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Article Very Severe ME: Are Intimate Relationships Possible?

Very Severe ME: Are Intimate Relationships Possible?

On August 8th our ME community honours Severe ME Understanding and Remembrance Day, this year and every year. Rachel M. shares her thoughts on what it's like living with Very Severe ME …

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By Rachel M.​

Hello. I’m Rachel from Queensland, Australia. I live with Very Severe ME. My Very Severe ME is clinically confirmed, according to the Myalgic Encephalomyelitis International Consensus Primer for Medical Practitioners (ICP).

I believe I had Mild ME since childhood, however, the unfortunate misdiagnosis of depression and its treatment triggered it to deteriorate to Very Severe ME rapidly.

As anyone would do in my situation, I have gone through the trauma with the healthcare system and dismissive doctors, and roller coaster rides of the grieving process for the lost life, career, sense of pride, achievements, independence, freedom, dreams, future possibilities, places to belong, marriage, etc., etc.

As I got over the intense grief, my aspiration in life has shifted from success to purpose. My current project is to bring clinical care to people with ME in Australia, starting from Queensland. The project turned from a personal one to an official one when a Not-for-Profit Company was established for the purpose.

Severe ME Understanding and Remembrance Day is this week and I'd like to write about my thoughts and lived experience with Severe ME. With that in mind, I would like to talk about its impact on relationships.

This decision was triggered by a question I recently received.

"Do you think it is possible for people like us to love someone AND have a live-in (or otherwise) relationship with them at the same time, or is it all too much for a person with severe ME and for a healthy person?"

I believe we can love and be loved despite chronic illness and massive limitations caused by it. Love makes us humans and it enriches our souls.

However, I don’t know if we can love intimately. Intimacy involves touching and physical interactions. For a small cohort of people with Extreme Severe ME, an affectionate cuddle could be nothing but torture.

I am one of the very few lucky people who met someone special after the Severe ME onset. Before I met him, I existed in isolation, and I experienced the “crushing loneliness” in my skin. I know the pain it causes to our hearts and soul.

Eventually, I made peace with the reality that I would live in the isolation for the rest of my life. Having no expectation for the relationship probably worked in our favour.

His existence created a place where I belong, and it made all the difference in my life. He filled up my Maslow’s Hierarchy of Needs. That is not a romantic way of explaining the special person in my life, but I believe people who exist in isolation can appreciate the expression.

It wasn’t long before the reality hit. I learnt that I cannot live with a busy person.

While receiving the much-needed care and support, my Very Severe ME couldn’t tolerate the constant sensory stimuli overload, a household with cleaning chemicals, loss of my limited productive hours after midnight that caused me to feel the loss of purpose in my life, etc.

I also realised the unfillable gap between the one who lives with Severe ME and the one who cannot get it. He thought he could help me. But the symptoms/impairments caused by my Very Severe ME were something he never knew existed in his world, and struggled to accept.

We ended up living separately. Our relationship is better this way.

Now, back to the question.

When we are homebound, we don’t have an opportunity to meet people. And if we do meet someone, there is a massive burden to explain our chronic illness and its symptoms, limitations, impairments to the person. Then, there is this anxiety if this person would accept it or judge us.

So, if you meet someone, become good friends, then consider a relationship, I say, “Go for it!”

When you get to the point of considering the relationship, I share my thoughts on what you need to consider.

A relationship needs hard work.

A relationship has difficult moments, even between healthy and able-bodied individuals. We as people with Severe ME need to be mentally prepared for the difficult times and have a willingness to work things out with our future partners.

And be mindful that there are no perfectly healthy people. The average middle-aged person has two chronic illnesses to deal with. Sometimes you need to listen to your partner with empathy. I know you will be good at this since you already know life with health challenges.

Is there love and honesty?

Love and honesty are especially important to keep the relationship meaningful and healthy. In my opinion, honest conversation on the expectation and frequency of physical intimacy is also important.

Be aware of the power imbalance.

The relationship between a healthy/able-bodied person and one with Severe ME has an obvious power imbalance.

Be mindful of the imbalance and check your self-esteem regularly. The relationship must not make you feel you are less than your partner.

