From Another Perspective…

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…

Jen

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18 thoughts on “From Another Perspective…

  1. I too am a fellow suffer and blog on here, I think it’s amazing that you have done this blog, as it shows others what’s it is really like for us and our partners, as you suffer too and people often forget that. I will share the link on fb to try and get more people to read this. I’m glad Jamie has your support all the best to you both love Angie xx

    • *Jen* Thank you for your reply 😀 I’m a little bit overwhelmed with all the responses (in a good way)… I didn’t think that anyone would read, but I’m glad you have… Thank you 😀

  2. Hi Jen, we know what you and Jamie are goin through, my daughter too has this horrible illness…… and has had this for many yrs now, this affects the whole famly, but more so the person, as changes there life and their life choices…..Heather xx

  3. Hi Jen, I can’t pretend to know what Jamie suffers because I had never heard of this condition before I clicked on your links. I suffer from daily pain myself and my mobility suffers too as a result. I am not comparing my condition with Jamies but I do know of the kind of pain and the effects constant pain have on your physical and mental well being. I cannot comprehend what Jamies condition does to him but I hope someday something can be done to allieviate his discomfort and pain. I still don’t understand much about Jamie’s condition but thank you for sharing your story.

    • *Jen* I think you probably have more in common with Jamie than you think. I think the hard aspect of having mobility issues and pain conditions is that the conditions affect individuals differently. The main common thing that links you though is that your conditions are very insular and there is a massive lack of understanding and compassion from people that can get on with their daily lives. Thank you for posting 🙂

  4. Thank you all for the lovely comments regarding Jennifers post, im blessed to have such a wonderful partner who not only is just that she is also my rock my soul mate and my best friend xxx your comments are appreciated by us both xx

  5. Hey!
    Jen, I want to thank you for sharing your experience as a caregiver,and significant other who is a fighter of multiple chronic pain conditions. I am 25yrs old and I have been suffering from CRPS in both feet,and now both arms. I also suffer from 2 other pain conditions… When you were discussing the struggles of daily life, and your concern about things when you are at work.

    It brought me back to Jan 11th of this yr, when my father came home to 3 firetrucks and 2 rescue squad trucks, with me on a stretcher. Due to all the medications that I was on, I had a grand mal seizure in front of the UPS delivery man. It turns out, I was unresponsive for 30min. It was the scariest moment of my life, as well as my families.
    This whole time, I have just been miserable, being trapped in a prison that is caught on fire…that prison is my body.
    I haven’t really been able to sit back and actually think about how this is affecting my loved ones,at least not to that extent.
    I want to thank you for sharing your side of the situation, it has opened my eyes, and helped me realize that I am not the only one suffering in the equation. Although, I feel like we are left in the same dilemma… How can we (as the ones who are in pain), help you? The last thing we want our loved ones to feel, is helpless..
    Without people like you, (our support), we’d be lost.
    Hold on to hope. Hope that they will finally find a cure…. or at least a damn treatment that works wonders! (excuse my french)
    I’d like to recommend a website to you two. They provide the latest info on crps, they offer support, and much much more! They even have weekly chat rooms that both of you two are welcome to join. My mother has actually found them quite helpful. the site is http://www.rsdcrpsdoesntownme.com/

    If either of you would like to contact me for anything, my email is mmorheather@gmail.com .. i own this website ( hopeforyourcause.org and letsrocktheribbons.com )
    I wish you both the best, and I wish you both pain free moments!
    Love,
    Heather Lynn

    • *Jen* Thank you for sharing your story with us. I’m glad that it helped you see from a different side. Its a difficult battle, you are the person that needs the help and dealing with the conditions that you have is a battle in itself. Its nice that you can see that the whole family has to deal with your condition but remember, although it maybe hard for us to be helpless in the situation, we are your support and will remain that. Just the acknowledgement that you understand is all we need.

  6. Jen, I loved this post. I have full body RSD along with other neurological problems. I had to move in with my 81 yr. old ill mother so she could take care of me. I am 48, can no longer work, drive, etc. and am a victim to my bed. Unfortunately, I have lost my friendships and rely on my mom and my dog. My mom, nor anyone, can touch me. It hurts to wear clothes, etc. I admire the fact that you have not left. That you are sticking in there with Jamie says a great deal about how loving of a person you are and that you don’t feel it easier to walk away, like some of us have experienced. This is a horrible evilness and robs us literally of our lives. I can’t leave the house, only to go to the Dr. because my flare-ups happen so often and it is also almost impossible for me to walk. I am going to say thank you for this blog and I hope people who don’t have RSD will read it and hear it from your perspective. Thank you for this.

    Cheryl

  7. Hi Jen, just wanted to thank you for sharing your side of it all. I often think about my 14 year old son and my elderley mum and think it must be just so tough on them to watch their mother/daughter go through the agony of it all and of course they are suffering right along side of you. Thanks again – I think you have written a really important blog.

  8. Thank you for being so frank and honest Jen.

    I suffer from pain and the necessary evil that is medication. You have highlighted something very important to me, I don’t know how my family feel.

    They are always asking me how I am and if there’s anything they can do to help.
    I can’t remember the last time I asked that of them.

    Today I will.

    I will be following Jamie from now on and hopefully we will hear from you again sometime.

    Steven

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