A Walk in the Park

24 Nov
Houseboats on the canal © Jess Bruce 2014

Houseboats on the canal
© Jess Bruce 2014

With the title of this post ‘a walk in the park’ I am not referring to ME/CFS recovery. As we all know by now, a chronic illness is anything but a walk in the park.

No, the meaning behind the title for this post is much more literal. Today I’m going to write about an actual walk in an actual park. Namely Victoria Park, a gorgeous green space close to my home in East London.

Autumn leaves © Jess Bruce 2014

Autumn leaves © Jess Bruce 2014

Walking has been a big part of my life with ME/CFS. After an initial time, back in December 2010 and January 2011, of being too ill to move anywhere other than from bed to sofa and back to bed, I have walked most days. When I was too poorly to partake in more active pursuits, walking I could still (mostly) do. It has become a good barometer of how my recovery is going. At the beginning I could only manage a few minutes; a few steps up the street. From that feeble starting point, I built it up. Walking was a key part of my paced activity programme, increasing the time I spent walking in minute incremental increases of literally 1 or 2 minutes. I built it up gradually, oh so gradually, until at my strongest pre Lightning Process, I was able to manage 25 minutes of walking without suffering severe post exertion malaise. There were ups and downs and fluctuations in my walking ability went hand in hand with relapses and set backs that are the bread and butter it seems of having ME/CFS. Before I got sick with ME/CFS walking was purely a mode of transport. It got me to and from the train station. I didn’t see it as exercise. It didn’t push me enough. Running on the gym treadmill, pushing myself as hard as I possibly could was more my cup of tea (that is not to say I was a gym bunny though! I went sporadically).

Autumn trees reflected in the still lake. © Jess Bruce 2014

Autumn trees reflected in the still lake. © Jess Bruce 2014

As my energy has returned and ME/CFS  has lessened its grip on me through this last year, walking has become a staple in mine and Mr B’s weekend routine (and has continued to be a part of my own daily routine during the week). Walking is very much an activity in its own right for us now. On a Saturday or Sunday we walk for a couple of miles and have coffee or brunch out mid way. During our trip to the US back in April, Mr B and continued our walks and one day in San Francisco we managed just over 4 miles – and as you probably know San Fran is not flat terrain! So that was a doubly great achievement for me. Recently my Mum and I walked through East London reminiscing about the places Mum used to live and teach in her younger days. We walked 3.78 miles that day to Stoke Newington Whole Foods where I stocked up on Jess friendly foods (we got the bus home, I was tired and we had too much shopping)! For a girl who a few years ago could only manage walking for a matter of minutes and other wise needed to be pushed in a wheelchair, I hope you can see why I’m so proud, happy and relieved that I am now well enough to walk without debilitating consequences. Sometime after longer walks I am definitely achy and fatigued but it doesn’t last like it used to. I use the Nike Run App to track how far I’ve walked. It’s a great tool to use for pacing yourself both in an ME/CFS sense and an exercise speed kinda way.

Squirrel on the move © Jess Bruce 2014

Squirrel on the move © Jess Bruce 2014

The other day I took my camera out with me on my walk to Victoria Park, hence the photos peppering this post. The park is 0.7 of a mile from home, which was frustrating when I wasn’t doing as well as I am now. I’d barely get to the park before I had to turn back because my allotted walking time was up / I was tired and could feel symptoms creeping in. But now the distance to get there is nothing. The walk alongside London traffic and on grey pavements through concrete towers is worth it as you cross over the canal and see the green open space greeting you on entry into the park.

Geese on the move © Jess Bruce 2014

Geese on the move © Jess Bruce 2014

Earlier in the year I went on a spa break. One of the activities there was a moving meditation. I had no idea what to expect but it turned out to be a lovely, peaceful and grounding experience. My guide and I walked around the lush grounds of the stately home that housed the spa in silence except for my guide giving me instructions every so often: focus on your feet touching the ground, notice the textures around you, close your eyes and listen purely to the sounds, notice the smells, the colours, reach out and touch the leaves, feel the air on your skin. It may sound utterly bizarre, and I guess it was a bit. But it was such a peaceful, tranquil time and mindfully brought you into the very moment.

Serene and calm duck on the lake © Jess Bruce 2014

Serene and calm duck on the lake © Jess Bruce 2014

I was reminded of my moving meditation experience on my walk with my camera. Photography is a very mindful activity. Seems obvious but I’d never really realized that before. I was purely focused on the nature around me. I was focused on the reflections on the trees in the lake; on the colour and shape of the trees and their leaves and on the wildlife that came out to play whilst I was there: squirrels, ducks, geese, obligatory London pigeons and many other birds for which I’m afraid to say I don’t know the names. If only my Mum had been with me. She is a walking treasure trove of information and would have known for sure! It was a fairly grey damp Autumnal day. But as I turned back ready to walk home watery sunshine broke through the clouds for a few minutes casting beautiful shadows across the grass from the trees.

I’m no great photographer but I did enjoy taking the time to capture the park and it will be something I will definitely do again. It was a relaxing and uplifting experience and I walked 2.5 miles which will have burned a few calories to boot!

Do you enjoy walking? Is it part of your routine? Why not try a moving meditation style walk next time you’re out. I’ll leave you with a few more photos from my walk in the park as inspiration.

Undetermined bird on the move © Jess Bruce 2014

Moor Hen on the move © Jess Bruce 2014

Duck keeping watch © Jess Bruce 2014

Duck keeping watch © Jess Bruce 2014

And the sun finally appeared © Jess Bruce 2014

And the sun finally appeared © Jess Bruce 2014

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.

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