Jess the Red Nosed Reindeer

17 Dec
Rudolph The Red Nosed Reindeer Photo Credit rezdora70 via Morgue File

Rudolph The Red Nosed Reindeer Photo Credit rezdora70 via Morgue File

It is 4 years ago to the day since I got sick. Or rather, it is 4 years ago to the day that I was too ill to go to work. My ME-versary if you will.

Back in December 2010 I had been ill for nearly a week but work was crazy with a big transaction aiming to complete before Christmas so I didn’t feel I could take time off. The office was full of winter coughs and colds and the clever decision to hold our department Christmas party in a basement bar only exacerbated matters. The Monday morning following the Friday night party, the office was half empty with people having gone down with the flu. Those of us that were stupid enough to have gone in, were coughing and spluttering, running fevers and generally being hotbeds of germs. I lasted two days working in this state, including attending a client meeting in Birmingham, 2 hours each way by train. I left the office at 8.30 pm on the Tuesday night taking work home with me. I intended on going in the next day, I left my glasses on my desk, as I so often did when I left late and wouldn’t be doing anything more than dinner and bed when I got home.

Wednesday morning I got up early and was walking to the bus stop just before 7 am. I felt awful. The effort of getting dressed had left me in a hot sweaty clammy exhausted mess with tears pricking at my eyes. But I thought if I just went into work that morning I could get my work load under control and then have a few days off to get better. But as I walked to the bus stop, I started to cry. It had snowed a few days earlier and the lying snow had frozen over night. Walking without sliding was near impossible and far too much effort for my poorly body. I had only gone a few steps when I decided to phone my Mum. I know she remembers this conversation as well as I do:

Mum: ‘Hello?’

Me: ‘Hey, it’s me’

Mum: ‘Where are you?’

Me: ‘Walking to the bus stop’

Mum: ‘What are you doing? Go home. If you carry on like this you’re going to end up in hospital. GO HOME. You’re no use to anyone in this state’

Me: Okay…

I knew I wasn’t well enough to go to work but thought I should be going. I needed someone to tell me. And so I turned around and went home. I thought a couple of days off and I’d be back at work before Christmas. How wrong was I. I didn’t return to work until the following April and even then it was only part time and short lived. (If you want to read my story in full see this post).

Viruses are so often the start of ME/CFS and so instill a real fear in those of us with this illness. Over the last few years I have done everything I can to avoid catching colds or the flu, knowing that they have been the undoing of me so many times before. ME/CFS is horrible. ME/CFS + the flu is just plain mean.

For me and so many others the fear is totally understandable, given how my life my changed in 2010 thanks to catching the flu virus doing the rounds, it is only natural that I would be scared of what catching a cold or the flu would now do to me. But no good comes from feeling that way. The fear of ‘is this going to make me relapse’, ‘am I going to go backwards’, ‘how am I ever going to get over this’, just heightens anxiety and increases the stress response in our already overly active nervous system. This in turn causes the standard ME/CFS symptoms to worsen, which seemingly validates our fears and fuels the fire even further, which in turn increases the stress….you get the picture. In short literally nothing good happens.

I am currently sporting a nice red nose and husky voice. I’ve caught the bad cold that has being going around over the last few weeks. I’m actually quite proud, I didn’t catch it from Mr B when he had it a month ago. My immune system is clearly more robust now than I perhaps thought. That statement still stands despite me now being a coughing, sniffing, Vicks vapour inhaling delight. As bad as I feel, I don’t feel anywhere close to as awful as I have felt many times before. My body has met this cold and said ‘NO! You are not taking Jess down, not this time’! And that in itself feels to me like an achievement and another milestone in my road to recovery. Yes my head feels like it is overstuffed and needs piercing to let the congestion out and yes all I want to do is curl up and snooze. But I am still able to function. I still cooked dinner the other night (egg fried rice with lashings of fresh ginger, onion and garlic, all good antidotes to head colds I’m told) and although I felt pretty rough by the time I got back, I was still able to go for a little walk to buy myself more anti flu medication yesterday.  When my ME/CFS was rife, even without a cold, even on a good day, I wasn’t able to do these things. So to be able to carry on and look after myself (and a drunken, hungover, stinking man as I did on Sunday) is definitely a score for me: Jess 1 ME/CFS 0.

The fear is still there. I guess it always will be. I am still learning to trust my body again. But I do genuinely feel the fear is less real this time. The further I move forward, little by little fear’s hold on me gets less and less. I can do this. I am getting better. I am recovering. ME/CFS is no longer winning and neither is this pesky cold.

For now though, I’ll keep myself swathed in cotton wool. I’m still fragile. I know that. I’ll keep being kind to myself and keep steering operation beat bad cold into submission: drinking my hot honey and lemon, eating clementines like there’s no tomorrow, slurping homemade soup, relaxing in bubble baths, watching trashy TV huddled under the quilt Mr B’s lovely Mum made for us, inhaling Vicks vapour rub and, when I feel like it, gently moving my body by doing soothing yoga like this Yoga for When You Are Sick sequence by Yoga With Adriene  (I highly recommend her You Tube channel for lots of free inspiring yoga videos by the way).

