Finally, some good news and I'm grateful to be getting the right support once again:
It took a few hours of phone calls but I managed to plead the facts of my case and PIP have accepted my mobility impairment and I've been awarded mobility pip again.
Thank you everyone here who helped with my confidence to appeal their decision (I wasn't going to) but it's not really our, nor the decision makers fault, that I can't take any prescription medicine because they simply don't work and make me worse.
They're accepting my cannabis use for pain management and I have a cannabis professional Dr's appointment on the 23rd Oct. Cost me £50 but it's worth it.
I sent over my pain connect clinicians letter as I don't have involvement from rheumatology because my condition is incurable and it would waste NHS finances, like it did when I was constantly in and out of hospital with the opiates/opioids.
I have a referral to a hospital pain clinic and I'm taking on additional excruciatingly high amounts of pain to manage my disability and mobility and focus on trying to get as close to 'an abled bodied life ' as is possible.
I can't change my disability or the fact it severely impairs my ability to move or manouver but with the right pain management (cannabis/cannabinoids) I've successfully managed to improve my health despite the additional sacrifices of taking on and enduring more pain.
Pacing oneself is the key, as is additional rest days when necessary! Slow progress but still progress, I can't do what others do but I can try my best to navigate life with this disability and the right support is everything.
I replaced my prescription meds that weren't working with cannabis having done some research into EDS and cannabinoids, finding it reduces the inflammation markers that become raised in my blood.
They weren't willing to accept the cannabis and I even told them yes it's illegally obtained even if it is used legally for pain management, as clinics are so elitist and expensive, and I can't take any of the many variations of opioids, anti psychotic and anti depression meds they offer for pain conditions.
Pharmaceutical drugs just don't work and make me worse, and I was on such a ridiculously high amount of drugs which made me less of a problem or a burden for others but I was still in bad pain and still in and out of hospital and it's all in my pain clinic and medical files about the struggles.
Maybe my body doesn't break down pain drugs the same as others as lidocaine doesn't work and that's one scientific explanation that's a possibility but I should not be penalised because I can't afford to legally obtain weed despite using it legally for pain management.
Anyways I know this is a lot, but I just wanted a safe space to share my situation and let people know to provide as much evidence as they can and to go into specifics when it comes to complex or dynamic disabilities because we definitely do NOT fit into the boxes required on paper, we're basically a loophole in the system and although this needs to change and I do hope it does change, it hasn't yet.
Stay strong, I fight depression as well as my disabilities and PTSD etc but we owe it to ourselves to do whatever we can with the life we have.
Disability is hard, but with the right support (and yes that includes financially) disabled people can thrive in society, if society and the system just made a little more room for us and supported us a little more.
Take care.
Happy to share my good news.
S. xo
Kawaii Doll Decora 🩷
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