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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.

Weddings & ME

20 Jan
Counting down to the big day!  © Jess Bruce

Counting down to the big day! © Jess Bruce

As most of you probably know this is the year I will get married. Saturday August 8th is the date. My Mum and Sister have made me an amazing Wedding Count Down Calendar (see picture). Starting at 3 months to go and then periodcially in the run up,  each pouch will contain a pressie from a close friend or loved one! As Lou said, I hardly need help with ramping up my excitement but it’s such a wonderful idea and so very me! I’m all about counting down to special events!

I know my wedding is of most interest to myself (Mr B would definitely agree with that statement!). So don’t worry this is not a post harping on about how wonderful our day will be. More I thought it would be useful to write a post about planning a wedding around ME/CFS. I am so very excited about our wedding but slightly increasingly anxious as well. I hope by writing down all the steps I’m taking to help me not just survive, but to enjoy our day, will allay my fears and calm my nerves a little, whilst also hopefully being helpful to anyone else in a similar position. A lot of what I say could be applied to any big event, and not just a wedding.

The Bridge of Sighs at St John's College Cambridge where we are holding our wedding breakfast © Jess Bruce 2015

The Bridge of Sighs at St John’s College Cambridge where we are holding our wedding breakfast © Jess Bruce 2015

Although I am tons and tons better than I was, ME/CFS is still part of my life and so it is, sadly, a factor in our wedding. Though it’s got to be said that I’m just so happy that I can even be planning a wedding day. Walking down the aisle and having a big celebration seemed like an impossible dream for much of the last 4 years when ME/CFS ruled my life. Even though ME/CFS has been the deciding factor in  a lot of our decisions, it is a huge relief and happiness that I’m well enough now to get married.  I am so happy and excited!

Here are some of the ways we are planning our day in order to curb ME/CFS’ wrath:

Planning and Run-Up

  • I’m trying to do wedding prep gradually and little by little so that I don’t get overwhelmed or too busy and wipe myself out.
  • I had grand plans of making our stationary. But perusing online invite options and clicking buy is MUCH less tiring than sourcing the materials, designing the stationary and of course making the things. Not being at all gifted in art nor even marginally craftsy, this was a crazy idea from the outset and would have invariably led to me freaking out, stressing or having a meltdown. Or all the above. My Mum is hugely relieved that I saw sense and abandoned the DIY approach to stationary because, as it was with my school art and design homework, it would no doubt have ended up as Mum doing the making…
  • Delegation is key to any bride but especially to one with ME/CFS. I am lucky that my future mother in law is super talented with a sewing machine and is making us bunting, lavender bags as favours and more besides whilst my Mum is all round wedding star making our cake(s), addressing invite envelopes, making chutney for favours, shopping companion, idea bouncer-off etc etc etc etc – it’s definitely a good job we waited until Mum was retired! My Dad is super organised and was hugely helpful in sourcing quotes for DJs, chauffeurs, hotels, florists, photographers…the list goes on. Basically enlist the help of as many people you trust as possible!
  • We are getting married in Cambridge, the town where we met. My family and I are renting an apartment there for the week before the wedding so that I can travel to Cambridge in advance of the wedding and rest as well as do all the last minute things gradually over the course of the week rather than cramming it all into the last 24 hours and me winding up exhausted before we even start.
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. © Jess B 2015

My Dress(es)

  • Yes I have two dresses and that’s not because I’m greedy or a super fashionista keen to do a costume change! Whilst I have a traditional gown for the day time, I also have a shorter lighter dress to change into if my body is too tired from wearing the big dress. I love my wedding gown and doubt I will want to take it off but if needs must, if myalgia and fatigue are setting in, then I will do a quick change during the evening, so that it’s less effort for me to move around and I can be the last one standing on the dance floor 🙂 And if I don’t wear my shorter dress on my actual wedding day, I may well wear it to breakfast at the hotel the next morning! I will be the one trying not to spill gluten free dairy free porridge down a beaded ivory dress….
  • I originally wanted a tea-length wedding dress. But having tried a few on and discovered how heavy they are (and that they did not exactly flatter my figure), thanks to the many layers of netting needed to provide the full skirt, that idea was scrapped.
  • I also didn’t want a strapless dress but again once I’d tried dresses on with straps and found my shoulders hurting within minutes from all the fabric hanging off them I had to rethink that plan as well.
  • It is true what they say, in my case at least, that many brides end up with the exact opposite style of dress to what they originally envisioned!
  • Not a dress, but part of my outfit – I want to wear heals for at least some of the day. I used to live in black heals for work but hardly ever wear them anymore as they make my body hurt pretty quickly. My physio has advised me to wear heals little and often around the house over the next few months to strengthen my calf muscles which over time will reduce the pressure and pain that I get in my back whenever I try and wear heals at the moment.

