MAV wreaking havoc on relationship

Hi Everyone,

So, I’m sure I am not the only one, but I have been suffering from MAV for 14 months now and it looks like there may be a little relief from the Nortriptyline that I am taking. It is helping to relieve some symptoms and I hoping it will continue to improve. But, in the meantime, this condition has all but destroyed my relationship with my husband. I am trying as hard as I can to do as much as I can, work, take care of a challenging, active 2 year old, tend to things in the house, etc…but because the MAV has taken a toll on me physically and emotionally it has driven my husband and I apart…We either fight or don’t communicate…And this constant emotional stress only worsens the MAV symptoms…it’s this horrible Catch-22…

Has anyone successfully navigated this condition and maintain a healthy relationship?

Thanks,
Kim

Wow, I don’t know you are doing it all! I think the first problem is that unless you have this awful ailment, there is no way you can understand how it invades and pervades every aspect of life. Trying to take care of a two year old, work, and also be a loving present wife, is really hard even without MAV. Perhaps counseling would be a good place to help you guys open up better communication. Your husband needs to be educated on the difficulties you are enduring with this ailment, and perhaps you may need to hear his feelings about how he experiences what is going on. Maybe he has guilt or fear or feels helpless so he covers it over with anger, who knows? There could be a whole host of reasons, so having someone helping you talk it out would be great.

Kim - I’m sorry to hear you are going through a tough time with your husband right now. I can completely relate. I think the hardest part is that no one can completely understand what we are going through. Our condition is somewhat of a “hidden” condition so no one can really see what we have to deal with every day. Most people take for granted feeling good and having their balance in check and they just can’t truely understand. I dont have a family of my own (I’m only 22) but my parents, friends, and siblings dont get it and expect me to do as much as they do. It can get pretty frustrating. I lot of people in my life (my parents espec) think I am lacking motivation but really I just dont feel well enough to do everything I use to although I try to. This definitely can lead to stress and worsening the condion and goes on and on into a vicious cycle. I wish I had an answer for you about how to navigate this condition and keep a healthy relationship and all I can tell you is to keep your head up and to not give up. I agree with dizzytink that counseling would be a good idea or something to look into.
Take Care,
Ashley

Kim

I so hear you and have actually thought about posting this same question many times myself. Although my children are older, teenagers and early twenties, right now they are all home with us. Trying to work, parent and maintain a relationship with MAV can be overwhelming. I have been dealing with it for 6 yrs and can now only say my husband kind of gets it. I think for the spouses or significant others there is a definite feeling of helplessness because they can’t fix this, a feeling of loss because they want the person you were before this MAV came about and anger because “your the strongest person I know why can’t you just fight this” as my husband once said to me. Throw in there the lack of intimacy whether due to MAV symptoms/side effects of meds/body image due to wgt gain from meds or just the downward spiral of the relationship…it’s just a snowball effect.

I don’t have any answers, I definite think give counseling a go, something else I tried was when I was having a good day, I would try to put aside some one on one time for us, hopefully if the meds continue to work you will have more good days, hence more time for each other.

Best of luck and know you’re not alone, something I think alot of us here are dealing with or have dealt with at some time or another.

Cecilia

I have had this condition plus CFS (equally non recognizable) for over 20 years and I still have to scream sometimes to be heard with close family. Certain situations when I am insisting I cant walk any further etc.

Things that have helped. Learning to say no, then adding, well I could probably manage just … so that there is some sort of meeting halfway.

When visiting as a family (lot of people in the room) actually better as you are not focused on so much. Go outside to have a cigarette (if you smoke), go to the loo and spend 10 minutes in there and relax. Get a dog (good excuse to leave and go home).

Shopping. (make sure you leave later so shops close, then you cant stay too long. Say you are hungry then you can sit down, relax and hopefully he may read the paper).

Spend time away up in a room on your own and relax, then you are more able to cope when you are in company.

Take a book or magazine so you can sit behind it and pretend to read. Pick seats on the end of tables when then are a lot of people so you dont have to talk too much.

Dont keep talking and trying to explain your illness to them, they get tired of hearing about it but if you are really bad, say you are really bad and are going to lay on the bed and just leave the room.

Dont try and play supermum to your little one, use a playpen anything that helps you cope. Be a bit more selfish because you will be less moany and better to be around when you are there.

