Category: Christine Thelker © 2020

I had a zoom call with a friend that I haven’t talked to in a very long time yesterday. She had sent me a surprise invite a few days previous, and in all honesty it couldn’t have come at a better time. It amazes me how things happen in the and at the most unexpected times and ways. I dont believe they are coincidents, I believe the universe gives us what we need sometimes even if we dont know we need them. This catch up zoom was so a perfect example, great to be able to just let things flow, it was effortless, laughter and tears, sharing and caring.

She was so genuinely happy to see me looking and feeling so good, she was genuine her her interest about the drastic and very positive results I have had frim my Moderna Vaccine. She was also able without me having to try to explain it, and actually put into words for me some of what Ive been struggling too, the challenge of trying to reunite this new and very different change, getting my mind to trust my body, stopping that fear that sneaks in. It is not quite as easy as people think, your mind and body must reestablish a new relationship with each other. For so long, I knew what how my body was and would react to what I was asking of it, it as changed so the connection between the two has to establish new paths of connectivity. Its like becoming one with yourself, again, often times we get disconnected with ourselves, sometimes without realizing it, sometimes because of events that were and are out of our control. Having someone help us make sense of it, is sometimes a gift without measure.

I have said in recent posts that I am trying to be mindful of what my body needs, giving myself space and time to settle into this new piece.

We talked about the hope that these vaccines and all the various ways they may lead to great things for so many, I believe there is much on the horizon. I have renewed hope, not just for myself but for so many going forward, in the coming years, and we all need hope, and seeing and feeling what this Moderna has done for me fills me with hope.

I wake up every morning put my hands to my face, every day that I still can feel my cheek bones, I am excited, I normally have a round face, but the inflammation that has plaque my body for the last year or more, having disappeared, I can actually feel my cheek bones, my sister in law said I look ten years younger than I did just a short couple of months ago. My body doesn’t hurt, I haven’t had brain fog in five weeks, but there is still this settling in period. It was so good to talk about it without worrying about judgement.

We all need to grant ourselves some grace, to be kind to ourselves, life challenges us, in good ways and not so good ways, the world seems to be at such a place of unrest, in so many ways it feels like good versus evil, it makes me want to tuck in at home and shelter myself from all the ugliness I see, but then I go out for my walks and I encounter kindness and see the good there still is. I remind myself everyday to not get caught up in it. That can be a very hard thing for us to do, I believe there is good and positive ways to bring about change, and there is ways that can although well intentioned ends up causing more harm than good, I will stick to trying to effect change through the channels I believe has the best chance of success, even if it takes longer, and perhaps the changes I advocate for my not seem to be as important to many, to those of us who work tirelessly for those changes they are every bit as important and I don’t want to disrupt others rights while I do it. And as I look at so much unrest in our world today, I cant help but wonder if all that energy were to be put into doing things that were of positive note, how much better the world would be, how much good could be done, how much change could happen. It feels as though right now people need to remember the old saying ” the devil you know versus the devil you don’t.”

This leads me to remind myself that I have been given this miracle, and I don’t t know have any of the answers as to the how’s or why’s, and all of the science and medical components of it are in the hands of my doctors and the Moderna folks. Many will question it, many will refuse to believe it, those who have witnessed it in me, watched, been scared for me over the last year, have the best and perhaps most important opinion and perspective. Perhaps at the end of the day all I can do, other than record any changes, what has happened and what it is for me as time goes along and maybe I am not supposed to now, maybe I am just supposed to accept what is, give myself the grace to enjoy it. I am getting there settling into my new normal. So thank you my friend for somehow knowing when to turn up.

The week has flown by, I am feeling like I haven’t in years if ever, however in the last two days I have noticed that I have a couple little things that today will warrant a call to my doctors, I think that with all the changes that have transpired, my medications may need adjusting or stopped.

I didn’t sleep much last night, my brain was running videos all night, my life replaying, its funny for so many years now Ive had all these blank spots, unable to recall much of my life, and it was like in an all the blanks got filled in, It somehow was freeing. just like my body feels like its resetting itself, so too is my brain. It all feels and sounds crazy and I’m having trouble articulating it, but my body feels so very different and foreign to me. I am slowly learning to trust it, its odd when for so long its been failing me, its know providing me with so much. I am trying very hard to not take ot for granted to be kind to it, to feed it, rest it, offer it kindness.

