I have previously described that for so many people, under treated B12 deficiency feels like being asked to climb a very steep and chilly, mountain without any shoes or coat.
This past year has been an exhausting challenge in so many ways and my darling mum sent me the following Laura Ding-Edwards poem and I, in turn want to share it with you….
The Mountain
If the mountain seems too big today
then climb a hill instead;
If morning brings you sadness
it’s okay to stay in bed.
If the day ahead feels heavy and your plans feel like a curse,
There’s no shame in rearranging,
don’t make yourself feel worse.
If a shower stings like needles
and a bath feels like you’ll drown;
If you haven’t washed your hair for days,
don’t throw away your crown!
A day is not a lifetime.
A rest is not defeat.
Don’t think of it as failure,
Just a quiet, kind retreat.
It’s okay to take a moment
From an anxious, fractured mind.
The world will not stop turning
While you get realigned!
The mountain will still be there
When you want to try again
You can climb it in your own time,
Just love yourself till then!
If you are struggling with a diagnosis or treatment please start with the What to do next page.
Much love Tracey x
Hello Tracy, thank you for your campaign. I was left so disabled by B12 deficiency that I couldn’t lift my legs, turn over in bed or lift a glass of water if I was lying down. I couldn’t lift my arms to dry my hair and worst of all I was struggling to breath. I was in constant unbearable neuropathic pain down my shoulder, neck and with a tight band of sharp pain around my chest. My GP told me that is probably slept on my neck funny. Even after a private diagnosis of low/boarder-line deficiency I was told that my recovery was down to a placebo effect. My husband had to buy in Vitamin B12 from Germany and learn to teach himself to inject me. I was eventually given 4 b12 shots on the NHS but had my treatment immediately cancelled with covid. I felt like they were happy for me to deteriorate again to a place of being unable to breath during a pandemic that would have affected my ability to breath had I caught covid. My treatment was cut with aggression and belligerence. I was told to take vitamin tablets.
Now I hear that the NHS workers who left me to suffer want their long covid recognised as a disability. If any one bothers to listen to you please point out to them the hideous suffering and disability that having your spinal cord impacted by this deficiency causes. Please tell them that I can’t cure myself by eating marmite or nipping to Holland and Barrett for a multi vitamin. I’m sick of being given nutritional advice by ignorant health workers.
Thank you again,
Sarah Bellwood
Dear Sarah
Thank you for taking the time to comment. Your story is heartbreaking. Thank goodness you were able to self treat in that sea of ignorance.
Tracey x
Thanks for sharing your story Sarah. So much of it will be familiar to fellow PA sufferers, especially the absolute ignorance of the vast majority of GP doctors.
My anger is at the medical ‘professionals’ who are either too arrogant or too lazy to look up the neurological symptoms and LEARN how to correctly diagnose and treat the condition.
And to cap it all… after my B12 result came back from the lab as being so low it could not be reliably be measured and the GP said it was the lowest he’d ever seen… he suggested that people should take anti-depressants to solve a vitamin deficiency!!
I researched, joined groups, read medical papers, and learned about the co-factors needed. Then I purchased B12 from Germany and learned to self-inject. It literally saved my life.
P.S. I saw several GPs not just one. They were virtually all equally ignorant! One even suggested that the intense pain in my spine was because I must have fallen over, landed very hard, and then forgotten about it. It actually turned out to be a lesion on my spinal cord where the myalin sheath had torn into a lesion.
Keep up the good work on spreading the word.
Thanks Tracey, that poem really resonates.
And Sarah’s description of “aggression and belligerence” struck a chord too.
I was treated like a nuisance by one of the practice nurses at my GP surgery, for daring to ask for a more frequent regime than 3 monthly injections, as I was suffering with all sorts of problems you will only be too familiar with.
I had turned up in quite a state, had to take time off work as I felt so ill, and I got lectured about NICE guidelines, and I would just “have to try and manage to wait out the three months between injections”. I asked if it was a matter of cost as I was willing to pay to get more frequent doses, but she kept saying it was “the guidelines”. I said that it may be guidelines, but everyone is different. She was getting very belligerent at this point and said I would just have to try and manage. I was not in a fit state to argue further. Ironically, I could have crossed the road to a local beauty parlour and paid £25 (!!!) and had a B12 injection there and then.
I am still flabbergasted by the attitude we face about what is a cheap vitamin supplement, but is essential to our health and wellbeing. And if we are able to get this essential supplement Over The Counter, as you can in other countries then all the better and it will take the much vaulted pressure off the NHS.
I have bought B12 OTC when I quite unwell with the usual symptoms while on holiday in Spain. I bought it OTC in a pharmacy in Malaga 3 years ago for €1 and paid an extra €1 for them to inject me there and then.
The pandemic actually did me a favour. I still get my prescriptions by ringing up my surgery a few days beforehand (free in Wales) and then collect them a few days later from my nominated pharmacy. I very easily and cheaply bought syringes and needles from a UK medical supplies company, and now inject myself approx once a month. This frequency suits my particular level of this condition and I can inject more or less as and when I NEED IT.
It took a couple of times to get confident with injecting, but now it is a matter of course. A quick injection in the thigh and off I go. No fuss, no hassle.
When I order my prescriptions the receptionists always ask if I want to make an appointment for the nurse to administer it, and I make excuses about ringing back once I’ve sorted out work rotas, or some similar excuse.
It has not been questioned so far, as the receptionists are not bothered as they are too busy/don’t care, and now I have a good supply of B12 to see me through many months yet, at my own pace.
You’d think that the medical profession would be more accommodating or encouraging of this, as they are with other conditions such as Diabetes or for those who need Methadone etc. But we continue to have to fight against this prejudice against us.
I just don’t understand it .
It astonishes me that the UK has allowed dangerous drugs like statins that have questionable benefit and very serious side effects (some irreversible) to be sold OTC but restrict access to safe and cheap vitamin B12 which it is impossible to overdose on. Here in Australia I can buy OTC 3x1000mg ampoules of hydroxocobalaminfor $A8.
https://www.chemistwarehouse.com.au/search?searchtext=B12%20injectable&fh=1
Of course syringes and needles are extra but if you have a cooperative pharmacist it’s cheaper to buy a box of each.
As for a requirement for a doctor, nurse or pharmacy worker to inject the B12, that’s ludicrous. It’s a subcutaneous not intravenous injection, anyone can do it. If diabetics can inject their own insulin then you can inject your own B12.