It’s quite a different side to a blood clot once you get past that initial shock of it. Being told by the doctor that if you feel shortness of breath or chest pain you need to call 999 immediately because it could be fatal tends to make you concentrate very much on the immediate, physical side of your condition. After a few weeks however when it all has subsided and you’re getting used to it a whole new issue crops up and that’s how it affects you mentally and emotionally.
I’ve always been a very happy-go-lucky sort of person. My mum got really annoyed at me a couple of years ago when I forgot to take my euros over when visiting my parents because I didn’t stress out about it (I had my purse with me, I could withdraw money if I needed to but I rarely spend anything when there anyway as I stay with my parents and we’re not ones for going out shopping but walking instead). It takes a lot to bring me down or put me in a mood and even the usual monthly womens issues don’t tend to affect me. So overall I’ve been fairly ok with my blood clot news. I did cry when I first got it diagnosed because although I’d been warned it might be a DVT the nurses had all been convinced that it wouldn’t be and with not having the usual risk factors I also didn’t really think it would be. However after a 10 minute sobbing on my boyfriend’s shoulder I’ve been fine since.
However I have been reading around on the internet, not for medical advice (I’m not about to trust some random person over my own healthcare professionals) but just for general day-to-day advice and experiences and it has really opened my eyes and made me think more about how this could affect me going forwards. It has also made me realise that it has already changed my way of thinking without me even knowing.
I’ve always been quite a bit of a loner; I prefer to have a small group of friends and am more than happy to spend most of my time alone. I never really enjoyed going out clubbing or shopping with people and love to just spend time alone in nature or with someone close to me such as my parents or boyfriend provided they don’t want to talk the whole time. I look forward to my Saturday evenings as that’s when Niall goes to his friend’s house and I get to be alone; I tend to still just do the same things I would if he was there and even get bored and miss him but it’s nice to know that I have that time to myself.
Since the diagnosis however I’m not quite so keen on it. I still like things to be peaceful with little talking but I’d much prefer there is someone here with me. It’s constantly in the back of my mind: “What if the clot suddenly breaks off and causes a pulmonary embulism? Will I be able to call 999 or will someone just have to find me here?”. I don’t lock the door to the bathroom at the moment just in case something happens and I need to rush out quickly to make that call or need to shout out to Niall; our lock is one that is easy to open from the other side but I still don’t want to risk it. I am making sure I respond to every text I get even if it doesn’t need an answer; I’ve sent I don’t know how many that just state “Ok”, simply so people know I’m still alive and don’t panic. I am ok being alone, I’ve had to be since I’m temporarily working from home and Niall has to go out to his own job but I’ve definitely preferred the days he’s been here with me.
As well as the physically being alone side there is the mentally alone side. People will do their best to be understanding but they don’t realise the long lasting effects it can have. Why would they? I didn’t until I got one and started reading up on it. My friends and colleagues all understood I had leg pain and couldn’t walk as well as normal and when I ended up on crutches that is an obvious physical ailment. But once I can walk without the crutches again it won’t be so obvious even if I am in pain (and I sincerely hope I’ll be one of the lucky ones who doesn’t continue to be in pain but some suffer for the rest of their lives). A lot of people also don’t realise the huge risk if the clot does break up and start travelling to your lungs, heart or brain. They assume it’ll be a couple of weeks on blood thinners, clot disappears and hey presto, everything is normal again. Then I’ve also found out that some blood clot survivors develop PTSD; again thanks to my generally sunny disposition I am hoping that I won’t get that and doubt I will but you just never know. It certainly isn’t something I’d have ever thought of if I hadn’t read other people’s stories and situations.
Thankfully the internet is a great resource for anecdotes and personal experiences. As mentioned, I’ll always take my doctor/nurses advice over anything I find online medically but for what to expect and how to cope you can’t beat the personal tale of someone who has actually been there, done that. I’ve found a couple of great sites that I urge anyone suffering the same thing to take a look at:
DVT forum – pop on here to post questions and read up on other peoples queries, a lot of the posts are quite old but generally still relevant and there are still people posting new things
Blood clot recovery network – you can also check out their Facebook page – the story of Sara, a blood clot survivor and her work to make DVTs and PEs more known to the public to help others through this.
Apparently it’s also World Thrombosis Day next week (13/10) so I’ll be keeping an eye out to see what info or resources might be available then. I hope the links help anyone who reads this, they’ve definitely helped me a lot already and am sure they’ll continue to be of great use as I progress through this.