Dating for the first time after two divorces and a live-in relationship….

Life is weird sometimes. My dating history is somewhat unusual. I’ve been married and divorced twice and had one live-together relationship. Yes, somehow along the way I never really dated.

My first marriage we dated once as a couple, got engaged, delayed the wedding after his mother had a stroke and all dates after that were with a group of friends. That continued after we were married.

I did a little better with husband number two but seeing as we were dating across the Atlantic we were either living together or hundreds of miles apart. We did manage a few more dates on our own but this time we tended to have his youngest son with us and his cousins or friends.

By the time we get to the living-together relationship I had a teen daughter and he had a teen son. So once again we rarely had time to date unless the kids were both engaged with cadet activities but as we met because my ex was a cadet officer he was often needed there too.

In between long term relationships I’ve had a half dozen other dates. However, either we never got past a first date due to lack of interest on both sides or the guy proposed!

So here I am single again at 45. Single for a good two years so have worked through the majority of the issues gained coming out of another relationship that I thought was for life, and was apparently not. Alcohol being his true life partner, not me.

I have to learn to date! Thankfully my students have educated me over the years so that I know things like “Netflix & Chill” really means hook-up for sex. However, some of the other ‘knowns’ are very hard to work out, especially if you’re pretty naive as it turns out that I am.

Then there are the dating books on rules, no rules and men and women are aliens to each other! Basically what I’m realising is that I have to trust my gut. The problem with that is that I am an analyst, a researcher by nature so I tend to over think things. I’ve ignored my gut in the past to my extreme cost. So now I have to find the balance between listening to it and making sure that I’m not over reacting.

Now add in the complicating factor of my extreme allergies, intolerance to scents and try and work out just how you date anybody even if you give in and join the online dating sites as a way of finding somebody.

Just how do you explain that we can’t even meet for coffee because all the coffee places in town have fresh fruit smoothies on the premises (which I’m allergic to), that they can’t have touched citrus let alone eaten it recently, and must be wearing no scents. That even then, I may have to leave abruptly. Oh, and I work a service dog because I’m deaf and I tend towards fragile fractures.

So I’m going to throw it out there… all advice welcomed. Please tell me about your experiences dating as an adult with chronic disease and conditions….

 

There needs to be a support group for those who have suffered near fatal anaphylaxis and their loved ones…

The following story is a mother’s experience of her child’s anaphylaxis. It’s one of the best descriptions I have ever read of what it’s actually like and also, how poorly it is understood by so many doctors. Like this mother, in the past, I have delayed giving myself an Epi Pen injection because I was told off by a doctor for using it too frequently or without waiting for ‘enough’ symptoms to present.

As an adult survivor of near fatal anaphylaxis I can add that it’s very surreal to be literally dead one moment and then sent home within hours and expected to get on with life and return to work as so nothing happened.

In this case the child really wasn’t aware of much of their experience; as an adult while you don’t necessarily remember the details, or may have been unconscious or literally dead for some of it, you do know the reality of how serious this is.

The fear that this induces in your life is like being constantly stalked. You literally never know when you will be subjected to an exposure. My most severe food allergy is to citrus but I’m also very allergic to latex. My most serious reactions have all taken place in hospitals or doctor’s waiting rooms. To be blunt, I’m pretty sure that if they had happened anywhere else I would not be here today.

I literally take my life in my hands anytime I go outside of my own home. My home is a safety zone. Workmen, and even friends, are not allowed in my home unless they guarantee not to have had citrus in the last 24 hours and to be scent free.

In the past four months I have had two near fatal anaphylaxis reactions. The first resulted in my developing Reactive Airways Dysfunction Syndrome (RADS). RADS looks a lot like asthma and is very poorly understood. In fact, it is exactly what it sounds like. My airways react to pretty much anything seemingly randomly.

Environments in which I used to be safe, such as outdoors, are no longer safe for me. Worse still, sometimes RADS acts like asthma and sometimes it triggers allergic responses; even anaphylaxis.

