Category: Stress

Its been a busy week by all accounts, considering two months ago I was barely able to be out of bed, but the business was not at any kind of pace I would have done even just a couple years ago. Physically 6 1/2 weeks, since my Moderna injection, how my immune system operates within my body better than has helped me feel better than anything I can remember , and I am still holding strong. To be without pain, to be without all the inflammation allows me to do much that has been on hold or cancelled for a long time now.

It has also given me the ability to be more aware of the things that I am and how much I am being effected cognitively. My moments that I call squirrel moments are more prominent., staying oriented to day and time is near impossible, without all the reminders i have coming in at a steadily all day everyday, I would never get anywhere on a day or time I am meant to, none of those things are really important, because the tools are there to navigate them. It can and does cause me quite a bit of reasons to laugh at myself. Starting something, getting distracted by something else, changing gears from this to that and back again. Again its just things that I hadn’t really noticed or taken stock of for a while in part, because I was just in survival mode, from all the physical illness, so now I am taking stock and some days I spend a lot of time squirrelling. It’s very evident that not having brain fog for the last six weeks has also contributed to my ability to notice these things. So thats the update on how that piece is going.

Can’t believe that we’ve arrived at another Saturday, time really does seem to be moving faster than I am. Yesterday saw my second time dipping my toes out into the world, I went for my first official hair cut in over two years, Ive been chopping and hacking away at my own since the start of the pandemic. while the hairdresser, new to me, was deciding how and what would be best to do, she asked how I managed to cut the back, I cringed thinking oh no, I can only imagine what shes thinking looking at it. So I showed her, she said well she could never imagine doing it herself but that I had actually done a pretty good job. when she got to the top and sides,I said I’m sorry that you have to deal with this mess, she said well actually I was just thinking that you did a pretty good job texturing. Oh my I burst into laughter and said oh thats great I had no idea I had textured it, i was just doing what i deemed a cut and hack. So my hair is all trimmed up so that it can eventually be a style she has in mind.

The tiptoeing out into the world is something I think many of us are doing cautiously, and we should all do it in ways that are comfortable for ourselves, and we should not judge others as our levels of comfort are all different. There are some things I am still not comfortable with but at least I am stepping out bit by bit and finding my comfort levels.

So now that Ive squirrelled another morning away, time to get up and dance. Enjoy your weekend, find the joy, despite the obstacles, enjoy where you are and who you are in this moment, for this moment truly is all we know we have.

Yesterday was my first in person presentation in over two years. Everything has been on line, and the on line component has worked, but it was always somehow felt like it lost impact, fell short, fell flat, not really sure how to explain it. There has been many excellent webinars, zoom meetings can be very productive, support groups via zoom can and do offer so much, so I am not wanting to say that on line things aren’t or cant have a positive impact, they most certainly do. Somehow conferences on line seemed like the impacts of those presenting was lost. There was no way to interact or connect with the presenters, no ability to have a discussion, the face to face connections., watching and seeing body language.

At the same time we have to be grateful that we live in a time that technology allowed us to do so much on line, to stay connected, but I think for many of us we are just really feeling like we want that face to face connection.

So yesterday, my first in person presentation, of course limited numbers, vaccine passports and masks, no one minded, no one cared, those pieces meant we could all feel good about interacting. I had said that I was hoping to change it up, instead of just presenting and speaking to make it more interactive, engaging. I also know that sometimes people sit back at don’t want to be the first to ask a question, so during my first few minutes, I posed a couple questions to them. It was a terrific way to get people engaged, and engage they did, my talking notes covered nine pages to fill the 30 minutes, the 30 minutes ended up almost a full hour.

My nine pages of notes, never got past the second page, although I believe by the end we covered more than just my notes, and most importantly, people got to ask about the things that were important to them. It was such a wonderful experience, it renewed me, left me very inspired, reminded me of the importance of actually connecting with people not just talking to them or at them. Giving them space to have their voice heard, so they left feeling like they were actually cared about, that what they felt, what they thought mattered, hopefully it left them empowered and hopeful. It still gives me goose bumps this morning. If I had the ability I would do this community by community.

