Feel free to discuss any topic of general interest, so long as nothing you post here is likely to be interpreted as insulting, and/or inflammatory, nor clearly designed to provoke any individual or group. Please be considerate of others feelings, and they will be considerate of yours.
I had a bit of a bump in the road last week. I tried a couple hommade coconut flour muffins, (must have been too much fiber for me), and I had erratic bm's, bloating and gas, again. This week is better now that I'm back to my meat, potatoes, veggies and a little sunflower seed butter & coconut. Last week I couldn't accomplish anything due to the fatigue. My mind was clear, but the body wasn't willing. This is very frustrating for me. I remember the summer (2012) I had the severe symptoms of MC, which started in August, but for several months prior, I was very fatigued & tired.
Polly had remarked once that she couldn't wait to get into bed at night, and didn't want to get up in the morning. She just wanted to sleep. That's how I feel. I wonder how long that lasted for her? How long before you all had some energy again?
Also, I wonder, in the back of my mind, if I have another autoimmune condition, too....like chronic fatigue etc.
Any comments would be appreciated.
Linda :)
LC Oct. 2012
MTHFR gene mutation and many more....
Fatigue was the MC symptom that lasted the longest for me. It was a full 2 years before I could honestly say I had most of my energy back. It was better after one year but still a problem. Of course, it was very gradually improving, so I wasn't completely miserable all of that time. I think what bugged me the most was that, even if I managed to grab 12 hours of sleep on a weekend night, I would wake up feeling as if I had not slept at all.
If you noticed that the fatigue was worse after the muffins, then it appears to be dietary-related. I wouldn't worry about another AI problem at this point if I were you.
Are you able to exercise? I did so throughout those first 2 years, although it was not easy much of the time. I do think it helps overall.
Hang in there, and remember: "anything worth having is worth waiting for"!
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
While I don't have fatigue at quite your level I am still far from energetic, which is a particular problem right now since I am moving in a week (if you're reading Polly I decided I simply have to get away from my awful neighbor). Every thing I have to do and all the things I have to do in total feel like to much so I'm just plodding along trying to get one thing done at a time and hoping that by the time the movers arrive on April 2 I will be ready.
One thing I have decided I should do to get through this move is to revert back to my basic diet of ground meat and bone broth so I don't make things worse. This disease is certainly a long haul and not a quickly over and done with kind of thing. Progress is slow but I have no doubt that you will figure this out. You are certainly doing everything you can to heal.
I did notice the fatigue was more exacerbated after my fiber overload issues. It is just so frustrating, because I have always been active, and able to accomplish things. I taught (K & 1st grade) full time, raised 3 boys, and ran a household! Now, I'm happy if I can get my floors cleaned one day, and bathrooms the next, etc.....I had to break up the chores into different days!
I have vertigo from a concussion from a year ago. A few months ago I tried yoga again, and had a dizzy spell. The vertigo has been better the last few weeks, and my yoga instructor told me she'd develop some poses that don't involve dropping my head, so I guess I need to take her up on that. I do walk my dog for about 1/2-3/4 hours per day, too.
Thanks for the message, and think spring! It's right around the corner, no? Did you get much snow with this latest blast?
Linda :)
LC Oct. 2012
MTHFR gene mutation and many more....
I didn't know you were moving, but I do understand the aggravation of a neighbor that doesn't respect your privacy, and isn't considerate. It must be overwhelming to do the packing and organizing that you are doing. I wish I was closer, because I'd come and help!
I am realizing that this disease is a long process, that is not easily solved, for very long. And, the basic diet should be a staple....but I am human and I do try new things sometimes....of course, sometimes I pay for that, too....balance, huh? I did make turkey broth (in a crock, before the talk about pressure cookers ) a few weeks ago, and made ice cubes with some of the broth with the intention of sipping some each day, and I need to try that...I didn't do well with broth in the beginning, so I am being a wussy here.
Good luck to you, and keep thinking ahead to how great you'll feel once you're in your new place & peaceful!
HAPPY SPRING!!!
Linda :)
LC Oct. 2012
MTHFR gene mutation and many more....
