Hello, can you hear me, am I getting through to you….

31 Jan

It has been a rather mixed week for me. Amidst the euphoric feeling of reaching day 100 of using the Lightning Process and doing so much better thanks to it, I’ve also had a raft of symptoms rear their ugly heads. I’m not sure why. I have a few theories but I’m trying hard not to over analyse (I’ll let you be the judge of how successful I’m being on that front…)

Taking the Lightning Process approach, I think it’s my body’s way of giving me ‘feedback’ it’s trying to tell me something that perhaps so far hasn’t quite got through to me…, slow down we’ve still got work to do. Keep using the LP, use it more intensely again, don’t eat meat, take it more gently….And boy is it going to town with telling me. Enough already body. I’m listening, you’ve got my attention, I get ‘it’…though still figuring out exactly what ‘it’ is.

It all began on Monday when my digestive system decided to go on strike. Big bloated belly is me with very little to no action in the waste disposal department and all the abdo pain joys that goes along hand in hand. This carried on for a few days only gradually improving yesterday. Today I still resemble a mildly pregnant lady with my swollen tummy.

But that’s not the worst of it. Nope just the beginning in fact.

Day 100 of A Life I Love

Tuesday was day 100 of me using the Lightning Process- woohooooo! I celebrated by going for a lovely walk with my Mum in the crisp winter sunshine. We walked 2.54 miles! Woop! I’ve been managing that sort of distance a couple of times a week with no ill effects since Christmas. Yay me. That was Tuesday morning. Tuesday afternoon saw me doing increasingly tired, a sleepy hangover tired rather than ME/CFS hit brick wall crippling tired, and in bed with a bad headache. This is the first headache for which I’ve had to pull out the big guns (extra strength co-codamol and darkened bedroom at 4 in the afternoon) in a long time, weeks if not months – the lightning process and/or the trigger point physio I’m having really seems to be working a treat. After the big guns were released and some uber gentle yoga (cue Mum and Me in legs up the wall pose) my head cleared tho the tiredness remained.

A Funny Turn

Wednesday saw me driving to our local Westfield shopping centre (literally 10 minutes away, I love where we live!) and Mum and I doing a spot of shopping. We’d been there about an hour, a good proportion of which had been spent sat down whilst my Mum drank the biggest coffee in the Universe (the mug had two handles!), when I suddenly became incredibly hot and tired. Within seconds my legs and arms felt heavy and incredibly weak. I was light-headed and could feel my heart racing. My legs and arms were throbbing and my hands were visibly trembling. I felt so shakey and week. It was horrible.  Thank God Mum was with me. She steered me to the nearest seat, thankfully we were stood opposite a Costa coffee shop.With shaking arms I stuffed several fruit and nut quinoa cereal bars into my mouth along with gulps of fruit smoothie. This is sadly not my first ‘funny turn’, I know food usually helps but as with the last couple of times it has happened it took more food than it used to. I was still shaking and very white and my legs were throbbing. We put my legs up on a stool and gradually I felt the throbbing and heaviness subside and after about 30 minutes of sitting and several cups of green tea later I felt strong and stable enough to stand up. I was very close to tears during all this, not least because the ‘I thought I was better’ line and ‘why does this keep happening’  kept repeating in my head. Mum snapped me out of it ordering me to do the Lightning Process to calm myself down. Mum’s are always right aren’t they? I felt calmer and much less panicked after talking myself through the process.

Prior to doing the Lighting Process and taking back control of my body and my health these funny turns were a relatively regular occurrence for me; they were part of me doing ME/CFS and/or POTS. They had thankfully calmed down through the Autumn. But since Christmas they seem to be on the increase again. I had a similar incidence when I was out with Mr B just before New Years, once when I was at back at my parents’ last week and a couple of times after showering. The latter makes me think it’s something to do with orthostatic intolerance and standing up for too long. But yesterday I was wearing compression stockings which usually helps. My latest bloodwork  is better than my GP has ever seen from me so I’m at a bit of a loss as to what’s causing it which makes it pretty hard to prevent. My specialist is helpfully on holiday for the next month (probably on his yacht or at his house in Barbados, something tells me I pay him too much…) so instead I’ve contacted my physio, my dietician and my GP to see if anyone has any advice. Feel free to chip in if you have something that might help. Please!

I felt pretty dazed and a bit shakey for the rest of Wednesday and very tired. Yesterday, Thursday was better, no funny turns – yippee! But the myalgia and general achiness in my arms, neck and shoulders was far worse than it has been for months. My shoulders and collarbone particularly hurt. You may wonder how a collarbone (rest assured I didn’t bash or break it) can hurt, me too, but it did.

Chicken Tonight…errr No!

