Category: Advocates

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.

I woke up this morning still feeling somewhat overwhelmed, and Im not even sure overwhelmed is the right word. Maybe in a bit of shock, somehow wondering is this real, is this really happening. I’m still processing how out of something that has been so devastating to and for so many, and for the rest of us has created havoc and uncertainty, has created a miracle, a blessing beyond anything I could have imagined or hoped for.

2020 was challenging for me not only because of covid 19 but complications with my health as 2021 started my complications with my health just seemed to ramp up to a point that around the Christmas holidays I was thinking that if things continued I would have to look at supportive housing, but trying to figure out how to help myself so I could try to get one more year being independent. My body was doing its own thing, the amount of inflammation in my system was creating all kinds of issues. I’m not going to go into all of them again I have written about them in the past.

Instead and admittedly not being able to fully understand all that transpired in this last week, something seemingly so simple, turned into a greater gift than I could imagine, the words from my specialist yesterday ringing out, playing over and over in my head … “Get out there go live, do all the things you want to do.”

Those words came after he called and wanted me to meet him at the hospital yesterday, knowing that my last ultrasounds were a mess, an MRI had been ordered, blocks were scheduled to be done to deal with pain. So I was expecting almost anything I had also had a conversation with my GP earlier in the week over strange changes since my third booster shot in which I received a higher dose of Moderna, because of my immune system, 24 hours later I was noticing the fatigue disappearing, then over the coming days, inflammation disappearing, body functions working better, kidneys, bowels, brain fog lifting, energy increased, appetite returning. Every day over a week marked unexplainable improvement, the only thing that was different was the vaccine I received.
There was a part of me that was thinking is this up period before the end, knowing that most people have a big up swing before they die. I couldn’t understand what was happening, wanting to be happy about it, yet holding my breath fearful that if it crashed I would end up worse.

When my specialist called me in I was trying to be prepared for anything and everything. But I couldn’t have prepared for what transpired. Lung capacity is improved, with the decrease in inflammation blood flow improved which results in less pain in the rib area ( thoracic), then, the explanation of whats happened. They know now that there are (rare cases ), and I am one of those cases, that the Moderna vaccine is helping some people with various health issues, he explained how it changes how my immune system is working, he said when we have an area that is in trouble our immune system focuses there, the vaccine allows the immune system to shift its focus and for your immune system to start working fully, on all areas. He said they have the data know to show that for some and one person in particular, who they gave 22 does of the vaccine his crippling arthritis is resolved. So he was pretty excited to see how and what it’s doing for me. He told me it’s a gift and now I need to get out there and live, go do all the things I have wanted to do, just go, don’t wait just go do them, go live. He recommends that I get the fourth dose as soon as its available. I was expressing my concerns about it reaching a peak and then crashing and that I would end up worse than before the shot. He has assured me that that should not happen that my system should continue on this new path. Again saying get out there and get living. It is going to take time for me to process all of this.

This will not change my dementia, but what it does do is allow me to do all the things to help myself, the decrease in inflammation in my body allows all things to function better, I can hopefully by doing all the exercise, nutrition, sleep, keep the dementia component, and symptoms at bay for longer period of time.

I have to admit I sat looking at him, likely in the most dumbfounded way, he dictated an update to Dr. Cunningham while I was sitting there stupefied, I listened to his words, and his rattling off the new information coming in, it was like his words were echoing through my head, in his closing he said this is the kind of news we all like to hear and see, a miracle for Christine, for sure.

A rethink for myself for sure, its a good thing dementia helps us be adaptable because this is causing a great need for adaptation for the coming period of time. I am nervous of it all, I am excited, I am beyond grateful. I feel the need to go sit in nature and let it all sink in. I need to breathe. its so overwhelming that its almost more than I can manage, but in a good way. I left the hospital drove home with tears streaming down my face, the sheer magnitude hitting me, the immense stress of the last year, fighting so hard through so many health issues melting away in the tears. I’m still overcome with emotions today, tears flowing.

