Thanks Nackapan - that's useful advice and I know exactly what you mean about "last thing on my mind". Can they not give you points retrospectively ? It's not after all like maternity leave, where you have a return date .
I thought that when I went off sick, I would soon be back. B12 is "just a vitamin" after all.
15 months later, I went back on a phased return to full-time (starting with 1 day a week) and now, about 21/2 yrs later, have probably peaked at 2 consecutive days a week. My job is not exactly the one I left, but I'm not exactly the same either, so perhaps that's just as well.
I know that, for some people, even that is not possible. At my very worst, I could not imagine ever being able to work again.
Luckily for me, I am up to date with state pension contributions. I also cashed in a small frozen pension of my own to see me through a bit.
For those unsure;
Department of Work and Pensions can trace any contributions that you have made in the past, and can let you know if you need to make further contributions for a full state pension when you reach retirement age. They can also let you know what "retirement age" is for you (mine has changed three times !)
Unfortunately for me I was supposed to be working until 60. (Or review then) I had credits for maternity leave . I was part time for many years but 36 yrs in the NHS. They lost the bid for school health (shock)that I was working in. I went with new provider but left as only protected for a period and I left as a different job and appalled how the service was changed on the budget ect. ect . Fully intended to get another p/t post .
So I was not in paid work when I got ill.
This makes if more tricky. Not impossible
Just looking into where it leaves me. I cant even read my mail at present .
I was surprised being 3 years short for full state pension.
Obviously really mucked my NHS one. It's a pittance as low earner.
Just wanted to share this as if I was alone would be in trouble. The care I provided for family has to be paid for now.
Credits are given towards your state pension if too ill to work.
Just as i have been trying to sort it would post , so we can help others avoid this.
At the moment the NHS pension people have no trace of me!!! I've become invisible in many ways.
Thank goodness for paper.
Wage slips . P60s on paper
.
We done for getting back to
work. That's s huge achievement. May tour progress continue.
I collapsed 1/10/18
Cant believe I've lost so much time and it's gone on for so long.
Very different to this time last year but a long long way to go.
My aim is to be able to travel the 4o miles by train or car to see one of my daughters new house in the spring. They moved in September.
When the appointment finally comes for neuro ophthalmology that will be a test getting there. Must not build up expectations though. Hard not to do when waiting so long.
You seem like a very determined person, Nackapan. You have also helped a lot of people on here, despite your own problems. If anyone can get there, you can.
How are things going with injection frequency ? Weren't you about to have subcutaneous injections given, with the eventual aim of being able to continue that at home yourself ?
It might make life a bit easier for you, because as you know full well, we are not the same every day and sometimes get worse for no fathomable reason and similarly sometimes just get a good day unexpectedly. … .you must be due a couple !
Also been told im depressed too many times. It's very patronising really as if I was I would take an antidepressant
The surgery agreed then couldnt do sc as planned inbetween IM.(on other posts) b12 not licensed for sc!!
I've just with alot of help from here got an order of b12 on it's way to inject sc at home.
I'm still on 2 weekly IM injections at the surgery. So I Intend to Inject sc inbetween to see if i can get more progress.
My Gp has' thrown me 'a few to many times now. Her latest was saying it dietry and tablets should help with reducing injections. I followed her direction.No help. I've stopped the b12 tablets now so the nurse can record I dont seem to absorb them! Also to get on with my life. She has no idea how hard I've been trying. If i push through it does me no favours. She dosent tealisevthe appointment with her is the 'activity ' for the day.
At least we have more daylight now. As the severe light sensitivity had not improved with artificial light.
Yes let's hope 'better days ' are on the horizon.
For me and everyone else.
I've never been on Facebook or a forum before.
This community is so good for so many reasons. I'm thankful for it.
I think you are right in what you are trying to do.
The only thing that stopped me getting worse was frequent self-injections. I appreciate that this is not the answer for everyone, thank goodness. But for you, since progress has been made but very slowly, it could well be the addition you need. A harmless trial. At least you will know either way - you are well able to judge for yourself, particularly with your medical experience. I have none at all.
I just didn't believe I had anything left to lose.
There were plenty of times when I thought that I could be wrong because progress was so slow. Only reading previous diary entries and looking at symptoms charts helped me to notice very gradually diminishing symptoms. It took years for me to get this well, and I did have to adapt. Even now, I can have returns to the bad old days if I overdo it, so am also more aware of limitations.
I recognise the "1 event for the day" reference. That was me too.
How many times do GPs have to hear the same thing from various patients before it becomes something more uncomfortable than anecdotal ?
I still record my symptoms, just in case.
I've never been on a forum before either, and still wouldn't know my Twitter from my Facebook.
Although worked in the NHS for 36 years I'm not medical. I'm a Nursery nurse. So apart from the training in child development health screens ect I've been an assistant to peadiatricians and midwives/Hv on maternity and special care baby unit. So clinical.
Don't worry- plenty of people here who are glad to help with advice if you are nervous.
I could not get any of the nurses to show me what to do, so watched a lot of youtube videos (confusing array of sometimes conflicting advice, and one running his fingers through his hair and then injecting his girlfriend) -so in the end I opted for the one with the most sensible pants, having no other means of selection .
I wasn't very ept at first . I got better over time and now think that when you are very ill, not much information sticks (memory, cognitive problems, anxiety etc) so it was very helpful to talk to people here who have been through all of this and can empathise. Handy tips to make life easier too.
Despite a consultant telling me he was "aware of the euphoria related to self-injecting B12" , there really isn't anything but necessity going on here. Hopefully also eventual control of your symptoms.
Keep recording, Nackapan - if only so that you can log the improvements as they occur. Might one day help your GP too !
GP said "ask any of the nurses to show you" but I think they were all too scared, because they had been told by GP previously to give me reloading injections twice a week for months and months- and I know that had made them very anxious about killing me !
Trouble is, they were only ever taught to give 6 loading injections then 1 every 3 months. It's all they've ever done, I believe. So if anyone needs a lot more, of course this would worry them.
My B12 turned up today, by the way - took 6 days; sooner than I'd expected, given they'd said delays likely.
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