I have a burgeoning theory that this ‘bad’ week is possibly down to food; more precisely, down to chicken. That may sound crazy, maybe it is, I don’t know. I had chicken (a nice big breast baked in jamaican spices) on Sunday for the first time in 3 weeks. Since Christmas I’ve been eating a plant based diet and avoiding all meat, both red and white, as I suspect this will give me better energy and improved overall health. More on that in future posts. So I had chicken on Sunday and then everything has unravelled. It would seem logical and pretty obvious to tie the constipation and bloating to the chicken and probably the tiredness and the headache too – the toxins from the poorly digested meat in my gut could logically have caused that. But can it be that simple? Is my gut really at the heart of everything? To be honest I vehemently hope it is, because that would be a pretty easy thing to solve, bye bye chicken (Mr B trembles in horror!! Don’t worry my love I’ll still cook you meat…) But it almost seems too simple. And the funny turn? Given they’ve happened both when I’ve eaten meat and when I haven’t it would seem to me that that is something separate, but who knows. I’m going to try and trace a pattern through it all. But it’s kind like wading through waist high mud….

I perhaps shouldn’t be  complaining  focusing on the symptoms this week and instead be grateful that I have been relatively spared the pain and discomfort of ME/CFS in recent months thanks to using the Lightning Process. When I think of fellow spoonies still suffering 24/7 and compared to how I was when I was doing genius level ME/CFS I really have nothing to complain about.  And I am grateful for that. Honestly I am. But I’m also rather frustrated and flabbergasted. I want to know why, why God damn-it why?! If only my body could talk in actual words, then maybe I’d know what the heck was going on.

Until then, am I talking gibberish? Or does my chicken theory have legs? (hehe!)

Anyone experienced anything post Lightning Process symptom flares? How did you cope with it?

And if anyone can shed any light on the ‘funny turn’ in the absence of my specialist, then I’ll be forever in your debt 🙂

For now, yes body, I am listening to you, but could you send me an email with what you’re trying to say clearly typed please? I’m a lawyer, I like precision, enough already with these vague signs! Many thanks.

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21 Responses to “Hello, can you hear me, am I getting through to you….”

  1. someonesideaofluxury January 31, 2014 at 9:06 am #

    I’m interested to hear about how you are going with the Lightening Process, as I’ve read a fair bit about it lately.

    • myjourneythrume January 31, 2014 at 9:08 am #

      You can probably get quite a bit of insight into how I’ve been doing with the LP by reading my past posts. I did the 3 day seminar training course in October 2013 and since then my life has changed so much. I’ve tried to show this in my blog posts. I’m working on a post about the LP in general at the moment to try and give insight into what it is and how it works. Hope that helps. Thank you for reading and commenting 🙂

      • someonesideaofluxury January 31, 2014 at 9:18 am #

        Thanks for writing such a good blog 🙂 I will go and read up on what I’ve missed in the past few months.

      • myjourneythrume January 31, 2014 at 9:40 am #

        Thank you for such a nice comment you really made me smile 🙂

  2. The Chronic Situation January 31, 2014 at 11:23 am #

    Hi, I’ve been following your progress with interest, and am glad to hear you are still improved.

    Just about your recent difficulties, I think it is important to point out that there is a lot of information about people’s experiences with the Lightning process on the Net. It has helped some people, for others it has done nothing, and others still have got worse after using it, as they have overdone things thinking that they were cured.

    From my perspective it is a management tool, that works well for some people, and badly for others, but it is clearly not a cure. It is clear that you still have ME symptoms, even using the LP, and though they may be less severe, they are still there.

    The reason that you are experiencing symptoms now is the same reason you were going through them six months ago, ie that you have, like many of us, a dysfunctional immune and/or central nervous system. No amount of positive thinking or LP techniques can fix that, it is necessary to look down other avenues for complete recovery.

    I hope that this does not seem critical, as that is not my intention, but I do think that it is important to be realistic about the treatments we try. The LP people seem to have a very fixed view on things, and do really believe in their own ability to cure everyone, but that is not borne out by the facts. We have physiological dysfunctions that may be helped, but that are not fixable by techniques like the LP.

