Huge positive medical success of win
This morning I received a letter containing test results from my last hospital trip. Turns out I have an extreme deficiency (doctors words) of a particular chemical. Symptoms of this deficiency include bone and muscle pain and weakness. So the plan is to pump me full of this chemical, by both injection and tablet, and cross our collective fingers.
It took quite a long time to spot, partly because medical bureaucracy but partly because they don't normally test for it. It was my rheumatology consultant who thought to check, so a big thank you to her.
At this point we're hoping that with the exciting tablets, injections, and a healthy dose of physio, I may well end up as mobile as an able-bodied adult. It's almost like being cured! I am extremely pleased by this prospect!
That's pretty much the whole story at the moment. All I have to do now is book the appointments and get the ball rolling.
Emotionally, this has been a complete about face for me. After my last set of test results proved completely non-indicative, I settled into the idea that there was never going to be an easy fix for me. I was steeling myself up to try and tackle this myself, by which I mean try and do the physio as best I could without any idea why I needed it or if it could ever work. I had a whole flowchart of a plan based around various actions I was going to take and how I would respond to various outcomes.
Now all of a sudden I have this clear and unmistakeable evidence of a real and measurable problem that causes exactly my symptoms and has a relatively convenient treatment. This was not an outcome accounted for in my flowchart! That letter didn't just bring a diagnosis, it brought a complete reassessment of my goals and expectations. I ended up half sobbing half laughing for a good hour or so.
It's not a complete diagnosis, though. The question of why this deficiency exists in the first place still has to be settled, so they're going to do yet more tests to try to rule out possibilities and hopefully prevent it from happening all over again in future.
In all this excitement, I almost forgot to be pessimistic. Despite this strong evidence, I haven't *guaranteed* that everything will be fine and wonderful. The rational motto is hope for the best, plan for the worst. So! In the event of partial success, I will, erm, take it and count myself lucky :P
In the event of zero success, I'll be mentally back to where I was yesterday. I have unfortunately already invested emotionally in the Helen Gets Better outcome, so there's no real way to guard against disappointment should things not turn out that way, so I think the best strategy for the moment is to just plow forwards and be prepared for disappointment.
(By 'be prepared' in this context I mean that, by acknowledging the possibility of disappointment to myself in advance, I can lessen the sting when it does happen, and it absolutely helps to have a pragmatic plan in place for this scenario).
As for everything else, things are mostly unchanged.
I planned to consider mobility aids come March, and that's still the plan. Given the news I will probably simply purchase a walking stick and use it to help me practice walking.
I planned to start looking for/training for some sort of employment come June, and that's still the plan. However, what kind of employment I look for depends a lot on how the next three months go. I might be able to actually go to an office! That's crazy!
I planned to start thinking about moving house in October, to be ready to move out once my contract expires in Summer 2014, and that's still the plan.. However, if that happens I need to make some serious and firm decisions about where I live and who I live with. I miiiight end up staying here, but if I do I want it to be because it was a positive decision rather than as the default fallback after failing to properly decide or consider the alternatives.
Way back when I was starting uni, my plan for this point in life was to have some significant savings from almost 24 months of full time work, and to use that plus my pre-existing money to go for a deposit on a house preferably by age 25. Now I'm quite significantly behind schedule, and it'd be quite financially foolish to move out of here for the sake of it, especially if I end up with a more expensive rent situation. So, that's a decision that needs to be made carefully.
As for the rest, I'm going to keep seeing friends, engaging in hobbies, and generally do my best to maximise utility :P If this medical thing works out, there's a whole host of new opportunities available. I want to try my hand at sports, the concept of fun and exercise happening simultaneously sounds like madness. I want to give travel a try, and I know a couple of people eager to take me places. I might even go tourist. And aside from that, there are so many mundane things that people take for granted. I'd be able to go to shops! And see movies at the cinema! And eat at restaurants! A whole host of human experiences await me once I can physically leave the house, and I have never been so eager to experience.
I don't know if I've mentioned this before, but it is so weird making long term plans again. I never expected to live this long and I never expected to live this long and expect to live longer, if you can parse that. The death wish and the depression are not gone, far from it, but I have absolutely started to internalise a long term view and it feels completely novel.
