An M.E. I Do

24 Aug
Wedding Breakfast Dining Room © Jess Bruce 2015

Wedding Breakfast Dining Room © Jess Bruce 2015

Hello dearly beloved blog readers.

I am so very sorry that I have neglected you for so long.

How are you? I hope you are doing well.

In my defence, my absence from blogging has not been due to laziness or a lack of love on my part. I should also add that my absence from blogging has not been due to a catastrophic health relapse either.

My Bouquet © Jess Bruce 2015

My Bouquet © Jess Bruce 2015

In reality, the last few months have been very busy – wonderfully so given how little I was physically able to do a year or two ago. Moving house and planning a wedding in the same six month period does not much time for blogging  make. More acutely perhaps given my health history, house moves and wedding planning leave very little energy for anything other than the essentials of daily life.

Not to mention that May saw Mr B, my parents and I travel to Philadelphia to see my amazing sister graduate with her PhD. So yes, the last 6 months have been fairly frenetic. My health, whilst infinitely better than a year or two ago, has had its ups and downs thanks to the stresses and strains of so much activity.

But now I have time, and my energy is returning, albeit slowly. The move is done and the wedding was successfully planned and executed – yes I got married! And I am still standing to tell the tale.

Waiting to make my entrance with my Dad into the Ceremony © Jess Bruce 2015

Waiting to make my entrance with my Dad into the Ceremony © Jess Bruce 2015

Mr B and I married on the 8th of August in Cambridge, the town where we met as first year undergraduates at University nearly 12 years ago. After a short civil ceremony, we had a champagne reception on the lawns of our old College. With harp music playing, overlooking the River Cam,  it was perfectly picturesque as we played croquet and chatted with friends and family in the English sunshine.

Our Wedding Breakfast followed in one of the College’s oldest dining rooms with much love and emotion in the speeches before an Evening party, saw lots of dancing, eating and drinking as well as gaming at our fun money casino.

We had the most amazing day and as we took our first dance as husband and wife to the song ‘Best Day Yet‘ by Blue Confession, I literally felt on top of the world. It felt such an achievement to be standing there twirling around with Mr B on the dance floor. A few years ago, I was essentially house bound, only going out in a wheelchair, and even then suffering days of exhaustion and enforced rest following any outing or activity. Our wedding day was very much a celebration of how far I have come.

First Dance, Best Day Yet by Blue Confession © Jess Bruce 2015

First Dance, Best Day Yet by Blue Confession © Jess Bruce 2015

Whilst we didn’t want my health and ME/CFS to overshadow the day, it was a factor in all of the planning and arrangement decisions. It had to be. I think I’ll write a separate post about how I managed the wedding with ME/CFS so won’t elaborate on the details now. But suffice to say, we knew there was a clear risk of me doing too much, of pushing myself too far in the run up to, and during, the wedding and so we constructed our day to minimize that risk. As much as I wanted the best wedding day, I also didn’t want to break myself over it. Having made such strides forward with my health over the last 18 months, nothing is worth triggering a relapse into the severe ME/CFS symptoms that I used to endure.

The setting for our afternoon drinks reception, the college where we met in Cambridge. © Jess Bruce 2015

The setting for our afternoon drinks reception, the college where we met in Cambridge. © Jess Bruce 2015

ME/CFS also came up in the wedding speeches.  We didn’t want to depress anyone by discussing how bad things had been with my health a few years ago but I also didn’t want it ignored. It is a huge part of who I am today and has been a huge part of mine and Mr B’s life together. My Dad set the tone just right by talking about how ill I had been but then framing it in a positive light – our wedding day was extra special because of what I/we had been through. It was a real achievement that we had made it through. It was so incredibly poignant for me to be able to stand up and make a little speech thanking my loved ones for all of their support over the last 5 years. I don’t think there was a dry eye in the room when my Dad talked about how much he admired Mr B for supporting me. I mean, who at 26 years old, wants to have to push their girlfriend in a wheelchair?

Throughout my illness I have always strived to see the positive, to hang onto the silver lining. And that is what we tried to do with ME/CFS at the wedding. I wanted to acknowledge my illness and celebrate how far I have come. It was also important to me to thank those who have supported me, my friends and family but also I wanted to acknowledge and thank the ME Association. This is a UK charity that helped me a lot, especially at the beginning of my illness, by recommending a specialist in ME/CFS. Their recommendation took me to the man who has been my doctor for the last 4 years. He is the man that I credit with getting my illness under control and my recovery thus far.

Some of our roulette raffle prizes © Jess Bruce 2015

Some of our roulette raffle prizes © Jess Bruce 2015

At our Evening Reception we sold raffle tickets for a roulette wheel raffle and had loose change collection boxes on the bar to raise a little money for the ME Association. We sold the raffle tickets for £5 each. But our guests were incredibly generous and many gave much more than that thanks to the fantastic prizes we had that everyone wanted to win I think!

My best friend and her Mum sourced the prizes from local businesses – Kempton Park and Lingfield Park races each gave complementary race day tickets for two, a Tassimo coffee machine from Sainsbury’s supermarket in Larkfield and a luxury chocolate hamper from businessman Gary Haffenden, as well as a a bottle of fine wine donated by my best friend and her husband and a bottle of St John’s College Port donated by Mr B and I.