I have fatigue also and didn't expect much when my doctor wanted to check my thyroid. I've been checked many times before and told I was normal but they only checked my TSH. This doctor checked my Free T3 and Free T4 and lo and behold I was low on Free T3. He put me on natural thyroid medication and I am beginning to feel better. I also am on LDN so it may be helping also. I have not had the great energy that Monique has had with the LDN. The tell tale low Free T3 is a huge clue to my fatigue. MC doesn't help either. Maybe you might want to have your doctor check your Free T's. I also have adrenal fatigue and am on cortisol. I guess I got the triple wammy...MC, low T3 and adrenal fatigue! No wonder I was so tired!
Linda,
Even though my MC per say is tamed and on a lead behaving (most of the time), fatigue and tiredness has continued to be the common issue with all of my conditions.
Early on I learnt that I only have limited banks of energy - physical energy, mental energy, emotional energy. Etc
I have to budget these a bit... If I know I am going to have a huge physical day (ie moving house) I make sure that I allow enough time afterwards for the body to recover and recharge.
The recent move, all belongings on the truck Monday, took it easy Tuesday, Wednesday, started the 3 day transit on the Thursday. Planned the trip that I only had to do 4hrs max driving each day, so there was rest time and relaxed toilet time each day!!!
Work wise, same again. Juggle meetings/appointments to suit what worked best for focus and energy.
Stress/adrenalin/cortisol are a mega toxin to my system. Any time I know ahead of time that it will involve that, whether it be good excitement or unsettling stress (ie like the day we were getting the redundancy letters) I make sure that I have meals cooked ahead, chores are up to date before hand, that way I can take it easy, rest a bit more afterwards.
I have been doing this 'system' for 4 years now, and is just part of the flow (admittedly I was a super organised list maker prior to the MC Dx)
When people comment, I reply, there is method to my madness!!! I have figured out what works for me so I am sticking to it!!!
Hope this helps
Xo
PS - if I awake feeling great and I have the choice of housework or photography, photography mostly wins!!!
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Pat, I have not had the free T 3 or T 4 tests done, but my mom has always has thyroid issues. I'll have to speak to my Dr. Thank you.
Gabes, You're right & oh, so wise....it's a balancing act that we're in charge of....if we choose to do what is best for ourselves, we can find a way. I need to get rid of the notion that I can be exactly who I was a few years ago....because I'm not..... Thanks. Are you doing well these days?
Linda :)
LC Oct. 2012
MTHFR gene mutation and many more....
Definitely easier said than done to 'be at peace with what is, in life and in self'
It has taken me the 4 years post MC dx, to get to this relaxed mode!!
I spent many years, (pre MC and post MC Dx) and too much sacred energy being frustrated that my body could not keep up with what my mind wants to do.... Using the budget system definitely helped.
I am doing ok, (thanks for asking xo) I am in 'unconditional OK'ness' phase about being unemployed, accepting support of family, and some of the blips/hiccups that come with with moving interstate
just as I start to doubt life/decisions a bit, the universe sends a strong message that I am where I am meant to be, and I have to trust the flow, (not try and control the flow) of life.
I have found a practitioner ( a very affordable one at that) that I can do the MTHFR gene test and Pyrrole disorder test.
Connie (Stanz) posted about MTHFR a couple of months ago, at the time I didn't catch on. Further encouragement from Connie, I have been reading about it.
My dear friend and naturopath Maria, was Dx'd with Pyrrole last week
Initial investigations, I thought I had to go to a super expensive, long waiting list immunologist to access the tests, Then voila!! This practitioner came into my path for totally different reasons and she mentions MTHFR and Pyrrole. I was gobsmacked!! I asked her if she had bugged my computer.
I think MC is a bit like a cat, they say that if you have a cat you are living /a guest in their place, they rule things a bit..... MC is a bit the same, we don't get to govern things totally.
More so we need get to know it, and befriend it, listen to it, if you can do that, there is way less angst!!!
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Jean
Energy filled hugs to help you with the move. Xo
Highly recommend going back to your 'safe' low inflammation meal for this period. It helped me.
Also plan out the tasks for moving, what meals work best at what time, and give the body the rest and relaxation time for the BM's to occur.
Although tiring, it is a bit cleansing to review belongings and purge things not needed, it is a bit freeing actually!!
