The Secret of Chronic Illness

21 Nov
Copyright Jamie Weisman.

Copyright Jamie Weisman.

My sister sent me this quote a few months ago as she thought it was apt for me and what I’ve been through in recent years. I related to it the instant I read it. This is exactly what it’s like. It was comforting to read someone else’s words express so succinctly what, until that moment, I hadn’t quite been able to put my finger on.

Before I was ill, I ‘catastrophised’ and worried about EVERYTHING. With hindsight I can see that fear played a pretty large role in my life. If someone had told me 5 years ago that my life was going to be turned upside down by a chronic illness I would have been terrified. If I had been told that I would end up having to stop work and give up my career and wind up living back with my parents, away from my boyfriend and friends, too ill to go out other than for a short walk or in a wheelchair, too ill to wash and dry my own hair or to listen to the radio or cook or do any of the other things I love, I would have been petrified.

But somehow when all of these, horrible and unwanted, things did happen, I survived. I fought and, touch wood, I have managed to claw myself out the other side. If someone had told me that I would manage, for the most part, to live through all of this, with a smile and a positive attitude, I would have laughed in their face! Having a chronic illness has made me much more positive. That’s not to say I no longer worry, I still do. But it’s less catastrophic! I guess once the worst has happened – losing control of your health – you have no reason not to be positive. You’ve hit rock bottom. The only way is up.

That’s not to say that I wasn’t scared. I was. I was absolutely terrified. At the beginning I was bewildered and so very very scared. I had no idea what was wrong with me. My parents didn’t know. My Doctor didn’t know. And the unknown is utterly terrifying. As time passed I was so frightened that I was never going to get better. And as I did make baby steps of progress, the fear, that I would go backwards and get even sicker, grew stronger. But I learnt to balance the fear with the need to keep on living. I channeled my energy, what little I had, into living.

Amazingly, I managed to keep smiling. And despite my life being so different to where I thought I would be age 30 (high flying corporate lawyer living a busy London life), I am now, oddly, grateful for my illness. I am a very different person, a better person I would say, because of the enforced pause my life has taken due to my chronic illness. That is not to say that I don’t miss my old life and the old me. I do. Or rather I did.

All those sayings are true: ‘when life gives you lemons, make lemonade’, ‘learn to dance in the rain’, ‘I’m not afraid of storms for I am learning how to sail my ship’. This is not a rose tinted glasses moment. Clinging onto a positive outlook, and listening to empowering quotes such as these, helped save me.

In the quote above, Jamie Weisman says it exactly right. You learn to live with the fear. When the worst happens you do adapt and you do carry on with life. You have to, otherwise you’ve let your illness win. And that was something I was very determined never, ever, to let happen. You do compromise and you do have to accept losses. You have to grieve for the life you used to have. But ultimately you keep on living.

No person’s personality and situation is exactly the same as another’s, and so it follows that each person’s experience of chronic ill health is different. There is no one size fits all. That’s what makes recovery so challenging.

But if you can manage to let in a little of the secret, your struggle will become ever so slightly easier. No one’s saying it’ll be easy. But, as someone who has been there, trust me, it’s very worth it.

Time Flies…

18 Nov

..when you’re doing well.

Is it just me, or has 2014 flown by? How is it already mid November and Christmas is next month? Next month!! Must start my shopping!

I last posted in June, which paradoxically feels both like it was literally yesterday and a life time ago.

Time is a funny thing. That’s my conclusion, hugely insightful don’t you think?

Life has been pretty hectic for me since June. Actually scrap that. In comparison to my ME enforced hermit type life of the previous few years, my life since June has been crazily, manically, incredibly, magically busy. In a good way. A very good way. It is wonderful to be able to be so wonderfully busy. That’s not to say that it has all been plain sailing. It hasn’t. There have been some bumps in the road where my health, namely that dear old friend ME/CFS, has got the better of me. But for today I want to focus on the good and save the bad and the ugly for another post.

I am doing well. For the most part my health issues are the back drop to my life, rather than taking centre stage; which after the ordeal of ME/CFS over the last few years, is amazing and just simply the biggest relief. I have to keep ME/CFS in mind and take it into consideration each day but it is no longer ruling my life with an iron fist.

There has been so much going on for me in recent months that it’s hard to explain what my average week has been. Rarely have any two weeks been the same. The stringent structure of life with ME/CFS is gone.

Our wedding cake trial. Copyright Jess B.

Our trial wedding cake. Copyright Jess B.

Over the summer, which is long forgotten now we are fully submerged in British autumnal greyness, my sister was home from America and we went on a family holiday to the gorgeous Norfolk countryside. I also spent a couple of weeks back at my parents whilst Lou was here, during which we made a trial of the wedding cake. As pictured here, what do you think?