There is nothing more important than being able to leave and feel like you had a small piece of giving people a sense of hope, that they are not alone, that everything they are feeling is valid. As much as they said I inspired them, I think they were more of an inspiration to me. The level of engagement surprised me, reminded me of how important it is for us to share our experiences and our stories. So today with my heart full, I will be thinking about each and every one of those people, grateful for all they left me with, and hope as you go about your day you can find those things for which make your day rich and full.

Sitting this morning enjoying my morning coffee, my little dog sleeping beside me I’m going over my coming week. Yesterday, I started getting things ready for my presentation in Lake Country, they have asked me to do a 30 minute presentation, which by any standards is a long time for a speech/ presentation. I am changing things up for this talk. There is so many aspects and talking points when talking dementia, often we have one topic we are specifically talking to. Be it Stigma, Technology, Rehabilitations, Living Well, and the list goes on, normally even 15 minutes is a long time to talk when presenting. So this time being given a 30 minute time slot I am changing it up, I will talk to many points, but a very large part of it will be interactive with those present.

I have decided to use the approach instead of doing what we know, time to do things differently. We often talk about how 30 years has not brought the level of change we want and that perhaps we need to do something different instead of running the same old tape so to speak. So this will be my first time changing it up. I am hoping that having direct interaction can have a more positive and lasting effect. Getting people truly engaged, instead of talking and knowing many are only half listening, thinking about other things, maybe engaging with them will allow a greater learning/ understanding dementia environment. I’m looking forward to it, I’m looking forward to it being genuine and authentic. Not being restricted about topics, or just being given a list and having to choose which I might like to talk to allows me to be creative with my presentation, it will be a mixed group, people living with and their partners, care providers, professionals, so engaging them should bring about some great discussions.

There is of course times when speaking engagements require the old tried and true, but it doesn’t mean that we cant also change things up when appropriate. I don’t want to become stale, not in my advocacy work, not in my everyday life.

Even living with Dementia, and even though when I think about it, and how for many with dementia routines are important as are being in familiar settings, it is in part why I still live where I do, I am comfortable here. But it does not mean we can not nor should never try to change things even if seemingly little things, like changing its my walking routes, eating breakfast at lunch and dinner at breakfast. We just have to make room for adjustments and changes, but they are possible, just like travel is still possible.

On that note, I am happy to say I have had two of my abstracts chosen for the Alzheimer’s Disease International Conference in June in London England. It seems surreal because it’s been so long since we have had the opportunity to go to these conferences and to see people we have not seen for a long time and meet new people. So lots of work ahead for that but the basis is done in the abstracts that I submitted.

Well I’ve just returned from a very very long walk, met up with a friend, she said I look totally different, from seeing me before the Christmas holidays, so more evidence of how much and how drastic of a change I am going through. Oh and did I mention, on top of being able to feel my cheek bones, I today noticed I am once again starting to be able to see the dimples when I smile, the little dimples that I had actually forgot I had. So much to be grateful for today, it was a beautiful weekend.

Tomorrow is Valentines Day, for many it is a difficult day because they are alone, it is a day that really for some is nothing more than a smack at them to remind them of that fact. For me, I always think about my husband, who I always received the most beautiful card from and one single long stemmed red rose. We always had a lovely dinner together, usually it involved prawns because we both loved them. So I don’t think a lot about the fact I am alone, I instead focus on being grateful for the memories. However, I do believe that we should treat ourselves, and be enjoy a nice dinner, give ourselves chocolates, or flowers or whatever we chose because loving ourselves is important and honouring that is a good thing. So I have bought myself a little bouquet of Tulips for Valentines Day. Love is Love and I hope whether you are alone, or you are sharing your special day with someone, I hope you remember to spread love throughout the year, not just on Valentines Day, because the world can never have too much love.

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.