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Make Time For Health

5 Feb
"no one will take care of you if you don't take care of yourself"

Image credit Mind Body Green

Health is one of life’s most undervalued things. It is so often taken for granted; not thought about; simply assumed that it will always be good.

For those of us dealing with a chronic illness, health is not undervalued. It is often thought of.

For several years, when I was at my sickest, health consumed my life. All my time and energy went into trying to get well.

Now I am a long way recovered, health does not consume all my time, which is hugely liberating, positive and encouraging.

However, ME/CFS is a chronic illness and one that my body still has. And so now more than ever it is important for me to make time for health.

In a recent interview with The Telegraph, Ella Woodward, the creator of the phenomenally successful plant based recipe website Deliciously Ella, summed it up perfectly when she said:

“This horrible disease is always lurking. If I don’t take care of myself something comes back.”

The disease Ella is referring to Postural Tachycardia Syndrome (PoTs). For me the disease is ME/CFS. For others it may be diabetes, fibromyalgia, lupus, M.S., depression or any number of other long term conditions.

I could not agree with Ella’s statement more. This is exactly how I feel.

If I don’t look after myself and do what I know works to maintain my health, then symptoms start to reappear. This might sound hugely limiting. But it’s not. I see it as massively positive. I am in control. Provided I do what I know keeps me in balance then I maintain my health.

Keeping myself balanced and in good health are my goals. They are the ends I seek. My means are: daily yoga and meditation, a gluten and dairy free diet, regular walks, a daily rest period and working with the mind-body connection. What works for me, may well not work for you. Health is incredibly individual. But for me, this is how I am able to live a life with my health in tact, keeping ME/CFS at bay.

I remind myself though that these things, the yoga, the meditation, the restricted special diet, the rests etc are not just means to a higher end. They are ends in themselves. I try to cultivate an approach of being present and enjoying the moment when doing these things rather than just passing through them in a passive state, wanting them ticked off and completed; the end attained for that day.

It is all a matter of perspective. If you can see making time for your health as a joy and foster the belief that it is valuable and enjoyable, something to be embraced rather than struggled against, then it will be so much easier to maintain the practice.

Take Care of your body it's the only place you have to live

Image credit Live 2 B Healthy (via Pinterest)

I am no saint and it is incredibly easy to give into temptation and not be bothered to go for a walk or to sit and meditate. But I have learnt time and time again that when I let things slide, slowly, symptoms creep up on me. It can be hard to see the value in maintaining a ‘health management regime’ (for want of a softer term) when you seem to be doing okay. It’s so easy to think ‘I’m fine, I don’t need to do this today…’ but then today becomes tomorrow, and tomorrow turns into the day after and a week has gone by and you’ve not done the one thing you know will help you the most. And slowly things unravel and ME/CFS starts to regain control. It is especially hard when the consequences of actions, or rather inaction in this case, are delayed. The knock on effect of me not taking a rest for a few days is not immediately obvious and often not at all apparent until it is too late.  And so I have learnt to act pre-emptively and make time for health to keep my illness at bay.

Maintaining good health should be embraced. It is not time wasted. It is necessary and immeasurably valuable. It is not a burden and shouldn’t be seen that way. I am the first to admit that I have on more than one occasion fallen into this trap. Sometimes you just want to live and let live! And sometimes you just don’t feel you have time – ‘I have to go and lay down for 45 minutes and listen to a yoga nidra’?! Really, are you kidding? And yes life sometimes gets in the way. But if more often than not you stick to what maintains good health for you then your body will thank you for it.

It may  not be forever. Health is an evolving (both forwards and back) state for us all. What is helpful or necessary for you right now may just be a passing phase. So for now, take care of yourself, in whatever form that takes for you and your health today.

For myself, from the outside I may seem perfectly well now. The invisible element of ME/CFS has never been truer. I am able to do, in some respects, anything I want to do. But that is only thanks to me making time for my health. I only have to look back to how restricted my life was when I was so sick for a reminder of how vital it is that I do maintain my health in the way that I know works for me.

