These are the days this illness makes me sad

This weekend they are having my 30 high school class reunion in South Carolina. I did not graduate with these folks as I moved to Atlanta when I was a junior in high school but I went to school with most or many of them my whole life.

I have recently through facebook been able to reconnect with people that I have not heard from or seen in over 30 years whic has been a real blessing to have some adult interaction with my old friends.

But it also makes me sad this weekend as I can not go to the reunion and be with my old friends due to this illness. Instead I will sit back and wait to see the pictures they post online and listen to the conversations about what a great time they all had reminiscing about old times. These are the times when this illness really makes me sad when I can not go and enjoy the simple pleasures of life. Maybe one day…one day that will be true for us all.

To all of you hope you are having a better day…woke up still with headache so I am not going to the dentist , just too much to handle all at one time. I will reschedule for next week.

Timeless,

I know exactly what you mean. I’ve been sick for countless happy events during this illness, and have not been able to attend any. The only thing I did attend was my own wedding almost 2 years ago when this began, and I was sick for that. This illness is cruel. I just hope one day we will be better, and enjoy these events with a brand new appreciation.

Lisa

Me too. I’ve recently missed both my daughter’s graduation and my son’s passing out. They’ve both grown up with me and this illness and are used to an absent mum but that doesn’t take away my heartache at not being able to attend such important events. It’s absolutely crushing.

Brenda

— Begin quote from "Brenda"

Me too. I’ve recently missed both my daughter’s graduation and my son’s passing out. They’ve both grown up with me and this illness and are used to an absent mum but that doesn’t take away my heartache at not being able to attend such important events. It’s absolutely crushing.

Brenda

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Brenda.

I am so thankful that I did not have this when my kids were growing up and involved in all their activities. They both played sports and we traveled all the time with them. Those days I enjoyed so much and I miss them so many days. If only I could turn back the hands of time. I am so sorry you have missed those days with the kids. It is hard for kids to understand sometimes as my Mom was absent for a lot of my kids growing up due to other medical issues and I did not understand …now I do and I would not wish this on anybody.

I feel I was blessed to have had those days with my kids, they are both grown now and it is still hard for them to understand what I deal with each day as everything looks okay on the outside.

Lisa…perhaps one day we can all enjoy better days!

Hi Timeless, yes, it was hard missing out on so much when my kids were younger. I did try very hard to be there on special occasions but sometimes even with the best will in the world, it was just impossible. I tried my best to explain but as you say it was hard for them to understand. But I did love those years when they were younger in spite of all my limitations and we did have some fab times. Hard not to feel guilty as a mum though but the kids seem to have turned out alright despite everything! :smiley:

Brenda

Hi Timeless,
I can totally relate to exactly how you feel. I just got a postcard today from yet another medical school reunion I won’t be attending, dreading another holiday season coming up and all the invitations I will be declining, still unable to return to the profession I so loved, etc. I also am on facebook and find it so difficult to look at all my friends having children (i am 35), getting married, building their careers, going out, having fun, etc. and for the last 2 years I have been a prisoner to this illness… unable to be a part of life and just watching it go by, scared I will never get my chance to be a part of this world and make a fulfilling life for myself…
I hope and pray this changes for all of us.
Warmest,
Lisa

Interesting that you wrote that, Lisa, as I’m always looking at facebook too. It gets me very down. I am going to be honest - I am jealous of others. I am always looking at people’s status updates, and pictures of friend’s travels and other fun events. Maybe I shouldn’t look anymore, but i’m so darn bored and curious. I am envious of people’s lives, but I also get irritated when people complain about something so stupid in their status updates. I find I have no patience whatsoever for people’s general worries about the most trivial things (granted that used to be me).

It’s amazing how Facebook can make one so happy, yet so sad when you are ill. I often look at people’s lives my age thinking they have no idea how lucky they are. Being my age and not being able to drink anymore (I used to be the life of the party) feeling dizzy with a constant need to pee isn’t fun. But let’s keep positive. I didn’t think I would make it around the world backpacking with MAV and IC, but i did it. It’s been tough, but a lot of stuff with this illness is about breakng the avoidance of fear. People who are dizzy always avoid events as they feel they won’t be able to handle it. Understandable. Try to do little events and build up your confidence as once you calm the anxiety…you will be amazed what you can do with this junk.

My next hurdle is relationships and women. MAV destoyed my last one so I get so anxious at the thought of going through it again and explaining all this junk. I don’t know how ill I’m going to be or for how long more, and don’t want to die a reborn virgin so I’m really going to have to address it…one step at a time. That’s just an example. I know it’s all so shitty, but please try not to let MAV totally take all your fun. Even the smallest outing or seeing of friends can make a diffrerence.