I've still got the therapy, I've still got the antidepressants, and depending on how this goes I may end up medicated for the rest of my life but, well, that was going to be true anyway. On the whole, I couldn't have hoped for better news, so massive positive happy happy joy smiles.
It took quite a long time to spot, partly because medical bureaucracy but partly because they don't normally test for it. It was my rheumatology consultant who thought to check, so a big thank you to her.
At this point we're hoping that with the exciting tablets, injections, and a healthy dose of physio, I may well end up as mobile as an able-bodied adult. It's almost like being cured! I am extremely pleased by this prospect!
That's pretty much the whole story at the moment. All I have to do now is book the appointments and get the ball rolling.
Emotionally, this has been a complete about face for me. After my last set of test results proved completely non-indicative, I settled into the idea that there was never going to be an easy fix for me. I was steeling myself up to try and tackle this myself, by which I mean try and do the physio as best I could without any idea why I needed it or if it could ever work. I had a whole flowchart of a plan based around various actions I was going to take and how I would respond to various outcomes.
Now all of a sudden I have this clear and unmistakeable evidence of a real and measurable problem that causes exactly my symptoms and has a relatively convenient treatment. This was not an outcome accounted for in my flowchart! That letter didn't just bring a diagnosis, it brought a complete reassessment of my goals and expectations. I ended up half sobbing half laughing for a good hour or so.
It's not a complete diagnosis, though. The question of why this deficiency exists in the first place still has to be settled, so they're going to do yet more tests to try to rule out possibilities and hopefully prevent it from happening all over again in future.
In all this excitement, I almost forgot to be pessimistic. Despite this strong evidence, I haven't *guaranteed* that everything will be fine and wonderful. The rational motto is hope for the best, plan for the worst. So! In the event of partial success, I will, erm, take it and count myself lucky :P
In the event of zero success, I'll be mentally back to where I was yesterday. I have unfortunately already invested emotionally in the Helen Gets Better outcome, so there's no real way to guard against disappointment should things not turn out that way, so I think the best strategy for the moment is to just plow forwards and be prepared for disappointment.
(By 'be prepared' in this context I mean that, by acknowledging the possibility of disappointment to myself in advance, I can lessen the sting when it does happen, and it absolutely helps to have a pragmatic plan in place for this scenario).
As for everything else, things are mostly unchanged.
I planned to consider mobility aids come March, and that's still the plan. Given the news I will probably simply purchase a walking stick and use it to help me practice walking.
I planned to start looking for/training for some sort of employment come June, and that's still the plan. However, what kind of employment I look for depends a lot on how the next three months go. I might be able to actually go to an office! That's crazy!
I planned to start thinking about moving house in October, to be ready to move out once my contract expires in Summer 2014, and that's still the plan.. However, if that happens I need to make some serious and firm decisions about where I live and who I live with. I miiiight end up staying here, but if I do I want it to be because it was a positive decision rather than as the default fallback after failing to properly decide or consider the alternatives.
Way back when I was starting uni, my plan for this point in life was to have some significant savings from almost 24 months of full time work, and to use that plus my pre-existing money to go for a deposit on a house preferably by age 25. Now I'm quite significantly behind schedule, and it'd be quite financially foolish to move out of here for the sake of it, especially if I end up with a more expensive rent situation. So, that's a decision that needs to be made carefully.
As for the rest, I'm going to keep seeing friends, engaging in hobbies, and generally do my best to maximise utility :P If this medical thing works out, there's a whole host of new opportunities available. I want to try my hand at sports, the concept of fun and exercise happening simultaneously sounds like madness. I want to give travel a try, and I know a couple of people eager to take me places. I might even go tourist. And aside from that, there are so many mundane things that people take for granted. I'd be able to go to shops! And see movies at the cinema! And eat at restaurants! A whole host of human experiences await me once I can physically leave the house, and I have never been so eager to experience.
I don't know if I've mentioned this before, but it is so weird making long term plans again. I never expected to live this long and I never expected to live this long and expect to live longer, if you can parse that. The death wish and the depression are not gone, far from it, but I have absolutely started to internalise a long term view and it feels completely novel.
I've still got the therapy, I've still got the antidepressants, and depending on how this goes I may end up medicated for the rest of my life but, well, that was going to be true anyway. On the whole, I couldn't have hoped for better news, so massive positive happy happy joy smiles.