Disappointment - the ultimate reality for OA?
I've been a forum follower for many years and have always posted with positive intentions of encouraging others. Recently that approach has become more difficult to maintain and I have made only occasional contributions here, being aware of the depressing effects of reading online wingeing and the apparent reduction in NHS support for people living with OA.
My most recent personal experience has driven me to accept that, except in dire emergency, (I had excellent care for an essential RTSR in 2019) there is a lack of effective help for living with OA.
My 30+ years with widespread OA find me now with extremely limited mobilty thanks to knees that are frankly past their sell-by date added to the findings of a lumbar spine MRI, which states
'L4/5 disc - osteophyte complex with impairment, spinal canal stenosis'.
It didn't need the scan to inform me of stenosis but the osteophyte impingement is a new addition to the bulging thoracic disc identified many years ago. ...and this is before I admit to neck symptoms. What might be visible if the rest of my spine were scanned can only be surmised and I struggle with physical restrictions and significant pain.
On receipt of this information my GP referred me to a spinal surgeon but I will not get to see a Consultant because I have been weeded out by a preliminary physiotherapy assessment. This was thorough and the outcome concluded that changes shown on the MRI are due to normal ageing while the pain level is a result of having become trapped in a cycle of pain that does not relate to anything seen on the scan. I'm told there is no risk of things worsening and I am to walk along the pavement for two minutes twice daily, gradually iuncreasing the time until pain-free mobility is restored. I should also enrol with local leisure centre classes especially Aquarobics and Yoga. I agreed to referral to a Pain Clinic on grounds that there may be helpful new strategies since my initial Pain Management Programme of nearly 30 years ago and I will soon undergo a preliminary telephone assessment for suitability. Other than that I was told there is no need for any follow-up and no suggestions were offered for relieving specific symptoms.
Cynicism is not one of my traits but I cannot supress the feeling that I have been fobbed off time and again. The consistent hard work of staying as mobile as possible has been disregarded and I've been sterotyped as an older woman (late 70s) who is a self-imposed lazy-bones with no knowledge of her own body and the ways its functions are changing. In a nutshell - of no economic value, of little use to society so increasing symptoms can be ignored unless/until the frequent bouts of sciatica become permanent or another specific emergency arises.
I find this demeaning and disrespectful; actually taking no account of my willingness to continue taking personal responsibility for my own wellbeing, with informed support. I am made to feel like a time-waster. If an honest acknowledgement were made of the likely reality that the NHS can no longer support a non-life-threatening chronic condition then at least I'd know exactly where I stand - more or less in the same spot where I've stood for the full 30 years of my OA journey!
I assure you that my brain and body have not been left to atrophy - I 've made massive adaptations in lifestyle, gained an MA degree at age 73, volunteer with a national charity that supports people who contemplate suicide, am a Lay Preacher in a non-conformist denomination, spend as much time outdoors as possible, including cycling on old railway tracks and have every reason to be motivated to stay active for husband, adult children and seven grandchildren.
Yet is seems there is no encouragement for folk like me and next to nothing I can pass on through this forum to help others cope with the limitations and progression of OA. It's definitely a DIY condition and I recall the posts of the indomitable late Mike on these threads - especially on 'Val's Cafe'! Thankfully I have a great family around me.
Any comments or suggests will be welcomed but please don't reply via a link to VA's mine of information - I have been there and can easily access it again for myself, thank you!
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