Life is and has been strange in the last couple years, but this was something I never thought could be an outcome. A tremendous start to 2022, is an understatement. Silver linings, miracles, blessings, call it what you will but I feel like this one thing, this vaccine has provided me with all those and more.

This morning I woke thinking more about something that has been on my mind a lot lately. It is something that I have had some great conversations about in the last little while and perhaps its on the minds of many others. Okay, I’ll be honest there has been many things floating around this brain of mine, and mostly likely not things that the so called “normal folks think about or give much thought to”, but here in Dementia land our minds/brains work and function in a different fashion.

One of the things that have been really at the forefront of this brains thinking is about how we advocate. We keep talking about how little has changed in 30 years of advocating, yes there has been some changes, but in many areas not much has changed. So is it time we change? Do we need to rethink how we advocate? Do we need to change the focus? Do we need to change the message? We keep saying we want to end the stigma, yet the stigma persists, so perhaps we should talk more about what works for us, what we do to enable us to continue to have the best life possible, lets leave stigma out of it, if we don’t talk about it, perhaps it will change on its own. Are we keeping it alive unknowingly by continuing to bring it to the forefront? Should we change our focus, if we keep saying we want to be invited and included then maybe we need to invite and include. Let’s teach others how to help us, how to work with us, let’s not wait for them to invite us let’s invite them. Let’s showcase how valuable we are. I know first hand that by sitting and being willing to get out of my comfort zone and work with researchers, they have embraced working along side me. We are together making things happen, nothing good happens quickly it seems, but I feel like we are making more improvements, getting more people involved and more voices heard through this avenue than anything else, thus far. I don’t feel used, I feel valued, unlike some of the various organizations that like to have people with the lived experience has poster people to help generate funds to help the organizations. I wonder does this also help keep the fear of Dementia alive? That truly depends on how it is done, and perhaps we should ask them to “our table” and help them better help us. Being angry that nothing is or has changed much does little for any of us.

Also sitting at the forefront of my brain is this idea of “finding a cure”. I am including my dear friend Kate Swaffer’s Blog on this topic at the bottom of this blog. I am sure you will enjoy, so please take a read. We have discussed this topic at great length. For me personally, I think “finding a cure”, creates a false sense of hope for people each time a new article comes out about some drug, and I truly wish they would just stop this type of talk. Work on it if you must, but I don’t want to read and hear about anything until it has been proven, not things surrounded in controversy. I want to hear more about nutrition, exercise, life style adaptations, more about rehabilitations, more about modifications to our daily lives. These are things that can and do for many of us have a lasting impact on our overall quality of life. And speaking of quality of life, let’s look at what that actually means for people and find new and better ways to help them maintain that quality of life for longer. For some it may mean having access to music and singing, for others it may mean having access to various types if art, or cooking, or gardening and out door space and nature and animals. Lets more more emphasis on Quality of life, most of us living with dementia are or become realist, we understand that a cure is not coming in our life span, but we can and do hope for more help in maintaining a lifestyle that provides us with quality of life. I am not personally interested in prolonging my life, I will be happy with the life span I have been granted, but I sure would love to have more help to ensure that whatever the span is.

My dementia has provided me a freedom from the stress and strains of living under and worrying about all the things society has created for us to live with and under. Next week, next year, are of little concern, it’s much easier to let them unfold. I live happier for the most part than ever before because I just enjoy being here. I spend 95% of my time alone, at its ok, because I’m ok and I like me.

I have noticed a lot of people being very angry, angry because of covid, Is that really it though, I think it goes much deeper, but covid has allowed people to feel like they somehow are more entitled to express their anger, but when covid is over if they haven’t looked at the real cause of the anger, what will they then blame it on. I’m not angry, maybe at times a little sad that I don’t get to see people I’d like to see, but not angry, maybe my dementia has given me the freedom of being that allows me to understand that I cannot control a virus, that just like having to learn to walk hand and hand with my dementia, this is something I just have to walk along with as best I can the only difference is eventually the virus will end, my dementia will be with me until my last breath.

There you have it my Sunday rambling of thoughts. Please take a minute and read Kate Swaffer’s blog link below.

I’m not after a cure for dementia