Tag Archives: Chronic Illness

What Do You Do?

10 Feb

Work world qyoteFor the last five years, ‘what do you do’ has been a loaded question for me.

I used to dread being asked ‘where do you work’. The occupation question on paperwork would send me into an uneasy spin.

I hated being asked about work.

It seems we are very often defined by what we do for work. We spend the majority of our waking hours there, it is what we do with the majority of our time. Our work gives us a title. It forms a big part of our identity.

My old working life in the City of London. Photo source: Morgue File.

My old working life was in the City of London. Photo source: Morgue File.

Back in 2010 I was a solicitor working for a London law firm specialising in corporate and company law. When I became ill with ME/CFS, after an initial few months off work, I went back part time. I didn’t realise at that point just how ill I was. For 5 months in 2011 I worked 2-3 half days a week. I had to spend the remainder of my time resting just to recover enough energy to return to the office. I refused to give in until my doctor told me I was simply making myself more and more sick by pushing my body in this way. He signed me off work on sick leave. My last day at work was 23rd September 2011. At the time I thought I’d just need to take a few months off to recover and then I’d be back at my desk. Oh how naive was I. I never did make it back to my law firm.

By being off work I lost part of my identity. I also felt like I had lost my purpose. I mourned the loss of my job. It took me a long time to accept that the high pressured world of corporate law was not compatible with ME/CFS and an even longer time to admit to others that I couldn’t go back. I felt the loss keenly but ultimately I realised I couldn’t jeopardise my health. It was just too big a risk. I’d already lost several years of my life and I didn’t want to risk triggering a relapse that could send me back to that horrible time.

After becoming ill, every time I was asked what my job was it was a stark reminder of what I had lost. It hurt and made me very sad for a long time.

So how did I answer the million dollar question then?

For a long time when asked, I would still simply say I was a lawyer. That was the easy option and was technically still true. But as time passed it came to feel so incredibly wrong. I felt like I was lying to myself and to the people asking. It didn’t feel authentic. I knew deep down I would never do that job again.

On occasion, I would say I wasn’t working due to illness. That would usually halt the conversation instantly. But that’s a very personal admission to make and one with which I wasn’t often comfortable. It leads you to a place where your vulnerabilities are exposed.

Or I’d go with a neutral ‘I’m taking some time out’. But when a seemingly fit and healthy 20 something year old (invisible illness…looks are often deceiving) says ‘I’m not working at the moment’ it falls like a lead balloon, echoing in a silent room. I imagine it meant nothing to my companion, but to me it was an insurmountable difference between myself and the world around me. It was just another way in which I felt alienated and inadequate due to ME/CFS.

And yes I know what I do for work is nobody’s business but my own and I also know that the people asking most likely would have not thought twice about my answer. But these truths did nothing to allay my feelings. It was still a massive deal to me.

Being too ill to work is inherently stressful. It has huge practical and financial ramifications in both the short and long terms. But for me it was stressful in  a deeper, less functional way, which was just as difficult to navigate.

However, as with so many aspects of being ill, I came to see it as an opportunity. Yes it was heartbreaking that I’d had to give up a career I had worked so very hard to achieve. But that career, or rather the way my body handled the stress of that role, was a huge factor in me getting ill. It just wasn’t healthy for me to do it. And once I’d accepted that, it was easier to move on.

My new world is much calmer and more colourful. Photo by Flickr user (razotkrivenje)

My new world is much calmer and more colourful. Photo by Flickr user (razotkrivenje)

I have changed a lot through being ill. I would say I have become a much better person. I’ve discovered a whole world that I didn’t know existed when I was a lawyer – the suited corporate lawyer version of myself would probably laugh at the meditating holistic health nut yogi that I have become but I put two fingers up to that old me. That life clearly didn’t suit me and wasn’t meant to be.

Today I have two answers to the ‘what do you do for work’ question and I look forward to people asking. I say I am a student and a homemaker – the latter having been an option on a form for a new bank account I filled in recently, the new word for house wife I guess!

I have recently enrolled on a year long holistic health and nutrition health coaching course with the Institute for Integrative Nutrition. I feel like I have  drawn a line in the sand and am very much moving forward. It is wonderful to be studying and using my brain again. I feel energised and am loving once again having a purpose.

At the risk of sounding very ‘new age’ (or cheesy or something the old lawyer Jess would have smirked at…)I am much more comfortable with myself; much truer and more authentic.

It hasn’t been a quick process or an easy one but I am very happy with where I have ended up, something I never dreamt I’d be able to say when I was in the thick of ME/CFS a few years ago. It’s perhaps easy for me to say now, but if you’re going through a time of struggle at the moment, never give up, there is hope and good things can come from the most difficult of situations. Or at least that is how it has been for me.

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.

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.

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