Hello Stranger

25 Jun
Seattle Big Wheel at Sunset, the last stop of our road trip. Copyright Jess B

Seattle Big Wheel at Sunset, the last stop of our road trip. Copyright Jess B.

I cannot believe that it was cold dark January when I last posted.

And now it is sunny warm June. Where has the time gone?!

I didn’t intend to drop off the blogging planet with my last post. I love writing and connecting with you all. But something has held me back over the last few months from putting pen to paper, or fingers to keyboard as is more apt now-a-days. My Jounrey Thru M.E. was a real salvation and place of joy for me throughout last year. Writing my blog gave me a purpose and a focus and helped me through some very tough times. But as I was finding my feet with being so much better at the start of this year, my blog seemed too intrinsically wrapped up in being ill. It took me back to a very dark place. It made me feel uneasy and uncomfortable. Ultimately, I guess I feared that by reengaging in my old illness activities, of which blogging was such a big part, would somehow suck me back down the hole from which I was (and am) slowly but surely clambering out.

Hoh Rainforest on the Olympic Peninsula in Washington. Ethereal scenery. Copyright Jess B.

Hoh Rain forest on the Olympic Peninsula in Washington. Copyright Jess B.

But now I’m feeling stronger and more sure of myself. And over the last few weeks I have felt a yearning to write again.

The obvious question I guess is, what have I been up to since January and how the hell am I?! I’m assuming you guys would like to know… (if not enjoy the holiday snaps!)

Answering the second question before the first, I am doing really well. Amazingly well. I have to pinch myself sometimes to remind myself that it is actually real.

What I have been able to do since January shows just how well I am doing:

  • I traveled to Scotland to attend my cousin’s wedding. This was the first wedding I had been well enough to attend in nearly 3 years. I even (briefly) joined in on the Ceilidh dancing and had a little slow dance with Mr B.
  • April saw me and Mr B head off to the US for a 3 week road trip from Vegas to Seattle through California. We had the most amazing time. I walked onto the plane, not a wheelchair in sight! I played a little roulette in Vegas, jumped into the air on sand dunes in the 120ºF heat of Death Valley, drove up Highway 1 in our Mustang convertible, stayed in a yurt, ate sushi watching the sunset over the Pacific ocean in Big Sur, hiked in Yosemite, walked up and down the hills and went to the baseball in San Francisco, walked through the rain forest and in ten foot snow on the Olympic Peninsula in Washington and celebrated my 30th birthday with cocktails and dinner out in Seattle. It  was a magical 3 weeks. Not least, because after ten years together, Mr B asked me to marry him. Through tears of sheer joy and happiness I said yes! We’ve set the date for August 2015 and I am now knee deep in wedding planning and absolutely loving having the energy to do it!

    Snow a top Hurricane Ridge on the Olympic Peninsula. Copyright Jess B.

    Snow a top Hurricane Ridge on the Olympic Peninsula. Copyright Jess B.

  • I flew to Philadelphia to visit my sister by myself (I know at 30 this shouldn’t be a big deal, but a year ago it was unimaginable due to my fatigue and pain levels) and we enjoyed lots of ‘normal’ sister time, shopping, eating out, cooking together to name just a few.
  • A couple of weeks ago, a dear friend was in hospital in Manchester. I went up by train (2.5 hours each way) to visit her and spent all of the afternoon in the hospital. I was so pleased that I was well enough to do that.
  • I’m up to swimming 30 lengths a couple of times a week and practicing yoga for a longer time even with more intense sequences.
  • I cook most evenings and can easily take care of the laundry on a day to day basis. I even did some ironing last week – the first time in 3 years!! As silly as it sounds ironing is actually quite an intense physical activity requiring you to stand and use your arms at the same time.
  • As lame as this is going to sound, I love that I can now drive to our local supermarket, push the trolley and walk around the store and do the weekly shop all by myself! ME/CFS, and other chronic illnesses, rob you of all aspects of your life and I have really found enjoyment in being able to do the minor, mundane things that before I was ill, I took for granted like so many others – even cleaning the bathroom (which I don’t claim to be able to do very often, and thankfully we are lucky to have a wonderful cleaner who lightens that load)  and pairing up Mr B’s socks make me smile now!
  • I caught a bad cold virus just before we went to the USA but recovered within a week like a ‘normal’ person. It did not wipe me out for weeks as they have done previously.
Sunrise in Death Valley. Copyright Jess B.