We spend so much of our lives pushing our bodies, our minds, demanding more and more from it and then when it breaks we are angry, disappointed, sad. I know my illness will always be with me, I never thought I’d see anything more than decline, all the underlying complications effected the dementia in ways that I don’t really think I gave enough thought to. Seeing how this Moderna vaccine has changed my immune system, and how it works in and with my system, how much of those underlying complications, with blood flow, inflammation, fatigue, pain, the true impact of those things on my dementia. We often talk about how managing the symptoms, about how looking for a cure is the wrong approach, I am convinced dealing with all these other things is the key. I have no idea idea if this gift I’ve been handed will last, but I do know I will do all I can to honour this vessel that houses me. I will offer it better nutrition, rest, and kindness, I will keep moving, giving it the best possible chance. It doesn’t mean I will be perfect, it means I will be mindful.

I am once again finding myself searching for who I am, this event has changed me on many levels, just like my dementia diagnosis changed me. Funny we acknowledge how trauma effects and changes us, but traumas don’t always have to be bad, which in this case it is the complete opposite of bad, but it still impacts, it still changes us.

I am going to starting to take part in a 12 week program, through the university of Waterloo, it will be a exercise/ nutrition program for people with dementia, I will take the program and provide feedback. I am also finally doing my first presentation/ speech in my local area, its been a lot of work, and time to break through, but its important to me. Continued work with the CCNA, and others, but I will be doing all in ways I feel I can manage. I feel somehow stronger than I have for a very long time but yet very fragile at the same time. Maybe feeling fragile comes because the very things that are causing so much discord in our country is the very thing that has actually provided me with ability to have a quality of life to be able to try to do things I’ve always wanted, which two months ago were slipping farther away day by day. Its a strangely odd place to sit.

I am not sure why but today feels heavy, very ominous, a feeling I haven’t been able to shake all day. At the same time, my day has been productive and full. I started out doing my morning dance routine, its funny because I’m finding that I go to sleep at night looking forward to that part of the morning, the upside of living alone, dance like no ones watching and literally I can.

I then went out and removed snow from five vehicles so others that live in my building wouldn’t have too, a nice Sunday morning gift for them, exercise and fresh air for me. I then moved my car for the plow to be able to get rid of the snow, it snowed overnight and although it wasn’t an amount to stop one from going about the day, it did require some removal first.

I then got busy being busy working on what I always feel are my mental health projects, three bird house, two of which I completed today, the third is a work in process. ( pictures below). They are fun and happy and definitely needed with this ominous feeling sitting in the pit of my stomach.

A mid day walk trying to clear this heavy feeling from my being, it still sits with me as I write this, but I’m sitting sipping a cup of tea, grateful that today once again I am pain free, fatigue free. Grateful for the company of my little dog ( Pheobe).

So as we head towards the last day of the first month of 2022, although life has taken an unexpected turn that leaves more questions than answer I have more to be thankful about and grateful for than I could have imagined. If the events that have unfolded so far in January are an indication of the coming year I will have much to look forward in 2022.

I woke up this morning feeling bright, alert, no brain fog, I had my coffee, turned my music on and danced around the house for forty five minutes. I love having the energy, no pain, no fatigue, dancing is fun, feels good, makes me happy, and is great exercise, so Ive made it my morning routine. My little dog Pheobe slept till 1030, so I had ample time to get the floors washed, tidy up, laundry that sort of regular kinda stuff.

But there is this other piece, its sad, its hard to explain, Kate Swaffer recently wrote in her blog, about grief, and its somehow familiar, or perhaps similar to how I feel, but I shouldn’t be, I should be jubilant, and how is it I can be so damned happy and excited and so sad at the same time. So happy that Im feeling better than I have in ten years, terrified it will all slip away, its so confusing. The sadness comes in because, I no longer understand who I am, this change came so suddenly so unexpectedly, turned me upside down, inside out. I’ve lost my footing, much like when I was first diagnosed, and it took a long time to work through it all and find myself, because I wasn’t the same person as before I was diagnosed, and know I feel like thats where I am again, unsure of my place, of who I am, of what it means. I’m finding It necessary to limit my social media time, I’m attending things as I can, sometimes not knowing until the actual moment whether I can. So today I decided to shut the world out, I started making a new vision board, I finished a bird house I have been working on. I have moments of feeling guilty, that I should be doing more, but I understand things differently than I did before I was diagnosed. Working through the ups and downs of being diagnosed, I know will help me navigate this, its different but I still now I need to allow myself the time to move through it.

Living with Dementia has taught me to be adaptable, resilient, creative, it appears all those lessons are and will come in handy as I navigate some very unknown waters. I am fortunate that I have great doctors working along side me, bumpy roads at present, but I’ll get there.

So On Wednesday I had a conversation with My Doctor, we were supposed to be seeing each other, but his staff were all sick so he had to close their offices. During that call he let me know Moderna had been in touch with him, and he would be doing a report for them regarding the events that have so drastically changed my overall being.