Try to avoid turning into a carer and his/her client. The reason why you entered the relationship must be for love. While it is impossible to eliminate this aspect completely, try to figure out how to reduce the carer/client moments as much as possible.

What do you expect from the relationship?

Think about what a romantic relationship is to you. If you are both happy to have the special person in each other’s lives, there are ways to stay together.

What is your ideal quality time together?

You don’t have to live together and share a bed to be in a relationship. With the complex chronic illness, keeping the “normal” relationship is not likely the case. Invent your happy relationship guideline and make it your “normal.”

Have an exit plan and discuss it at the beginning.

When we enter a new relationship, we all want it to be happy and long-lasting. I’m not saying it is not possible, but there is a possibility it won’t last.

Having the mental acknowledgement that there is a possibility of a break-up could take unnecessary pressure off your shoulders.

I had an open discussion with my partner and an agreement when we decided to live together. We acknowledged that there was a possibility that living together may not work. And if that was the case, he would help me find a new place to live and help me settle in there.

When that became the reality, he honoured the promise. Separation was amicable with the acknowledgement of my Very Severe ME and the disability caused by it. And it helped us to keep the continuing special friendship.

There is no regret. I believed in it. I worked on it. I kept my integrity and honesty, and thus my self-esteem. To me, it is always better to give it a go, even when there isn’t a happy ending. It is much better than pondering "What if?" for the rest of my life.

I have friends who have been able to keep long-time relationships with their partners and spouses despite their Severe ME.

I acknowledge some people cannot have an intimate relationship due to their Extreme Severe ME. I wish things were different for them. And I hope there will be an effective treatment for all of us with ME.

Because we are all different, my thoughts and experiences are never intended to be advice. I hope my experience and thoughts help you to make your decision. And if you decide to give it a go, I wish you all the best in your journey.

~ Image by Gabriel Alva from Pixabay
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Thanks folks! And yes, it is hard work to keep a relationship going. Changes are constant and we never settle in one way or the other.

I understand relationships that don't make it, and old habits are very hard to let go of. We started with absolutely nothing except my student debts, so there was only way to keep going. Oddly enough that helped and always gave us something to work towards. It's usually after 5-8 yrs. have passed, that things change again and new understanding have to be made.

At least that's how we've found it....and no, old age is no guarantee that perfection has been reached. Trust me on that. But for one of us to be without the other now is not feasible either.....and so we keep plugging along.

I do wish each of you whatever it is that heart desires. Yours, Lenora.
It can be really hard for men. Men are widely expected to be strong & confident, take the lead, plan and pay in dating and relationships. ME/CFS makes you 'weak' and destroys your ability to provide financially.

I read a true story about an average-looking young deaf woman who didn't work, drive or talk but she used dating apps and was never without male companionship. Can you imagine an average-looking, disabled man who didn't work, drive or talk getting much female attention?
Hi @Sherpa.......I think if you want something you should keep working towards it. Change your picture & your info once in awhile. Surely there's more than one understanding woman out there, I know women.

Yes, you'll be expected to perhaps show up with candy on a first day....but it doesn't have to be Godiva and talking is the mainstay of any relationship, at least one worth having. Sex doesn't have to be included if it's not possible....there are women who want to hold hands, kiss and can't/don't want more than that. Each couple has to work that out for him/herself. That means sharing duties, prepping meals together or agreeing on take-out...you know your limitations and the woman knows hers. We all have different degrees of empathy, don't we?

I can tell you that I wasn't attracted to my husband b/c of his fine wardrobe (he was a student), we never went anywhere except for long walks and evenings spent on my mother's front porch on the swing, so conversation was it. When you have no money, that's what you do. If, however you want someone in your life, someone to cuddle with at night and have relatives....these are the things you do, but you have to be honest. Are you capable of that? Tell the other person right upfront. If both of you have spent too much of your lives alone, it will be that much harder (at least I see that with people). Some people aren't ready to let go of past lives/dreams. Think long and hard about what you want, what you expect of the other party and what you expect of life. Be prepared for disagreements, but don't hold grudges, and find someone who believes you have an illness but still want to share in a life.

It can be done, but takes work upfront and on through the relationship. Tell the woman you simply can't carry the romantic relationship alone. You may be pleasantly surprised. Yours, Lenora.

