I'm not even sure where to start with this blog. I've written about 937 different sentences and deleted them all. Should I apologise for abandoning my readers for 235 days? I think I probably should. So many people have been concerned and I haven't had the strength to reply to those who reached out. Then again, do I really have to apologise for needing a break? I'm so conflicted. In fact, conflict is a big word, and it's a huge factor in my absence recently (my therapist taught me that, I need therapy now btw). Is it a good sign that I'm typing again? Something I haven't had the strength to do for so much time? It probably is. Then again, I had to leave work early today because I couldn't stop crying.
My last blog was 4 days after my genetic results, I was upbeat, wasn't I? I was probably quite inspirational actually, receiving news like that and absolutely bossing it. I was so switched on and knew what I needed to do. I would focus my time on clinical trials, spread awareness, raise funds for the #fightagainstdementia, and become a 'voice for FTD'. I had also researched the different ways in which I could have a baby, this dodgy gene would NOT stop me from living the life I want. Ahh, I miss that girl.
It's now been 239 days since my genetic results and basically, I've gone completely off the rails and it's impacted me more than I thought possible. I was confused for a long time, then overwhelmed, then just spiraled into depression. It wasn't until I was in Ibiza with my husband (hoping that some time away would 'fix me'), that I had a full-blown breakdown and decided I needed help.
To give you an idea of how 'conflict' has presented itself, I'm essentially questioning everything in my life. I was (and still am) battling with myself every day, trying to understand how to live and finding it almost impossible to make a decision. Now I know I have this dodgy gene, I've been putting pressure on myself to make sure I live the life I want, to make sure I have meaning, purpose, and no regrets. Apressuren example of how I over-analyse is below:
Question: Am I in the right job? (just one example)
Read the following like I'm having a conversation with myself.
Negative Conflict | Positive Conflict |
It's a high pressured job - why am I putting myself under stress when my time is limited? | It's high pressured because you are in a senior position. You've built a successful career - be proud! |
Am I putting money before happiness though? | Money funds the lifestyle that makes you happy. |
But I'm not sure if I am happy at work. | Yes you are, you're only feeling this way at the moment because you're depressed. |
That makes sense. I'm confused though, are you sure I'm only feeling like this because I'm depressed? | I don't know. You might be feeling this way because for the first time in your life you have clarity and perspective. |
How do I find out which it is? | I don't know. |
I have these conversations with myself about every aspect of my life. It's got to a point now where I no longer trust myself with any decisions. Do I even want a baby? Am I happy where I live? Have I done anything meaningful in my life? Am I happy in my marriage? I actually asked myself if I was happy with my husband (you know, the one guy I love implicitly and who I wouldn't be without?). It is so messed up and it's making me re-evaluate every single decision I have ever made.
Thankfully, my therapist referred me to Erikson's stages of psychosocial development and I think I now understand what's happening to me. Please bear with me in this paragraph, it's probably going to feel like I'm giving you a psychology lesson but it resonated with me so much that I had to share it. For those who don't know, the theory describes the different psychological stages a person experiences throughout their whole lifetime. At each stage, people also experience conflict. At the final stage (affecting those typically over 65), people are likely to reflect back on the life they have lived and come away with either:
A sense of fulfillment from a life well-lived (integrity) or;
A sense of regret over a life misspent (despair)
These thoughts tend to present themselves when a person starts questioning their own mortality. If you come away with integrity, you'll likely show characteristics of acceptance, feeling at peace, or a sense of success. If you come away with despair, you'll likely show characteristics of depression, hopelessness, or feeling unproductive. Guess which one I came away with? Anyway, to summarise, I genuinely feel like I am already experiencing the conflicts of stage 8, even at the youthful age of 30. It makes sense though, my dodgy gene has made me question my mortality. The problem is, I'm experiencing these conflicts whilst also attempting to make some big life choices. It's an absolute head fuck and I'm struggling.
Of course, I'm also experiencing every other symptom of depression. I'm not enjoying the things I used to, the low mood, feeling isolated, fatigue, and of course the physical effects. It's no fun but I'm taking baby steps and trying to convince myself I won't feel like this forever.
In other news (and the whole reason people read this blog), I should give you an update about how mum is doing. She went into the care home at exactly the same time I received my genetic results, so it all aligns nicely. I feel comfortable that she is well looked after, but there has been a significant health decline. She's isolated herself, started 'pouching' her food which indicates swallowing problems, and she's actually lost almost 4 stone since going in. To make matters worse, the care home has been in lockdown due to positive COVID cases which means I haven't seen her for 10 weeks. I normally take her for a walk in her wheelchair around the local park on a Saturday morning, it's been hard not being able to do that. I feel like I've abandoned her, which is silly really because she shows no signs of knowing what's going on even when it is happening. On the plus side, I received an email today to confirm the home is now open again... roll on Saturday!
In other, other news, my brother has also commenced the long and treacherous journey of genetic testing. It's crazy how mum's diagnosis has absolutely ripped through our lives.
I hope you're all doing okay. When I feel less like I need a straight jacket and I can actually trust myself again, I'll get back to everyone who reached out. For now, just know I am okay and I appreciate all of you who have shown some concern. Thank you ♥
Like the others I too looked frequently to see if I’d missed a post from you. It’s very easy for me to say but please try not to but beat yourself up, not only are your coping with the diagnosis and decline of your mum, her going into care, not being able to see her for so long and the fall out of your own diagnosis. You have taken the first steps by asking for help (something I couldn’t admit to for a long long time). As my Dr said, it takes a long time to become depressed, so it takes as long again to begin to get to grips with moving forward. I’m sending big virtual wrap around …
Hi Jess - so sorry to hear how you've been struggling recently. It's completely understandable with how much you have on your plate, I can't imagine how difficult it must be to be coming to terms with your own test results and worrying about your mum's care at the same time. I was thinking about how you must be getting on during Covid times and hoping you were coping okay. Don't worry at all about replying and posting on here regularly, looking after yourself first is most important! Much love to you and your family xxx
Hi Jess! Good to see you back on here! I think you are so brave! My mom was diagnosed 3 years ago and went into a carehome straight after. I totally get what you're saying about the home being on lockdown and feeling guilty, I have felt that every time my mom's carehome has closed it's doors to visitors. To be honest, I've felt guilty ever since she went in there. Thank you for sharing your thoughts and feelings, it really helps to know I'm not the only one in this situation. Dementia is awful and vile at any age but my mom developing it in her mid-fifties (a young, fit and gorgeous 50 something too!) has been such …
I am new to the blog, so I have only missed you for about 30 days ;) Your blogs have all been beneficial to me. This last blog was completely validating, as well. I recently quit my job and recognized your pro/con list. I partially blame FTD for this, due to my mothers diagnosis and the uncertainty of my health destiny. Best, Leslee
Glad to hear from you in the blog. I will admit to checking and rechecking to see if I had missed any posts. And then worrying about you. You write so eloquently and candidly that strangers on the internet are concerned about you. Hugs.
Sheesh....It's probably not helpful but for what it's worth, I think your reaction/s to your test results are totally understandable. Why wouldn't you be running the gamete of emotions/questions/wondering?
All I can say is that I, like all your other followers, am listening. We're here.
I'll be thinking of you when you take your mum out on Saturday.
Lots of love from here in Seattle.
Juliet x