Today I saw him in person, he had a stack of papers from Moderna, there is a lot of paperwork to be done, he ordered bloodwork, for comparisons, he will be working with my specialist to get all this done. We had a good conversation about how there is more questions than answers even for him, so much to be learnt.

He understands how difficult this is for me to navigate such an enormous change so quickly., and yes even a good change can be overwhelming and stressful. He also understands how I am having trouble settling with it, when we don’t know if it will be a forever change or if it’s going to just be something that lasts a period of time. It’s a confusing time for me, and I am struggling trying to balance it each day. I feel emotionally fragile, but healthier and stronger than I have for years. Trying to make the most of each day. There are certain groups and people I will share with, but it also causes a lot of anxiety and difficulty. When there is so much division and controversy around something it makes you afraid to talk about it and yet talking about it is the one thing you need to do to help navigate it. One part of you wants to skip down the street, yell from the roof tops, the other is leary because of all the attacks that happen in these situations.

We have to keep working to find answers, will we ever fully understand what and how this vaccine identified something in my body and changed how my body is able to respond to it? Will the missing pieces be revealed? I am willing to work with them and Moderna for answers. All the while walking on glass, scared it will shatter under me. But if I and others are the key to things that could really impact a lot of people then I need to. This is how many things were forever changed in the past, polio, mumps, measles, rheumatic fever, the list goes on, people have to be willing.

I have and am being careful not to overload my plate right now, not because I don’t have the energy, but because emotionally, I need to take care of myself right now. This is a lot to manage.

I don’t want to fuel the fire, I don’t want to fight with people over whether they should get vaccinated or not. I have been respectful of peoples choices, but today I was upset and angry to learn of the threats and the awful things my doctor has had to deal with over this. This is why navigating something that is good from vaccines that has happened to me is such a fragile thing to be open about, something that I should be able to have people be excited for, I have to fear them instead. For me if you don’t want to get vaccinated then don’t, but then don’t go to the doctors or the hospitals for treatments of any kind, because everything they do is based on science. You can’t have it both ways, if you don’t believe then fine, but don’t beat up the people who do. Go about your business, let them and us go about ours. We and they did not create this situation, it is a pandemic, learn and look at your history. But don’t beat up those who are trying their very best to help people, and who have been not only through the pandemic, but through every day before and will long after. People are too much wanting to make this a political issue and issue about everything and anything they can, it is not is about a pandemic. I am so terribly upset by this, for this doctor, may not be everyones cup of tea, he may not be the right doctor for many, but for those that chose him, he goes above and beyond over and over. He most certainly does not deserve to be abused by people because he is doing what he does, being a doctor. Let’s not forget, they are doctors, not miracle workers, but they are there when we need them. Even though they don’t have all the answers for me they are just as much wanting to find them as I do. I am grateful everyday for my team of doctors for without them I would not be alive today, and now I have a vaccine to thank for giving me more time, a vaccine that was not created to give that to me, but I hope and pray that perhaps it will help bring about new advances that can help many in ways unexpected.

It’s been a couple of days of feeling really good, twice I had bouts of severe rib pain, stopped me in my tracks, took my breath away pain, but this time it only lasted a few minutes, two bouts over two days and none since. Those two bouts terrified me though brought me to tears, terrified all the good that had come since the Moderna shot would suddenly be gone, terrified that I would end up back were I was three weeks ago today, or even worse.

I have had energy, moving large pieces of furniture, even carrying it up and down the stairs. So physically still seeing all the improvements, but noticing more of the cognitive issues that likely I wasn’t because of so much of the focus was trying to navigate all the pain, and just get through the day. I am becoming aware that I am forgetting names, of people I know, people i have called by their names for a long time and now I am looking at them and its taking me time to have the name come to me or I’m-calling them by the wrong one, twice this week in meetings I had to look at the little box to see someones name during meetings, something Ive never had to do in the past, I know these people, suddenly their names are disappearing from me. I cant find the name to fit the face. Those things are a frustration but ones that there are work arounds for, they are not live ending, but they are all part of this journey.

The big piece for me right now is my mental/ emotional state. The best way to describe it is that I feel as tough I am walking on quick sand, never knowing if the next step will suck me under and sink me. Holding my breath with each step. I have so many more questions than answers, answers which may not come for years as the learn more about the effects of covid, of the vaccines. Why is it helping some of us, while making others sick.