P.S. My computer gave up, my first use of Chrome, so this may not be the best.
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Can you imagine an average-looking, disabled man who didn't work, drive or talk getting much female attention?
Women might be a lot more understanding, accepting, and compassionate than you believe. Maybe just avoid high-powered, type-A personalities. Yes, I can imagine an average-looking, disabled man getting plenty of female attention. Admittedly, this disease has changed my perspective, so I may be projecting. But I believe women in general are understanding of those things.
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I have a kiwi friend with reasonably severe ME who had to do the same thing. It was too much. I'm someone with mild ME and yet it takes it out of me too. I can see why it would become impossible based on my friends recollections. This disease takes everything from us. Well almost everything. So sorry you experienced this. But as you said better to give it a go.
This is why I've abandoned the idea of relationships in the past year or so. I have nothing left for it, and as you said, it takes everything out of us. Even the emotional aspect, whether positive or negative emotions, it's too overwhelming. I can possibly (maybe?) see being in a relationship with another person with severe ME, but it probably would have had to emerge when we were still moderate. I don't know how severe pwME could possibly initiate relationships, but hey, there's always remission to hope for, yay!
Severe ME would make a relationship difficult, no question of that one.

But for those in the medium + (and you may get there, don't give up hope), have coffee earlier in the day. Nothing fancy, it sets the tone for a lower-keyed relationship. Perhaps the person coming could bring the coffee with him/her. You're bound to have a bad of cookies around. That's all it takes.

If nothing else it's a chance for friendship and who knows where that can lead? If it brings someone else into your life, someone with a different life history, why not? We aren't just an illness. Yours, Lenora.
It can be really hard for men. Men are widely expected to be strong & confident, take the lead, plan and pay in dating and relationships. ME/CFS makes you 'weak' and destroys your ability to provide financially.

I read a true story about an average-looking young deaf woman who didn't work, drive or talk but she used dating apps and was never without male companionship. Can you imagine an average-looking, disabled man who didn't work, drive or talk getting much female attention?

You beat me to it.

While there may be very compassionate women out there, they may live far away. That said, I am not bedbound, at 40 prercent or so, but at my age, most non-ME women will have adult children and grandchildren, which I couldn't really understand. I had a fiancé' when I got hit with ME at almost 40. Of course, she left me as I was bedbound for almost a year. I don't hold that against her at all.

I knew nothing about CFS/ME when I contracted it either. We spoke on the cell phone for about two years, before her new husband put an end to that. I was fortunate that after a year
I was able to go back to work for 18 years, but the ME returned much harder as I aged, and I had to quit working, which I miss.

How many women would understand that I crashed on weekends, so I could go back to work the following week, not being able to do much but rest up? My guess is no too many women would.understand that, unless they too had a disability as well. Thankfully, I won't have many years left on this world, as I'm already having heart issues, so the loneliness will be over with. soon.
As we age loneliness is an expected part of life. I know a few women, widows, whose husband have been gone for a long time, and yet they still like talking to males, and going out for lunch or dinner. Lunch would be just fine for you @Rvanson. Most aren't looking for romantic entanglements, but loneliness is a pretty big part of their lives also.

Some people are much better at being alone, but if you want to be with a member of the opposite sex it's quite acceptable to make your wants and needs known upfront. You may be surprised. At the very least, it's someone else in your life, and if you don't feel uncomfortable with them, make it known. After all, it works both ways.

I agree that I don't think I'd really want to get entangled with someone with troublesome grown children. But then again, that's not for me to say until I understand the relationship. I know I wouldn't want an adverse one as my own daughters wouldn't behave that way....and knowing grown grandchildren, you don't see that much of them anyway.

It all depends upon one's age....some would happily accept younger children into a relationship and the adverse relationship (if there is one) would be between the parents. But once you're older, so many things can be thrown to the winds. There are plenty of differences between the sexes and online dating services make them so much easier. Hey, whatever works......! I'm more of the type that's OK with being alone, but not all people fall into that category and I have a long and happy marriage and don't ever expect to replicate it. But if you're younger, why not? Yours, Lenora

Both of my grandmother's spent many years without a husband, so I can understand loneliness from a woman's perspective, to a certain extent, being a man. My grandmothers were both old-school Roman-Catholics, and once a husband died, according to the church, they were not to marry another man.