    • BONNIE JOHNSON February 1, 2014 at 5:18 am #

      WELL, JESS, U’VE HAD SOME TOUGH REPLIES. HERE’S MINE FROM A ”VETERAN CFS’ER OF 12 YRS, NOW… THE BOTTOM LINE, IN MY OPINION; U CAN NOT EVER OVER DO IT, NO MATTER WHAT SEEMS TO BE HELPING! YOU HAVE BEEN MEGA OVER DOING IT FOR SOME TIME. YOUR LAST BLOG ABOUT YOUR TRAVELLING PLANS TURNED ME ”GREEN”–CRAZINESS–TALK ABOUT PUSHING IT. RIGHT NOW, I’M DOING WELL TO MAKE A VERY SIMPLE MEAL, SOMETIMES MAKING IT TO THE KITCHEN IS A TASK & GETTING READY & OUT THE DOOR FOR A WEE BIT OF SHOPPING IS A MAJOR TASK!! PERHAPS WE ALL NEED TO LEARN RESTRAINT IN THOSE DAYS WE ”ARE” FEELING BETTER & BECAUSE OF THAT, THINK WE CAN TAKE ON THE WORLD! I DON’T BELIEVE THAT IS RATIONALTHINKING WHEN WE HAVE CFS. SLOW & STEADY WINS THE RACE? IN OUR CASE IT’S A BIG ”IF”! BE WISE, BJ.

    • Chronic Pain Heroes February 2, 2014 at 11:12 pm #

      Well said

  3. currankentucky January 31, 2014 at 2:06 pm #

    First off, congrats on the walking trips!!!! Jealous!!! As for the funny turn. I find if I stand for any length of time and/or push it… then bam… just as you describe in your funny turn. For me its my body screaming STOP! When I do and rest and pick up the pieces and pace… no more funny turn! Perhaps our bodies should learn morse code or something a less intense for us to hear??!! Wishing you a better weekend. xx

  4. thehomeschoolingdoctor January 31, 2014 at 2:07 pm #

    Sorry, Jess. A rambling comment. Journeys to all destinations have setbacks. You may figure it out; you may not, eh? It does not sound crazy to have intolerance to chicken, from a person who doesn’t tolerate chicken (and like you, I can’t do eggs nicely either–no chickenish stuff for me). These food intolerances I have, to me–who doesn’t have ME–are a sign that something is not right. I should be able to eat small to moderate amounts of most things. I haven’t found what it’s going to take to let me eat chicken, eggs, nuts, coconut, grains, and dairy again–but I will keep looking. (Although I’m kind of stuck on trying anything out due to my current situation–unless it’s food based.) I think of you often and send up requests way up high on your behalf, just know that. The Chronic Situation up there had some good words for all of us. We can make ourselves feel better (you with LP, some meds, and food exclusion, etc–me with food exclusion), but that doesn’t change the whole underlying cause. Until we root that out (if we can root that out), the best we can hope for is control. I’m pleased with control, but it’s hard. Yours is even harder because your symptoms are so much worse and so unpredictable. I’m sorry. But, it is just a relapse, you’ll rebound and have the energy to keep learning! I hope any of this makes sense!

  5. cttbbelliott January 31, 2014 at 4:57 pm #

    So hoping you are going to be doing better soon chicklet. Really pleased that you’ve had the great reprieve from being bedridden so much of the time. Considering you have had these episodes prior to the chicken meal, that in itself says something. No suggestions from me. Don’t know what to tell you. Just want you to know I am thinking about you and putting you in prayer. Brenda

  6. triciaruth January 31, 2014 at 8:17 pm #

    Firstly, keep up the positive feelings that you’ll keep improving and, you’re right, you can often learn more about your body from a setback than from when everything is going ok.

    However, It may be just me, and I don’t know if it is part of the LP process specifically, but the phrase ‘doing’ ME or ‘doing’ tired has incredibly negative vibes both from an individual point of view and for the disease as a whole.

    Saying you’re ‘doing ME’ or ‘doing tired’ implies that there is a choice in the matter – you wouldn’t say that someone was ‘doing’ cancer or ‘doing’ diabetes. You have a physiological and neurological an immunological and many more ‘ological’ conditions that you need to learn to manage.

    That gets to the personal negativity…positive energy is so important in managing ME/CFS and the LP has obviously been great for you in this. But (and again this could be just my interpretation), by being so disparaging about a time in your life when you were struggling with a disease you – and your doctors – didn’t understand or know how to manage, is effectively being negative about yourself for something that was, at that time, out of you reach because you didn’t know how to take control. You wouldn’t say that someone who couldn’t read was ‘doing illiteracy’, you’d say that they hadn’t been taught the appropriate skills to master that aspect of their life.

    You need to accept all parts of your life, good and bad (and now I’m going to sound vomit worthy!) with love to be able to move forward as a whole person.

    Again, this may be me waffling on about something I’m not fully informed about and I hope you get back on your feet soon.

    Not sure about the chicken – I’d have thought that would have been the most innocent of meats to start with. It may be worth trying just plain old chicken another time to eliminate any issues with the sauce? Or it could be just your body struggling to digest protein after a break – might it be worth upping your veggy protein intake before trying meat again?

