Subjectivity — Scope | Disability forum
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Topkitten Member Posts: 1,285 Pioneering
In another thread it was mentioned that pain is subjective and also that it is often down to the mind's interpretation. I would agree with both of those statements and I use them ALL the time to manage my pain levels. People often ask me how I do it, how do I walk about with my stated description of the horrendous damage to my spine. That is when they don't flat out disbelieve me as the damage is completely invisible from the outside.

Tbh I don't know how I do it.... I just do. That and a big stubborn streak has kept me walking despite taking levels of pain medication at which point everyone gives up on the idea of walking at all. Even now when, if I walk around the house, I completely exhaust the supply of medication supplied by the patches at any given time and suffer withdrawal symptoms in addition to the full pain levels.... I still keep walking. I have learnt that it is possible to push the pain away for a while and deal with the effects later. The biggest problem I cannot get around at the moment is that because the pain levels are so high even when I do nothing I find myself being much less accepting of others, the excuses we all make to explain why we can't do certain thing and those I see breaking the rules regarding their definition of disability which does not correspond to the help they are getting unfairly.

All I can say to those experiencing debilitating pain is just to try to keep going and don't listen to others that tell you you cannot do something.

Whenever I see a new doctor they read the one line description which says "wear and tear of the spine". I get immediately misdiagnosed as having crumbling spine and then accused of being on too much medication for it and listening to them prattle on about how it should be reduced. When I try to explain the actual problem about 50% don't believe me as they have never heard of such a thing, ergo it cannot exist. About 10% listen and try to understand but only 1 or 2% will actually try to help. As far as excuses go for not helping I get the "guidelines state...." or "well, everyone gets used to opiates and needs more, so you should have a break. I even had an "It's against my principles to...." on one occaision.

This is how GP's work...... they diagnose the problem. If they know it is beyond them they refer you to a relevant specialist for tests. If treatable then they either look up the script to follow or simplr start it because they remember it (for common complaints). Someone once told me that doctor's deserve respect and one should always do as one is told. Respect is earned not given. I respect a doctor if they listen and try to understand and especially if they try to help, not otherwise. This is why they will sometimes tell you that you cannot do something. In most cases people will believe them and then find it impossible to do it, the mind is very powerful.

I don't know if this will help anyone or not but if it makes people think then it was worthwhile.

For anyone curious..... I suffer pain equivalent to 8 or 9 slipped disks but little or no back pain. The neural damage in one leg feels like the leg is on fire (yes, I did that once, lol!). The pain from the neck damage affects neck, shoulders and arms. The pain from the thoracic and lumbar damage affects legs and hips. Sciatica in both legs is a daily occurrence and the neural pain never stops... EVER! I simply ignore most of it to do whatever has to be done. The opiates I take are 6 times higher than any cancer patient that recovers uses plus I take between 11 and 19 other tablets per day in addition to the patches I wear constantly.

If there is something you want to do then do it, don't think about it just try to do it in such a way as to minimise the suffering.

"I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.


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