Hair and Make-Up

  • The debate about how I’m going to wear my hair is ongoing. But however it is, it will be loose and relaxed. A tight updo doesn’t fit with the relaxed nature of our day and would also give me head pain and headache. Extensions and hair pieces are a no go both because I’m all about natural and relaxed but also as they are potential head hurters.
  • Having my hair down may make me too hot. My body’s temperature control is still a bit haywire with me frequently panicking that the menopause has set in thanks to the hot flushes I get! As I say debate is ongoing.
  • I’m having my hair and make-up done by a professional. Originally I was going to do it myself but that’s a recipe for a whole lot of stress so I decided having a hair stylist and make-up artist was a luxury well worth paying for.

The Day Itself

  • We are having a fairly early ceremony, at 12 noon, so that there is time for me to have rest later in the day between the wedding breakfast and the evening party.
  • We are having a short civil marriage ceremony so it’s less draining on me.
  • We are having a fairly small number of guests to our day time ceremony and meal. People are tiring! And being the one in the big white dress it will be hard for me to not be sociable! Fewer guests = less energy exerted for me. So it’s just immediate family and closest friends during the day with more people invited in the evening.
  • The evening party is at a hotel so if I’m flagging I can take myself off to our bedroom for a little rest time-out at any point.
Sunflowers are the theme of our  relaxed day  © Jess Bruce 2015

Sunflowers are the theme of our relaxed day © Jess Bruce 2015

Food

  • Having the apartment means I can be in control of my food in the week prior to the wedding and won’t have to eat out in the run up and wind up bloated, blocked up and exhausted.
  • Jess friendly food was a key factor in choosing venues. If the caterer wouldn’t go out of their way to accommodate my dietary requirements then that was the end of them. Both the venue for our wedding breakfast and the hotel for our evening party have been amazing and devised totally bespoke menus to accommodate my needs and to make me feel like it was no trouble. I don’t mind having to take my own food to weddings where I’m a guest but at my own wedding I want to be able to eat the same canapes as everyone else! There are going to be veggie and fish options at all times for me whilst meat taking centre stage for Mr B, it is his wedding day after all and he wouldn’t take kindly to a plate of lentils!

After The Event

  • Mr B and I are having a mini-moon in Cambridge after the wedding. We are going to spend a few extra nights extra at the hotel to rest and relax before setting about travelling home.
  • We are planning our honeymoon for the Autumn so that I have several months to fully recover and rest up for our big adventure – latest thoughts (it changes daily…) Fiji and (parts of) Eastern Australia.

I’m sure there are a ton more things I could write for how we are planning our wedding to keep ME/CFS at bay, not least I’ve already started using the Lightning Process to brain rehearse the day doing calm as opposed to nervous and anxious. But as this post is already practically an essay, I’ll save that and other thoughts for another day.

If you’ve got any suggestions to help me keep ME/CFS under control for our special day please let me know 🙂

If you enjoy wedding talk you might like to read about my bridal shower 🙂

To Jab or Not To Jab….That is The Question

30 Sep
Autumn Colours. Photo credit: Morgue File User Kconnors.

Autumn Colours. Photo credit: Morgue File User Kconnors.

It’s that time of year when the leaves start to turn; there’s a freshness to the air; the sun hangs low in the sky; the orange of pumpkins is popping up every which way….it is Autumn.

This may be hard to believe given the blazing sun and warm (well low 20s, that’s practically tropical for an Indian Summer in England) temperatures we enjoyed last week; but it truly is Autumn.

It is at this point in the year that my thoughts turn to preventative medicine. Mainly preventing and avoiding the winter flu.

Indian Summer sunshine. Photo by Jess B.

Indian Summer sunshine. Photo by Jess B.

The flu and I have a rather chequered history. Both before and after my diagnosis of ME/CFS the flu has been a rather large, ugly and painful thorn in my side.

