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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25 Responses to “Time Flies…”

  1. Jackie November 18, 2014 at 9:20 am #

    I like your cake being simple yet complex with all of those layers. How did it taste?

    • myjourneythrume November 18, 2014 at 9:33 am #

      Thanks! I wanted something simple and rustic. I’m told it tasted really good. It’s not gluten and dairy free so I couldn’t try it (which was very hard when I had cake all over my fingers when we were constructing it!) We are going to have a second cake that is Jess friendly but decided given gluten free flours are more expensive and more unreliable we’d make the main cake ‘normal’ and a smaller replica just for me. How are you?

      • Jackie November 18, 2014 at 7:29 pm #

        That’s how we are doing it too! I’m going to have a cake then maybe a dozen vegan, gluten/soy free cupcakes. I thought I would have people indicate if they are vegan or gluten/egg/soy/dairy free on their RSVP then stick toothpicks in the cupcakes with names. Like you said — they aren’t cheap!

      • myjourneythrume November 18, 2014 at 7:45 pm #

        Dietary requirements are going to be a question on our rsvps for sure. I like the idea of little signs on toothpicks. When are you getting married?

      • Jackie November 18, 2014 at 10:07 pm #

        May 2, 2015

  2. Elizabeth Milo November 18, 2014 at 5:17 pm #

    I’m so happy for you, Jess. I’m teary eyed imagining all those experiences. I love that you aren’t stuck where you were and you’ve seen and done things you didn’t know if you would… and that cake is AMAZING! X

    • myjourneythrume November 18, 2014 at 5:22 pm #

      Oh thank you so much. It’s lovely to hear from you. I still pinch myself to check it’s real sometimes, I can’t quite believe it. I hope you’re doing okay? I think of you often and hope that things are improving for you. I hope my story gives you hope. If I was able to turn the corner then I believe anyone can. Xxx

      • Elizabeth Milo November 18, 2014 at 5:29 pm #

        I’m very curious about your routine and your medications. If you ever write about what you do to maintain/thrive, I’d be very interested. It’s inspiring!

      • myjourneythrume November 18, 2014 at 5:33 pm #

        I’m glad it’s inspiring. I’m always a bit worried about making people feel worse about their own situation. I definitely intend to write about how I’m thriving – love that word, hadn’t thought of how appropriate it was until you used it just now and it totally sums up how I view my health now.

  3. BONNIE JOHNSON November 18, 2014 at 8:15 pm #

    WELCOME BACK! MISSED YOU, SO HAPPY FOR YOU & ALL U R ACCOMPLISHING!

  4. Trisha November 20, 2014 at 12:17 am #

    Welcome back! I’m glad to hear you’re doing so well and have had so many lovely experiences over the past few months. I love the cake! It looks simply delicious.

  5. thehomeschoolingdoctor November 20, 2014 at 2:53 am #

    Wow. Wow. Wow. Wow. Wow. I just love to hear these kinds of stories, especially from people I “know.” So exciting! How good it must feel to go about “normal.” Where did you go in the Caribbean? We go every year. And what month is your wedding? What kind of icing is between your cake layers? Glad you found a dress. Wish we could see a picture! Your story is just amazing! ~~Terri

    • myjourneythrume November 20, 2014 at 3:14 pm #

      Awh thanks Terri, such a lovely message. It is amazing to be able to do normal things. The best feeling in the world. We went to the Dominican Republic; had a very lazy week, barely left our sun loungers! Where do you guys go? We’re getting married August 8th next summer. Soooo excited! You’ll have to wait to see the dress til then (Mr B reads my blog, can’t have him seeing it before the big day!) but suffice to say it is the opposite of what I thought I wanted! The icing in the cake was a marscapone cream sandwiched with my mum’s homemade raspberry jam. I’m told it was delicious. It was ‘normal’ so I couldn’t try it. I’m having my own ‘special’ cake! Hope all is well in your four child world and you’re not totally run off your feet 😄

      • thehomeschoolingdoctor November 21, 2014 at 1:48 pm #

        Oh, my. Mascarpone and raspberry jam. Oh, my. Yum. That sounds so, so good!

        We go to Grand Cayman about every year now. It is a perfect spot we go for the kids. No waves on the beach and very shallow for a long way out. Plus, the water over the reef is very shallow so we can take the kids to snorkel too. Love that!

        I am run off my feet for sure! But I know in the blink of an eye they’ll be as old as we are out there living life.

        Terri

      • myjourneythrume November 21, 2014 at 2:06 pm #

        Grand Cayman sounds blissful. I shall add it to my list of places to visit!

  6. triciaruth November 20, 2014 at 1:17 pm #

    Hurrah!! Funnily enough I’ve just realised I last posted in June – it’s been a speedy second half of the year.

    So pleased that you’re re-claiming your life & body. Take some time to enjoy this feeling of recovery as all too soon you might find yourself getting busier and busier and long for the time you’re having now!

    • myjourneythrume November 20, 2014 at 3:25 pm #

      I like what you say a lot – I am reclaiming my health and body. That’s exactly how it feels. And you’re so right, I need to enjoy the possibility of quiet times as who knows what’s to come! Hope the last 6 months have been good for you?

  7. Miss P November 24, 2014 at 11:04 pm #

    Lovely surprise to see a new post on your blog!

    Your last few months sound fabulous and lots of wonderful things to look forward to.

    So pleased for you!

    My ME is improving. I’m back to working full-time and I moved home last month (to minimise commuting). Just LOVE my new home! I live by myself and I’m managing ok. =)

    I still have to manage my ME and if I’m not careful then it does drain me completely. I’m not fully recovered but I am happy to be able to do so many things again.

    x =) x

    • myjourneythrume November 27, 2014 at 8:11 am #

      Hello Miss P, it’s lovely to hear from you. I’m so glad you’re doing so much better and managing to work and live by yourself. That is such fantastic news. I’m exactly the same as you say, I still have to manage my ME otherwise it gets the better of me but I’m just so very happy to be able to do so many ‘normal’ things again. Jess x

  8. fayesavory11 November 26, 2014 at 5:14 pm #

    Absolutely fantastic to see you’re doing so well! This was such an uplifting post to read. I am currently at the not being to drive more than 5 minutes point and it is incredibly reassuring to hear of someone manage long drives like I used to be fine with again. Long may this brilliant spell continue 🙂
    Faye
    Freckles and All

    • myjourneythrume November 27, 2014 at 8:09 am #

      Hi Faye, Thank you so much for reading and for your lovely comment. So glad my post gives you hope. I hoped by sharing my story I would give reassurance and hope to others. if I’ve managed to get so much better then there’s no reason why you can’t either. Keep going, things will get better. Jess x

Trackbacks/Pingbacks

  1. The Horror of Cold Turkey | my journey thru M.E. - November 27, 2014

    […] actually going to talk about coming off one of my ME/CFS medications. As mentioned in my post about my progress this year, my recovery has not all been plain sailing. There have been some bumps and set backs. And coming […]

  2. My Journey Thru M.E. Part 4: Living Recovery in 2014 | my journey thru M.E. - December 8, 2014

    […] Began blogging again after a 5 month absence.  I am so much better but still have limits that remind me that ME/CFS is still a part of my life that needs attention and managing. I hope by sharing my story it will inspire others and give a glimmer of hope. People can, and do, recover from ME/CFS. I’m living proof of that 🙂 […]

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