That’s all from me for now. Back to the sofa and quilt I go.

Until next time, stay warm and as cold germ and bug free as you can :-)

A Cat With 9 Lives

12 Dec
Photo credit Flickr User علي الحسين

Photo credit Flickr User علي الحسين

A cat, we are led to believe, has nine lives. I’m beginning to think that I have more than one life too:

1. my original live before I got sick with ME/CFS – 1984 – 2010

2. my second life when I was sick – 2010 – October 2013

3. my third life of recovering from ME/CFS – October 2013 and continues on today

It seems to me I have been given more than one chance to live. I was given a second chance to live by becoming ill. It was my wake up call and taught me infinite valuable lessons. It showed me that I wasn’t really living life, more coasting through it, not engaging with it. I wasn’t living a healthy life. Being ill for so long made me sit up and listen.

The ‘what if’ game is a dangerous one. But I do occasionally wonder what would have happened if  I hadn’t got sick. Would I be the high flying corporate lawyer that back then I dreamed of? Would I still be with Mr B? I would never ever have chosen to become sick and have 4 years (and counting) of my life swallowed up by illness and recovery, but in an odd way I am actually grateful and thankful that my life did take the turn it did. I think everything happens for a reason. If I hadn’t gotten sick when I did, would I have crashed in an even bigger way later in life? A heart attack or nervous breakdown from the stress and long long hours of my job and fast pace of my life? It doesn’t bare thinking about, the possibilities are so horrible.

If I had to get sick, then December 2010 was a very good time to do so. I had qualified as a lawyer, no one can take that away from me, I had achieved that. Both financially and in terms of self esteem and personal satisfaction that was a very good thing. I had finished school, Uni and law school. The nightmares I still have where I am back at school doing my A-Levels age 25 due to many years out sick can not become my reality. And for that I am immensely grateful. I am also grateful that I didn’t get sick later in life, at a time following having children. Being a mother with children to care for whilst having ME/CFS would be impossibly hard. I am grateful that I got sick at a time when Mr B and I were long established and I was able to lean on him for support. My illness actually brought us closer together. It made us grow up and our relationship matured as a result. Nothing like coping with a chronic illness to stoke those romantic fires and show you that he very much is a keeper (with a capital K)! My parents had just retired when I got ill which meant they were able to look after me full time when I needed it. I doubt I’d have made the progress I have without their support.

Of course I haven’t always been able to see my illness in such a positive light. For large parts of the first year I ignored it, too ashamed to admit I had it and too terrified and ill to comprehend it. But gradually over time I came to terms with it and I have been able to see it as a blessing in disguise. Not constantly. I definitely had my fair share of emotional meltdowns over it but ultimately it is the card I have been dealt and I have always been determined to overcome it. And for me that means taking notice and learning from it. I am not willing to go back to my previous life, putting myself back in harms way as it were, with all the potential triggers and wind up back where I started, too ill to get off my parents’ sofa.

Hence, my cat analogy. My first and second lives are over. I am now into my third. I really was given a second (and third) chance to live. Each previous life has shaped me and continues to do so. From my first life I know that high pressured London life working as a corporate lawyer is inherently unhealthy and un-fulfilling for me. My second life was genuinely really rich: meditation, yoga, relaxation, walking, diet and nutrition, therapy, happiness, mindfulness, calmness, writing, neuroplasticity and NLP….the list, of what being ill have given me, goes on and on.

Being ill for so long really has given me so much. Most importantly it has helped me to take stock (you have no choice when you are physically too weak to do anything) and re-evaluate my priorities. A high powered career is no longer top of the list. Having children and being at home to raise them is now my aim. Having some kind of creative and caring outlet is also on my list now, be that as a yoga teacher or therapist or nutritionist or writer. I think perhaps simply getting older may have something to do with the shift in my priorities. I was 26 when I first became ill. Now I’m 30. Not old at all. But a good age to be considering the future. But the biggest influence is without doubt having been ill with ME/CFS.

Realizing, with my third life, I have a chance to start over is both wonderful and daunting. I have to fight all my natural (and ME/CFS ‘triggery’) perfectionist tendencies of wanting to get it absolutely right first time around. That mentality can be a bit overwhelming and counter productive as it freezes me into action.

Ultimately what my three lives have taught me is that, you have to take each day as it comes. The present moment is all we have and that is all that matters.  I’m just going to keep on learning, listening to my body and making the most of my current life. I will leave cats to have their nine lives; three is quite enough for me.