Let’s be clear here I’m referring to the keep you in bed for a week and more, head pounding, aching and shaking, shivering and sweating, full on flu. I’m not talking about sniffles or even a bad cold and I’m most definitely not talking about man flu…

Back in 2009, when ME/CFS was not part of my vocabulary never mind my daily life, I had two nasty bouts of flu within six months. The first was gastric flu. After a week off, once the gorgeous gastric symptoms had subsided, I decided to return to work. Yes well that was a massive mistake and a story for another post. Suffice it to say I was incredibly lucky that my sister had travelled on my commute with me that morning as I near collapsed at the station and had to be taken home. Six months later saw me become the butt of oink oink piggy jokes at work as I managed to contract swine flu. Queue 3 weeks of hellish flu viral symptoms. Both times post-viral fatigue lingered for weeks as I struggled to return to normal life.

How I feel with the flu! photo credit Morgue Filer User: Pennywise

How I feel with the flu! photo credit Morgue Filer User: Pennywise

Roll on December 2010. Everyone had a bad cold at work. It was a week before Christmas when I caught the bug. But in true Jess style, mine wasn’t ‘just’ a bad cold, mine was full on flu. The works. That was the beginning of the end of normal life for me. Although the viral symptoms passed within about 6 weeks I was left with profound fatigue, severe muscle and joint pain, and an inability to do more than sit upright for 5 minutes. Yes the flu had enabled ME/CFS to well and truly get its claws into me. I am essentially still getting over it. I have not been well since.

April of this year saw me travel to America to visit my sister. A few days after arriving in Philly I came down with, yep you’ve guessed it, the flu. It took me until mid June to feel anywhere close to how I’d been feeling before the April bout of Mr flu.

So yes, the flu seems to like me. Mr B on the other hand has never had the flu properly. He jokes that his immune system is good for both of us. Lucky for him.

Throw into the pot several bad colds, including a recent one in August which took me until earlier this month to really feel I’d cleared completely and you begin to understand why the winter flu season fills me with a little dread.

The last three winters I have spent the months at my Mum and Dad’s up in Lincolnshire. I was there because I was physically too ill to be living with Mr B in our flat in London. I needed my Mum and Dad to look after me. The upshot of these prolonged periods ‘up north’ was that, to a large extent, I was protected from nasty flu bugs doing the rounds. Clean fresh country air and not having contact with more than 5 people a week max meant I survived these winters unscathed by the flu.

Each winter I’ve debated the merits of getting the flu vaccination with my GP and my neurologist. Any vaccination carries a minor risk of contracting the (hoped to be protected against) illness. In chronic illnesses where the immune system is a little (okay a lot) defunct this risk is naturally higher. So for the past few winters my isolation in Lincolnshire has satisfied my doctors as sufficient protection.

Injection time. Photo source: Morgue File User Imelenchon

Injection time. Photo source: Morgue File User Imelenchon

However this year I am in London. I am well enough to be here provided I (massively) limit myself in what I do and take things really steady. I want to be here. Three winters away from my life here is enough. Now I’m that bit stronger it’s time to make ME/CFS work in my life with Mr B here in London. So far, touch wood, it seems to going fairly well. But I am more at risk of catching the flu. Even though I don’t go out very much except for a short walk each day. We live in an apartment complex with 714 flats, that’s a lot of potentially infectious people! Mr B travels on public transport each day and works in a large air-conned office block. Lots of potential for infection there. If he comes home with a bit of a virus or cold, even if we institute the separate bed policy (i.e. he gets relegated to the spare room), I seem primed to catch the little beast (flu or cold not Mr B!). Living in an open plan loft apartment probably doesn’t help on  this front. And ME/CFS + bit of a cold = horror enough. Add in that my body never seems to do anything by halves. Bit of a cold in Mr B becomes full on spluttering, crying, screaming, raging flu in my poorly ME/CFS body.

So this year I am having the flu vaccination. In fact I am having it today. Eeeeek. I am on strict orders from my specialist to play the invalid for a fortnight after the vaccination to let my body recover so if it is trying to fight any outbreak of flu from the vaccination it has the best chance possible by me not pushing my body, but instead resting on the sofa lots and lots. I’m going to have to fight my natural instinct to get up and do stuff if (praying hard on this) I feel okay.

So please send all your positive, flu fighting vibes and thoughts my way pretty please.

Mr flu vaccination, you are here to protect me not to bring me down, don’t you dare give me the flu. Just do your magic and protect me. I will be eternally grateful if you do.

How do you prevent catching Winter Flu? Do you get vaccinated? How have you found it? 

Posts coming soon: how my specialist appointment went on Friday 27th Sept, holiday pics from our mini break to Sussex last week, personality 101: negative thinker, catrostrophiser, how I’ve mellowed: yes I used to be worse! So many posts so little time. But keep your eyes peeled, these posts will be coming to a computer or tablet screen near you soon (subject to the pesky flu keeping its distance).

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