I’m Jen, Jamie’s wife… He asked me to do a blog for him quite a while ago, so that I could relate a different perspective to his conditions, what it is like to live with someone with such debilitating illnesses but I was very reluctant to share my experiences. I didn’t want to write about us, and to be perfectly honest, I find it incredibly difficult to read his blogs sometimes because I live it and re-reading how he feels is more than difficult, its almost intolerable because I see it and live it every day. I don’t mind him writing the blogs, I like that he has an outlet, that he has a way to express himself and to spread awareness about what he has to live through. I admire his honesty, and for putting himself out there because society, and the people that he puts himself out there to, are, in my opinion a hard audience.
Those people are you, the ones that are reading this that have probably, or in fact, think that there must be more that Jamie could do. I’m not pointing my finger at all of you because there are definitely people out there that are understanding. This is to the ones that are ignorant or lacking knowledge about what Jamie has to live like. The ones out there that haven’t had to live in intolerable pain every day of there lives, without any respite from it. And think that surely there has to be some fix. You may not readily admit you think it but I know that there is a large amount of people out there don’t really understand what exactly is wrong with Jamie. Or maybe lack empathy towards what he has to live through. I think there are many reasons for this and one of the biggest ones is really our faults. We don’t ask for or get much help from anyone, we plod along in our lives without really getting to much into depth about how difficult life really is and we don’t really go into much detail about what exactly is wrong with Jamie because, well, its really quite complicated. That and some people don’t ask.
I feel that one of the reasons that I have decided to write this blog, is to definitely give a little perspective from another perspective. I get very frustrated with the “helpful” suggestions people have that really aren’t that helpful. I suppose I can’t really blame some of them because not many people realise the true depth of the situation. And the true main reason that I have for writing this is that I would like to express what really is wrong and in turn, what that means for me, and living with someone that is never going to live without this pain. Ever.
Jamie has more than one condition and the conditions that he has not only affect his mobility to such a degree that there are times where he is completely incapacitated, but the surgery that he has had, which has inadvertently caused conditions that will never, ever be cured.
Jamie has tarsal coalition in both of his feet… http://en.wikipedia.org/wiki/Tarsal_coalition… I won’t go into the ins and outs of why the degeneration in the bones got to such a stage where it required quite invasive surgery to both of his feet. But because of it the operations failed and it turned out the coalition was further down his feet and there were other bone issues, again with both of his feet and that he needed the operations again and this time the surgery would be even more invasive.
Repeated surgery to the same areas carries a significant risk of complex regional pain syndrom, a condition which Jamie developed… http://www.ninds.nih.gov/disorders/reflex_sympathetic_dystrophy/detail_reflex_sympathetic_dystrophy.htm…
And then finally, again through surgery Jamie has neuropathic pain http://en.wikipedia.org/wiki/Neuropathic_pain.
So not only does Jamie have to contend with having complex regional pain, he has neuropathic pain, tarsal coalition for which he has had multiple sub-talor fusion surgeries which have failed on more than one occasion. And then there is the added bonus that Jamie is prescribed many drugs which he experiences awful side effects from.
Well done if you clicked on the links that I provided and had a wee look at the ‘medical’ side of what is wrong with Jamie!
I’ve watched these conditions slowly rob me of the man that I fell in love with. Jamie is an outgoing, kind, and funny. He isn’t perfect but show me a person that is! Over the last two years though the pain and the agony that I have had to watch him endure has at times made me want to cover my eyes or hide under the duvet. I still love him however it is horrendous to watch someone go through something like this. You try and stay active, outgoing, kind and funny when you can’t sleep, you can’t move and you can’t do much apart from wish that you could have both of your feet amputated. It sounds brutal. But really it is – his feet cause him that much pain he wishes they weren’t there or he wasn’t. A hideous thing to have to hear.
There are times when he can’t sleep because of the pain, or he can’t get up because his body is that exhausted because he has been up for 3 days. He can’t get out and about, he can’t stand, he can’t walk and of course that means that we can’t do things that people take for granted. We can’t just go out a walk one evening when its nice, we can’t just drive to the shops and walk about them, going to the cinema can be impossible. It all depends on whether its a day where the pain is so bad he can barely move. And these are just a few of the things that we find so difficult to do, and these are just simple wee things people take for granted.
How helpless I feel when he is being that violently ill because of the side effects from Fentanyl or some other miriade of drugs that he has to take… When I can’t help him sleep because the pain is to bad. When he is a virtual prisoner of his home because either the pain is to bad or the weather means that he can’t safely get from the door to the car.
How scared I feel when I’m at work and I worry that he may have fallen down the stairs, or just fallen and I am not there to help him up or make sure he is steady on his feet. How would you feel if you can’t even have a bath when you want because you can’t safely get in and out of it?
How frustrated I feel when I hear or have people say or make assumptions about him. Most times I don’t even correct or tell people about what it is thats wrong because why bother… Most people choose to make their own minds up about things however wrong or inaccurate they are about a situation. However, I just feel its time that people know that if he could just go out, if he could just be back at work, or if he could just get on with a normal life… He would. He doesn’t want to live like this at 30. He doesn’t want us to live like this.
Anyways… I’ve said what I want to say. I hope it does go some way towards making people out there realise that maybe they are to quick to judge a situation…