My Journey Thru M.E. Part 4: Living Recovery in 2014

8 Dec

2014 has been a good year for me and my health. Although ME/CFS is still a part of my life that requires some attention and management, I am  much more in control now and lead a much more ‘normal’ life. It hasn’t all been plain sailing but overall I am so much better. I am eternally grateful to my wonderful Lightning Process practitioner for helping me in my recovery.

If you want to read my back story and the years of illness that preceded my recovery, then you can find them here (how it all began), here (2012) and here (2013, when I turned the corner towards recovery).

January 2014

‘Funny turn’ whilst out shopping with my Mum. Suddenly very hot, dizzy, nauseous and achy. Had a week of relapse with bad ME/CFS symptoms again. But pulled myself out using Lightning Process techniques. Continued over the next few months to test my boundaries, learning what I could do without triggering ME/CFS symptoms.

In addition to the restricted diet I had been eating since July last year I decided to stop eating meat to see if that helped my digestion and energy. It did.

Started having counselling through the rehabilitation company which has helped tremendously with sorting through my thoughts, fears and emotions of having been ill for so long.

April 2014

Mr B and I went to the US for a three week road trip from Las Vegas to Seattle. Mr B high -fived me on the first night as we basked in our amazing Vegas hotel suite saying ‘it was thanks to all my hard work and persistence that we were able to be there’. I was less tired than Mr B when we arrived, despite an 11 hour flight! It was an amazing 3 weeks not least because Mr B proposed! We interspersed sight-seeing with rest times and quieter days. Happy, full of life and energy.

May 2014

I turned 30 in Seattle. Mr B and I celebrated the day with a swim, a nice long walk, shopping at the amazing Pike Place market, cocktails and dinner. So very happy and relieved to be well enough to be able to do it all. The next day was our last day in Seattle. We spent it chilling out in our joggers, I was tired (and a little hungover for the first time in several years!) after the excitement of turning 30. I realized it was okay to feel that way and having a lazy day on our last day was also okay.

I flew to Philly to see my sister as Mr B flew home. My first week in Philly was a bit of a struggle as my body caught up with itself from a busy few weeks. The second week was better. My sister and I shopped, cooked and hung out like two normal healthy sisters, no wheelchair in sight. Very different when compared to my trip to Philly the year before.

June 2014

After a busy few weeks of engagement celebrations with friends and family when I got home from the US and a flurry of wedding venue visits and arrangements I was running pretty close to empty. Tried to take some time out for rest and routine. But life was just so busy (a good thing!)

My consultant and the rehabilitation company came to the decision that a return to my old job as a corporate lawyer would be detrimental to my health. I was deemed medically unfit to return to my old job. The long hours in the very intense pressured environment was one of the triggers for my ME/CFS in the first place and it was felt that it was highly likely the same would happen should I return.

July 2014 & August 2014

Mr B and I decided to put our flat on the market with the aim of moving out of London to the suburbs. We sold quickly but our buyer then dropped out. Lots and lots of stress with estate agents, uncertainty and busy times being out for viewings on our flat and also travelling to view potential new homes.

The stress got the better of me and I crashed big time.  Fatigue, headaches and myalgia back with vengeance. Went back to my parents to rest and recover. After a week or more I had a session with my Lightning Process practitioner who helped me pull myself out of the relapse and bounce back.

A change in my Cipralex medication saw me suffering a week of severe constipation, bloating, lethargy and a bad migraine. I stopped the medication at fault which resolved things but triggered withdrawal symptoms from abruptly coming off the medication.

September 2014

A month of nausea, dizziness, diarrhoea, lack of appetite and emotional rollercoaster as my body went through the ringer of abruptly coming off the medication. Thankfully, other than a bit more fatigue, there was no real spike in ME/CFS symptoms.

October 2014

Mr B and I went to the Caribbean for ten days of rest and relaxation in the sunshine. We had a wonderful holiday and I coped fine with the heat and long flights only suffering jet lag on the return flight like any ‘normal person’.

Struggling with what I’m doing with my life now I’m so much more in control of my illness. What’s my purpose, what should I be doing?

 November 2014

We finally sold our flat. House hunting began in earnest again but was thankfully over quickly as we fell in love with a house and had our offer accepted. Having learnt from my mistakes in the summer of getting far too stressed and suffering with a relapse as a result, I’m determined to stay calmer this time. Making a concerted effort to put rest, routine and recovery first.

First night out in 4 years for Mr B’s 30th birthday. Didn’t get home until 2am!

Started using the Lightning Process to reintroduce, one by one, foods that had been identified as intolerances for me. Eating eggs, meat and coconut again successfully. Almond, soy, cod, grape, dairy and gluten still to tackle.

Began blogging again after a 5 month absence.  I am so much better but still have limits that remind me that ME/CFS is still a part of my life that needs attention and managing. I hope by sharing my story it will inspire others and give a glimmer of hope. People can, and do, recover from ME/CFS. I’m living proof of that :-)

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