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.

Are you mentally strong?

23 Jan

myjourneythrume:

This post really made me think.

Before I was forced to embark on my journey thru ME/CFS, when I was / thought I was “well” I can’t claim to have had many, if any, of these attributes to my name. I wasn’t mentally strong. I didn’t know that then, it’s only with the beauty of hindsight that I see it now.

And now many more of these attributes ring true for me. ME/CFS has led me on a journey towards mental strength.

It makes me think, when we are mentally less strong, are we physically weaker too? I would hazard a guess as yes. And so if mental weakness contributes to physical weakness then surely that means it leads to / can contribute to illness, especially chronic illness such as ME/CFS.

The mind, meaning the brain and neurology, and the body are intrinsically linked, yet western medicine is only beginning to get to grips with such thinking.

This is all just my bed time hypothesising, over to you, what do you think? The less mentally strong you are the more susceptible to illness you become? Seems logical to me.

Originally posted on Poppyposts:

I found this on Pinterest today and when I read through them it made me think. I don’t practise some of these things that “mentally strong” people do. Maybe I should start. Have a read and let me know how you get on…..

Mentally strong

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A Trip Home in a Life I Love

18 Jan
Just a chair? Photo credit Pennywise via Morgue File

Just a chair? Photo credit Pennywise via Morgue File

This weekend I am travelling up to Lincolnshire to visit my parents and the house I still call ‘home’.

This is a big step for me. I haven’t been at home since last July, at a time when I was doing ME/CFS in a very genius way and suffering really badly with it.

I have spent large chunks of the last three years at home, too ill to fend for myself in the flat that I own with Mr B, the place that I also call ‘home’, in London. So there is a strong link between my home in Lincolnshire and doing ME/CFS for me. At home in Lincolnshire was where I was first diagnosed with ME/CFS, it was where I spent the first three months of the illness horizontal and mostly asleep. It was where I cried tears and tears as exhaustion and pain racked my body after simply trying to take a short shower.

Prior to ME/CFS entering my life, since leaving home at 18, my home in Lincolnshire was a place I loved to return to. It was a place to retreat to when I needed quiet time, be that to revise for University or Law School exams or for a restful weekend in the countryside with wonderful home cooking after a hectic work week in London. It was a place of solace that I loved.

And despite it being strongly linked to doing ME/CFS for me, it is still home and a place I love and I am so looking forward to returning to. It’s been six months since I was there, the longest period of time I think that I have been away in a long time, perhaps ever.

Even during the horrible horrible time of severely doing ME/CFS, I still enjoyed home. It was a bitter sweet time in a way. I loved that I had the opportunity to spend time with my Mum and Dad, which, had I been well and working, I wouldn’t have had. But on the flip side being ‘stuck’ (which is how it felt at the darkest times) in Lincolnshire served as a bitter reminder of my illness; I missed Mr B terribly and felt like I was missing out on life. Who would expect at the age of 26 to get the flu and become ill to such a bad extent that  3+ years later you’d still be recovering from the consequences? Certainly not me. It wasn’t exactly what I had planned for my life…

But I’ve always tried to see the positives in even the dreariest moment and so it is the same with my time doing ME/CFS at home. My parent’s house, my childhood home, was where I started a yoga practice of my own; which has been one of the biggest joys to emerge from me doing ME/CFS. Home was where I was looked after 24/7 without me even having to ask. It was where I watched the birds eat in the garden with snow on the ground; where I played the piano to relax; where I started this blog. And it was where Mr B’s love and care for me became ever more apparent as he week on week, month after month, made the 3 hour drive up the motorway on a Friday night to see me for the weekend;   even tho all I had the energy to do was to lie on the sofa and perhaps go out for a 10 minute walk round the village.

Yes being at home for so much of the last few years definitely had its up moments as well the downs. Looking back at it all now and contemplating returning there this weekend is slightly overwhelming and I do, if I’m on honest, have tears in my eyes as I write this.

Now I am so looking forward to being at home. After a while living in London I get a yearning for the countryside, clean air, trees, open space. I’m going for a week and it’s going to be so nice to be there and to be able to enjoy it; to be able to watch a film with my parents without having to stop it after 40 minutes because I’m doing very tired; to be able to pop to the local market town for a coffee and a wander (on my own two feet not in a four wheeled chair) without it breaking me and leaving me exhausted and with a pounding headache for the rest of the day; and to be able to go for walks in the countryside with my Mum without having a timer running ready to tell us to return home to comply with a highly limiting pacing protocol – tho admittedly I am still pacing to some extent but my boundaries are much greater, especially where walking is concerned – last weekend Mr B and I walked 2.5 miles! Not something I’m able to do everyday at the moment but just to be able to do it once without any adverse consequences other than tired legs in a good way (legs telling me ‘wow we’ve not been used like that for a while, need a little time to adjust!’) is still utterly amazing to me and something I don’t think I’ll ever come to take for granted, and if I do, you have my permission, someone slap me please.

I have been using the Lightning Process pretty intensely on going home to Lincolnshire. I have been breaking the old associations of being at home and doing ME/CFS and replacing it with me being at home and doing good energy, doing wellness and doing calm and happy. Each time one of the old associations has popped into my mind I have paused and done the LP on it. This way I’m interrupting the old  neuro pattern and building new much healthier patterns and neural pathways instead. And so my overriding mindset about going home this weekend is now one of positive calm and optimism. I am looking forward to it and doing things with good energy and wellness whilst I’m there. I don’t have that many plans for the week as resting and routine is still a big part of my daily life and necessary in continuing to rebuild and rehabilitate my body. But my Mum and I are going to a local spa for a day of pampering which will be wonderful. I’m looking forward to playing with my new camera with my Dad and letting his photography wisdom rub off on me (aim for the week: take camera off automatic mode! Start small hey?) and cooking with my Mum rather than sitting and watching.

The kitchen stool, an ME/CFS nemesis! Photo credit Jade via Morgue File

The kitchen stool, an ME/CFS nemesis! Photo credit Jade via Morgue File.

One final thing I’m particularly looking forward to is sitting on a kitchen stool and not a chair….this may sound very peculiar and trivial but it’s something that keeps popping into my head. I’m clearly still doing some stress about it so will be doing the Lightning Process on it lots in the next few days to brain rehearse me doing wellness and good energy and strength sat on a stool. When I was at home doing ME/CFS I was too weak to sit on one of the stools that sit under the kitchen table. So Mum and Dad moved a dining room chair into the kitchen for me. This eased the pain in my neck and shoulders as I had back support and it didn’t require me to have the energy to keep myself upright like the stool did.

In the very worst times of my ME/CFS I remember sitting on that chair and laying the top half of my body over the table as even sitting in a chair was too much; I needed to be horizontal. That is still a very vivid memory for me, but that’s a story for another post. The dining chair in place of a stool was the same scenario that played out in the latter years of my Nan’s life. In her late 80s and into her 90s Nan definitely deserved a chair! I’ve said before that doing ME/CFS has taught me new found sympathies for the plight of older people and so it continues.  Am I talking nonsense? Perhaps! Seriously though, very few aspects of life remain untouched and unaltered when you have ME/CFS, I guess that’s the significance of the chair instead of stool situation. It’s just one more example of how I am slowly regaining control of my body and my life rather than being ruled by ME/CFS. And it’s all thanks to the Lightning Process. At 29 years old I’m just very glad that I’m well enough to sit on stool!

I’ll be back later in the week reporting from hopefully a sunny Lincolnshire, until then hope you all have a great weekend :-)

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