We were hugely grateful for all of the kind donations and a special shout out goes to Sainsburys of Larkfield whose representative, Mirrelle, really went the extra mile to get us an extra special prize. Thanks to all of the donations and the hardwork of my friends selling the tickets, we raised nearly £500 which was amazing. I hope this will help the ME Association to keep on giving invaluable support to people such as myself 4 years ago, those struggling with a diagnosis of ME/CFS and in desperate need of hope and guidance.

Now this married lady needs to go and have a rest. I thankfully, knock on wood, did successfully traverse the wedding without triggering a full on relapse of ME/CFS symptoms. But my fatigue levels have been much worse since the big day. So my days are mostly rest and relaxation at the moment until the fatigue lessens and my energy levels pick up once more. I know they will, it just takes a little time. It is only just over two weeks since our big day and I am already much improved.

Bye for now, but I will be back with more tales of getting married, moving house, travelling and life as a wife, all with a pesky friend called ME/CFS by my side.

Jess x

Relate: The Best Medicine

13 Apr
Photo source and credit Relate.org.uk

Photo source and credit Relate.org.uk

Recently the charity Relate contacted me about writing a guest blog for their campaign, The Best Medicine.

Relate is a national UK charity focused on providing relationship support, guidance and counselling across all sectors of society.

Their latest campaign, entitled The Best Medicine, aims to draw attention to the crucial role our relationships play in coping with ill health, both mental and physical, chronic and acute. The role  of relationships in coping with ill health is huge and yet sadly somewhat overlooked by the NHS (the UK’s national health service).  To quote their own words, Relate are:

calling on the government to put relationships at the heart of the NHS, making relationship support available to everyone who needs it.

I was very pleased to have been approached about contributing to Relate’s campaign and more than happy to share my story. My relationships with friends, family and Mr B, have played a key role in my journey thru ME/CFS. I am very fortunate that I am blessed with many wonderful relationships and surrounded by loved ones who care for me and would do anything to help me cope with my illness. I would not be where I am today without their support.

My post was published last week on Relate’s site and you can read it here.

I hope you will read my post on Relate’s site and I encourage you to sign their petition on this campaign and explore their site. Relationships are a huge, and largely untapped resource, in coping with ill health. It is an interesting and thought provoking topic. Reading the other personal stories is eye opening and very moving. So why not pop on over to Relate and have a read for yourself.

A New Home

10 Apr
The stained glass window in our hall, I love how it's sunshine, so positive and uplifting.  © Jess Bruce 2015.

The stained glass window in our hall, I love how it’s sunshine, so positive and uplifting. © Jess Bruce 2015.

Hello from our new house!

We are all moved in and very happy in our new home.

The move itself went amazingly smoothly, despite our moving company sending a truck that was too small! We are largely unpacked and thanks to my amazing Mum and Mr B, the house is clean and already feels like ours. Mum blitzed every room and Mr B cleaned all the carpets – I supervised ;-)

Our new kitchen. About 6 times the size of our old one! © Jess Bruce 2015.

Our new kitchen. About 5 times the size of our old one! © Jess Bruce 2015.

We are loving our new life in the suburbs, it’s so nice waking up to trees outside the window rather than a busy road and train line. I am completely in love with my new kitchen, the red Range cooker and I are already well acquainted and having all my recipe books out on display and easily accessible is making me so happy – pretty much the first piece of furniture I insisted we buy was a new bookshelf for the kitchen! Having a garden and outside washing line is a joy! Simple things…

My pride and joy, cookbooks bookshelf :-) © Jess Bruce 2015

My pride and joy, cookbooks bookshelf :-) And still space to add some more to my collection!© Jess Bruce 2015

We did the stereotypical suburban thing over the long Easter weekend with multiple trips to our local DIY superstore and IKEA (my advice to you, never go to these places on a bank holiday). We are now the proud owners of a lawnmower and hosepipe! We also enjoyed a lovely country walk in our new area and tried out our new local pub – which I’m happy to report is amazingly allergen aware, providing gluten free dairy free bread, pizzas and even gravy on their roast lunch.

So all is good on the home front.

Health wise things are a little lot more shaky. After several very stressful and busy months, I guess it was inevitable that ME/CFS would catch up with me at some point. And it would seem our Easter weekend activities tipped me over the line (hopefully not the point of no return…) and I’m more symptomatic this week than I have been since my emergency retreat back to my parents in February. Fatigue and myalgia have both spiked. I’m trying hard not to panic and to use the Lighting Process to curb my symptoms.

Magnolia tree in our garden © Jess Bruce 2015

Magnolia tree in our garden © Jess Bruce 2015

Life tends to get in the way of managing a chronic illness and if I’ve ignored things for too long then my ME/CFS gets louder and louder until I’m forced to take notice and stop. It seems I’m at that point now. It’s not that I intend to push myself too far, I think it’s human nature (or my nature at least) to keep going whilst I’m feeling okay. That’s the hard thing. Okay masks a lot and is a bit like skating on thin ice. So it’s back to listening to my body and putting it first – this seems to be a pattern of my recovery…a bit boom and bust, think I need to reacquaint myself with the concept of pacing.

It’s just very hard when life is so busy – whose idea was it to move house and get married in the same 6 months?!

I’m yet to get my camera out and take proper photos of our new surroundings so for now I hope you like these few snaps from my iPhone.

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