So its been a while since I posted a blog and really since anything else has happened with Thrombosis Support- but as the title of this post suggests, it isn't that it isn't moving forward, it is, it's just I really want this project to work and therefore thinking and taking the time is key.
HELP ME, HELP YOU, HELP OTHERS HELP THEMSELVES
The end of last year was one of acceptance and not exactly the easiest. As you may know from reading some of my other posts, I was diagnosed with DVT and PE's and now Post Thrombotic Syndrome following surgery where I was not given the blood thinning medication I needed nor any information about the risks of thrombosis, a case is open against the hospital in relation to this.
One of the conditions of acceptance of liability from the hospital was to see Mr Paes a top vascular consultant. I was pleased to see him, to be given the opportunity to see a top consultant in this field filled me with hope, I thought if I was able to see the best he would be able to give me the answers I wanted to hear, to tell me what the cure was, what I could do, what others could do to make all this go away and for me to go back to living the normal life that I did before without any restrictions. I didn't get that. He was very frank with me, and he was able to fully explain what my condition was and for that I was grateful to have the time to ask questions and to be given the truth. He told me my condition is permanent and that I should stop searching for cures. He told me as the damage was in a deep vein that there was nothing that they could do. He told of research in europe where surgeons tried to fix a damaged valve, only to cause a further DVT, and we know the potentially life threatening complications that can come with that. He told me that it was like an incurable cancer and I needed to learn to live with it and not let it get me down. All very sane, frank advice, but all a bit much to take in and on board.
Those of you reading this who know me, know that I do not dwell on things and no matter what knocks I have had I have always tried to get back up. I had been trying so hard previously to be positive I was not accepting that this was is, when people asked me how my leg was I'd always reply that things were getting better, if anything to alleviate their discomfort of the situation. But I couldn't run away from it anymore, here was a man who has spent years researching into venus thrombosis conditions telling me that there is no hope.
Now don't get me wrong I am okay, and I am not trying to seem over dramatic here as generally I know I can lead a pretty normal life, but I felt his words take the wind out of my sails and a need to really take in and accept what had been said, my mask of false hope was removed, this was it.
What I think I have found most difficult is the feeling that I am carrying around a ticking bomb. I have Post Thrombotic Syndrome, I have two genetic blood clotting disorders that make me more prone to clotting, I have had DVT and Multiple PE's. My leg swells up if I stand or sit for too long and if I don't do something to stop that swelling to drain that blood I am at risk of clotting again. I wondered is this what I'm going to die of? Will I eventually have a careless day where this just takes over. I expect we all have things happening in our body that if we don't take care could kill us but is knowing and feeling it a good thing?
The reaction of others can be tough too. "Will you always have to keep you leg elevated?", "Oh thats awful but it will go away right?" "I don't believe thats true things will get better."
I think sometimes it is because people don't know what to say or they don't want to believe it and I feel like I need to say it is all going to go away to save them but it won't.
If I have learnt anything this last year it is that to truly be able to move on we must have acceptance. Maybe one day in my life time something will be able to be done, but for now I need to accept that this is my life. That I am unable to travel too long on a train, to sit in a cinema without taking a stool, to stand for long than a couple of minutes, to work in an office, in a shop, in a restaurant, to sit at dinner without having my leg up. That when I get married I may need to have a stool so I can put my leg up while I say my vows (it'll certainly be memorable!) But having said that I am still here, I could have not been and there is so much that I CAN do.
My next stage with Thrombosis Support is writing to two local hospitals and my MP to get the support groups set up. I am lucky that I have an amazing man who I can speak to about all these thoughts, a therapist and a great group of peers at college (I'm training to be a therapist). But so many people don't have that. When I went in to have knee surgery I was a healthy independent young woman with a bit of a gamy leg. Fast forward two and a bit years and everything has changed. I needed that support group, I still need it. I have good days and bad, living with a chronic illness can be debilitating, and from the stories so many of you have shared Thrombosis can have such a huge impact on life, it can take it away mercilessly and fast with no explanation leaving grief stricken loved ones. We all have times when we need support and I want to be able to provide that.