So the motto is and always will be: Make Time For Health.

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How To: An ME/CFS Friendly Wedding Part 2

20 Oct
Confetti Everywhere! © Jess Bruce 2015

Confetti Everywhere! © Jess Bruce 2015

Here is the second half of my post about how we made our wedding Jess and ME/CFS friendly. If you missed part one, you can find it here.

I’m sorry for the delay in posting this. I was doing so well at keeping to a routine of regular weekly posting on Wednesdays. I was using blogging to keep me in a daily routine – I like to write each morning for an hour or so sat in front of my light box. But now I’ve missed a week – [insert frustrated blowing off steam audio and emoticon here]. Last week was highly disrupted thanks to a) a nasty GI virus that left me barely able to stand due to the pain and b) simultaneously having work done on our house resulting in no landline, internet or TV for several days. Our mobile phone reception is patchy at best in our house due to living at the bottom of several large hills, so I enjoyed several quiet days with a good book cut off from modern life!

But virus is, touch wood gone, and I’m feeling much better and we’re back in the land of the living with technology reconnected again!

So without further ado, here are the rest of my tips on how we made our wedding day as easy as possible for me.

My Wedding Dress © Jess Bruce 2015

My Wedding Dress © Jess Bruce 2015

Outfit(s)

I chose a strapless a-line dress with a beaded lace overlay that I utterly loved. It was practical as well as beautiful: strapless meant there was no heavy weight of fabric pulling on my shoulders exacerbating the myalgia in my neck and shoulders; it was a light fabric with only a few layers of underskirts so it was easy and comfortable to move around in.

I had a second dress that I changed into at about 9 pm when I was getting tired and having a long dress to maneuver was too much. This was a little knee length number with a beaded bodice and a swirly skirt that was so much fun to dance in.

I’m short at 5ft3 and was a heals girl before I got sick. I desperately wanted sky high heals on my wedding day. The old me nearly won out but in the end I was glad I listened to my head rather than my heart and went for kitten heals. High heals put huge strain on legs and backs especially fibromyalgia weakened ones. I also had sparkly flat flip-flops that I wore in the evening.

It’s hard to be sensible rather than following your heart’s desire but your body will thank you for it.

My Wedding Hair © Jess Bruce 2015

My Wedding Hair in the making © Jess Bruce 2015

Hair Styling 

I didn’t wear a veil and although my hair was up it was in a very soft and loose chignon so as not to strain my head that is so prone to migraines. My hairdresser was brilliant and totally understood my special requirements.

Flowers

I had a bouquet of sunflowers, blue nigella and white veronica. We specifically asked for it to be light and not too big so it wasn’t a burden for me to carry.

Pre-emptive action

I took painkillers (my go to are co-codamol but check with your doctor) at the start of the day and periodically during the wedding; anything to ease myalgia pain from being on my feet all day and to ward off the migraines to which I’m so susceptible.

I also took an antihistamine to ward off any pesky reaction to flowers. A bride sneezing all over her bouquet wasn’t the look I wanted!

My Bouquet © Jess Bruce 2015

My Bouquet © Jess Bruce 2015

Chairs

A basic point, but so helpful – don’t stand more than you have to.

Mr B and I sat down through our ceremony as much as we could. We only stood for the actual saying of our vows and exchanging of rings and I don’t think it detracted from the special moment at all.

We had a drinks reception outside on the grass and had arranged for quilts to be laid out for people to relax on and a few chairs for less mobile guests (me in my long dress)!

Our photographer even fetched me a chair during our formal photos so I could have a sit down whilst family members were gathered for the particular shots.

After we had made our entrance (to the Rocky theme tune!) into our evening reception, we had two chairs positioned centre stage on the dance floor for us to sit on during the speeches (which incidentally we split between the wedding breakfast in the afternoon and the evening party so as not to tire me out having to concentrate and listen for too long).