Luke

I’m sure living with this illness (although I would gather you were always a nice guy) has made you even more understanding, supportive, a good listener, etc., all qualities that make for a great partner. I gather that you also have a great perspective on what is important in life. You will find a girlfriend who greatly appreciates your strength and all these qualities. And, one day, you will surely get better. I wish you all the best. I can’t even imagine how difficult it is to date with this, but you will and will lead a wonderful life. I just feel it. Now I have to tell myself that I will get better one day.

Hey Luke,

I am with you on this one 100% (but substitute “men” for “women”) :slight_smile: .

My next hurdle is relationships and women.MAV destoyed my last one so i get so anxious at the thought of going through it again and explaining all this junk. I dont know how ill im going to be or for how long more, and dont want to die a reborn virgin so im really going to have to address…one step at a time. Thats just an example. I know its all so shitty, but please try not to let MAV totally take all your fun. Even the smallest outing or seeing of friends can make a diffrerence.

MAV (then undiagonsed) put a lot of stress on my last relationship. It is a lot to ask of a partner and I think a lot of people, no matter how understanding they try to be, really DON’T get it, and think maybe we’re nutty hypochondriacs or something. Let’s face it, most people think migraine is just a nasty headache (despite not having headache as a feature of my migaines, which I have had for 25 years, my family still thinks I have nasty headaches) so the chances of them getting their heads around MAV are slim.

After my relationship broke down last year, I started “dating” (such a quaint term) earlier this year, only to be hit with MAV again. I had to “take a rain cheque” on a date with a guy I’d only just started seeing and of course the MAV lasted months so things with him just went nowhere.

And now I’m a bit scared of “getting out there” but also just a bit over it. It’s all too hard.

Maybe we need to set up a MAV dating site :lol:

Vic

Victoria,

Your last post just made me laugh out loud…to all of you who are still searching for that special someone I wish you all the best at finding that person to share your life with even as “unbalanced” as it may be at times.

And may we all have some better days ahead…I think we have all paid our dues!

sign me up…

let’s call it match.mav… lol :slight_smile:

Victoria,
You are too funny! You totally made my day with that last comment. Thank you for that :smiley:
Sarah

— Begin quote from "MAVNY"

sign me up…

let’s call it match.mav… lol :slight_smile:

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That would be a great name for a site… :smiley:

Victoria

Great chat! You have a pretty good view on things. Having a partner with MAV you may never get out of bed and get motivated, which could be viewed as good or bad !

lve pretty much resigned myself to the fact that i will never be fully normal, periods of remiissioon hopefully like before yes, so i will have to find a girl who likes me for who i am. Its a real pain i cant have a rew vodkas to ease me in, god it used to be easier!

OK guys, so let’s see how quickly we can morph this site into a den of online romance. I want to see all sorts of woeful puns like “So, did the earth move for you too?” “Hey, the earth ALWAYS moves for me baby” etc.

Hey Luke, what do you mean you’ll have to find someone who likes you for who you are??!! Good God man, that’s crazy talk! And OK, so you can’t get your Dutch courage from Vodka but let’s be positive here, 10+mg of Valium should do just as well. :smiley:

Victoria

Your sense of humor makes me smile! Hope you are having a good day!

Timeless

Timeless -

I remember a time when I was suffering so bad from mav and you always reached out to me and lifted my spirits. I remember one particular circumstance…I was invited to my cousin’s wedding and couldn’t go. I was frustrated, sad, upset. I was tired of missing out on special occasions, dinners, hanging out with my friends. I always contribute part of my recovery to you. You made me accept this condition for what it was at that time, give myself credit for trying to do things and not beat myself up when I couldn’t. I am well now. I have felt great for months. Most of my days are 100%. I thank God for that every second of everyday. I pray and wish for the same for all of you on this forum.

Timeless, don’t give up ever. I do believe no matter how long one has suffered with this, there is hope. I never thought I would ever get better. This forum gave me hope and inspiration to actually try things again. You all were here for me when no one else was able to understand, not even my husband.

I know it is frustrating not being able to go the reunion. This time maybe you can’t go, but there will be a time when you will be able to. Stay positive.

I’ll always remember your kindness to me.

You are in my thoughts -

Nance

Nance - so great to read your post, and hear how well you’re doing. It made my day!

— Begin quote from "Dizzyrascal"

Victoria

Great chat! You have a pretty good view on things. Having a partner with MAV you may never get out of bed and get motivated, which could be viewed as good or bad !

lve pretty much resigned myself to the fact that i will never be fully normal, periods of remiissioon hopefully like before yes, so i will have to find a girl who likes me for who i am. Its a real pain i cant have a rew vodkas to ease me in, god it used to be easier!

— End quote

A woman I take care of, has MS and is bedridden. But back in her ‘upright days’, as she so eloquently puts it, she would say, “The more you drink, the straighter I walk.”

Completely useless information for this thread…but your vodka comment brought it to mind and made me smile.

I think I’m going to get myself a t-shirt that says, “I’ve been to rehab and I STILL can’t walk a straight line.”