BEING PREPARED TO SUPPLY EXPLANATION FOR REASON FOR DISABILITY

[Phogan]

To those who have been following my posts, I believe I have been rambling on for approx 12 months now, you will no doubt recall that I blamed RLS for my constant falling. But it wasn't until I joined this amazing group and received the expert assistance and advice from the experienced, that I came to believe that restless legs was not the cause of my falls. Not directly anyway. But in hindsight, if I had not been saddled with restless legs, I would not have had any falls, and therefore, I would not have had so many broken bones. And to be quite honest, there was actually too many for me to count. But I shall hazard a guess that it would be in the vicinity of 20-25 +.

You see, I have had RLS since childhood and I don't remember life without it.

I laid in bed every night from about 5 to12 years of age kicking constantly

I would continually kick and kick and kick, cry and pray for God to please, please, cut off my legs, I promise to be good. I seriously thought that it was for some kind of punishment.

I won't go into further details as too long a story for right now but at 12 I conjured up an action that allowed me to move in conjunction with my legs and then of course as an adult I was able to get out of bed and walk around the house for six to eight hours.

It is because of all the constant kicking that I have damaged my knees to the point where I have been told by my orthopaedic surgeon that I require total knee replacement surgery on both. My ligaments and my cartilage is a totally stuffed.

I forget where I was going with this story .... oh yes. I think the question was how does one reply and respond when one is asked the origin of their sometimes noticeable disability.

It is quite obvious to the observer, (or even the unobserver), that I am quite disabled. I need a walker to secure balance, but sometimes I can manage with only the cane.

3 years ago I underwent an arthroscopy on my right knee but unfortunately, I was unable to execute the physiotherapy as the pain was excruciating with both my knees swelling up to twice their normal size, turning red and being extremely painful. There is more to the story but this is not the time and I have gone on for long enough.

The point that I think I am trying to make is that I almost get asked on a daily basis why I am like I am, so I have to be ready with a feasible reason and that's why I have had my explanation at the ready.

[M_argi]

Is this explanation to someone medical or important or just to anyone that asks ? Because my answers would be at different ends of the poles of politeness as well as content 😁

[Phogan in reply to M_argi]

To those who I believe would understand

[M_argi in reply to Phogan]

Well firstly, if you were to say that medically RLS isn't yet properly understood in the science so it is quite difficult to explain . I tend to say that my brain doesn't sort out what the nerves are relaying to it and so I suffer greatly with pain on a daily basis but also have other illnesses which are complex , basically it's like an overwhelming feeling of discomfort (discomfort being not a strong enough word) and in turn my body tries so hard to deal with this mentally as well as physically that it depletes me of energy , also in your case ,the nature of your illness deprives you of total recovery from any procedure or surgery undertaken .

I have been refused surgery unless it's imperative because I have only 30% success chances due to fibro being aggressive , so I am finding it hard to explain such things also , but with the people that care , they tend to have more patience and put me at ease anyways

[Hidden in reply to Phogan]

Hi Phogan.Me again.Should have readother posts first. My reply is geared toward nosy people not to people who want to know so they can help. Sorry if I misunderstood.

[Hidden in reply to Phogan]

Just a question:

Who are «those who I believe would understand»?? Nobody can ever fully understand, so what is the point?????

Unless you are asked by someone who genuinely cares and tries to understand, I would not waste your energy (especially if you don’t have enough to begin with).

[Hidden]

Hi Phogan. You have certainly had more pain and suffering in your life than is fair. Certainly much more than me. It's hard when people don't understand why someone may be different than them because they assume you bear the responsibility of explaining who you are to them. For me, I have finally decided I am the way I am and they need to be who they are. I'm rambling but I have grown up not matching anyone else in the household. I saw a movie -Easy Virtue' (from a Noel Coward play) some time ago on DVD and I have taken a line from the movie that I now use instead of trying to explain myself. The actress (Jessica Alba) was trying to fit into the family she had just married into and having a hard time with her mother-in-law (Kristin Scott Thomas). Finally in one scene, she just answered. "This is the way I came off the assembly line" and left it at that. Now when someone is badgering about why I think or do things differently I use that line. It usually stops the conversation. I don't know if this post helps but I love this line. One other thing I sometimes say when questioned about why I do something differently than another is"This works for me!" I figure at 74 (next week) I no longer owe anyone explanations about myself. And neither do you! We're both fine just the way we are. Take care irina1975 (previous user name last year Burma PS The actress was Jessica Biel not Alba. (just wanted to be accurate(

[Phogan in reply to Hidden]

Brilliant line

[Hidden]

Hi Paddy!

I am going through a very trying time right now where I’m just exhausted overall (namely of explaining how utterly exhausted I am because of this RLS). Some good advice I was recently given is to quit feeling like you have to explain yourself to others. You are who you are and people need to respect that. If they can’t, that is their problem. You do not need to explain yourself to anybody!! Doing so just increases your anger with the world.

[Phogan]

Somewhere you lost me or visa vesa. I have been on a Total and Permanent DSP since 2002.

[Phogan]

Understood