A Day In My Life Photo Challenge for 30 Days Of RSD/CRPS Awareness, June 2013
Day 19 – A picture of you and your family
Like many CRPSer’s families, mine is a bit sparse these days. 😦
Various problems occur within families with this condition such as…
– disbelief about pain levels (the ‘not real’ error)
– disbelief about the genuine body function requirement for painkillers (the addict error)
– a health picture that is just way too big to comprehend
– a health picture which changes over time as we find out more about it (the changes in our own understanding can make our condition seem less reliably real to others sometimes)
– just too severe for close ones to cope with (seeing a loved one in pain can make some people distance themselves)
– or, as in my case, neurological deterioration is noticed but not known to be a serious part of the whole at the time. Misunderstandings are pretty much a dead cert’ when the CRPS neuro-psych’ deficits are in the mix. (a two way ‘what the…?’ confusion which is tough to resolve when memory and processing are compromised). (I wrote a bit about experiencing cognitive changes here).
These are just a few examples of how patients lose their loved ones when they need them most. It’s also why we are so grateful for our fellow patients around the world – they understand the condition and are there for us when many others just cannot be.
I was initially shocked at how many people had also lost family members, but I have come across this so often now through talking with fellow patients that I now sadly see it as a common part of living with the condition. Those who stick with us, or at least keep in contact, are a rare breed. So, if you’re a family member of a patient, please know that you are a rarity and that no words can truly suffice to describe how much you mean to your loved one with CRPS. In short, you totally rock, and on their behalf I truly and hugely thank-you from the bottom of my heart, xoxox
And to those fellow patients who breathed a sigh of almost-relief whilst thinking “phew, it’s not just me”, yes – you are not alone my lovelies, and it is okay to talk about it.
This kind of thing can all too easily become a taboo subject, especially when us patients don’t really know what happened anyway because it’s really tricky to talk about something when we don’t really know what happened ourselves. But I don’t want to you feel alone, and I don’t want you to have no-one to talk to about it. A subject is only taboo for as long as we allow it to be, and allowing it to be can get in the way of healing. Today’s challenge was so specific I have found myself breaking that taboo. I hope it may help some of my fellow patients out there that I have done so, xox