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Author Topic: Sufferers partner seeking advice on relationship rocky period  (Read 1463 times)
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charmwah
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« on: January 26, 2018, 08:16:02 AM »

Hi all

Iím wondering if anybody can offer any advice for the partner of an ME sufferer. My partner and I have been together for 18 months, with her CFS diagnosis the week prior to our relationship beginning. Since then we have tried to work through things together, and I feel as though I am supporting her as best I can; I do the vast majority of activities requiring physical exertion such as housework, chores, cooking & shopping trips. I contribute financially since my partner is still working, though currently still working 4 days out of 5. I feel like I provide emotional support, as well as trying to rationalise things when she struggles to see them in an ordinary light. I do try very hard to make things as smooth and as easy for her as I can, as I realise how debilitating and life changing the condition can be.

For the last 3 months, possibly as many as 6, we have been arguing frequently over what to me are very minor things. These arguments only ever occur when she is fully exhausted, in other words when she is completely at 0% energy. They never happen when she is able to think Ďstraightí and unhindered by exhaustion. I understand this, and I try to not take it personally and to see it for what it is. But in these time periods its as if she is a completely different person, akin to having a relationship with Jekyll & Hyde. I never know which one I might encounter, though I can somewhat guess given how much she has been pushing herself at work. When I try to explain this and how she comes across (she looks at me differently and without warmth, she talks to me as if I am a child, she is far less affectionate in generalÖ), she says that its something that she canít change because she has no energy or because she canít think straight. But then barely minutes after we have an argument and I move to another part of the house or go for a stroll, sheíll write me a lengthy email to explain, which takes some amount of thought and focus to produce right?

I donít want to come across as selfish and as if I donít understand. I feel like I do understand some of the condition, but Iím not the sufferer so I can never know exactly what it feels like, nonetheless I listen to her and try to encourage her to rest when I can see that sheís pushed too hard. I had to push for her to see that counselling may help her to fully accept the condition and what it means to her and the new her, as I felt that she was in something akin to the first of the 5 stages of the grieving process, denial. Eventually she did agree, and is now on a waiting list to see a counsellor, which I hope can make a big difference in her outlook and how she can move forward.

But at present it feels like its getting progressively harder to find the good times with her, and that as these arguments become more frequent she is unable to see things from any other perspective than her own. I have read about how the condition can make you feel isolated, and I have tried to talk through things with her so that we can both be heard and try to find common ground. In periods when she is feeling more positive (less exhausted) she has accepted some of what I have had to say, and has seen the condition from a different perspective. But this lasts for perhaps a day at most, because she then pushes too hard and her exhausted self takes over. And I realise that the condition can cause these exhausted days without warning or reason, but I also know that in periods where she isnít pushing too hard and takes time for herself to rest and relax, that the exhausted days are the exception rather than the rule.

Iím not sure if any of that makes sense at all, but I welcome any thoughts or advice.

Thanks in advance,

Dave
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roger
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« Reply #1 on: January 26, 2018, 01:59:05 PM »

Hi Dave, and welcome.

First, let me say that you donít sound at all selfish, just the opposite in fact.  Caring for someone with CFS can be extremely stressful, so please donít forget to look after yourself as well as your partner.

In CFS, one of the several sure signs that Ďthe tank is emptyí, is a temporary change of character Ė what youíve experienced for example. When you reach that stage, negative cognitive changes happen because the brain needs energy just like everything else. I know from personal experience that such changes and the resultant character changes are followed by extreme guilt. Iím guessing that the emails youíve received are the result of that. And please be aware that brain chemistry can return to normal when general energy has returned even slightly. So please donít think that sheís faking the cognitive issues because she almost certainly isnít.

Now the biggie Ė anyone with any level of CFS other than mild, is delaying recovery by months (possible years) by working, even for four days a week. Is there any way she could give up work, at least for a few weeks?

Finally, as I intimated at the beginning of this post, everything youíve said indicates that youíre doing as much as any CFS carer can. Itís a frustrating and thankless task, mainly because you donít really know what to do, but itís also a very worthwhile task because support from a partner is hugely important for any CFS sufferer. But as I said at the start, please donít ignore your own needs Ė theyíre important, too!

