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.

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33 Responses to “Hello Stranger”

  1. currankentucky June 25, 2014 at 9:42 am #

    First of all, great to hear from you. Secondly… congrats again on the engagement and on very best of luck with the wedding plans. And of course super duper congrats on where you are, what you have gone through and how well you are doing.. such wonderful news. I love that you are now focused on wellness and moving through the next phase, whatever that holds and love that you are going to write about it… writing is soul food, I’ll never tire of saying so! Hugs, wishes, hugs…. xx

    • myjourneythrume June 25, 2014 at 12:08 pm #

      Thank you Thank you! It’s lovely to hear from you too. Even tho I haven’t been blogging I have been thinking of you and hoping you are improving? I hope you are enjoying this burst of summer sunshine in Ireland like we are here. Writing is most definitely soul food, I hadn’t realized how much I’d missed it. Sending lots of love and hugs your way xxx

      • currankentucky June 25, 2014 at 1:44 pm #

        Yes, summer arrived to these shores and my birthday garden is in full swing, plants, flowers, birds, the lot! As for my health, since I stopped GET back in September I’ve had very few bad full on weeks. I’m much more balanced with my rest and writing etc and like you pain really is on the back burner. So long as I pace, pace pace, it’s all good. Not sure if you saw my posts recently but I’m busy compiling my first poetry book. I had seven poems published back in March in an anthology and am now working with that publisher to compile this book… due out in the Autumn! http://www.mariehcurran.com for more! Life is being kind to us… may it continue! xx

      • myjourneythrume June 25, 2014 at 3:01 pm #

        Oh my gosh, CONGRATULATIONS on the book deal! That is wonderful Marie. And I’m SO happy to hear your body is cooperating. Reduced pain is just such a relief isn’t it, when it has been so constant it’s just amazing to be without it. Right I’m off to check out your books, you published poet you! Seriously congratulations, it’s wonderful that something so positive has come out of such a devastating illness. Keep in touch 🙂 xx

  2. Claire June 25, 2014 at 10:31 am #

    Good to hear from you again – and with such a success story!!! I was skeptical when you said you were going to start the Lightening Process but I bought the book because I was curious (and willing to try anything!). I am so happy that your health has improved – not only for your beautiful life that you can have back now, but hearing the positives gives us others hope!!!! I’ll have to actually read the LP book now and see if it could work for me 🙂

    • myjourneythrume June 25, 2014 at 12:12 pm #

      Thank you! It’s lovely to hear from you. I hope you are doing okay? I hope my story does give you hope. It was only on hearing others’ positive experiences of the LP that I did it. I think we all get to things in our own time and when the time is right for us, so I would never try and persuade any one to do anything in their recovery but I would recommend reading the book and see what you make of it. 😊

  3. Miss P June 25, 2014 at 5:22 pm #

    Wow that such great news!! Congratulations!! My health is in a similar position to yours. I have been improving since September too & my physical body allows me to do most things now & without pain! But I still have a headache for the majority of the time & I still have brain fog so it is a massive relief to read that your doctors say it’s normal for the physical body to improve before cognitive problems do. I’ve been taking vitamin & mineral supplements, fish oils & probiotics since September & I’m on a selective diet & I think these have all been a key part in my recovery.

    • myjourneythrume June 27, 2014 at 7:58 am #

      Lovely to hear from you! Thanks for taking the time and energy to read and comment 🙂 Do you take the supplement enadh? That has really helped me with brain fog. And physio on my neck and shoulders has helped my headaches beyond words. I used to have a headache most of the time with it spiking into a migraine at least once a week or so. But after a course of soft tissue physio massage my headaches are much much fewer and much less severe on the odd occasion they do happen. I’m totally with you on the selective diet, what we eat is vital. I really hope you keep on improving.

  4. Jackie June 25, 2014 at 6:05 pm #

    Wow! Those pictures are stunning. They’re even more so knowing you took in those views while not having to struggle to enjoy or stay in the moment.

    Congratulations on your wedding! Mine is set for May 2015 so we aren’t too far apart.