The only treatment is high dose Vitamin D, rest and avoidance of scents, known allergens and exposure to anything that might have become an issue. With luck and time the hyper sensitivity will reduce and my world will expand beyond the four walls of my home and medical facilities.

In the meantime, I’m left with the question of how do you mourn yourself? I didn’t die, yet life as I knew it did.

While always cautious I will never again feel truly safe anywhere outside of my home. Even now, when I manage to run the occasional errand I have to pick and choose which store to go to. I love M&M Meatshops right now as I can order online, have their staff pack my order up for me and agree a time for pick-up. Then all I have to do is turn up, pay and leave. Additionally, the store nearest to me is in a strip mall so I don’t have to risk exposure to all the other people and scents I’d come across in a mall.

I go across town to the post office that is in a different strip mall because the one closest to me is in Canadian Tire. Far too great a risk for me. All those hand cleaners they use in the car maintenance facility attached to the store are orange based. Deathly to me.

At some point we will get to the bottom of my extreme breathing issues and hopefully get it dealt with. With luck my RADS will be better controlled, if not healed by then too (RADS can last 6-24 months or become permanent), and I’ll return to ‘normal’ life.

What that ‘normal’ looks like though is going to be very different from what it was before this.

As for that Epi pen… The best advice I have been given and has kept me alive now on several occasions: If in doubt Epi!

Don’t wait for the hives and itchiness etc. The scary part though is that the reason I was given that advice is what the doctor explained to me about extreme anaphylaxis.

When it happens fast you may not ever experience the hives, itchiness etc. because your body doesn’t waste time sending warnings to the surface it uses everything it has to protect your brain.

So for those of us with serious, fast anaphylaxis don’t assume that no hives means no problem. It can actually mean that the reaction is far more extreme. So if you even think that you have been exposed to a known allergen Epi! Yes, adrenaline is a potent drug and shouldn’t be used without caution. However, I’d prefer to use it and not have needed it than to be dead because I waited.

My current problem is that with the RADS I don’t know what my allergens are anymore. Last week I ate a meal, that I had prepared at home from products I have bought and prepared the same way hundreds of times before. Yet, I reacted to it. I still don’t know what I reacted to in that meal.

My latex allergy is worsening and, like many latex allergic people, this means that I have issues with adhesives often too. So now we have the  problem that while I can cope with heart monitor patches when I’m non-reactive when I’m in the middle of an allergic reaction I break out in hives to the adhesive used on the monitor patches.

It’s a catch 22. Unlike many anaphylactic patients whose blood pressure and heart rate decreases in anaphylaxis mine increase placing me at very high risk of stroke. So emergency care must monitor my heart. So we have to balance using the patches to monitor my heart while treating the allergic reaction, knowing that we’re actually continuing exposure to an allergen by using those patches. We have yet to find a solution to that problem.

There has been some great success stories in the US with desensitization to food allergies (the top 8) with the use of OIT. OIT doesn’t cure the allergy but does make it safe for the person with the allergy to be exposed to it as long as they maintain the treatment for the rest of their life.

Unfortunately for me, my allergy to citrus is airborne. As yet the only known way of managing airborne allergies is the use of masks.  There is no effective treatment for airborne allergies. However, citrus molecules are so miniscule that even very high quality masks don’t filter them out. I’m not quite ready to live in a bubble so I’ll continue to live as so I’m being stalked all the time.

Like this mother did with her child, I will learn to mourn myself as the person that didn’t die and I will continue to embrace life.

All I ask is that when somebody tells you that they are anaphylactic to something please don’t joke; please take them seriously.

My life literally depends on whether or not you are truthful about having had citrus recently. Or whether you are using latex gloves or not. Think about it. The most likely reason that I had a reaction to that meal that I had had many times before is that at some stage in the preparation before I bought the ingredients, somebody prepared that food using latex gloves or cross contaminated it with citrus by not washing their hands between dealing with different products.