Our Wedding Car © Jess Bruce 2015

Our Wedding Car © Jess Bruce 2015

Car

By having three venues, we needed to get from one to the next. The venues were only a 10 minute walk or so between each and our guests walked en masse carrying yellow and white balloons! I so wanted to be part of that but Mr B and I travelled by car, in a Maserati no less, so it wasn’t exactly a hardship! It saved my tired legs, gave me a few minutes peace and chance to sit down and also gave Mr B and I time just the two of us which was really nice.

Supplies

Pack a bag of all the essentials that you rely on and keep this with you during the event. For me this included: tiger balm, painkillers, snacks, water, plasters, headphones and ipad (for relaxation audios), sunglasses, flat shoes, a calming herbal essence and a wrap.

One of evening venue decorations © Jess Bruce 2015

One of our decorations at our evening venue © Jess Bruce 2015

Lightning Process

This was crucial for me. I used the LP in the run up to the wedding to prepare my body and mind for the big day through brain rehersal. Using the LP I visualised doing great energy and calmness both on my wedding day and in the lead up. I interrupted and stopped feelings of anxiety, panic and overwhelm, choosing instead to do calm and happy. It helped enormously and kept me amazingly calm.

Last but not least, relax!

Easier said than done, but try to relax and enjoy the day. I was amazingly calm in the run up, with only a couple of bridezilla moments (an achievement let me tell you!) The day itself I was relaxed and incredibly happy.

It might seem a shame or a drag to say that ME/CFS shaped our day but I would disagree. It did not detract from the love and specialness in the slightest. The illness has been a huge part of our lives over the last 5 years. You have nothing without good health, we have learnt that time and time again through ME/CFS and so safe guarding my health was our priority for our wedding day, as it is in life generally.

We literally had the best day of our lives, so full of love and happiness. I wouldn’t have done anything differently and the best thing was, that I didn’t crash or relapse, so all the planning and special arrangements were worth it and worked exactly as we’d hoped.

If you want to read more about our wedding, and how we raised money for the ME Association, check out this post. If you missed part one, where I talk about our choice of venues, food, timings and more, please read this post.

How To: An ME/CFS Friendly Wedding Part 1

7 Oct
© Jess Bruce 2015

© Jess Bruce 2015

Planning a wedding is a big task for anyone. For someone with ME/CFS it poses its own challenge, namely ‘how am I going to get through the biggest day of my life without completely breaking myself’? As much as I wanted the perfect wedding, it wasn’t at all costs. Given how far I have come since the worst times of my illness, not even my wedding was worth risking a relapse. And so an ME/CFS friendly wedding became central to our planning and arrangements.

As I know coping with big life events, be it your own or attending a friend’s, is a concern for many suffering with chronic illness, I thought I’d put together a list of how we made our wedding as ME/CFS friendly as possible. As it’s a pretty long list, I’ve split it into two posts, so stay tuned for the second installment. I hope these points will help future ME/CFS brides/chronic illness suffering party guests/ concerned loved ones as much as they helped me.

Delegation

Our ring cushion made by Mr B's Mum. © Jess Bruce 2015

Our ring cushion made by Mr B’s Mum. © Jess Bruce 2015

I had huge support with the wedding prep from my parents, sister and Mr B’s Mum and sister. On the day itself my sister was in charge and ran the show like a dream.

I still did a lot of the planning and prep but I did it very gradually. Leave as little to the last minute as possible. My last week was a lot of rest and a little prep. People teased me that ‘I had done it all already’ early on and this annoyed me. I had to do things seemingly obsessively early. I knew my body wouldn’t cope with having it all to do in the last few months and weeks. Listen to your body and do what you know will help you.

Timings

Our Drinks Reception outside on the lawns by the River Cam © Jess Bruce 2015

Our Drinks Reception outside on the lawns by the River Cam © Jess Bruce 2015

We chose a 12 noon ceremony so that I could have a slow morning getting ready without having to get up early but equally a ceremony time early enough in the day to allow a break late afternoon between the wedding breakfast and the evening party. By 5 pm I was really flagging and was so glad we’d planned in a break until 7 pm. During that down time I laid down (propped up on many pillows so as not to squash my hair!) and did a yoga nidra relaxation track for 45 minutes which really refreshed me ready for the evening.