    • myjourneythrume June 27, 2014 at 8:00 am #

      Thank you Jackie! I like looking back at the holiday photos, especially on days when symptoms are worse than my new ‘normal’. They remind me of what I’ve done and how far my recovery has come. All positive reinforcement. Happy to hear you’ve set your wedding date. That’s so exciting! How is the wedding planning going? I’m loving it 🙂

  5. BONNIE JOHNSON June 25, 2014 at 7:40 pm #

    I SURELY HAVE MISSED YOUR BLOGS & AM SO HAPPY FOR YOU & THE REASONS U HAVE BEEN ABSENT! SOUNDS LIKE A WONDERFUL 6 MONTHS! I HEARD A DR, SPEAK ON CFS 10 YRS AGO OR SO–I WAS IN MY 60’S & HE SAID THE OLDER U WERE WHEN U GOT CFS THE LESS CHANCE OF A RECOVERY & THAT THEY HAD MUCH MORE SUCCESS WITH YOUNGER PATIENTS! SO, U R AN AMAZING EXAMPLE OF THAT! AND ENGAGED TO BOOT–WONDERFUL! SUGGESTION–GO WITH A NICE SIMPLEDRESS! MUCH EASIER TO TRY ON & SOOO MUCH EASIER TO WEAR!! HAVE FUN.

    • myjourneythrume June 27, 2014 at 8:02 am #

      Thank you Bonnie! Lovely to hear from you. I am going to follow your advice about a simple dress. After trying on several the other week I was so tired and achy from all the fabric, simple dress all the way! Im afraid I’ve heard the same about recovery being more likely when you’re younger. But I hope you prove everyone wrong 🙂

  6. Michelle June 26, 2014 at 2:10 am #

    Congrats! On being back, on feeling better, on getting married and on being able to get back into life and travel and do things you weren’t able to before!

    • myjourneythrume June 27, 2014 at 8:03 am #

      Thank you thank you Michelle! I hope you are doing okay and pain is not too unbearable at the moment.

  7. Hayley-Eszti June 27, 2014 at 3:02 am #

    We have missed you! BUT I am SO pleased that things have been on the up, how amazing for you! This has made me so incredibly happy. All the best! Hayley-Eszti xx

    • myjourneythrume June 27, 2014 at 8:04 am #

      Thank you so much Hayley Eszti! Lovely to hear from you. I’m so happy to hear my news made you happy. I hope it gives you hope and inspires you as well. You can and will get through this illness. If I can make this much progress so can you 🙂 How are things? Are you in Spain or England at the moment? xx

  8. Elizabeth Milo June 29, 2014 at 3:09 am #

    Wow, Jess, I can’t believe it. I am so incredibly happy for you! I was hoping you’d come back to us and give an update. I have to say, it is emotional seeing your beautiful photos of Washington when I’m here and can’t see those things! But you give me hope… maybe one day I’ll see the Big Wheel down by the water (it’s only 15 minutes from me!) and the incredibly lush rain forest.

    I am thrilled you were here and celebrated your 30th and got engaged here! Maybe you’ll come back for your 10th anniversary or something and I’ll be well enough to meet you and Mr. B and clink glasses. Congratulations! Xx

    • Elizabeth Milo June 29, 2014 at 3:11 am #

      P.S. I’m very interested to know your current diet! 🙂

    • myjourneythrume July 24, 2014 at 5:36 pm #

      Elizabeth, it is so lovely to hear from you and I’m so sorry I didn’t see you whilst I was in your town. Keep believing and you will make it to the rainforest and the big wheel. I still can’t believe I managed it all. My current diet is plant based with some fish and sea food but no meat. Somehow I managed the whole trip to the US with only eating meat once! My digestion and energy are definitely better without animal products. Still gluten, dairy, egg and yeast free. But playing with adding back in small amounts of soya, almond and coconut. Am having some Lightning Process coaching soon to prepare for a proper reintroduction. How are you? How’s your diet these days? We will definitely be back in the north west one day, we loved it and then we will definitely meet up with you xxx

      • Elizabeth Milo July 24, 2014 at 5:42 pm #

        Ah, that would be lovely. 🙂
        My diet is boring. I’m not sure I could live without meat because of blood sugar issues. Do you eat a lot of legumes? I’m looking into changing up my protein. Hope your energy is staying strong! X

      • myjourneythrume July 24, 2014 at 5:49 pm #

        Yeh legumes, pulses, quinoa and fish and seafood for protein. I’ve found meat, if anything, makes my blood sugar worse, it’s like it’s too much for my body to break down and scuppers blood sugar, energy and digestion! We’re all so individual it’s hard to know what’s best to try. X

  9. Russell Stubbs July 1, 2014 at 5:40 pm #

    Hi there. Great to hear the progress you’ve been making, it sounds like you’re doing brilliantly! I’m actually an ME/CFS therapist. I used to be a Lightning Process practitioner. I found that the LP was very helpful for my clients and gave a good understanding of the processes that maintain ME/CFS. I found that teaching my clients some other simple physical practices can help to support the process and further clear stubborn symptoms.