I have spent much time researching and making arrangements for our wedding. There have been several trips to Cambridge (where Mr B and I met whilst at University and where we will marry next August) to visit venues and meet with suppliers. I even drove up there by myself for one visit. 60 miles of motorway driving, no small feat for a girl who a year ago was too poorly to drive more than 5 minutes down a country road. I have learnt to revel in both the big and small milestones of being so much better. But that’s a theme for another post. The ceremony and reception venues for our wedding are booked, as are the florist, the DJ, photographer, videographer, hairdresser, beautician and accommodation. Save the Dates have been sent! As I say, I’ve been busy!

I went wedding dress shopping twice with my Mum which was great fun, though very tiring. Turns out the style of dress (tea length, big 1950s style underskirt with lacy straps and sleeves) I originally wanted totally doesn’t suit me and, worse than that, are really heavy, very hot and made the myalgia in my neck and shoulders flare up. So that idea was scrapped. And on the second shopping trip, at just the second shop we visited, I found my gown!! I said Yes to My Dress!! (And yes I have spent far too much time watching trashy wedding shows on TV).

St John's College, Cambridge. Where we will marry next summer. Copyright Jess B.St John's College, Cambridge. Where we will marry next summer. Copyright Jess B.

St John’s College, Cambridge. Where we will marry next summer. Copyright Jess B.

Mid summer, in the midst of all the wedding planning, Mr B and I decided to put our flat on the market with the intention of moving out of London and buying a house. This had always been in our plan long term, just a few years down the line. But thanks to the London property market booming we decided the time was right and we should sell and move sooner rather than later. This all got rather ugly before it got better, and I’ll save that for another post. But enter hours of online property searching, lots of very long Saturdays driving and viewing houses never mind keeping our flat tidy and being out during viewings.

Throw in a trip to Manchester (3 hours by train) for a 30th birthday, several weddings, two trips back to Shropshire (4 hours drive) to visit Mr B’s family, not to mention day to day living (I genuinely still love that I’m well enough to do the laundry and hang it up to dry by myself, going to Tescos to do the weekly food shop, cooking dinner most nights, washing up etc etc) and I think it’s safe to say my life is busy! I am doing so well health wise because I’m still standing!

Mr B and I also enjoyed ten days of relaxation and sunshine in the Caribbean last month which was blissful. Two 11 hour transatlantic flights in the space of a fortnight and soaring temperatures…no problem for this ME/CFS recovereé! I also went to the Yoga Show a few weeks ago. This is a giant exhibition of all things yoga, meditation and well-being. I’ve wanted to go for the last few years but never been well enough. But this year I went; by myself; joined in on some of the free yoga classes and learnt lots. To show just how good I felt that day, after 4 hours or so at the show I walked a mile or more to the local Whole Foods and treated myself to an amazing Raw Banoffee Pie. This was all sandwiched between two hours of travelling across London to get to the show.

Caribbean Bliss. Copyright Jess B.

Caribbean Bliss. Copyright Jess B.

At times I struggle to see what I’m doing with my life now. With no fixed routine, it’s easy to feel lost. But reflecting on the last few months in writing this post, I see just how much I’ve achieved both in a practical sense of ticking things of my wedding to-do list, but also what these practical things say about how well I am doing health wise.

As I say above, it hasn’t all been easy and there have been periods of relapse and set backs. I’ll talk about them in a future post. Suffice to say for now though, despite these set backs I have come out on top. I’m still taking most of my medication and I tend to need a rest early afternoon most days. I function best when I don’t have back to back busy days. I still need more quiet rest days at home each week than days out. But that’s okay. That’s doable and allows me to live a life I love overall. And actually when the quiet days involve yoga, meditation and relaxation, reading and a walk, without crushing fatigue and pain, I really can’t complain.

Although being able to busy is wonderful, I am trying to slightly redress the balance at the moment. I am trying to dampen down the busy-ness for a more balanced life and allowing healing to come centre stage again. But this is my choice and so very different from the enforced rest, pace, sleep, repeat, pattern of my last few years. I am doing well. But I believe I can do even better. Even stronger. Calmer and more balanced. Returning to blogging is part of this outlook. Blogging is wonderful therapy. It gives me the opportunity to pause and reflect without which I all too easily get wrapped up in a current of frantic crazyness!

So hopefully, I’ll again be a regular presence in the blogger-sphere. And if not, I give you permission to harass me. Accountability is a wonderful tool.

If you’re struggling with a chronic health issue or know someone who is, I hope this post gives you some hope and shows you that there can be light at the end of the tunnel. I hope it gives you a few moments of solace. If things improved for me then they can for you.

Anyway, enough about me. How have you been? I’d love to know.

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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