Anaphylaxis is life threatening and those of us that have suffered near fatal incidents need support not jokes. The latest Human Rights Policy update in Ontario actually states that anaphylaxis is now included as a disability that must be accommodated, just like any other disability. Hopefully, that will allow us to insist on more scent free environments in public places making the world a safer place for many.

Mourning a Child That Didn’t Die: Our Anaphylaxis Story

You can’t be sick because….

One of the hardest things to manage when you’re chronically ill, and long-term sick, is the feelings of guilt when ‘caught’ doing something that society doesn’t expect of you in your current situation.

Early on in my current situation, I was sat in my pharmacy waiting for prescriptions to be filled when I saw somebody that I knew who knew that I was housebound.

Now they didn’t say anything, but regardless I felt judged. Here I was out and about in society when they’re aware that I’ve refused to attend meetings due to being housebound.

The problem in my mind was that I was sat down, and had been for a short while, and while I had difficulties speaking and breathing just saying hello wouldn’t make that obvious.

Ironically, after they left and I stood up to pick up my prescriptions the pharmacist was so concerned with my breathing that they escorted me to my car, made sure that I was safe to drive and made arrangements for my future medications to be delivered to my home rather than for me to need to pick them up.

I still felt judged.

Since then, I have been out less than half-a-dozen times that weren’t for medical appointments. Usually, very early morning or late at night when either the grocery store is very quiet or everywhere is shut so that I can get cash from an ATM without having to deal with people and the scents that they carry on them.

Despite simply trying to attempt an errand that is totally normal I feel guilty about doing so. That being sick, I should be at home 100% of the time. I shouldn’t be seen in public as it gives the wrong impression.

As the new semester starts, and my classes start without me this is going to be worse. I live in a small town and the chances are that I will run into students who should have me as their Prof. I have to recognise though that I am the one assuming the judgment.

It may, or may not be, true that people are judging me. However, I can’t change what people think. Neither do I need to provide intimate medical information, which is my instinctive reaction, to try to explain my situation!

Ironically, having such extreme breathing difficulties and steroid issues is making my disabilities and illness visible. Which helps a little. It only takes a few words for people to realise that I am having a serious problem. Anybody who actually knows me is pretty shocked by how I look too, between steroid bloat and either being white or white tinged with blue… I don’t look so great.

I”m not the only person who feels this way.

Denise Reich writes about spending a sedentary day at a theme park and a family friend being furious with her for doing so when she’s sick, assuming that she must be a fraud.

She makes another valid point: when she was sick as a child she was strongly encouraged to try to have fun still. It wasn’t that she wasn’t still sick but that society understands that children need to have balance and do what they can.

Yet somehow, once we become adults it seems to change.

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Perhaps it’s the thought that your tax dollars are paying me to stay home sick. Actually, the reality is that the amount of tax that I have personally paid would cover my own sickness income from the government hundreds of times over for many years, not just the 15 weeks allowed in Ontario on Employment Insurance for sickness.

Beyond that, if I do need to go on long-term disability in the months to come, I have paid my own insurance to cover that either directly or through my employment. So in no way am I using ‘your’ tax dollars to support myself in my sickness and disability.

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In this next week are two local events that I would normally be attending without a second thought:

On Thursday there is a fundraiser for the local 2310 Army Cadet Corps and the Algoma Autism Foundation. It is a comedy night, Yuk Yuks. at a local restaurant with a meal provided. Most of the local restaurants have always been exceptional about accommodating my allergies at such events and in the past, this would likely have been safe for me to attend.

On Saturday, one of my favourite country artists, Dolly Parton, is performing at our local arena. I saw Dolly live years ago, in England, and know that she puts on an incredible show.

Right now I’m certainly not well enough to attend either. However, even if I was feeling a great deal better and the risk of allergens low enough that I was prepared to try it I probably wouldn’t attend either event because I know that I’d see people there who know that I’m signed off work sick. I’d feel judged for being out and doing something fun!