Its even difficult to talk about because there is always those people who question your diagnosis, ( That one still makes me angry, I always want to say ” like your a doctor right? ). So you know full well even if they can see the difference from three weeks ago till today they won’t believe what you’re telling them, so it sort of makes you feel like you’re going crazy, yet you know you’re not. Then theres the feeling guilty for feeling so great at this moment, for being given this gift, this miracle. Its overwhelming and I am having trouble navigating it all. It was a drastic and sudden extreme change. In many ways I feel like I did when my husband died, like I was drowning, couldn’t breathe, couldn’t find my footing, if I am honest I am not actually sure if I have ever found my footing, that is expected under the circumstances. This time I should be jubilant and in some moments I am in others I’m in a heap crying. My doctors say just get out there go do all the things you’ve wanted to do, and a piece of me wants to do nothing more. The other part of me feels almost frozen, afraid if I do, somehow it will start to unravel and take me backwards. It is easy for others to say well this or that its totally different when you’re in the eye of it. In this situation I don’t know is all the inflammation going to come back, are my lungs, and all my organs going to start malfunctioning again, as quickly as my specialist said ”the switch flipped” is it going to be flipped again. This is such a big event that I am going to see my neurophysiology. Doctor so that I can have the help to navigate this. Today I see my doctor again.

I do and am enjoying doing so many things that we normally take for granted, I am finding the joy mixed in with all the other emotions, and I know Ill get there but right there but right now the best I can say is I’m a hot mess, trying to navigate through the quick sand until I get to solid ground.

Here’s a great event that you’ll want to get registered for

https://ccna-ccnv.ca/caregiving/

I have decided that it is going to be important to document things that I am noticing since this miracle of miracles happened two weeks ago today. Yesterday I was asked about what I was noticing and seeing and others described what they were seeing. I had a friend call from out of town, she said in knowing me over 4 years and spending a lot of time with me and after being ready to jump on a plane to get here not so long ago, ( my last hospital visit ) maybe 6 or so weeks ago. She told me in all honesty that she thought that I was going to die. I admittedly had to admit that I was feeling like I was on the way out as well. She said I sound better than she has ever heard me. I told her that when this happened I felt like maybe this was the upswing before the walk towards death. I feel totally different these days, if I ever in my life felt like this I don’t remember a time. But things I am noticing and being unsure if they will be lasting or not the need to document not only helps me but the doctors as well.

Today for example I went to the store for the first time in a very long time, and even if I went I normally was very careful to plan to go on the less busy days at the least busy times, so that I could have a better shopping experience, normally the noise of the store, the business of all the people was overwhelming and I couldn’t manage it. Today I went at the peak of the day, did my shopping without thinking about it, without needing a list, no stopping wondering what I was there for, just bought my groceries and went through the till, even managing a conversation while I did that. I got out to my car, and then it hit me, what I had just managed to do, I sat in my car in a stupor, the realization of what I had just accomplished overwhelmed me, I sat marvelling at how this could be happening, at the enormity of it all. I went to the next store had a great conversation with one of my old neighbours, we’ve made a plans for a dinner date. He has always been supportive and helpful, he was happy to see me “looking so good”. I took my time in the store trying to enjoy it and take in what I was managing. The line up was long at the tills, but I just enjoyed watching the people and listening as we moved along. These are things I have not managed for a very long time, and anyone who in recent years has attempted to any type of shopping with me can attest to the difficulties it created for me.

When I arrived home, I decided to pull the car up to the door and bring stuff up the stairs ( no elevator where I live), has been a real issue this last year and in fact a month or so ago when I last shopped I had to have a friend come and bring the stuff up the stairs for me. My fatigue and that my lung capacity was so bad I could not do it for myself, some days it was all I could do to get the dog out side. Fast forward to today, I carried the boxes and bags up stairs one at a time and then two cases of water one at a time. The I went and parked my car, came up the stairs again. I started to put the groceries away and suddenly I stopped once again, I looked, then I counted the boxes and bags and went and sat down in shock as I realized I had just done 7 trips up and down the stairs carrying groceries and then an 8th time to come in. I phoned my friend, who was here the week before all this happened and she said its no wonder its overwhelming me, after seeing how I have been the last couple years.

It’s such a drastic change all so suddenly. so the documentation becomes more important than ever I think. Its 4 in the afternoon, two weeks ago I would have been on the couch or in bed already for hours. I just got back from taking all my recycling away, and sat down at the computer to do this. I took part in a presentation earlier today. None of this possible two weeks ago. In a week I see the doctors again, will be good to hear more from them and have more documentation for them.

I know my dementia has not changed, what has changed is how my brain as well as the rest of my body is managing. Did the vaccine trigger something else, some other event in my body/brain? I cannot make sense of any of it. For now I have to just try to find a way to settle with it, trust it, thats a big thing, bigger than I care to admit, trust it. Once I navigate that piece maybe I can settle into enjoying whatever for how ever long I get to. For know I spend a good part of each day marvelling at it, at myself, and feeling overwhelmed.