds the psychiatrist will be sure to prescribe me next week or the week after??

Sorry for venting….its just I have a lot on my plate right now and this is only a fraction of whats been going on. =(

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stumbler
3 years ago

@hayla , you need to vent to get these things off your chest.

MS may be an individual’s condition, but the impact affects anyone whose close. In your case, it’s like having a relationship, where three people are involved.

As we know, MS can be restrictive and frustrating for us. But, those same restrictions and frustrations are also felt by our partners.

As you know, this can lead to introducing stress into the relationship. And stress seems to be an antagonist to MS and is best avoided.

The two of you need to talk about this, so you can join forces against the MS. If you continue to fight each other, MS will be the winner.


hayla
3 years ago

Problem is he gets angry whenever the MS gets mentioned @stumbler .
He cant accept that it is happening to /me/ of all people and how unfair it is to see me so dependent/vulnerable at times (and those are his words). Plus I think my attitude and acceptance of it (MS) and all the drawbacks also ‘infuriates’ him a bit.
I try to go by without his help even when I should ask for it (when I have to wash my hair for example) because I know it hurts him to see me so vulnerable but it also hurts me how he lashes out about it at times.
Wish we lived closer to my family or that we had someone to help me and around the house so it wouldn’t all fall on him because nowadays with all the stress, insomnia and migraines Im pretty much useless, but as money is tight (I have no gov help and my family can only help so much due to to cost of the meds I have to take on a daily basis for pain and whatnot) and Im afraid this might be the end of us sooner or later….and thats what hurts the most. ='(


hayla
3 years ago

Mostly I have no one to talk to or actually /help/.
Luis gets angry and lashes out (and to be honest Im not sure for how long I’ll be able to reign in my own temper). I only confide so much to my mom cause she lives far away and has already too much on her plate with my two teen siblings and idiotic ex stepdad. The few close friends that I have left after I got sick barely understand where Im coming from, cause lets face it /I/ am young and dont /look/ sick at all to the naked eye. The MS association I am associated with only actually helps people that /look/ the part (aka cant do anything without help and are on a wheelchair or worse) and they usually charge something for said help.
Im just so fed up with this situation and this freaking country!! Portugal might be a part of the EU but in certain things we might as well live in a 3rd world country. -.-‘


stumbler
3 years ago

MS sends us on a lifelong journey, which starts with us navigating our way to acceptance of the condition.

When we have a partner, we need to include them on that journey too. Unfortunately, it is a fact of life that some partners do not have the resolve to manage the journey.

I wish you all the best. 😉


hayla
3 years ago

I just wish he wouldnt get so damned combative about it, y’know?
Its been 2years since I was diagnosed, longer since I /knew/ it was MS and even so he still seems to fight me every step of the way when it comes to actually talk about MS @stumbler .

True there has been some improvement since this journey started but thats only his acknowledgement that I am ‘sick’ and need to take tablets/get injections (when I was on Extavia)/get IV infusions every month/go to doctors appointments every now and then plus being a bit more receptive when I complain about tingling feet or neuro pains and such…but actually mention MS and it starts a one sided war.

Not mentioning that when he gets frustrated about something or in the rare occasions he has to do something I used to do before the MS kicked in and cant nowadays he makes me feel like utter shit.


stumbler
3 years ago

@hayla , as with everything threatening a relationship, you need to talk to one another, open and honestly. This will allow you both to understand each others feelings and, hopefully, find a way forward.

Open communication is essential.


hayla
3 years ago

Ive tried so many times during all this time @stumbler , I even tried to trick him into seeing a counselor with me….unfortunately to no avail!
I dont know what else to do! if for one side he is supportive and a sweetheart for the other he behaves like a brat and makes me feel like crap. I understand he is under a lot of stress but it still doesnt give him the right to treat me like this.
The worse part is that I love him but dont know what else to do to save this relationship ’cause Im getting to a point where I might snap and after that there is no going back, no matter how much I still care and love him -.-‘


hayla
3 years ago

Thats what hurts the most….


stumbler
3 years ago

@hayla , you could do worse than show him this post and let him have a read. It’ll show that you’re aware of the problems, both your problems and his, and that you want to find way of working through it……


hayla
3 years ago

He doesnt read english though plus Im afraid it would only cause yet another argument.
In the past I’ve “forgotten” MS literature around the place, Ive also left a letter to him about it and how I felt about his attitude just before I went on a visit to my mom….didnt go down well either but it would probably be worse should I had been here.
He either ignores it or when he does read gets pissed off denying he behaves in such a way. -.-‘
He is a stubborn aries @stumbler and I have gotten out of ideas on how to get it through his thick head.
Im afraid that, as in most cases, he will only realize what he /had/ when its already too late…and unfortunately Im get to my limit with all the other problems Ive already got on top of his attitude.