In a couple of weeks time, the Sylvan Circle will be on. This is a local drive-yourself tour of art and artisans set up in community halls and artist’s workshops in a loose circle. I haven’t missed more than one since I moved to this community in 2010. It’s often where I get my Christmas shopping done. This year I can’t attend. I don’t have the energy to drive to the nearest starting point (about 45 minutes away) let alone to manage the constant getting in and out of my car, driving in between and the potential for exposures in each place.

However, once again if I was feeling better and able to even just visit one or two of the stops on the route, that don’t have food and would be a lower risk I don’t feel that I can anyway. Again, I know that I’d run into people who I know and all they’d see if my being out and about. They don’t see the two days of complete exhaustion that would follow. The week or two of recovery that I’d lose. I wouldn’t gain from the luxury of being out and doing something fun as a consequence.

I know that a lot of this is my own perceptive of other people. However, experience over the years has demonstrated to me that I’m not far wrong. People do judge you when they see you out when you’re off work sick.

People make assumptions too. They assume that because you’re seen in one place, at a specific time, that you can do other things too.

If I can do my grocery shopping then I must be able to pick up my own prescriptions! The two are completely different. As mentioned, before I can control when I do my grocery shopping. If I go at 7am the store is quiet, there are very few people, the risk of allergens is lower and if I can’t manage it I can just leave.

To even get to my pharmacist I have to get through the gauntlet of perfume and makeup scents that are always at the entrance and near the door! The pharmacy is always located at the back of the store! Previously I’d use the drive-through to manage this but right now I can’t speak well enough to be heard on their intercom system.  Thankfully my pharmacy is helping me and delivering my medicines to my home.

So a trip to the grocery store and to the pharmacist are like night and day for me right now. They’re not the same but to anybody looking on they don’t see that.

They also don’t see the fact that I am limited to one-two medical appointments a week because I need 2 days to recover after each. I’m still exhausted after the sleep study on Saturday night and it’s now Monday afternoon. I have done nothing since I got home early Sunday morning except rest.

Regardless, I have to learn to do what I need to do and that will mean, when I feel well enough, that I will be out more in the community and that I hope to be able to do some fun things too.

Recovering from this kind of illness isn’t something that is going to happen overnight. It’s not like I will wake up one morning and suddenly have my old life back. Working out what my life now looks like will be trial and error.

I may never be able to do some things again because the risks will be too high. Others, I might with precautions. Some may be just fine.

Only time will tell. In the meantime, I need to work on ignoring the guilt that I bring on myself and accept that other will judge and that that is not my problem. It’s theirs.

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So my plea is this: If you see somebody out and about that you know to be off work sick, or long-term sick or disabled, or they post online, that they attended something for fun please don’t judge them.

Be thankful that they felt well enough that day, at that time, to try to get their life back to something approaching normalcy!

Is entitlement due to decreased discipline?

Over the past few years, there has slowly been an increasing awareness of  a pervading sense of entitlement in the millennial generation and younger. Our increased emphasis on children’s rights seems to have bred a generation that assumes that their rights are more important than anything and anybody else.

However, they don’t seem to understand just what those rights are.

This video that has been doing the rounds speaks to this issue perfectly.

The child concerned had been educated in their “rights” by their peers at school. There was no thought that their own behaviour was not appropriate. That their mother has rights too; one of which is to use appropriate physical discipline with their child.

The part that I really like about this video is that the policeman supports the mother.

In reality, this rarely seems to be the case.

Too often, the mother would have been reamed out by the police in front of the child, totally undermining her authority as a parent. It’s more likely that child services would have been called in and the parent required to undergo invasive interviews, parent classes and extended monitoring and random checks for a prolonged period of time.

You think that I’m exaggerating?

A friend of mine has a teenage son who seriously violated her rules and expectations of his behaviour. As a consequence, she confiscated his video game machine for a set period of time. A consequence that the pair had agreed beforehand for such infractions. Regardless, the teen was angry and called the police to report the game machine as stolen. The police came and insisted that the mother did not have the right to confiscate the machine as she had given it to him as a gift, for the previous Christmas. They made her give it back to him.

