Monday, February 11, 2013


  oh my! I knew a dr who had spine surgery and she told me to never allow that. I have also known others have it who say the same thing. Only one I know had aand she doesn't regret it BUT with her it was have it or not be able to walk. For her, she can walk, but like me is in constant pain.

At the risk of sounding self-pitying, I really don't understand why people don't understand that being in 24/7 IS disabling. It means one is disabled. I am not able to live a normal life. Disability doesn't just cover para or quadriplegics or the mentally affected. Frequently not being able to dress myself, frequently unable to get out of bed unaided, always unable to walk unaided, and mostly in a wheelchair for any distance more than in my house. In my house I tend to okay because I usee furniture and walls to balance myself. Plus if you are visiting, then I ma okay that day so to you, unless you really know me, I won't appear to be what most term disabled. This govt have made is so we are the targets of resentment and bitterness from others now.

 I feel guilty on my good days. Two weeks ago when i seized completely and could barely move and had to ask for outside help to get my meds for me, I actually felt PLEASED! Pleased because I was really suffering and this showed just how disabled I am. That is stupid! On my good days I feel guilty. I feel I am not earning my disability!

How many people go to the pool in their pj's? I do because if I get undressed to get dressed, to only get undressed and dressed again, I wouldn't be able to swim!

I feel guilty doing what i enjoy-dog shows. Never mind the 2.5hrs I need before I can leave my home, never mind the copious amount of morphine I need, never mind the two days recovery I need, with the first spent in agony, pills don't help much on that day. Do i complain. NO! I enjoy the show so i pay the price. That price though alos includes nasty minded people being extremely
 unkind which i did not even think about because that is not how my mind works and despite my background I am still shocked by the mean spiritedness of some and by my own naivety. 

During this cold weather, I am BORED! I went out today with John. We went into a supermarket type shop. I was very stiff by the time we got back to the car, not because I walked, but because it was cold. I get cold very quickly and cold leads to pain and stiffness and the inability to move much at all, thus more cold. Still, I went to Panini's with John, dragging out as much time as I could OUT of my house. Even with all I can do indoors, the dogs, music, tv, dvd, the iMac, FB, I still need to get out! 

How anyone in their right mind can think i am able I have no idea. How normal is it to take 2hr43mins to get up and shower and dress and ready to go out?  On a good day? (we had to time it for the tests).
Or is it I am too happy to be disabled? Too upbeat? Too independent. I don't ask for help at shows? Unless I fall over then I have no choice. Perhaps people forget about the times I fall over. Both in the ring and out. 

yes, I do handle all this well and no one likes a moaner but then one gets accused of being a fraud, a liar precisely ebcause of having the attitude that is good! 

What is the point of moaning and cry and ranting? It won't make me well.You know what i did when i was first diagnosed properly and knew I was fucked with no chance of getting better? I got in my car and DROVE to OSLO, NORWAY! It was November. It almost killed me and I was in agony most of the time and I was only fit enough to walk up and down, once, King whatever his name is street. But I DID it and knew I would never be able to again. And here I am 8 years later and I no i can't drive to Norway again. The IMPORTANT thing is that I drove to Oslo, Noway. I got see Norway, a little. I think that is amazing even if others see it as proof I am fit!

So i still say f*ck you to those who would do me down. i refuse to be miserable. I WILL wring every last ounce of joy out of my life. 

I may have severe problems with my body and be limited by it but YOU have severe problems of another sort and they have crippled your soul.


Dan and Julie in San Diego said...

Hi, Colin,
Ignore stupid, mean-spirited people. They have a problem between their ears and you do not need to react to it. It's their problem. Let it stay their problem. Do not take it on by trying to justify yourself. Your disability is between you and your doctor and does not involve them. How do I know? I am disabled. I, too, get around as best I can with help and enjoy myself. I do lots of things because my husband drives me. I recently gave an experience at a Buddhist meeting about how I chanted Nam Myoho Renge Kyo to get through a rough patch in life. The person organizing the meeting asked me not to mention that I am on disability, so that the sour pusses would not be offended. I ignored them all and told my story in the most natural way to me. The room loved it. When you are defensive they smell that and it is a cue to attack, I think. So hold your head up and do what is the best for you and ignore the sour pusses.
Julie in San Diego

Unknown said...

Dan and Julie in Dan Diego - thank you kindly. You are right of course.