    The first technique is a tapping or acupressure practice – similar to EFT, but without the use of affirmations – just a sequence of tapping points on the head and body – I normally encourage my clients to use this technique 3 times a day followed by a specific breathing technique. The entire practice takes around 10 minutes to complete and we’ve had great results from many Chronic Fatigue Syndrome sufferers.

    The reason they work is that you are consistently activating the relaxation response – which is an effective and necessary part of the healing (re-training) process.

    I also share a guided relaxation recording which I encourage clients to use at least once a day – for the same reasons.

    These “symptom reduction tools” are available to anyone for free from my website. You just need to sign-up to receive a link for the resources by email.

    I’m always amazed at quite how much change these simple tools can bring about when used consistently. I’d be interested to hear your feedback or that of anyone else if you choose to try them.

    You can claim the free tools on the right hand side of this page:

    http://www.fatigueguide.com/lightning_process_1-html

    I hope that helps and keep up the good work!

    Russell

    • myjourneythrume July 24, 2014 at 5:30 pm #

      Thanks Russell, I will have a look at your link for sure. I have used EFT in the past and found it powerful.

  10. Ami Hallgarth July 1, 2014 at 7:49 pm #

    So pleased to hear things have improved so much for you! Keep up the good work xxxx

    • myjourneythrume July 24, 2014 at 5:29 pm #

      Thank you Ami! How are you? I’m trying to balance life and rest so that I keeping moving forward xx

  11. thehomeschoolingdoctor July 2, 2014 at 5:54 am #

    I read this as soon as it came out, but I am only now leaving a comment! Sorry! Good luck with ALL of your plans! I am so relieved for you! May God bless you and keep you!

    • myjourneythrume July 24, 2014 at 5:27 pm #

      Thank you Terri! How are you and baby bump? I hope you’re not too uncomfortable, not long to go now? Into the mix of other happenings, we have sold our flat and are now looking for a house (in the country outside London with a garden so I can grow veggies!)! So it’s busy but I’m doing well. Pacing is key!

  12. Sarah July 4, 2014 at 8:49 am #

    Thankyou so much for this post! It has come at a time when your words have lifted me and added to my optimism to keep fighting. I’ve been ill with CFS for a year now after a virus, my whole life is at a standstill but I have an overwhelming sense that I will get through this in the end even though it’s so up and down and sometimes you can’t see the progress you’re making. I’m so happy for you! I feel this illness connects us all in some way, in a good way, in a compassionate loving way and I’m grateful for your stories. Thankyou x

    • myjourneythrume July 24, 2014 at 5:25 pm #

      I’m so sorry to hear you’re ill but so glad my blog has helped in its own little way. I’ve always believed I could and would get through the illness, though I definitely had some darker doubtful times. I think optimism really helped me. Time and rest unfortunately seemed to be crucial to my recovery but lightning process, yoga and diet were also key. I hope you are not feeling too bad today and never lose your positivity. X

  13. saunds22 July 24, 2014 at 4:54 pm #

    I’ve just stumbled across this post and love it! My doctors think I have ME and have referred me to a specialist which I have not yet seen but if I do get diagnosed it is so good to know there are people out there with the same condition who are getting better and moving on with their lives! I’ve just started a blog to try and get some sense of it all but it seems you have a success story which I envy deeply! Thank you for posting, and although I have only just found your blog I will continue to follow it from now on!

    • myjourneythrume July 24, 2014 at 5:21 pm #

      I am so sorry to hear you’re ill but I’m glad my blog has helped you. Don’t ever give up hope, you can get better from ME, it just takes some time. Feel free to get in touch with any questions, I credit my progress to Lightning Process, diet and yoga. I hope you are having a better day x

Trackbacks/Pingbacks

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