Making myself stop and rest was hard but necessary. I wanted to stay at the meal and not miss a second. It is so much easier to push on and keep going at the time but much harder for your body in the long run.

If you have a long event to attend factor in some downtime, even if it’s just sitting in a quiet corner for a few minutes. It will help your nervous system reset and refresh you. My time out definitely helped me survive and, dare I say thrive, during the evening.

Venues

St John's College was our day time venue © Jess Bruce 2015

St John’s College was our day time venue © Jess Bruce 2015

We had a Registry Office civil ceremony partly because we’re not particularly religious, but mainly so that it was short, so that I wasn’t exhausted from a long ceremony before the party started. Even though it was short, it was so incredibly special. I loved every minute of it and can’t wait to see the video.

Our day time venue was the Cambridge college where we had met. In addition to the function spaces, we also reserved a bedroom close to the drinks reception location so that I had somewhere quiet to go off to and rest if needed. I didn’t actually use it on the day but it took a stress away knowing the option was there should I need it.

And finally our evening reception was held at a boutique hotel, where we also spent our wedding night (and mini-moon). This worked perfectly because it meant we were able to go straight to our bedroom to rest after our wedding breakfast before the evening party. It also meant I was able to escape from the festivities for a time-out as and when I needed it throughout the party.

Guest Numbers

Our Table Plan for our Wedding Breakfast with just 39 guests. © Jess Bruce 2015

Our Table Plan for our Wedding Breakfast with just 39 guests. © Jess Bruce 2015

Chatting and socializing, especially if you’re the bride and groom and the centre of attention, is exhausting. We deliberately kept our daytime event small with only 39 guests so that I wasn’t exhausted early on from too much talking! Our evening reception was larger at 90 but still not massive, which again helped me to circulate without it being too draining.

Vendors

We were open with all our vendors about my illness and explained about the extra requirements this meant and they all took this on board without issue. Get people who understand your needs and will listen to you. That’s good advice for anyone but especially when dealing with chronic illness. This was particularly important with the photographer, who understood that I couldn’t do as many photos as perhaps he’d have liked. The hair and make-up girls were brilliant and adjusted their usual practices to meet my rest needs when getting ready.

Food

We had a hot buffet as food at our Evening Party © Jess Bruce 2015

We had a hot buffet as food at our Evening Party © Jess Bruce 2015

With numerous food intolerances at the heart of my ME/CFS, catering to my dietary requirements was very important. I have been to too many events where I had to take my own food or worse, eaten food that has then made me sick. I didn’t want either at my own wedding. We had many meetings about the food with our venues and settled on menus that largely catered to my needs and where it was too hard or costly to do it all Jess Friendly (canapés for example) I had my own separate plate so I knew what was safe for me to eat. That said, on the day, I barely ate. I picked at most things, but I was just too happy and on cloud nine to eat! I never felt hungry. Mr B said the same, which is very out of character for both of us, we always eat!

Our main wedding cake © Jess Bruce 2015

Our main wedding cake © Jess Bruce 2015

And as I said in my wedding cake recipe post, we had two cakes, one normal as the stunning centre piece and the second a smaller gluten and dairy free cake, primarily for me! My cake was chocolate flavoured whilst the main cake was a vanilla Victoria sponge so it was crystal clear which was which and cross contamination was kept to a minimum.

If you have dietary requirements as a guest, then my advice is to let the bride/event organiser know as early as possible. With advance warning, it is an easy issue to deal with.

Stay tuned for the second installment of how we managed a wedding with ME/CFS without breaking me. The second post will cover outfits and hair styling, flowers, pre-emptive action, chairs, transport, wedding day supplies, Lightning Process and relaxation.

ME/CFS was a big factor in our wedding planning but it didn’t detract from the day one iota. Rather it enhanced the day, by making it personal and extra special that I was well enough now to cope with such a celebration. The planning decisions and modifications with ME/CFS in mind made that possible and we wouldn’t have had it any other way.

If you want to read more about our wedding, and how we raised money for the ME Association, check out this post.

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