My paternal grandfather died in an accident at work in his mid-50's, and my grandmother lived another 29 years as a widow. My maternal grandmother lost my grandpa at 78, due to natural causes and lived 25 years as a widow until she passed away. I 100% disagree with the Catholic Church about this matter. I can suffer being alone, but it's not much fun, that's for darn sure.

I know that ME/CFS has most certainly reduced my life-span, so I'll not have all that long to go until I will be with the Lord, for which I am very thankful. I am also glad to hear that you have a long-time successful marriage.
Hi @Rvanson & @Insomniac.....You both have a point. @Insomnia, yes I expect that middle age would bring different things, although I think that men as well as women would enjoy a chat. It's then a matter of finding the right sort of person.

@Rvanson....funny about your grandmothers. My father died at 40 and my mother was a widow for probably 42 years or more. Of course who wants to compete with 9 children? Generally someone of a not so nice character...and I think that worried my mother, so a man was out. Kind of funny b/c she was surrounded by widowers who would do a lot for her, but she never even once invited them into our home. I don't know why....we knew them all well, and it just wasn't like her to treat people that way. Perhaps she didn't want any romantic entanglements at all....and there's only one sure way for that. Besides, she was a difficult woman, and who knows what their story was.

So she never remarried in all those years....since the youngest was only 2 when my father died, she had plenty to do for a number of years. I was the oldest and I don't know how any of us did it. Tough going....money was always a problem and we learned to work hard from an early age. For the older ones, it was good....the younger ones had a different story as these things go. She tried hard, but was also mentally ill and it took a lot of effort to make a go of everything. So, just when you think life can't get harder....there it is!

I've been fortunate in a long, happy & yes, fractious marriage (which often goes along with love). But even that takes a lot of work and marriage is truly a full-time job, which doesn't mean that strong love doesn't exist. We're not shrinking violets....which is fine for us but perhaps not for others. No drinking or anything like that involved, thank-goodness. Yours, Lenora.
It occurred to me after such a long marriage, that there are many, many stages of marriage. Seldom is it static and if you want that, then no children is probably the easiest route to take.

The first few years are a glow.....really two people who have similar interests can get along and enjoy being together. After that, life starts to just get in the way.

Jobs, children, housing, career choices....these are some of the things that take us into what appear to be the boring years of marriage. Personally I found that we were both very busy with our lives during the day and moving to a new city, making new friends (& lives) as well as raising children took importance.

Funny, when children are small you think you'll be in the role of parent forever. Suddenly they're gone although we do have good relations with our daughters (not always, of course) and hear/see them as much as possible.

Life changes rapidly from the time of their marriages (about 30 in both cases) and grandchildren who are now in university are a blur. Suddenly we go from middle age to old...and everyone I know who is in this stage feels the same way...it was sudden.

Things that always occurred in life rapidly speed up....people leave us one way or another, death is common and if we're smart, we're just exceptionally grateful for what we do have. In many ways I feel more settled than at any other period in my life. As far as marriage goes, so much of it comes down to luck...it really does. No one can say if the person you married when you were young will be the same as the person you're with in your older years. Changes in society have generally allowed for so many more choices.

Along with love, yes our marriage has been fractious....but that's because although we're kind and treat each other well, we're free to talk openly to each other. Older age brings irritations (Rod is 77); expect them. It also confers continued love and kindness, looking at the past and the future, our children, their children and marveling that we've had so many years together. Friends are precious and each day is a new challenge as well as a new chance. We live....we hope, we do the things we've always done. It's just that now we've grown up as well as older.

We've been together through a lot, seem to have met just yesterday (yes, it really does feel that way most of the time) and we know we're fortunate. We know too many who aren't for it to run the other way. Like life itself, there are a lot of ups and downs in a marriage...count on it. Also, think about it but don't waste years overthinking it if your goal is to have a family. No one can guarantee anything...and aren't we just proof of that meaning? Other generations had wars, disease, Depression, and the things we worry about today. Unless you're truly a seer, you won't know the answers to so many of these things...we live and we hope and we try to be as happy as possible. The latter isn't always possible, of course, but generally we have the basics of life and try to ensure that others do also.

