# Don't know what to do



## Frizz (Apr 1, 2015)

Hello

I'm not sure if this is the correct place to post this??

This is the first time I have posted and the first time in my marriage that we are experiencing problems. I'm sorry if this is going to be a long post.

I have been with my husband for 13 years and had M.E for 9 of those years. We weren't married when I was diagnosed and at that point I told him he was free to walk away from the relationship which he declined immediately.

Up until 4 years ago I was managing my illness reasonably well though we were obviously still limited with some things we can do (such as going out regularly). Four years ago my now husband asked me to attend an invitation from a client with him to a motorbike race. I didn't want to go but he persuaded me. Unfortunately I relapsed very badly. I had extreme symptoms and have struggled the last four years to get them stable as nothing I tried worked and I have no medical support. All this time I was aware that I was not giving my husband enough attention and our sex life basically stopped. It has really only been the last four months where I have finally felt I have the symptoms stable.

Two weeks ago I confronted my husband as I knew something was wrong as he had been very quiet. He didn't want to talk saying he needed time to think but I pushed until he finally told me that things weren't right between us and that:-

* I was too emotionally/mentally/physically dependent on him
* That my weight was an issue (I am not excessively overweight)
* That he didn't get anything out of sex the odd times we were intimate
* That he didn't think my illness would be "that hard"

He stated that he didn't know how he felt and that he knew a lot of the things he was saying was selfish. I had always promised him that when I got my illness stable I would be working to improve things and, unbeknown to him, this is what I had been doing the past month.

I'll admit I went into a blind panic. My husband means everything to me (I think this is half the problem). I do not want to lose him so I have been trying to change things in all the areas he mentioned. 

Last week I "dressed up" for him and it seemed to go down well. I did the same this week only to be told I am trying too hard - "after four years you can't just expect me to respond straight away. I don't work like that". And then later he said "I am a bit annoyed that you are suddenly doing all these things after nothing for such a long time". I reminded him that I said I would work at things once my illness was stable to avoid a relapse. I also reminded him that I was very scared when I had the major relapse and so I didn't want to do anything to end up back like that.

He has stopped telling me he loves me but has instigated intimacy a few times, tells me I look nice and we are exploring new things together (such as dong date nights). I just don't know how to behave the rest of the time. I don't want him to think I have slipped back to being totally unresponsive to him but at the same time I don't want to be overbearing. Ultimately I just do not want to lose my husband.

Thank you to anyone who has read through that lot and I welcome any advice x


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## Lloyd Dobler (Apr 24, 2014)

Is your husband on board with your medical issues? It sounds to me like maybe he's not 100% supportive of what you're going through.


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## Sandie (Mar 31, 2015)

what is M.E and why don't you have any medical support???


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## Frizz (Apr 1, 2015)

Hi and thank you for your replies.

Yes my husband is on board with my illness - he was the one who actually ended up making the suggestion for diagnosis. He has been incredibly supportive and patient.

M.E is Myalgic. Encephalomyelitis - basically my brain stem has been damaged by an enterovirus and is now malfunctioning sending random symptom messages to my body mimicking other conditions.

I have no medical support because my GP's are useless (can't change as there is no other practice to change to) and I have had my few weeks worth of specialised treatment after diagnosis.

What I forgot to add to my main post is that my husband turned 50 in February which he was dreading saying he had a bit of a meltdown when he turned 30.

Also I have acknowledged to him that I have neglected him and apologised x


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## Sandie (Mar 31, 2015)

I'm so sorry!


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## Frizz (Apr 1, 2015)

My illness is part of me now but it became my only focus. I lost who I am.

I guess I need to find me again & remind my husband of the person he fell in love with? I was confident, independent and more fun. Would that make a difference? x


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## Mr.Fisty (Nov 4, 2014)

You have to show that your capable of change by performing the actions. You let your medical condition define who you are, where there should be more facets to what makes you, you. I believe that when he turned 50, he probably thinks is this it, is my life going to revolve around her condition, and I have missed out on so much. Yes, your condition does presents certain limitations, but instead of deciding something cannot be done, or you prefer not to, find ways around it, or learn to accept that I have this condition, but there is more to me than this, and I have other strengths that I can amplify and display. You need to change your mindset.

