Joie de vivre

So I have the MAV halfway under control, taking my meds, being scrupulous with the diet. Still can have a bad day due to weather changes or stress, so I know I’m not home free.

What I am noticing is that I have no fucking zest. Can’t eat this, can’t drink that, dasn’t push too hard, . . . between that and a fair bit of daily pain (arthritis/necrosis), I don’t see a whole lot to look forward to.

It seems awfully greedy for me to say this, when there are people on this board who are nauseous sick dizzy a lot of the time, or have tinnitus and other symptoms that don’t leave them any peace, or are worried about their income.

I’ve been taking care of my (non-migrainous) wife for the last week and a half: she’s been down from food poisoning thanks to poor food-handling practices at a downtown restaurant. She’s lost at least a pound a day, she’s so nauseated–and weak. I am glad that I’m perfectly capable of taking care of her. And tomorrow or Tuesday I’m off to give a little foot massage to a friend’s mother, just moved to hospice in keeping with her advanced care directive.

So I’m right up against people who are in worse shape than I am, but it doesn’t “give me perspective,” so I can go tira-lira-lay.

Hi David,

Two things I can think of. Firstly, is the Nor giving you mild depression. Ami did that to me the last time I took it.

Secondly, just the fact that we have to lead such a restrictive life to feel just half as well as a healthy person who can knock back the booze, fags, junk food and go out all night. It gets hard afer a while. And what happens when we have a bit of a blow out. Well last night I did. It was a hot and humid day here in the UK. Had a mild background head (the usual) but decided to go mad and go to a blues band (it was held in the sort of dive, years ago, would have been all smokey and lots of beer!) So I sat there with my apple and melon drink and only drank half of it, the music was way too loud but good. I only stayed an hour. At the end I was a bit deaf. Then went for a meal, had battered fish and chips (it was about the safest thing on the menu), it was very hot in there. Half way through started to feel narcoleptic tired, really bad. Home, bed and humid night, leapt out of bed this morning and nearly hit the wall, vertigo! Splashed face and neck cold water, took painkiller and it hasnt developed into a full blown long attack.You start to think that almost any enjoyment in life is taboo. Also the holiday I had I was migraining the whole time and vertigo at the end of it. But whats the alternative?

Also, the little health you have, instead of using it for yourself, you are doing for others. I seem to have spent a lifetime doing that and lately I am getting a little more selfish. Obviously you have to look after your wife but when she is better, I suggest a bit of a blow out (something for yourself, something nice, go a bit mad and sod the consequences). You will get back to base soon enough afterwoulds :slight_smile:

Christine

Hey David,

At the risk of sounding like a complete new age wanker, a lot of this is perspective and attitude. I’m going to share with you parts of a recent email exchange I had with my Dad, who is recovering from a hip replacement. It’s boring and restrictive (literally house bound for six weeks). Our discussion was about genetics (osteoarthritis, migraine amongst others) and how you can ‘beat’ them. Germane I think to this discussion. Here goes (I’ll try and cut and paste it so it reads in chronological order:

Me:
*As for the healthy guys at your work getting heart attacks and things. Well, this is tricky as there are so many other variables to control for. In your instance we can compare you and your brother Jerry. Same gene pool, completely different lifestyle. You ran a gazillion marathons, lifted weights, kayaked, swam, biked etc etc and embraced various healthful diets, kept within a healthy weight range, have always kept your body and mind active with projects (eg builidng planes), reading everything and travelling widely. So, not only have you lived a much more fulfilling, enjoyable and useful life but that lifestyle has kept your crappy genetics at bay for a very long time and continue to mitigate those crappy genetics. Jerry on the other hand has been a fat, housebound sloth for many decades.

My point is that you can’t change your genetics but you can do everything in your power to minimise/mitigate its flaws. So, if you HADN’T done all those good things you would probably have had a Jerry life rather than a Jim life. Not much comparison really is it*?

Dad:
Thanks for that cheered me up enormously! I know that you are doing the same thing! So genetics can be beaten.

Me:
*The other thing to remember that despite whatever health problems you (or I) have had, in the scheme of things they are relatively minor. Mental illness for one. The poor people A treats at the mental hospital are (and have been their entire lives) absolutely crackers. Daily mental hell from which they cannot escape. So they’ve never had jobs, meaningful relationships, or really any control over their lives - completely at the mercy of the state. And as for the physical stuff - well - where to start? It is statistically unbelievable the range of horrible diseases you and I DON’T have.

And then on to our lives. We live here in Australia! Best place in the world! Seriously. I saw X and Y tonight and they are living in some high rise overlooking the harbour - he said he wakes up every morning pinching himself that he lives here with this amazing view. I said the same thing. Every day - what a great city! What a great country! Oh the luck of being born here!

I didn’t watch it (only caught last half hour of final episode) of that show about mean spirited Aussies tracking refugees. Called ‘Go back where you came from’ I think. Finally - these people see first hand how SHIT most people in the world have it, through no fault of their own, just bad luck of birth. And here we are - in Sydney!

Life is good. Enjoy!

Talk soon X*

Thanks for caring, Christine, Victoria.

Also allow yourself to be a bit down for a day or two and wallow in it if you want, we are all entitled :slight_smile:

Christine

Hey, David. I have those kinds of days or periods of times as well. Just went through one recently where my restricted eating really frustrated me. Was at a local restaurant with my bland roasted chicken salad/no dressing/no cheese/no nothing on it. Across the aisle from us was a lady stuffing down my most favorite nachos in the whole world: I was able to eat those just 3 years ago without getting dizzy or sick. I went home and cried. I’m trying to do everything right with the diet, sleep, meds, etc. and still have off days. And I also have people around me aging, dying, etc. so it has become a bit depressing and daunting. My husband and I came to the conclusion that we need to get away from it a bit more if it is nothing more than quick day trip or something. I also think that these meds will get to you after awhile causing a dampening/dysthymic effect mentioned on another post. I probably won’t be changing my meds, but I can keep adding foods and supplements to offset that if possible. Loved Victoria’s exchange with her dad because I have to intentionally remind myself daily of my blessings and great fortune to continue on and help my family and friends. Just remember that caregivers are at high risk for depression so take really good care of yourself and put yourself on that “To Do List”! Hang in there…hopefully you’re just going through a rough patch and it will get better soon.
Gail

Hi David,

I totally understand how you are feeling, as I had spells like that too. Although we know that we are lucky compared to others who are worse off than us, it’s still human nature to feel down and regret the things we can’t do anymore, the restrictions MAV places on us etc. To be honest, when I was at my worst (room spinning vertigo, unable to get up off the floor etc) that wasn’t when I had the feeling you are describing, but it was after a long time, when I’d recovered to some extent, but facing a reality where perhaps I would never feel normal again. I felt like my life would never be normal, and I was kind of grieving for that (sorry, that does sound melodramatic, I know). I found it very hard to come to acceptance of this condition.

However, you will come out the other side of this, and feel better again, and get your joie de vivre back again. I know I have. And you will too. You obviously have a lot of good stuff going on in your life, and I particularly like the way you talk about your wife in your messages, it makes your relationship sound so lovely and caring :smiley:

Take care David, and I hope you are feeling better again very soon.

Maybe if just one ice cream manufacturer would reply about natural ingredients in an upfront non-secretive way and it turned out you could eat it… :lol:

What a good crew.