In the last 90 days my trials resulted in a protocol that I am confident will lead to continued improvement. I had to interrupt that protocol due to procurement issues. Once my supplies arrived I started to improve in a few days.
It is part of my experience that this is the anniversary of when I could not walk more than 60 yards/meters before needing to rest. I am grieving that experience. It will not be in my past until I grieve.
I was thinking of walking in a 5K running/walking event on October 07 2023 which was 18 days away. At the time it was doubtful I could make the 5K walk although thought by starting my successful protocol I would be able to, although it was likely that I would have three days minimum of recovery based on past experience.
I decided to sign up for the 5K and spend the 18 days "training" and finding a way to exercise and not need recovery other than normal sleep. I found that walking up a hill until I was really laboring and then walk down and on the flat for a while I could exercise and not need to recover. In NH the hills are easy to find the flat not so much. 🙂 Fortunately I am a land consultant and understand the geography of NH.
7 days before the 5K I walked the course and did not need recovery. I was slow and needed to rest on the hills and was OK with that as I am fairly confident that is not permanent.
The day of the event came and I started walking an hour before the event started so to avoid people being concerned when I stopped and rested.
It was raining, I spent two winters in the UK so I had the gear and understanding of how to enjoy it.
I finished the 5K and cried at my improvement. 5K from 60 yards/meters in the last three years. Substantial improvement in the last 6 months with increased frequency of injections and other supplementation.
Not yet a goal but I see the possibility of running that course next year! I used to run log distances.
It was meaningful for me to know I could post here and share my success or failure. I thought about you all in the rain and smiled. Only those people in my personal life that love me and are close to me have any idea how I was suffering, no one understands the difficulty and obstacles I faced but you here. Thank you so much.
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WIZARD6787
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Yay! I used to go on cross-country rambles, never going anywhere fast but covering 10-15 miles in a day. These days the prospect of going to the doctors 3 minutes walk away is daunting. If I could get back to anywhere near the activity levels I used to take for granted it would be a marvelous thing. Thank you for sharing this with people who will understand how wonderful it is.
I am with you every step of the way. Congratulations on your achievements. You will grieve when YOU are ready. All the obstacles that you have overcome to being only able to walk from 60 metres to 5 kilometres.
This part of your post struck me,
‘I thought about you all in the rain and smiled’.
And know this, there is a cheeky person who lives on the coast smiling back at you. 🐒
Well done you! Before my diagnosis ten years ago, I could barely walk around the block. Yesterday, I walked 7 kilometres. I didn't mean to, I just went into 'wandering mode', chatting to my partner, enjoying the sunshine and lost track of time. I was exhausted when we got back, but half hours rest and a cup of tea and I was fine(ish) again. Keep at it, slow and steady and you could be back to running before you know it 👍
Wizard, congratulations. Your achievement from 60metres to 5km is heartwarmingly wonderful to hear. If like me, you will grieve numerous times, each time easier. Thank you for sharing this moment, it means a lot. Best wishes.
Thank you! I practice grieving and for me It is also revisiting. With practice it has gotten easier to get to the grieving and to recover from the grieving. The actual grieving is still very hard.
I often get to a place that I call sadder. . . then sad. I do not feel like I will survive and am astonished when I do.
When I grieve my loss of someone who died, I know I am done when I think of them and smile.
Congratulations! I’m the same……18 months ago I couldn’t walk, couldn’t get to bathroom in time, house bound and thought my life was over. Worse due to being an expat with no family around.
I researched and discovered the B12 deficiency link. I’m sure the doctor thought my issues were in my head but I’d never been tested for B12. Long story short, self injecting now and still have some bad days but yesterday I walked 13,000 steps! Never thought thst would be possible again.
Your steady experimentation has been a touchstone. Know what you mean about when the wave of ‘I will never recover’ smashes over the head. But mostly now more days I just get up and get on and shrug when things kick back.
Forced the sluggish brain to plan a short trip to Iceland with a friend who understands last month. And did it! The thermal spa water smashing over my head and mineral pools near geysers warm as toast was thrilling. Like coming back to the real world. Or a magical new one. And in the end my friend quietly pointed out we had walked 10,000 steps and more every day round Reykjavik.
This, from only making an anxious turn round the garden two years ago
Of course, I slept five days and nights when I got home. But hey!
As you say, no-one really knows how it is to be us but us. However, I remember the millions round the world in far worse torment and feel deeply thankful in my struggle.
Good on you. I am having wanderlust right now and see that as a very positive.
I now see sleep as healing when before I saw it as a sign of being ill. In a real way the quality of my sleep is my main measure of improvement. I sleep "better" than I ever have including when I was a child. The amount of sleep I need to heal still worries me a bit.
I have come to understand all of our suffering is meaningful and as best I can try not and compare.
I feel your past pains and future sureties-I was going to say aspirations but that was part of my past too-hope and effort didn’t work for me but B12 and supplements sure as hell did. I can feel my tears coming out of grief, rage and relief for us all that have survived our ordeals and move on, spreading the word to all and sundry (even though most think we are nutters). Not only for those yet to be helped but in a lifelong duty and act of remembrance for those that sadly didn’t make it to a long life, lived well x
When I started my PA journey I was barely able to cycle a few miles, despite it being something I’d done for many years. I was lucky as I was diagnosed early so I didn’t have as far to climb back as many in this forum have had. Nevertheless, it took me 18 months to 2 years to gradually regain my fitness and this was only after si twice weekly, a regime I’ve continued with for several years now.
I’m delighted to say that I regained my fitness and more (due to retirement and having more time available to both exercise and recover). A few weeks ago I cycled from Lands End to John O Groats in 10 days. 10 years ago I had to spend all day in bed, exhausted, after a 10 mile ride!
I got less worse for 2.5 years on the EOD method. It was not until I started injecting 3 times a day that I started doing better. I now inject 4 times a day without fail.
Thanks for the heads up on the dancing. I like to dance. I took Zumba Gold classes a few years ago. Fun to know I has that hour.
Not in much in two years but when I get up in the night and am not tired I drive to a shore that is remote and dance to the radio.
I am Godawful at dancing. I always marveled at those that loved golf and were Godawful at it. Now I understand.
For a Zumba class is it does not matter how good you are: just if you have fun! I am taking Zumba gold now, and also Nuline dance, ballroom dance, and a top 40's class called DanceFix. I also play ice hockey several times per week. My current Zumba is a gold class: I ramp it up and move a bit more energetically than some of the people in the class to get my heart rate up. I enjoy Richard Simmons videos because he uses popular songs. If you are dancing to a DVD nobody will even see you dancing so it does not matter if you are awful or not.
Thank you all for your support. I did not write anticipating that. It was meaningful to me. So much so that I was uncomfortable. I reread and got over that. "Seems those that suffer together have closer connections than those that are most content." Bob Dylan
So there was some recovery for three days. Same as when I walked the course before the event. Not distressful and a whole lot of sleep. On the 4th day I did the obligatory do I really need to do this supplement thing. 5th day was a I am sick of all this work day. 6th day was a well I might as well walk 5K to gather data.
The 7th day I walked 5K around the pond I open water swim in. Parked in the same spot. I still stopped on some of the hills although I might have been able to push through. It was fun and I was surprised how much difference the increase in frequency and amount of B12 made in my stamina.
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