You may or may not get your husband back, but this will benefit you first and foremost. Any improvements you make on you will benefit you and those around you. It decreases the stress in there own life. Instead of not doing something, do what you can with your limitations. An effort is always better than nothing.


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## Frizz (Apr 1, 2015)

Thank you foolscotton3 I will read it x

Mr.Fisty I think you are spot on (though I pray that I do not lose my husband). The week after speaking to me about his feelings, he actually told me he had checked his blood pressure and it was the lowest it had been for a long time. 

I have already started to make changes, not only to prove to him that I finally have my illness under control but also that I have realised I lost who I am and I do not like the person the illness made me become. 

I am limited to what I can do with my weight in terms of exercise but I am making a conscious effort to lose weight. Basically I am taking responsibility for what has happened but I think I was trying to run before I could walk (so to speak) x


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## Frizz (Apr 1, 2015)

Yes my husband is amazing and I admire him greatly. Him getting burned out has always been an issue for me as he does not have an outlet/hobby where he can express his feelings nor does he have very many friends. I have never, ever, stopped him going out and if he does make plans with friends I positively encourage it because I think it is so important. He has always said he would rather do things with me but this has not been possible for some time now (I actually got tickets for a comedy club tomorrow night for us). He bought a bike to go riding (used twice), he used to go to the golf driving range (stopped), etc. The only person stopping him from doing anything is him.

I believe my husband loves me but not sure if he's "in love" with me at the moment. 

I have also never treated him as my carer. I have still managed to maintain the house (at times not to a very high standard but acceptable) and cook/prepare a meal for him every day. This seems to be the only independence I managed to retain x


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## Frizz (Apr 1, 2015)

What I should add to this is, when I had my major relapse four years ago it left me petrified. Firstly because it was so severe I did not (& still don't) know what damage it might have caused my body. My going to the bike race was down to my husband pushing me to attend even though I didn't want to. I blamed him for the relapse and he also blamed himself. I have forgiven him now because he wasn't to know what would happen. Secondly because I lost control of my symptoms and it has literally been trial and error trying to stabilise them again. This has only happened in February this year. It has been a very long, tiring and disheartening process.

I promised him that once my symptoms got under control things would improve elsewhere. Even in the months before I got them stable I was suggesting us going out but he kept saying "you are not well enough". So I was actually trying, but failing, even then to spend some quality time with him. I have reminded him several times of my promise and that I am now able to fulfil it.

Also prior to about a month ago I had absolutely no positive emotions whatsoever. Zilch. Even sexual except when my husband touched me. I spoke to Drs and searched online trying to find answers/solution but failed. Literally the middle of February I started getting tiny flutterings back until they eventually all returned early March. I didn't tell my husband because (a) I wanted to be sure they were here to stay and (b) I actually wanted to surprise him - I thought it would make him happy. Unfortunately, it seems to have made him annoyed that "suddenly" I am being amorous and bubbly again. Because of my illness I can get my words mixed up and confused so I wrote him a letter yesterday explaining exactly what has happened with my symptoms and emotions the past few months. I know he has read the letter but he hasn't said anything to me. I wanted him to understand that this really is a recent development - my illness is so erratic changing symptoms frequently and throwing new curve balls I never know what to expect each day so I wanted to test my symptoms and emotions so I was convinced they were not going to change again.

I also told him that I have never fallen out of love with him or not wanted him these past years just that fear and pain had dominated me x


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## Mr.Fisty (Nov 4, 2014)

Give him time to process his emotions. In the mean time, keep working on you, and perhaps show him signs of affection, like hugging. You do not need to say anything until he is ready to talk.


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## Frizz (Apr 1, 2015)

Thank you, I will. I really value opinions from yourself and foolscotton3 (a man's perspective) x


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