I need plenty of laughter in my life, Rod not as much. His life is one of numbers....mine is the wider world. Our children have benefited from both. Could we have been happy without children? Yes, I believe so...you make of life what it gives you. It may seem impossible at first, but we have to accept that outlook in order to go forward. There is no one right or perfect way....after all, we're just people. Some are soft, some prickles...we're different but yet the same. Accept that and life is easier. At least that's what I've found. I'm simply thankful and I hope you are too. Wishing everyone well as you follow your way. Always be hopeful...and smile a lot! Yours, Lenora.
It is possible for a woman to have a boyfriend, her being saddled with ME, but not so for a man.

You will be kicked to the curb if you try to have a girlfriend who is “normal”. It won’t work.

Get used to being alone and lonely, if you are a man. You'll never find a relationship with a woman, unless she too has an incurable disease, that sends blokes packing away fast.

That's just the way the cards fell. I had a fiancé when I became ill with ME; she took off fast when that occurred. I cannot wait to be gone from this awful earth and meet my maker.
Hi @Rvanson..The best answer I can give to the above is this: When you're young you simply (or won't) think about age as a passing number. What's common for someone at 20 definitely changes over the years. By your mid 70's and older. life is a different story all together.

Lunches are more apt to occur than dinners and even healthy people suffer this problem. TV is more of a companion than it was in our youth...we didn't even get a colored TV set until our children were in their teens. Does that make us better or worse than others? Of course not. It's just that in our case jobs, children and so many other things took precedence.

In our later years, it's wonderful to have TV in the evening and if one is ill, I imagine it's a great companion all of the time....just like music, or something that has sound. Just don't watch the news too often if you hope to be happier. I couldn't even tell you what's on daytime TV, although I gather cooking shows are and a lot of people are happily entertained by them. Go for it.

In the evening, we're in our bed early, mainly b/c I can't take activity after 4:00 p.m. No phone calls (at least for me), no computers....that's time for watching the news, finding something interesting on Netflix & Co., and then reading. Both of us are readers, although I tend to have 4 hrs. or more/day. I often do much of it during my nights of insomnia....books are very important to me. We learn to temper ourselves with what our bodies are capable of.

Your life didn't have to stop when your girlfriend left. When you marry, you have to think about maturity...it's needed in so many aspects of married life, not just old age. There's never enough money it seems, a lot of responsibilities, unemployment....you need maturity for all of these plus so many other matters.

I did make certain that I married a man as opposed to a boy. (Even though we were both very young.) We had the same goals in mind, knew we wanted children but were willing to wait and if it didn't happen, we would have adjusted....somehow. Life is not a fairytale and that really plays out as we older.

Rod will be 78 this year and is actually beginning to have chronic health woes for the first time in his life, apart from two cardiac arrests on the same day about 20 years ago. We mean so much to each other and yes, he is a wonderful man. A man who also argues (& I'm no shrinking violet, so arguing does occur), friends move on to either nursing homes or death and once again we're with the person we married....except that change is and has to be inevitable.

It's odd that both of us spent the night before our wedding worrying if it was the right thing or not....the first year was difficult as we each set up our territories. Although there was much, much happiness we also did have to go through a stage of settling in and respecting each other. You didn't go crying to your parents with your problems, but actually talked to each other.

No, we never expected ME....who does? The fact is that bad things happen that takes time to adjust to, but then maturity helps once again. Perhaps at this point, instead of the girl you fell in love with you need a person who is more of a companion. There is great comfort in that also....and love. It can even be someone with the same illness. Personally, I have to find some joy in each day, even if it's finding a comfy position in bed...something that makes me happy. Numbers are Rod's great friend....he's talented but is the last person in the world to be a braggart. Again, maturity.

You have gorgeous nature all around you....I hope you can find some enjoyment in it. Foods that you like - and no, you don't have to go to a restaurant, in your bed or at your table is just fine, Looking out at the stars at night...the things you have available to you are perhaps different than what's available to someone else.