cameron
3 years ago

Perhaps you ought to have an exit plan from this relationship. I don’t mean to share that with him, but to clear your head, a plan for the ‘what if’ scenario. The panic you’re feeling might reduce a little if you have a private idea of an alternative. It might just be worth thinking of what you’d do, where you might live etc etc. I think it’s very difficult to imagine a scenario where a much-loved person is not there, but it’s maybe a bit easier if you’ve prepared mentally. Just my thoughts and remember: this is NOT your doing or your fault. Big hugs xxx


stumbler
3 years ago

@hayla , I’m afraid I’m a stubborn Aries too! 😕

But, you don’t need me to tell you how difficult this is. You both have to sit down and be honest with each other. Yes, there are problems in your relationship that are no-one’s fault. So, it’s not a blame game.

But, is your relationship strong enough to manage those problems? You both have to agree that you can manage these problems together or you may have to both move on separately. Otherwise these problems will take control and destroy one or other of you…….

You have to talk, open and honestly, to determine where you’re going…..


apachewarrior
3 years ago

What your partner may not realise, is the quarrelling actual contributes to your ill health. Your low mood & stress makes recovery difficult. The damage isn’t always visible.
He maybe in denial, embarrassed, angry & frustrated that he cannot do anything to prevent it. He may even be thinking about how his dreams are shattered, forgetting how you might be feeling right now.
Change can be difficult to accept, there may be times when he will blame you, because its not always obvious that its the disease that causes you to act in ways that appear abnormal to him.
Until there is a cure for MS, its not going to go away, it’s part of your life & he has to accept that along with all the negativity it brings. End of the day the one who is suffering is You. Once he gets that in his head, then maybe he will stop feeling self pity, stop blaming you and start to help you face everything that may come your way.
You need to be thinking about you & your needs right now.


northernlass
3 years ago

Hi @hayla reading your post has made me feel quite sad for you.. not only do you have to deal with MS but also say goodbye to your dreams and aspirations of a normal life with a supportive loving partner. I think @cameron is right and you maybe need to plan an exit strategy of your own.. where to live, what support you can receive if you do move to a different area.. and always essential MONEY..!!.It does sound to me like your partner may also have an exit strategy and sadly it sounds like it is to get upset and angry with the demands your MS has put on your relationship by being unkind to you.. maybe he is hoping that you do snap and push him away and then he is free to walk away and not feel guilty..? @apachewarrior is probably also right in that your partner is feeling sad and frustrated with how things have had to change.. his role as loving partner changed to care giver and maybe that is hard for him to come to terms with.. maybe worth a shot at sitting down and talking about how MS has effected both of your lives and how truthfully you can move on from this .. be it together or apart. Best wishes XX


chunes
3 years ago

Hi @hayla, there’s a lot of empathy for you on this thread; just wanted to add mine….(:

I have on tip that might be helpful. See if he will agree to some active listening – you each take it in turns to say one thing about how you feel. The other person listens and repeats back their understaning. There’s no interrupting, just clarification. The aim is to understand the other person, not to prove a point.

The fact that you take it in turns means you will listen to him also – that’s part of the deal.

Well, just thought. There’s probably stuff on the web about it.

All the best, and don’t worry about venting a little, it’s perfectly healthy.


min
3 years ago

Hello Hayla,
I’m with you on this! Our children are 20,17 & 11. We have promised the 20 yr old since she was about 5 that we would take her and her brother(there was only one then!)to Disney world Florida when they were older. Four years ago I was diagnosed with benign M.S, it’s now secondary progressive. We have been married for 30 yrs and have always had the conversations of “when the kids are grown up we can travel/spend time together on our own”
Since M.S it’s been “well, we won’t be able to go to Prague/Austria/Disney world with the kids (young adults!)now because-it’s not your fault- but you can’t walk far so it’s not possible. Said in such a way that I could also be responsible for the problems of the rest of the world! I felt like saying “well shoot me now and get it over with as I’m obviously holding you back!”
As far as he’s concerned it’s all doom and gloom now and he’s a saint for being the husband of the woman with M.S, which I’ve noticed, is acknowledged when it suits, usually when other people are involved.
Meanwhile, 30yrs of marriage or not I’m lucky that I can still get about slowly and may be worse in years to come so he needs to think about whether he wants to carry on together (everyone should have a choice and they can’t be blamed when M.S changes the goals in life). I’m still contemplating (financially and physically) if Disney world is viable. If he doesn’t want to cope with it then our children and me can go.!??
Take care and think outside the box. Xx

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