How The Lord of the Rings gave me some clarity to the way Behcets disease makes me feel.

[Blearyeyed]

I am just sitting here , enjoying a little bit of geek time , watching the first Lord of the Rings film.

If you haven't seen it or do not know the story , I have reached the part when one of the Lord's , Borodin ( excuse the spelling) is in a fruitless battle against a gang of Orcs who are stealing away the Hobbits so they can get that infamous ring.

As I watched him being pounded , in slow motion , with arrows , I suddenly thought, you know what that is exactly what I have felt like over the last ten years.

Slowly over time my body feels like it has been shot with arrows.

Just as you rebound from one arrow, another comes in an hits another part of your body , you start to cope with the injuries you have you think you will get up , survive and regain your feet , and then another and another , until finally you are down on your knees , struggling to help yourself , let alone help those around us.

I am now lying there like Borodin, hoping that some day very soon , a doctor will come in like Eragon ( the real hero) , find and battle that Orc that wants to bring on my doom and finally chop the head off it . Hopefully, before I reach the tearful end of the long suffering Sean Bean!!

Now , you think that this moment of clarity , as depressing as it sounds, would have me sitting feeling down on the couch.

But No!! Why, because good old Gandalf , the wise counsellor that he is , points out to those crying Hobbits a very important thing. That we all only have a certain sum of time and it is up to us to make the most of it , no matter how dark and dire the circumstances.

I know I still have along way to go , just like Froddo, the path to getting help is still long and full of terrors ( sorry I just seemed to have crossed genre into Game of Thrones) , but despite all the injuries , doubts and false directions my way to getting the right help is being pushed in, I know I must face them and I will get what I want in the end.

So thanks , JRR Tolkien, Peter Jackson and Sean " nearly always dies horribly in a film " Bean , you have inspired me to fight another day.

[TheHud]

My goodness Bleary, that's deep and somewhat rousing

I am more like the Black Knight in Monty Python The Life of Brian. Bits get chopped off but I stupidly fight on until eventually I am left, still shouting "come back you cowards". All I have left is my head and to be honest I am too stupid to realise that's all I have left.

But Seriously!

I was thinking about this the other day. My eternal quest has changed, it's no longer for a a fix, not even a reprieve, or a halt, these days I would just settle for one main diagnosis, I would like my old diagnosis back. However, what I realise now is that even if someone did finally give me the treatment that was denied me 11 years ago, to halt further damage now. Treatment that would have stopped my spine falling apart and my joints deforming, when a Rheumy took my RA DX away. It's not going to make me any better, infact the side effects may very well make me worse. I am at the stage were I need an op. I need my immune system kicking in the teeth (with the right meds, the good stuff) so I can get well enough to have an op and fix my spine. Which means getting a DX on whatever else is going on now. One objective from now on.

So I am the Black Knight and the main advantage, I am accepting, is that once they chop off your metaphorical arms and legs (nerve damaged cord relays) and you can no longer move much anyway, the pain from other nasties does start to reduce and become more of an annoying tingle My worry is the tingle brings me and my cord closer to a permanent non metaphorical loss of arms legs and other bodily functions

So fear not fellow warriors we are all made of really weird stuff and will always see rainbows in oil slicks

PS. Why does Sean Bean always have to die? Especially in Game of Thrones!

[Blearyeyed in reply to TheHud]

I know it is very annoying.

If you get the chance there is a comedy band ( originally included the great Mike Harding ) called the Bar Steward Sons of Val Doonican who have made a really funny song called "Sean Bean" , all about how he dies in nearly every film with a video of all his different death scenes and funny bits.

It may not make your symptoms or your situation feel any better , but at least it gives a good reason for all of his untimely deaths.

Thanks for adding a reply. Pass word around in the group about my post , I would be really interested to hear if the feeling rings below with others in the group too, or what having disease reminds them of.

Have a great day young Hobbit!!

[belle623]

Blearyeyed I love it! I mean not that you feel that! bc I totally get it, but I appreciate you analogy.

Here’s to another a day! And some more geek time

Ash

[Blearyeyed in reply to belle623]

Thanks , glad you appreciated it and I hope it brought some amusement in the daily grind of Behcets.

Pass word around with your Behcets chums and others .

I would be interested to see if it rings below with others or wether they have some other interesting descriptions of how disease make them feel too.

Have a good BD day ( you know what I mean)

[lesleyg]

I read your post with a smile and thought the same as Ash - what a great analogy. I think if we can all latch onto something positive it can only help.

Had to laugh at TheHud and The Black Knight. My Dad has been very sick all his life (no not BD) and we ended up likening him to the Knight because he would deny whatever happened to him even including a leg amputation. And yes I started to see similarities in myself. Hope that makes sense. 😊

[Blearyeyed in reply to lesleyg]

Hi Lesley,

Glad it raised a smile for you.

I try to see the lighter side when I can , although I must admit it is getting harder as time and the daily "arrows" come along.

The analogy might be amusing to read but in all seriousness that seems to be how many of us seem to feel when a flare up hits.

I think I am going to show it some other healthy people too , so that they can visually see in their minds what it feels like when I am not myself.

Then when they ask how I am doing I can say , " I am having a Sean Bean moment!" and they will instantly understand.

Glad to hear you have been having some improvement lately, let's hope it keeps up.

Take care