At the moment, I'm recovering from 5 different fractures caused by a fall. This is separate from ME, but definitely not unusual for my age. I try to give our girls strong ways to look at life...don't be a victim, try your hardest and, as I'm a great believer in it, laugh as much as possible. Think of others in their particular world and circumstances and don't ever be selfish. Kindness is the kindest thing you can teach your children. Keep your friends, don't overspend, think about what you really believe in. Perhaps you wouldn't have lasted for the long haul even if ME hadn't appeared. I'm sure that has occurred to you. You're aren't just an illness b/c there are plenty of people with all sorts of illnesses around. And yes, of course it's very hard to let go...but there's also a certain freedom in doing so.

I don't know how ill you are, but if it's something that doesn't have you bedridden entirely you can live your childhood again - go to Little League Games, any game that attracted you. That's one of the nice things about being a parent, you're seeing the world through the eyes of a child again. Watching children at play (although they're more attached to electronics today), just be careful of being perceived the wrong way...it's something we all have to do. Buy Girl Scout cookies....be a 3rd or 4th grader again. Go to the zoo....enjoy what life has to offer and then offers it to us again. It's not too late. Yours, Lenora.
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It is possible for a woman to have a boyfriend, her being saddled with ME, but not so for a man.

You will be kicked to the curb if you try to have a girlfriend who is “normal”. It won’t work.

Get used to being alone and lonely, if you are a man. You'll never find a relationship with a woman, unless she too has an incurable disease, that sends blokes packing away fast.

That's just the way the cards fell. I had a fiancé when I became ill with ME; she took off fast when that occurred. I cannot wait to be gone from this awful earth and meet my maker.
I‘m sorry to hear what you have been gone through and I unterstand your frustration.
But i don‘t agree with your statement, in fact i know its not true. I am the healthy part in such a relationship and i know i‘m not the only one.
I don‘t think its easier for a woman with Me/Cfs to find a healthy boyfriend, i think its rather the other way around (because women are often used to take care of someone).
But no matter if you are a man or a woman, nobody should loose hope, it‘s possible, i know it! :)
Hello @Rvanson...I understand your feelings and frustration, but also acknowledge what @Push Fwd is trying to say. Nothing is going to happen the second you expect it to, perhaps it will take another 2 yrs. to find the right person.

As we get older (and I do know what I'm talking about) our expectations of a relationship change, for both women and men. It's not the dream we once had in our 20's, 30's or even beyond. Companionship takes a larger role and love changes again.

I know that my friends who are widows have children who are happy to have people who make their parents less lonely. If they're taking advantage of the parent (money, for e.g.) then that's a different story. However, someone who is a companion, lover...whatever the new couple hopes to be, is targeting people before they're even given a chance. Get to know them before making a decision. I do know, again in the situations I'm close to, that while the parent is irreplaceable, there is still plenty of caring for the newcomer if he/she is a decent human being looking for the same things as the remaining parent. Personally, I don't even ask about how far the relationship has been taken unless even my friend wants to share it with me. Yes, a child does have to make certain the parent isn't being taken advantage of, so please accept that and try to befriend them. You may find that you even like the family.

Adult children, especially after they're say 25, have a point when they say, "It's not your business." However, that runs both ways when the parent is a widow or widower. State your concerns and then leave it up to the parent (in this case). Love doesn't begin with sex...it's caring and showing it, conversations that cover both parties, likes/dislikes, even politics (if that's a problem, then understand that all conversations or anything concerning it has to be off the table. I have this relationship with my one remaining sibling). A relationship is generally based on a give/take thing....it's very seldom perfect. Both parties should always take their partners wishes into consideration. From this understanding we can then move into other areas....it generally builds slowly although in the beginning it may seem to be very fast moving.

A smart widow or widower would have seen a lawyer long before they began dating again. All along the way in life, really. Certain matters have to be decided and acted upon....and then there is paperwork that proves it all. If a parent is abused, then that's totally different, but we're not talking about that at this time.

For the most part, life is simply not perfect although some people do have more than their share of problems. Join a church group....you'll probably find more decent people there than you would in a bar. Although I'm not a member of a group myself, so don't know if it's true or not....but doesn't it seem logical?
Also, if you're looking for the girl or boy you once knew, look in the mirror, see how you've changed and adjust your expectations of what you're looking for. It may help.

Don't give up on finding someone....but first you also have to put yourself "out there" if you want to meet someone. It can even be online. We can't control everything and there's no point in trying. Yours, Lenora.
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