Wish I was closer (same country or time zone even) to give you a hand.
Xoxo
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Gabes, looking forward to hearing about those test results.
Jean, sorry you have to move. I hope it will be an easy one. Like Gabes, I wish I could help.
Linda, I so understand you. I have had low energy all my life, with bouts of exhaustion as a child that left me wondering if you could die of fatigue. Now I can relate it to probable post polio syndrome. I was always told that "everybody is tired", and "it's not unusual". So I pushed myself. And probably made the pain and fatigue worse over time. In the last 11 years since I got hurt on the job I have had to learn to plan to do "stuff", husbanding my energy, to throw out those plans (if I don't have a deadline, like moving) if fatigue is in residence, and to ask for help if I do have a deadline. And since MC and then breaking my back, I have even less energy to do stuff. Not much I can do about it, except give in. Not give up, surrender. 2 different things.
I have no choice, it seems, than to pace myself, doing a little at a time. Luckily I have enough experience with moving, so I know what I have to do, and the time to do it slowly. There is something freeing about all this. I like culling my possessions, some stuff to the recycling facility, other stuff to my daughter-in-law (ex daughter-in-law if I'm being picky but she still feels like family) who runs a yard sale for the small town she lives in every summer and has room to store my stuff until then. Other stuff being junked which the mover said he could deal with, so yes freeing and also the expectation of living in a peaceful and quiet place without the screaming and yelling and mess created on a daily basis by my downstairs neighbor. Plus my new apartment has a huge private porch where I will have room to grow some veggies this summer. All I have to do is get through this next week and then life should be good. I can feel my shoulders relaxing just in anticipation. Although moving is stressful and exhausting when the move is all over I will have removed a whole lot of stress from my life when I no longer have to contend with my awful neighbor.
Linda, I have found that a lot of this disease is learning how to deal with a new reality. The expectation of perfect health is an illusion so I work at healing and acceptance both.
Thinking of you Gabes and Jean....life on life's terms...something we all have to work on. Good news from me....I made the trip to Texas for five days and enjoyed it so much. I had a great time with my granddaughter. I am learning that I too have to pay attention to my body. The day I left, I got up at 3 am to catch a plane. I took foods to eat on the way and I arrived in one piece without issue. However, that night around dinnertime I had a wicked stomach ache. I backed off from eating too much and got myself to bed. I relaxed and the next morning I was fine. Good for me as in the past I would not want to make an issue of being tired and who knows what the end result would have been.
I am in the homestretch for work and am now looking forward to retirement. I have told myself that I will not do anything for 6 months and then reevaluate whether or not working a couple of days would be good for me. I am looking forward to some more travel this summer and I am feeling good most days now. Of course I still read labels like crazy and watch what I eat. I thought the doctor was crazy when she gave me Questran and Elavil to settle my cut. I believe it has helped (or something helped!!) and I have cut back on the Questran as N has now been my friend for more than 3 weeks. I am vigilant and do not want to pretend I am "cured" but with the dietary restrictions (since early November) and some help with the symptoms (meds) I have been off Endocort and hope not to have to go back on it. I do not want to jump and stop the meds I am on now, but am hoping to wean off after I finish school in May.
So, life is good and for the newbies that get discouraged. I started this rough spell in Sept., got tested in Nov. for food intolerances, became totally frustrated in Dec-Jan. and here I am in March feeling so much better. Thanks to all my friends on this site I didn't give up...
Jean
Everything will be ok in the end, if it's not ok, it's not the end.
Hi Gabes, I noticed in one of your posts you mentioned the three energies. Do you have a method of balancing the body's flow of positive and negative energy? Jon
Hi Jean - Sorry to read what you have been dealing with from your neighbors (screaming, yelling & mess on daily basis). Moving can be stressful, but it sounds like a move that you will benefit greatly from. Your new place sounds good already with the private porch. Wish I could help as well. Take care,
Paula
Paula
"You'll never know how strong you are until being strong is the only choice you have."
"Life is not about waiting for the storm to pass... It's learning to dance in the rain."
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) a few weeks ago, and made ice cubes with some of the broth with the intention of sipping some each day, and I need to try that...I didn't do well with broth in the beginning, so I am being a wussy here.