Sunrise in Death Valley. Copyright Jess B.

I could go on and on about what I can now do without riling the ME/CFS beast. In both big and small ways I am improving day by day.

Although I am very much still on my journey thru ME and I am not completely recovered (nor realistically may I never be), the illness has a far, far, weaker grip on me and my life.

  • I still have limits but I can do SO much more than a year ago before I reach them. And when I do hit the wall, I listen to my body and stop. I take a nice warm bath, do a long relaxing yoga nidra and get a good night’s sleep. Then I’m just about back to my new normal the next day.
  • I do get some post exertion malaise but it’s just fatigue and not usually joined by spikes of crippling myalgia pain as it used to be. Sometimes the fatigue is a vague foggy sleepiness other times it’s an acute exhaustion. But I now believe/know it will pass. I’d be lying if I said that I don’t sometimes panic and fear very deeply that the ME/CFS is back and I’m about to relapse. But the severity of that fear is reducing as time passes.
  • Muscular skeletal pain and aching limbs used to be with me 95% of the time. Now it’s much reduced, probably to as little as 20% of the time. The bouts of pain are less severe and shorter in duration too, usually coming immediately after/during pushing myself (e.g. trying on wedding dresses for 2 hours – some dresses are so heavy, and therefore hard going on my body, due to the miles of fabric and netting involved!) but are relieved by a restful evening and good night’s sleep.
  • Whilst my nervous system is much calmer, my stress responses are still more overly active than is healthy. Anxiety and overwhelm are in some respects worse now than before as I do things I haven’t done for a long time and put myself in unfamiliar situations. But physically being able to do these things is huge and wonderful progress and I am working on using the Lightning Process and NLP techniques to curb the emotional side effects.
  • Physically I am stronger than I am cognitively. Concentration and focus is still a battleground. But my doctors tell me this is very normal. The physical capacity returns sooner and quicker than the cognitive and as we expend our energy more on physical activities our cognitive ability can suffer in the short term due to lack of available energy. But I have been writing on this post for nearly an hour and still feeling fairly awake and alert. That in itself is progress.
Big Sur Coast Line, Hwy 1, California. Copyright Jess B.

Big Sur Coast Line, Hwy 1, California. Copyright Jess B.

If you’re new to my story, then you may be wondering what has propelled me towards recovery. Back in October 2013 I did the Lightning Process course and I haven’t looked back since. The tools I learnt during that course have been the keys to unlocking my recovery. I know that sounds corny and disbelieve if you wish, but without the LP I wouldn’t be where I am now. It is not a magic cure, but it is a highly helpful, scientific and neurological, approach to the mystery that is ME/CFS. Diet also plays a HUGE role for me and eliminating certain foods over the last year, and transitioning to a meat free diet since January, have been vital in obtaining and maintaining the level of health I currently have. Yoga, meditation and relaxation have also been important.

Now I am looking to the future and wanting to grow and move forward. I plan to set up a new site that focuses on wellness and vitality in general, as opposed to my personal experience of the illness ME/CFS, as this blog has been. Striving for, and maintaining, wellness and vitality, are my mindset and focus now. My experience of ME/CFS is the spring board for this. I have learnt so much and my life is genuinely much richer from having been chronically ill. I want to honour this and put the last few years to good use. It is important to me that I don’t feel these years of being devastatingly and life haltingly ill, have been in vain. Everything happens for a reason. Every experience shapes us and prepares us for the next stage. This may sound like a lot of waffle, but coming to this way of thinking has helped me make peace with, and accept, what I’ve  been through on my journey thru ME.  And thus my new site will be born! Watch this space for more info. I promise to keep you posted on here and I hope many of you will follow me onto the next stage of my journey.

That is not to say that this is the end for My Journey Thru ME. Not at all. I hope to continue posting and sharing my experience of recovery, as I think that could be helpful for others. I’m also thinking about writing my story of ME/CFS in a narrative or story form and publishing sections as I go on here. I want to preserve what I’ve been through as a learning tool for myself and others. And I think a light heartened tale of all the wacky ‘cures’ I’ve tried would make for a fun read!

Before I go I just wanted to say a huge thank you for all the supportive comments and emails I have received throughout the time I have been writing this blog; and especially during the last 6 months when I’ve been MIA. It is really humbling and I am grateful to you all. And I will, I promise, gradually reply to them all.

Yosemite National Park. Copyright Jess B.

Yosemite National Park. Copyright Jess B.

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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