She no longer had any authority in her home. She had no way left to discipline. How do you send a teenager that’s bigger than you to his room when he refuses to go? How do you ground him when he can just walk out the door?

Why is it OK for children to hit and push their parents but as soon as the parent touches a child in any way it’s called abuse?

Another situation that I know of – a female child, physically much stronger but a pre-teen at the time attempted to push their mother down a flight of stairs. The mother trained in mental health and as a children’s youth worker placed the child in a controlled hold until the child calmed down. After which they calmly talked through what had happened and worked through what had caused the child to be violent, to begin with. A few days later child services were at the home because the child had reported the mother. The mother was found at fault for using physical force to control the child. When she asked what else she was meant to have done, she was informed that she should never have allowed the child to get violent, to begin with. This child had gone from zero to a hundred in a split second and the mother had seriously feared for her own safety. Regardless, she was at fault. The mother was black and blue from the child’s assault on her and the child was completely unharmed.

I know of many other situations with children who are physically abusive to their parents safe in the knowledge that if the parent even simply restrains them that they can call ‘abuse’ on them. As a result, many parents have become “hands off” to the extent that they literally no longer engage in their children’s lives.

They don’t touch them – they don’t engage at all.

The child doesn’t feel like going to school, they leave them home in bed.

The child doesn’t want to go to bed at night, fine.

They let them come and go as they please.

They don’t want to dress appropriately, not only do they allow them to dress inappropriately they pay for the clothes for them to do so.

I totally agree that children have a right to live a life free of abuse, safe and cared for.

However, their parents have rights too. They have the rights to parent, to discipline, to consequence, to teach. They have the right to be treated humanely themselves and to not live in fear of either their child or what could happen to them if their child makes false accusations. It’s incredibly difficult to prove a negative.

So as parents no longer have any rights. They can’t discipline or consequence their child without living in fear we are raising a generation with a huge sense of entitlement.

Which, perhaps would be alright if that generation was healthy and productive. However, all the evidence is that what we’re getting is a generation with increased anxiety and depression and a decreased work ethic.

Today’s teenagers are far more likely to have mental health issues than they were in the past, and much less likely to be working. 

As a result, more and more teens are forming a generation that will never work. They are refusing to attend school, they become disabled with mental health issues and are on disability before, and often without, graduating high school. They feel entitled to living a life where their parents, and the tax payers, are to pay for everything for them. They then have the audacity to complain. They expect to have the latest cell phone, the latest technology, extensive holidays, costly medications, therapy and incredibly expensive service dogs just because they exist.

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They don’t feel the need to do the best that they can, to find anyway to work, to give back to society. Even to volunteer. To help at home.

Now I’m quite sure that some of these teens do genuinely have a mental health concern. However, I also feel that many of them really just need discipline, routine, structure and expectations of them for their behaviour. That even those with valid mental health concerns would do better with such a lifestyle.

Think about it. If you are committed to a mental health institution how do they take care of you? Strict routine, structure, consequences, discipline and expectations of your behaviour.

Isn’t it interesting how much better people, of all ages, do in such settings?

So the next time you come across this sense of entitlement think about what you’re doing in your own home, life and family to prevent it. What are you doing to teach others that everybody has rights, not just those who can cry the loudest and get the attention or can make the most threats?

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It’s time to rethink discipline. I don’t personally think that the belt would be appropriate and I don’t think that a child should be spanked in anger. However, I do feel that children know the difference between a swat on the butt as a consequence for lying and punching somebody in anger.

Yes, there are lots of other consequences and disciplines that can, and should be used as alternatives to spanking. However, I also know that for some children nothing else is effective and that for others, some of those socially acceptable disciplines are far more damaging than that swat would ever have been.

It’s time to rethink parental authority and to give parents back their rights for respect in their own home.

Children’s rights should not be at the expense of others. Children’s rights are meant to be about protecting them from abuse not about removing all authority and respect from parents. Regardless, that is what we have achieved.