    Good luck!!

  7. cttbbelliott February 1, 2014 at 2:23 pm #

    Hope you just have to relearn how to take it easy now. God bless and keep us posted as to how it is going for you. Maybe pass some of that energy over to us. lol Hugs, Brenda

  8. E. Milo February 1, 2014 at 5:09 pm #

    Have you checked your blood sugar during these episodes? If food helps, hypoglycemia is the first thing I would look at. When my blood sugar drops, it is HORRIFIC. It is a very small issue in the grand ME-scheme of things, but it is the MOST pressing issue when it happens because you need instant recovery.

    I’m going to throw out the opposite theory to you- when I reduced my meat consumption, my blood sugar got much more unstable. For the last month, I have been eating much more meat than usual and, yes, I am having more IBS issues, but far fewer blood sugar crashes.

    I still have to manage my blood pressure carefully, though, and maybe that’s all yours is. For me, blood pressure dips are similar to blood sugar dips in terms of weakness, spaciness, vision problems, light-headedness, only the latter involves much worse shaking and anxious feelings. I say, get yourself a blood pressure monitor and a blood sugar tester and rule out those issues. X

  9. Lauren February 2, 2014 at 3:52 pm #

    I was thinking blood sugar too. Not sure why exactly it would suddenly be thrown off balance like that, but I guess given all the changes you’ve been making lately, it’s understandable that your body’s going to be a bit confused every now and again as it adjusts to having more asked of it. Not sure if that’s at all scientific, but hey! Really hope things will become more stable for you over time.

    I also just wanted to say that I think the progress you’ve been making is fantastic and inspirational. I initially found it a bit weird to read about ‘doing’ tired etc, but thinking about it, I actually find it really positive to hear it phrased this way… much more so than the hopeless thoughts of ‘argh, I’m so shattered and there’s nothing I can do about it!’ which for me makes me feel like a victim of my symptoms. It’s refreshing to hear a different take on things and challenging me to think more about my own attitudes. So thank you!

  10. Chronic Pain Heroes February 2, 2014 at 11:24 pm #

    Oh Jess, I truly am sorry that you are having this set back. But, as others have said, you didn’t choose for this to happen. Yes, I do believe in the power of NLP and I do believe that my thoughts do impact my body (stress is such a major trigger). Unfortunately, ME/CFS is not a psychological illness. I do pray that you will recover quickly and enjoy many more active days. As one other reader shared, I too have been green with envy as I read about your days of shopping and walking around. But I also was so happy for you! You do so much to help us and I was happy to hear of your incredible progress. Please take it easy now. Get the rest you need. (I should listen to my own advice)

  11. hayley-eszti February 3, 2014 at 4:45 pm #

    Jess, walking that far with no ill effects is so great! Well done you and well done to your legs! I’m sorry to hear you have been having some not so great symptoms though. It must be hard to accept them after you have been doing so well, but you can overcome them I’m sure, hopefully it’s just a blip and like you said, your bodies way of saying we still have work to do. Behave now Jess’ body, you’ve been doing so well! xx H.E http://www.hayleyeszti.blogspot.com

  12. celestedimilla February 11, 2014 at 12:43 am #

    It would be wonderful if abstaining from chicken really is the answer for you. I’ll keep my fingers crossed! Celeste 🙂

  13. thehomeschoolingdoctor February 14, 2014 at 12:53 pm #

    Thinking of you!

  14. Becs Paine June 12, 2014 at 1:29 pm #

    Hi there, im with a couple of other people- im thinking it could be your blood sugar dropping, especially as you’d just had a coffee, caffeine used to do that to me all of the time. I have CFS/POTS/IBS but since following a paleo diet my symptoms have improved, especially the Paleo Approach, and my blood sugar has been much much better. This in turn gives me more energy and I am calmer. Be kind to yourself and take it easy on yourself, listen to your body too. Lightning Process is great for many things and if it works then excellent, but it doesn’t help you to listen to your body so much, I have tried it. It has worked for many though.

    • myjourneythrume June 24, 2014 at 8:21 am #

      I think it was a blood sugar drop too, though not coffee related as I only drink green tea. I tried the paeleo diet a while back but it made my digestive symptoms worse. Each of our bodies is so individual isn’t it, I find plant based meat, gluten and dairy free to be the best for me.

Trackbacks/Pingbacks

  1. My Journey Thru M.E. Part 4: Living Recovery in 2014 | my journey thru M.E. - December 8, 2014

    […] turn’ whilst out shopping with my Mum. Suddenly very hot, dizzy, nauseous and achy. Had a week of relapse with bad ME/CFS symptoms again. But pulled myself out using Lightning Process techniques. Continued […]

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