Young, Sick and Invisible

My illness has shaped me,
But it does not define me.

Guest Post: 'Julie's Story.'

Winter landscape

I’m Julie Holliday (AKA The ME/CFS Self-Help Guru). I’m 50 and I live alone in Spain most of the year. I’ve never been married and I have no kids.

I have M.E. an illness that effects multiple systems of the body, the immune system, the nervous system, the endocrine system etc. Most dramatic though is that way it affects your energy. Energy is very limited and if you try to use more that you have readily available you end up being even sicker for quite a while afterwards.

I’ve actually had this illness twice, I completely recovered after 5 years the first time I had it and had 7 years of active vibrant health before the illness hit me again.

I was a very active, adventurous person before I got sick and I loved to travel. I’d travelled in Egypt and Israel, spending time on a kibbutz and I’d been backpacking around Africa for 3-6 months a couple of times before I first got sick at the age of 29. At the time I had an active job I loved as a residential social worker, working with kids with emotional and behavioural difficulties, I exercised frantically, either running swimming or aerobics about 5 days a week plus daily yoga. I loved dancing for hours at a time. I loved skiing, cycling and hiking and I was about to take a sabbatical to work a ski season as a skiing guide I Val d’Ysere.

During my 7 years of complete remission I travelled around central America twice and worked 6 seasons in a ski resort 3 as a guide and 3 as an instructor, in the summers I worked on the other side of the mountain as a walking guide and did one summer guiding independent style tours around Europe. I loved that life!

I have had to completely change the work I do. I’ve retrained and set up my own business so that I can manage work around the demands of the illness. I love the work I do now though just as much if not more!

I am now a holistic life coach for others with energy limiting chronic illness, I’m also a writer, editor and meditation teacher. I work from home and do everything online. I love the way technology enables me to work with people all over the world! I now work about 5 hours a day pacing carefully usually with a maximum of 2 coaching or teaching sessions a day. I just about make ends meet because I have very low expenses.

I first developed M.E. in 1996, although it could have started the year before as I struggled to get over a nasty flu and had to take over a month off work with a post viral fatigue. A year later I’d felt as though I was coming down with the flu and had a restful weekend to get over it. It never really turned into the flu but when I went back to work on Monday morning I was completely exhausted beyond anything that I could have imagined back then, unfortunately in my ignorance I just kept pushing myself and made myself worse and worse. When I went to the doctor I could hardly walk, I felt like a zombie and all my muscle were extremely painful and as hard as rocks.

Julie on a walk

I only ever got a tentative diagnosis because I had some really horrible experiences with not being believed or taken seriously: The doctors at my practice just wanted me to take anti-depressants; a neurologist dismissed me as depressed not caring whether the depression was a reaction to loosing the life I loved through illness or not and a very young psychiatrist who was so excited to find a ‘psychosomatic’ patient until she found unusual bloods which she never followed up! So, once I got the diagnosis ‘M.E.?’ From one of the GP’s at my surgery, I read up and immediately recognised what was going on in my body and decided to take matters into my own hands.

At the time the internet wasn’t the amazing resource that it is now, but two books were particularly helpful back then Living with M.E.: The Chronic/Post-viral Fatigue Syndrome Dr Charles Shepherd and M.E.: Chronic Fatigue Syndrome: A practical guide Dr Anne Macintyre. I don’t know what I would have done without them.

For me a flare (or a crash in M.E. speak) is an extreme lack of energy, feeling really heavy like you’re moving through treacle, fluey type aches and pains all over, headaches (like your brain is bursting), stiff and sore muscles as though you’ve run a marathon without training, brain fog, and a sore throat. Simply not being able to function!

Because of how debilitating a crash is, I do my best to avoid them and have become quite an expert in illness management. But they can last anything from a week or two, to a couple of months. One of the wort things about them is that as well as all the physical symptoms, your brain chemistry is affected and you’re just not able to experience joy. I have to work hard to stop any negative thinking and just comfortably distract myself while I rest up and wait for the worst to pass. Patience has to be my biggest tool at these times. Because of how little energy you have you aren’t able to do much to actively get better. I wrote an article recently about how I deal with a crash

The main trigger for a crash is using more energy than you have readily available, so I’ve worked hard to discover what I can do on an average day without pushing myself over that edge. But sometime you just don’t realise when your energy is lower than usual, maybe because you’re fighting an infection or because of hormonal stuff. Stress is also one of the biggest energy zappers and can easily push you past the envelope. Sometimes feeling better can lead to a crash as you get so excited to do the things that you haven’t been able to do for a long time and it’s so hard to reel yourself in that you just end up doing too much.