Best wishes.

Roger.

PS - your post made perfect sense.
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charmwah
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« Reply #2 on: January 26, 2018, 03:59:35 PM »

Thanks Roger, I appreciate your kind words.

We have discussed how her working is not helping matters, and that in an ideal world she should stop. Her worry is mainly that she can't afford to stop working and continue to pay the mortgage and bills etc, but also probably because she will feel useless if she isn't able to work. We don't live together yet, though i'm at her house probably 5 days out of 7, and I work 5 days a week also. I contribute to her household bills, and purchase shopping etc. She has finally looked into the possibility of PIP and has to return her application shortly. However, she has already decided that she is unlikely to be awarded it and will have to go through the appeals process and even then may get nowhere.

Originally she was working 5 days a week, and then went down to 4 days to see if it helped, which it hasn't. She now plans to go down to 3 days if the PIP is forthcoming. My personal feeling is the same as you have stated; that she gives herself no chance of recovery while she continues to work, whether its 5 days or 3.

I'm so frustrated because at present the time we do get to spend together is not of any real quality because she is so exhausted, and as a result is this 'different' person.

Today for example, there is tension because of her exhaustion Weds & yesterday. She went into work today and her boss sent her home and has also told her to have next week off. I'm run down and stressed about the situation and have said I want to go home tonight because I need some time to myself, just a night. But she has been messaging me this afternoon saying that she needs me and that i'm punishing her if I dont come to her house...
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roger
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« Reply #3 on: January 26, 2018, 04:29:32 PM »

Hi again, Dave,

A hard truth that applies to most moderate to severe CFS sufferers - there has to be some priority thinking. Maybe she'll get PIP and if not, maybe going to three days MIGHT help, but maybe not.  So, re priorities, what's most important health or lifestyle? It's not an easy decision and it's one that only she can make. For me, it's a no-brainer. I gave up a very highly paid profession, and the earning years I lost cost me several hundred thousand pounds. But for me, it was the right decision.

I totally understand the frustration issue - I've said on this forum that life's as hard for a carer as it is for a sufferer. Sadly, I don't know of a solution to this problem. I was very lucky. I had/have a totally understanding and supportive wife, but I know that not everyone is so lucky. However, it's important to understand that CFS doesn't have to be for life. Do the right things and recovery, or at least dramatic improvement, is likely. If you can manage to continue understanding and supporting her, that recovery/dramatic improvement is likely to come that much quicker.

Sorry, but I need to be blunt. Your support is REALLY important, but so is your own life, and you'll be of less help to her if you finish up chronically stressed out. It's a two way street - she has to accept your needs in the same way that you accept hers. If that doesn't happen, the relationship is unlikely to work as well as it should.

Good luck and best wishes.
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charmwah
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« Reply #4 on: January 28, 2018, 11:06:06 AM »

Thanks Roger.

We had a long chat, and things are hopefully clear for us both, to move forward and continue to understand each other.

I also convinced her to use this forum in order that she can find other sufferers to speak to who really understand what it means to have CFS. She has now introduced herself and I hope it proves to be useful.

Thanks again for your help, this forum is invaluable!
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roger
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« Reply #5 on: January 28, 2018, 01:49:21 PM »

That's GREAT news Dave  thumbsup

Is your partner's user name FindingME? If so, tell her it's a great username  smile
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KV_Tofu
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« Reply #6 on: February 05, 2018, 02:43:10 PM »

Hi!
I dont know if youre going to come back to this forum but here's my input:
I will admit i didnt read it all but i will say this: my partner has to deal with the same thing. The sinplest most effective thing i have gotten him to do is to remind me that my negative emotions will make me sicker so i need to find something to calm me back down (meditation, calming music, chilled movie etc). As i know what it means when he points it out, it will stop me in my tracks. It doesnt matter if i think i am right in the argument or not, because at that point i am reminded i am making myself sick and its not worth it x
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