I had my final INR check a couple of days ago before I come off my warfarin. It’s five and a half months since I was diagnosed and I’m still struggling to comprehend and cope with it. A lot goes on in your mind and I’m hoping by posting this that maybe it will help both myself and other people understand it a little more. It might not. It might just read like the insane ramblings of an idiot but it’s got to be worth a try, right? If you read this just be aware that if you want to at least try to understand or empathise then hopefully this will help but if you don’t you’ll probably just read this as someone whining or making up excuses.
The biggest and most obvious thing with a blood clot is the physical side of it. This starts with the symptoms which can be different for everyone. Weirdly my main symptoms started after diagnosis though I’d had small ones for at least four weeks previous. It started with what just seemed to be a pulled calf muscle; not particularly painful but more annoying than anything. Two days after diagnosis I got the classic symptoms of a swollen leg, a red mark where the clot was and severe pain. This led to six weeks of being unable to walk without two crutches and even then I could barely make it from the bedroom to the bathroom for a couple of weeks.
You’d think it would get better but it doesn’t, not straight away at least. I can walk more or less normally now which I’m very grateful for but even that has its limits. Some days walking is the only time I feel comfortable, other days it doesn’t help at all. Most days I just get twitches and twinges in my leg or a ‘fuzzy’ feeling. Not pain as such but discomfort and just an odd feeling that can’t really be described. I can have it up, bent, stretched out, it makes no difference, just moves the discomfort. I can be walking perfectly fine one minute then limping the next then be back to normal again. I’ve just been to watch Logan and spent most of the two hours I was sat down fidgeting every five minutes or so moving my leg about to try and relieve the weirdness. I have to get up and move about regularly when sitting down for long periods of time such as work but sometimes the leg feels so odd I just don’t want to but I also don’t want to just sit there. There’s also the potential for post thrombotic syndrome where you suffer the physical symptoms for the rest of your life; this is why I wear a compression stocking every day for the next two years to try and minimise this but it’s still not a guarantee of not developing it.
It’s not just in the leg either. I can get wheezy and out of breath even though I’ve been lucky enough that my clot hasn’t travelled and turned into a pulmonary embolism. At least not that I’m aware of; maybe I’ve been more stubborn than I should’ve and haven’t been to get checked out when feeling a little wheezy. I also get tired far more easily than I used to; every evening I’m ready to go to bed around 20:00 though I force myself to stay up just for the sake of spending time with my boyfriend. I’ve never been able to sleep in or take naps but on a Saturday now I regularly don’t get up until past 8:00 (late for me!) and will go back to bed for an hour or so in the morning as well.
Mentally and emotionally it’s a rollercoaster. For one thing apparently many blood clot survivors end up with PTSD. Fingers crossed I don’t end up with that one. I’m not a person who suffers from highs and lows; most days I’m a fairly happy person and it takes a lot to upset me and also a lot to truly excite me but I have been more emotional than usual since diagnosis. I’m close to tears far more often; just this week I had a breakdown at work. I can generally keep these hidden and out of sight unless I’m at home in which case I’ll just let it go. My leg is constantly on my mind with all the twitches and every little catch in your breath makes you wonder if it’s a PE. It’s a terrifying thing to hear that you have a life threatening condition; in some ways it’s made all the worse for there being no time limit on it. In a very odd, morbid sense I feel being told you have cancer and only have six months to live would be better as at least you have a vague time frame there, though of course it is often wrong, but with a clot it may never do anything to cause my death or I could have a heart attack or stroke before I even finish this post. It’s completely unknown.
There’s also the worry of being on anti-coagulation treatment. The treatment itself isn’t a worry for me and I’ve had no major side effects from it but you do have to be more careful. If I was to cut myself whilst preparing a meal I’d bleed longer than most people which probably still wouldn’t be an issue but of course if I got in a major accident I could bleed out far more easily. This is why you have to carry round your little yellow book which has all your treatment information in it. Just in case. I also bought dog tags that say warfarin on them as I figure if I did end up in an accident and unconcious any medical staff on the scene are going to be worried about treating me and not rummaging through my bag just in case there is a yellow book; if they see my dog tags then they would go do that. Then of course there’s the worry of when I come off it; will I clot again? Will the genetic tests show anything and would I prefer it if they do? I may end up on warfarin for life in that case but is that better or worse than them concluding there was no reason for it and just leaving me to get on with it and hope I don’t get another?
I’m very much a people pleaser as well so I have added to my emotional issues by worrying about everyone else bar myself. The clot came at a terrible time as far as work goes; our company was just in the middle of being bought out and integrated into another company so we suddenly got a hugely increased workload combined with new team members who needed training. That would have been tough enough to deal with at any normal time but add that on top of trying to cope with a DVT diagnosis and it’s been a nightmare. I’ve been trying to stay up to my usual standards of work plus juggle my new found health issues on every scale and it hasn’t been at all easy. Again I’ve been very lucky there as I’ve only actually had one day off work which was when I went for initial diagnosis; I was able to work from home for a couple of months and have since been back in the office with a very understanding and supportive manager who is happy to let me go to my INR checks and walk as often as I may need to. I’m pretty sure plenty of people in the office think I’m weird or just slacking off when I’m wandering around. Or maybe I’m just paranoid and no one is thinking that. In my personal life I have to constantly reassure my parents that I’m ok as they’re in another country and not just round the corner. When I was initially diagnosed they wanted to come over to look after me but I didn’t want them fussing around or getting on my boyfriend’s nerves but at the same time didn’t want to make them feel unwanted by saying no.
The toughest thing of all is the lack of knowledge, understanding and empathy out there. In the medical field it still seems so few can give any real advice, treatments seem to differ all over the world, even in the same country. Diagnosis and end of treatment seems to just be a personal preference of the local health authority. Some places do scans at the end, some don’t. Every survivor seems to have a totally different story, different symptoms, different recovery rates. So many who have never had a clot thinks “it was six months ago, you must be better now, get on with it” or they know someone else who had one and “they were fine in a couple of weeks so why aren’t you?” It’s not that simple. I wish it was. There’s a lot of judgement out there and a lack of understanding or willingness to empathise. I hope I haven’t gone on about it too much; I try not to and generally only mention it when asked but I still have that feeling people are bored of it by now. Those who were so concerned in the start just don’t seem interested most of the time now. Of course there are some who still care and for those I am very grateful.
That all seems like a whole load of whining and feeling sorry for myself up there. Maybe some of it is. What I can say though is that in a weird way I’m actually glad that this has happened. Don’t get me wrong, I’d rather have never had a clot at all but it has taught me a lot. It has taught me who I can or can’t rely on, what I am capable of overcoming and what is truly important in my life. I hope it has made me a better person; I know I have been judged by others, seen to be ‘milking it’ or just making excuses to, for example, avoid social events but people don’t know what is going on behind the scenes, what you’re hiding and actually suffering through and so I now hope that I don’t do that to others. For example I get annoyed when walking behind slow people but you know what, I don’t know why they are walking slowly. Maybe they too have a clot or some other invisible condition that means they can’t walk faster. Maybe they’re just enjoying the weather. Maybe they just lost their dad and are trying so hard not to break down that they can’t put the effort into walking faster.
We all need to remember that. You don’t know what is going on in someone else’s life so keep the harsh words to yourself, try to understand what people are going through, try to ease their burden. Life would be a lot nicer if we did that.