I’ve taken all sorts of supplements over the years but presently I take the doterra lifelong vitality pack which has an amazing range of carefully sourced nutrients and their mito2max energy supplement, plus a few additions that just aren’t in high enough concentrations in the lifelong vitality pack for this condition. I have to double up on the essential fatty acids adding evening primrose oil, a veg-omega-3 supplement and echiomega. I also have to take extra Gingko Biloba. I have also taken various different supplements to support my gut health (an additional complication to this illness) and one of the most helpful I have found for my particular issues is the now foods candida support. doterra’s PB assist (pre and probiotic) has been really helpful too! I had big problems with my ferritin level or a long time too and had to take iron supplements for years!

My experience with all the people who I have worked with indicates that we all have individual needs in terms of extra nutrition with this illness, and what helps one can actually be pretty damaging for another, as many of us can be highly sensitive to supplements.

I do my best to minimise supplements and medications not just for the cost but because detox is an issue with this illness and I don’t want to put any more strain on my body. I have found that changes in lifestyle can be just as powerful as medications and supplements.

Missing Millions

My two best tips for people living with this illness are:

1. Aim to approach everything with an attitude of relaxed effortlessness. It helps you notice when you’re tiring and when you’re relaxed your body can send its resources to healing

2. Invest in tomorrow but live life for today: there is no quick fix with this illness and feeling desperate to get better can really get in the way of good illness management. Learning to enjoy joy life as it is, makes it much easier to relax and actually move forward.

I don’t like to dwell on the negative impact that this illness has had on my life, it’s fruitlessly painful to think about what life would have been like without the illness. I lost so much but I’ve already grieved it all and put it behind me. Positively I’ve learned a lot of amazing lessons through having to overcome an enormous challenge. I’ve learned how to be truly happy and not just live for the highlights; I’ve taken responsibility for my own well-being and healed myself completely once, and to a relatively good extent this second time; I’ve learned to be more compassionate to myself and others and having to slow down has given me the opportunity to really get to know myself, shake off other peoples expectation and be more authentically me.

If I were to just pick one area of my life to point out the negative impact of the illness it would be how it’s got in the way of me finding a life partner and having children. I have to live a quiet life at home mostly and just don’t get to do things very often where I could meet new people, even internet dating is difficult because of having to explain how limited you are in terms of going out and meeting up.

I’ve been lucky though that I have some very good friends and wonderful family members that have been very understanding and willing to change the way they connect with me so as not to tire me out and push me beyond my limits. I know a lot of people with this illness aren’t as lucky as me in that respect.

I’ve learned to be really positive most of the time because I realise it’s a choice that serves me. Self-compassion is really important though, difficult thoughts and emotions are regular visitors, but with compassionate self-acceptance it’s easier to let them flow and move on, and I soon feel ready to make positive choices again. Trust plays a big part too. I aim to trust that if I accept everything as it is without resistance, better stuff will soon unfold. I’ve developed this trust just through choosing to try it out and seeing if things really do work out OK, and I’ve learned that they do. At the very least if you’re relaxed about things you have more resources do deal with things when they don’t!

My hope for the future is that I’ll become really well known as a great coach for helping people take back control from chronic illness and live a life that they love. I want to be able to help thousands of people live a more relaxed, balanced and fulfilling life despite chronic illness. I also hope that I will soon be making enough money to secure my future and be able to pay for more healing support. I choose to believe rather than just hope, that I’ll find my way back to full remission again.

Another final big hope is that medical research into this illness will finally get the funding it deserves. Although it’s unlikely to make a difference to my life, as I am already a long way a long the path to my own healing, but there are so many people so much more poorly than me that desperately need appropriate medical help that just isn’t available at the moment.

(If you’d like to find out more you can follow my blog or follow me on Facebook, Twitter and Pinterest)

- Medicines described in this blog are prescribed to this individual by their Doctor. Always consult your Doctor about what is best for your needs before taking any medication -

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