A little bit of a life/health update from me

PIN IT

A little bit of a life/health update from me

Hello everyone, I made a Facebook post about this, but I also wanted to share what's going on on my blog as well for those of you interested in/who have been following my health journey. I've also been writing about it over on my Substack in WAY more detail, but here's the gist.

Everything feels just a little bit heavier today. I’ve been pretty open about my health struggles in the past with IBS, a slipped disc, chronic fatigue syndrome, anxiety, panic attacks, and all my issues with iron and B12 deficiencies, and I want to keep being open, keep being vulnerable to show that all of us going through these situations or illnesses are not alone. I have been struggling with more health complications than usual lately, and it all feels like one big giant health scare. As we’re dealing with a lot of unknowns and ambiguity, I haven’t been as open as I would normally have been in the past. I am kinda making this post so I don’t have to individually call everyone I want to tell, and I can put it into words that make sense. I find writing is easier to explain what’s going on than articulating it out loud. Maybe that’s why I did so well at university (lol jk).

Before I get to the point, I’m just going to describe a few of my symptoms I’ve been having lately (and these are on top of my IBS & fatigue), dizziness upon standing, especially when going from lying down to standing with a significant increase in heart rate, pre-syncope (i.e., the feeling that you’re about to pass out), fainting, more fatigue than normal to the point where I might have slept 8 hours the night before but wake up feeling like I’m hungover without drinking alcohol at all, tremors/shakiness, sinus pressure/headaches and occasionally, migraines, exercise intolerance, insomnia, adrenaline dumps (which is like having a panic attack without there being a panic attack), chest pain, temperature dysregulation, and I’m sure there’s more but that’s a lot to deal with right now. According to the doctor, these symptoms line up with things like POTS/orthostatic intolerance/dysautonomia, which are VERY common in a post-COVID world. However, I’ve had a lot of these symptoms since I was a teenager, and I was constantly dismissed by doctors. I’ve had things said to me like “Oh, maybe you’re just underweight,” “Maybe you should gain weight”, and then when you gain weight, “Oh, maybe you should lose weight,” “It’s just your IBS, you’re perfectly healthy,” “That’s just anxiety,” “It’s just your period,” etc. I’m sure many of you will be familiar with these lines. Every time I’ve fainted and ended up at the emergency department, I’ve been given fluids (saline) and told to go home, and that I’ll be okay tomorrow. It hasn’t been until now that the doctors have taken me so seriously.

On top of all this (if that wasn’t scary enough), I’ve had an even bigger scare – with my doctor telling me my bloods have been very concerning for a long time. The answers here are still unknown, but we have to rule out a lot of the scary, life-threatening things that it could be (e.g., an autoimmune disorder/cancer). As this is a life-threatening thing (thing doesn’t feel like the right word here), I have been referred to a haematologist and given even more blood – I feel like I’m constantly being poked and prodded by medical professionals. So, I’m waiting for that call. I have also been referred to a POTS specialist to help with managing symptoms and seeing what other things I can do to combat all this.

For now, I can do things like making lifestyle changes of adding in electrolytes, wearing compression socks, and adding a little bit more salt to my diet. I’ve also been told to monitor my blood pressure and symptoms leading up to all my specialist appointments, so it’s time to get on the smart watch bandwagon, and I hate wearing a watch. I’m also not very good at carrying my phone around with me at all times, but waiting for those calls, I might have to. Some days, I just like putting my phone down and forgetting about it for a few hours. Oh, and because I have IBS and it can turn into Crohn’s (IBD), I also have to test for that, but that doesn’t seem as scary as it did back when I was first diagnosed with IBS; compared with all this. I also want to get a walking pad for days when it’s too hard to leave the house and to keep my leg strength up. For me, I’ve always loved exercise, so it’s frustrating when you’re not able to do as much as you used to. I feel like I am grieving the person I used to be.

Anyway, in good news, my iron and B12 are finally back to normal, so we know neither of those are causing any of these issues. I am trying to find the humour in all this because I know somewhere there will be some; the stand-up comedians always know how to turn these things into great laughs. I’m envious of them. I don’t know if I could ever stand on a stage and be funny. I think I have more of an "observational" type of humour, where I make a joke at just the right time. At least we finally have some answers, just not all of them. So, it’s more specialists, more being poked and prodded, and more waiting.

I do feel very grateful to be self-employed now (bar, doing my own taxes) and running my blogs and social media – as well as having a super supportive partner and the best doggo. If I haven’t reached out to you or I’ve cancelled plans or haven’t been as talkative as I might be, this is why. Or if I haven’t “shown up” in the ways that I should, again, this is why, and I’m sorry. I’m not doing it on purpose. We’re just dealing with a lot right now. Invisible illness isn’t always obvious to others, and we don’t always know what someone is going through. I am guilty myself of judging others without knowing the full story.

If you read this, thank you for taking the time to do so. I don’t want people to feel sorry for me; I just want people to understand what it’s like to go through something like this, more awareness, and for people to know that I’m okay, I’m just scared.

Ash xx