Personal Update, myalgic encephalomyelitis/CFS/Fibro/CFIDS remission

It's been a long time since I've been on my own website... to be honest, I wasn't sure if I was going to be able to come back to it. For those that don't know me, I'm the owner/creator of the Temple, though really I think of it as a co-creation belonging to all it's membership.

My health issues, a very severe form of myalgic encephalomyelitis - what is poorly named 'Chronic Fatigue' in some countries, had me so weak and ill I could barely move at all. Bed bound & going out only for absolutely necessary medical appt's using a wheelchair, and unable to barely move at all.

Not to mention my ability to really focus or connect, and that I found even the most simple social & emotional interactions very exhausting.

Everything becomes hypersensitive, living in low light, quiet, too much noise, too much light, too much anything... anyways... I could go on and on.. suffice it to say I've been very ill for a number of years, and it had been a steady decline.

I have of course been trying everything and anything to fight for my health, making many adjustments in terms of diet, supplements, traditional and alternative therapies, etc. It seems the last 'regime' of diet & supplements that I implemented at the beginning of this year, was what it took to get me finally into a state of remission. For the first time in many many years, instead of my health symptoms getting worse, I not only stabilized, but started to get better. I've been doing as much as possible this year to work at regaining my strength & rebuild my stamina, pushing myself, since finally now I've been able to. This month was the first time I was able to go for a short walk without my wheelchair. To walk, out my own front door and down my own block... was an incredibly liberating feeling. I've been trying to walk most days since.

I've starting investing what I can (unfortunately times are tight) into rehabilitation. I bought a mini-trampoline to gently bounce or gently walk on for those days I can't walk outside. I can't do more than a few moments at a time.. but compared to struggling to get to my feet to get to the washroom, this is a big improvement.

I've been keeping meaning to get back onto the site and reconnect, but at the same time, this is the first time in many years I've been well enough to do something other than just be on the internet, that I've been spending most of my time/energy trying to engage in activities to rebuilt my strength, or... getting to be outdoors. Having been predominantly housebound for a few years.. and being able to count the number of times last year I've been out of my house on my fingers... well, it's hard not to want to spend my time laying in my back garden playing with my dogs & cats, or if I can, getting out for a longer outing in the wheelchair. I've even managed to do a little weeding in the garden from a laying down position, I just go slow, and rest when needed.. its very good exercise and physical therapy!

I'm actually going to a wheelchair friendly campsite this Monday-Thurs! I love nature and the outdoors and am so excited to be able to do this. My partner gray is going to take care of everything, and me, I feel very blessed.

I'd like to apologize to people who have written me mails and messages or left comments, and have had no replies from me. It's just not been possible for me to keep up with the activity on the site. I have people still write me everyday, and for many months now I've rarely been able to just log on and read, never mind reply.

I also wanted to thank you.. for continuing to reach out and supporting me. Thanks for all the lovely birthday wishes I received as well, it looks like being 43 is going to be very good for me!

I wish I could respond to everyone who has written me personally, and thank you, and give you a personal reply, but I just can't, believe me, if I haven't replied to you, it's not because you're not important to me. I've had to neglect even my closest friends and family to a great extent over the last several months. I haven't replied to some of my closest loved ones. Sometimes someone will get a message through just at the right moment and I'll manage to pop off a quick note on twitter or somewhere else, and I worry people I'm closer to will feel offended that I'm well enough to do that, or well enough to do something else, but not well enough to write them... honestly, it doesn't work like that at all. I'm overwhelmed with the amount of things I feel I 'should' be doing.. and I just try to do my best in the moment. Sometimes it means I don't get to prioritize as much as I'd like to in some ways.

Yes... I feel a bit guilty.. and yes... I need to learn to let more of that go. I've always been a person that leans toward wanting to do everything, and wanting to do it perfectly. I know it's my own forgiveness that I need to focus on. Most people around me are completely accepting and supporting, and the person who feels I'm letting others down is usually not others... but myself.

For others dealing with similar health issues wondering what miracle cure I've stumbled on... I don't believe it works that way. I think these are complex health issues, where a one approach/cure does not fit all. I experimented with several different dietary & supplement combinations and through years of trial and error finally found out what diet & supplements I needed to maximize my own body's health & healing abilities. I don't think it's the right one for everyone.  I think we all have different food sensitivities, different chemical makeups, different deficiencies, bodies that make different demands on us based on our age, gender, size, hormones, genetics, etc... I believe the right approach is to learn to listen to, and trust, your self, your body, mind, soul... and be open to trying things and challenging your assumptions, experiment, and listen to the evidence of your body.

If some are interested, I can try to find the time/energy in times to come to write out a bit of my diet & supplement & therapy approaches that have worked to create this remission for me. I say remission... because it's only a 'cure' if it's gone completely and never returns. I'm definitely still ill, and even if I do become completely better, these types of illnesses do return, so I believe in taking things day by day.

For anyone out there dealing with -any- struggles.. don't give up hope, things can and do change in life, for good and for bad, I was hoping and fighting for a remission, but honestly believed it was not particularly likely given my condition. I felt it was more likely I'd be facing cardiac arrest or cancer within the next 10 years, I was leaning towards the statistical outcome. I've always been a hope for the best case scenario and do your best to make it happen, but prepare for the worst, make peace with the potentials. The reality is, we don't know what's around the next corner sometimes, life has ups and downs.. and things are always changing. There are -plenty- of opportunities for happiness & joy in life, and for things to shift in directions we would like them to.

I think the number one thing that has gotten me through this is attitude... the attitude of gratitude, and appreciating what I did have to enjoy in my life, no matter how much had been 'taken away' from me, instead of focusing on the losses, and on the pain.. I've focused on the blessings and the gain. *smile*

In fact, I'm very appreciative of the fact that I got as ill as I did and struggled with the health issues I have, it was the lesson I've needed in life, to learn to let go, and to surrender, and to appreciate what is really important in life, and to treasure it, enjoy it, and celebrate it.

Thanks for listening... *smile*

Live in Love
Leila

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Comment by firefly on June 19, 2012 at 10:28am

your strength amazes me that is what will keep you going lelia. i do wish all the luck in the world on your new adventure. if you would like my advice with someone who had to deal with a disablility all her life. is for you to live the moment. you might fall and fall again but you have to get right back up in order to love the moments you are in now. i understand you are quite busy and so am i . i am on a new adventure myself so i do wish you and your family the best luck in the world. if you ever need anytime i am always on. go absorb the sun its good for the bones lol. well take care and i will see you around.

Comment by Myna on June 17, 2012 at 5:35pm

Thank you for sharing....  sending light and love!

Comment by Flameater on June 17, 2012 at 2:52pm

Godspeed your recovery, Leila

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