Saturday, 23 March 2013

The nightmare continues....

The road back to recovery was never going to be easy and smooth, right? And of course it hasn't been. The week just gone is evidence of that. All of the old symptoms were back (and linger still) and I made it to work only one day out of five. It was a painful and unnecessary reminder that ME is still a big part of my life and that there is still a long way to go.

9 comments:

  1. Unfortunately it's not usually a linear journey coming back from this illness. Hang in there. I'm sure you've already asked yourself if/where you went too fast or too hard to trigger a crash. Hopefully it's a blip and LDN will help you recover more quickly. Sorry you're going through this though.

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  2. Sorry you had a set-back Chris. I hope it is short lived. But like you say, it is part and parcel to the whole thing. Sometimes it shocks me how sick I am after 10 years...its such a big thing to get one's head around. Hang in there.

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  3. Hi Chris,
    I just came across your website. I was diagnosed with chronic fatigue about a year and a half ago, but I can almost pinpoint the time it actually came on: around February 2010. I found your site as I'm sitting here having one of those days, thinking, "what on earth happened? Where did my life go?" I was a perfectly healthy, working, athletic adult, and then all of a sudden - it's gone.
    I find one of my biggest challenges is not feeling understood by almost anyone. Anyway, I wanted to thank you for sharing your story - although I'm sorry anyone else has to go through this! Keep recovering, as I know I will no matter how frustrated I get! - Jamie

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  4. Hi, I have just started blogging after being diagnosed with Lyme, but had M.E. almost 5 years. Not good for other people but it makes me feel better to know I'm not alone when I read other's blogs. I have and am trying every treatment I come across to recover and writing about the good and bad. I have tried a lot of rubbish lol! I definitely think everyone can get well because there are so many recovery stories and you have done so well getting to your stage. Hope u feel better :-) Crumpet

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  5. Hi Chris....and others who have found their way to this site who may be searching for answers. I posted above, March 26th, about 3 weeks ago. I was having one of those, "I don't want to be in prison in my own body" kind of couple of days/weeks. That's when I came across this site - anyway, just wanted to report that I've had some major progress since that time. Not sure if you've all heard of the book by Deepak Chopra, "Boundless Energy: The Complete Mind/Body Program for Overcoming Chronic Fatigue," but I know it was exactly what I was looking for. Anything that says "overcoming CF" rather than "dealing with" is a win in my book. So I ran out, grabbed the book from the library & started slowly implementing some of his suggestions. I could go on and on..... Just wanted to share information, hopeful this could help someone else too!
    Be well,
    Jamie

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  6. Jamie - Thank you very much for your input. I am glad you have found something that has been able to help you and I hope that you continue to feel better.... That being said, I remain unconvinced that this kind of book is generally suitable for people with chronic fatigue as a symptom of ME; partly because, although you can make some changes to your life in order to slightly alleviate some symptoms, you cannot "overcome" ME, and mostly because, from what I have read of it, it is intended only to improve the lives of people who are fatigued but not ill and not for people who suffer from the levels of crippling, chronic fatigue that are caused by ME.

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  7. Chris - I'm just an eternal optimist and I will beat chronic fatigue....I've spent the last 2+ years using every ounce of energy that I don't even have to be my own researcher, advocate, and essentially doctor. I've always been an achiever - working with everything I have to accomplish goals that I set: marathons, cycling races, Ironman distance triathlons (covering 140.6 miles in one day), graduate school, working 2-3 jobs at a time, etc. I mention these, not at all to boast, only to show where I was, and where CF brought me - so where did it bring me? Well, I was forced to leave my job as a counselor...and basically my full time job became simply "living" and "existing" through each day. Simple daily activities: showering, doing my hair, cooking, doing laundry all required the energy exertion of a marathon....actually, a marathon would have been much, much easier for me on many days. I've spent days too fatigued to sit upright on a couch, and I would slump my way onto the floor in my house and just lay there for hours and hours each day. Somedays, I wouldn't even make it that far, and I'd just stay in my bed - unable to even find energy to watch tv, send a text message, or answer a phone call...and something like reading, or writing...forget it, that kind of energy at times has been unthinkable.
    Before being forced to leave my job, I remember walking up one flight of stairs and having my heart beating out of my chest, extreme muscle pain in my legs, dizziness, and thinking to myself..."I used to run marathons? ...now I just can't wait to get home & collapse onto the floor, couch, bed...whatever I could make it to." Thank goodness my supervisor at my job was so understanding because as I watched my life crumble there were days were I couldn't hold back my tears of frustration, anger, and grief over the loss (losing at that time) of literally everything in my life as I knew it.
    I've taken showers where the pain of water hitting my back would cause tears to stream down my cheeks. I've had body pain that would feel like your worst flu...that would persist for weeks and months on end. I had to squint for close to 2 years because of the pain that light would cause to my eyes. I started getting hives all over my body that would usually come on after eating something, or being out in the cold, or taking a hot shower. The symptoms list goes on and on...I'm not sure if you consider this "fatigued" but laying flat on my back on a floor without the physical ability to get up even if my house just caught on fire feels "crippling" to me.
    I've gone to all kinds of doctors, had tons of tests run....but I'm sure you know how that goes! I'm working with an herbalist now who has 40+ years of studying Ayurvedic medicine, Tibetan medicine, Chinese medicine & others. When I mentioned the book, I just did so with the hope that someone else might find it useful as a resource.
    I typically don't talk much about my symptoms, I try to remain positive...not always the easiest thing to do, as even that requires energy. : ) I also try to stay focused on gratitude; looking at the things that I do have, and the small successes I may encounter. It's a world of difference and quite humbling, just trying to ride 2 miles on your bike when you're used to not even bothering to suit up unless you're going out for a 30 mile ride. Nowadays, I'd be grateful for 2 miles on the bike in the fresh air, or 20 minutes of being outside walking, instead of a 20 mile Sunday long run.
    With all this said, I will overcome this, I promise you that, and I hope that you do too!!! No one deserves to live with this illness because it is not "living." That is why I will never, never give up seeking answers & finding health!

    Best of health to you!
    -Jamie

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    Replies
    1. Hi Jamie,I wondered if u are interested in the mind/body connection have u tried the lightning process?I currently have treatment at the optimum health clinic in London through telephone and they are very good.They do lightning process but a slight variation,I can explain if u want to know more.I think it is great to try everything and have an open mind if your situation allows,I do the same but everyone has a different reason for their fatigue so different ways to recover.good luck with recovery!

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  8. Hi Crumpet, Thanks so much for your suggestion. I had not heard of the lightning process... I've now looked at it a bit and it is interesting. I plan to do some more research on the topic. I am definitely a believer in the mind/body connection .....and in being open to different options. I've tried many, many different things as well over the past two years, but I'm finally feeling like I'm moving in the right direction. Thank you again for your suggestion!....and support!
    Blessings, Jamie

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