When will we remember that all humans have rights, regardless of their age?

That nobody, should live in fear?

It’s time to rethink how we empower children without undermining the good parents, who simply want to teach their child to be a productive, healthy member of society.

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Adult children of yesterday

As a long term country music fan I was excited to see an announcement earlier this week about a ‘Calming room’ being provided at Dollywood. The room has been designed to provide a space for children with sensory issues, such as autism; a safe space for them to decompress and take some time away from the vibrant overload of the theme park itself.

Dollywood is stated as being the first theme park to provide such a facility, but others are now being developed too. Legoland Florida being the next to announce that they are developing calming rooms as well.

Cineplex have been providing sensory friendly screenings of children’s movies for a while now. They leave the lights up and turn the volume down.

Shopping Malls have started to provide specific times for children with special needs to meet Santa, or the Easter Bunny.

All of this is fantastic, and a blessing, for parents that just want to give their children with special needs a somewhat normal childhood.

The question that remains for me though is this: “What happens to supporting these special needs kids when they grow up?”

As an example: as a disabled adult, with recruitment, which means that I hear loud noises as so they are far louder than they actually are, I would love to attend the Cineplex sensory friendly screenings. Now as I’m a big fan of most children’s movies this works out well for me, most of the time, and my local theatre has never objected to my attending on my own.

Though unfortunately I have heard of other adults being refused entry to these special showings unless they had a child with them.

However, I am 44 years old. Once in a while I’d like to be able to see a movie rated higher than PG. Yet, these are never offered in the sensory friendly offerings.

Likewise, I know of many adults with disabilities, such as autism, that would also benefit from initiatives like the calming rooms being made available at Dollywood and Florida Legoland.

Now I’m quite sure that these facilities would probably allow adults into the spaces; but the chances are that the equipment and furniture will have been sized for children, not adults.

It seems that it is relatively easy to identify problems and provide solutions for children with special needs but as a general rule, society seems to forget that these same children grow up.

They become adults with disabilities.

Their needs are still the same but their bodies have grown.

From a medical, or daily living perspective, supports can sometimes be found to help these adults. A great example is the paddle program in North Bay  which is designed to help adults with special needs in five areas:

  1. Academics
  2. Physical fitness
  3. Leisure & recreation
  4. Life Skills
  5. Community involvement

Programs such as these help allay parents fears, as to what will happen to their adult children, when they, the parents die.

However, it does nothing to assist these adults in enjoying the modern world.

How hard would it be for Cineplex to show a movie rated higher than PG in their sensory friendly offerings once in a while?

How simple would it be for the calming rooms at Dollywood and Florida Legoland to include space allocation for adults needing the same respite for a period of time during their visit to the parks?

What about supermarkets? I tend to do my grocery shopping the moment the store opens, 7am, so that I am exposed to less people, less noise, less people trying to pet my Service Dog and it reduces the likelihood of my being exposed to my allergens as well.

Fortunately my life, usually, is such that this works reasonably well for me. Not everybody with special needs can do this. In fact for many this would be the worse time of the day for them to do anything as it takes time for them to get their brains a little less foggy and their bodies a little more flexible.

However, wouldn’t it be great if supermarkets and shopping malls offered a couple of hours a week where they will turn off the ‘music’, calm the environment down, restrict the numbers of people allowed in the building and make sure that the aisles are all clear so that wheelchairs and SD handlers have enough space to navigate?

I think that part of the problem is that, as a society, we simply don’t think of those with invisible disabilities. When children are young, and they have special needs, they tend to have adults advocating for them: parents, family members and carers.

When they become adults with special needs, who advocates for them then?

Some of us can advocate for ourselves, some of the time. But by definition we are going to have times when we’re sick. When we’re not well enough to advocate for ourselves.

We place a great deal of emphasis in today’s society on our children and it is true, our children are our future.

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However, yesterday’s child is today’s adult.

How are we helping them?

The Greatest Love of All.