News item from PAS website about member who did a long distance walk to raise money.
pernicious-anaemia-society....
For the life of me I can't understand how she managed it.
At a push, I can manage a mile to 2 miles gentle walking but am then exhausted. Just feel very wistful, I'd love to do some long distance walking.
Good for her 
It doesn't say how long it took her to complete it though. Maybe she did it in small bits?
I started walking just before my diagnosis and at that time, a 20 minute saunter was as much as I could do, now I am up to 3-4 miles a day. Nowhere near her mammoth walk though - maybe one day.
I'm currently trying to do the 10,000 steps a day which is about 4 miles. I've managed it on some days but have to do it in stages throughout the day. I have POTS also and have noticed that it's making some of my symptoms (mostly blood pooling) worse. Could just be co-incidence I suppose. Would love to be able to run. I'm always so jealous when I see people out for runs. Probably would never do it but just the option would be nice....
*Positive Reply*!!
Two years into treatment and most of that at very high levels (1.5 mg hydroxocobalamin daily and more extra supplements than should be safe) I went to the Suffolk Show again last week with a team of 6 cattle, from Tuesday morning to late on Thursday, sleeping in my cattle trailer. On the main show day my alarm went off at 5am and I was on my feet most of the time until about 10pm. Thursday was from 7am to 10pm and easier but still busy. OK I used every resource I had and it's taken until now to feel better again but I did it!!
I went last year and posted a picture of my bull on here but I can only remember odd minutes of the experience. This year my brain and memory is working better and I think I will be able to remember most of it. I will be at the Norfolk Show at the end of June and do it all again!
I had had deficiency symptoms for over 20 years and by the time I got enough treatment I was sleeping for at least 15 hours a day and could barely walk or talk. I lost about 2 years of my life (as well as most of my hair and several teeth!) because my memory didn't work and I still have quite a bit of nerve damage but I am so much better I feel alive now and I'm still improving.
I know that not everyone is as lucky as me and I can't recommend that people take supplements at the rate I do but I hope I can give people encouragement to listen to their bodies and get the treatment needed to be as well as possible! x
Wow,
That is so great to hear you improved so much after 20 years.
Like you I had symptoms for nearly 20 years, I have improved to the point that I have increased the number of hours I work (still only a few) and some neuro symptoms went but I still feel incredibly frustrated by my limitations.
I suspect I need huge amounts of B12.
Thank you for your reply!
My improvement has been thanks to the help, support and encouragement I have received from you and others here and on the Facebook support group.
It is amazing how much some of us need to repair the damage caused by years of deficiency. I know there are several people on 2 jabs a day with masses of supporting supplements.
While there must be a lot of knowledge of this problem somewhere that isn't generally available or used (the pharmaceutical industry wouldn't produce 1.5 mg ampoules if they weren't needed) I think there is also a lot that hasn't been investigated yet.
I hope you can get enough of what you need to make the improvements you would like!
Thank you and best wishes, Denise
Bittersweet Bonds - Pernicious Anemia and the Doctor-Patient Dance
How does it feel to have too much B12?