Lastly try and laugh with them when you are good and dont stop doing all the enjoyable things because you are afraid of how bad you will feel, they must have a life too, and you want it to be with you. For instance I went to an Animal Park, lasted 15 minutes and got bad, so we took the little train around the park and then went for something to eat, I said I needed a sit down in the car, then I carried on, wasnt brilliant but everyone enjoyed the day and I felt good for achieving something.

Hope some of this helps.

Christine

Thank you everyone for your thoughtful responses! We are already in therapy together, but like this condition, there is no easy answer.

Best,
Kim

— Begin quote from “monkeygirl”

Thank you everyone for your thoughtful responses! We are already in therapy together, but like this condition, there is no easy answer.

Best,
Kim

— End quote

Kim, I TOTALLY understand where you’re coming from. I am not currently in a relationship, but when I was living with my parents, I had a hard time explaining to them that I was physically/emotionally exhausted. If I snapped at them or started to cry, they didn’t seem to understand why – they thought I was making it up.

Couple’s therapy is definitely a BIG and POSITIVE step forward. Simply taking the chance and GOING to therapy just PROVES how much you love your husband…and hopefully it shows how much your husband loves you. Relationships/Marriage take time and patience. I hope that things work out for the best!

Kim, I can say that it has not destroyed my relationship with my sweetheart. We’ve been together 18 years, the last 6 of them married. Yes, we’ve done a lot of counseling.

No kids–in fact, my onset came not long after we gave up on our effort to become parents–but some powerful work stresses.

It’s not all mellow for us, but we worked damned hard before tying the knot officially to learn to do the needful–“I statements,” speaking up, specificity rather than global framing, going for problem-solving and not blame, boundaries, all that stuff.

David, I understand the stresses of trying for your own family. We went through 3 x IVFs and three trips to Romania to adopt our daughter. The stress of the IVF was nothing compared to the 5 months of adopting Becky, it was 100% stress every day.
If we werent racing up to London to meet aircraft where a seat had been saved for paperwork for Becky and taking it by hand to the Home Office to keep things moving, I was laying on the carpet after 3 hours of pressing the repeat button on the phone to Romania trying to get through, when I finally did, the answer was “Dorrin not here” (that was our lawyer out there). In the end we had to fly out there just to take paperwork into the embassy as he wasnt doing it. Sorry, rambling, get me started on this one. But anyway, I see it was mentioned casually as one of your stresses, but it is huge at the time, I know. That, with your work stresses (was really your whole world at the time) must have been a huge contribution to the MAV.

It does seem to hit people who are highly motivated (dont give up easily). I always hated the idea that there was a “migraine personality” but I really do think there is. Its unfair, it seems to attack the people who try hard to achieve, who dont give up easily, who care.

Like you, I am lucky, our problems have bought my husband and I together, we are stronger as a team. This MAV is something different though and a lot of the time I have to work around it, I dont think anyone that hasnt got it can quite understand it.

Christine

Hi Kim

MAV certainly contributed to ending my seven year relationship when I was initially struck with this illness some years back, though more because it highlighted deficiencies in the relationship which the illness made me realise I couldn’t accept any longer. I think you can overlook weak points in a relationship sometimes when you’re well and independant, whereas addressing the prospect that I may have been dependant on this guy forever kind of put a different spin on it (although don’t get me wrong, he did everything he could whilst I was ill the first time and is still a very dear friend now).

This time round my situation is somewhat complicated but enough to say that I have a very very close friend who is being my primary support with this and is taking care of me when I’m really floored by this thing. He has a very different approach to my partner last time and is interested in finding out as much as he can about this. I was keeping a bit of a diary as this relapse folded out - trying to describe my symptoms each day. I was glancing over it before my hospital appt on monday and he asked if he could read it and was actually quite upset for me as even having been around so much, I think he’d underestimated quite how crap I’d been feeling. He’s now trying as much as possible to understand what I’m going through and reads through this board sometimes and may also come to the migraine action AGM with me in a couple of weeks (mains topics for discussion are vertigo and dizziness). I suppose what I’m saying Kim is that couples counselling is a great start, but even the counsellor has no idea what you’re going through. What might help is to try and somehow expose him to others who are also experiencing the same as you, try and make your experience seem more “normal”

I wonder scott whether another thing we could think about addressing on here is having a thread for partners and loved ones to communicate with each other???. We get so much support from these boards but expect those who love us to cope in isolation.