Tag Archives: Illness

A Positive Life

22 Feb
© Jess Bruce 2016

© Jess Bruce 2016

My Journey Thru M.E. Part 1: Where it All Began

1 Dec

I decided I should update my About Me page to reflect the progress I have made in the last year. Somehow that turned into me writing out my journey chronologically. Doing so was a bit of an emotional rollercoaster. I cried as I typed; a mixture of shock at how bad things were at times, sadness for the years of my life I’ve lost and utter relief that, touch wood, I have now moved beyond all that to a place where, although ME/CFS is still a part of my life, I am able to do a lot of what I want without fear of relapse and I am in control rather than the monster that is ME/CFS having the final say about everything. In writing up the chronology of my illness I am not dwelling on the past. More, it gives me some closure. I am acknowledging and respecting my journey and what I have learnt from it.

I’ve tried to keep this timeline to just the main parts of my journey. The big things, both good and bad, that have stayed with me. Having said that, it is still pretty long so I will publish it in stages I think over a few days. But please, if you’re reading the beginning and are in a similar position to what I was back then, then know that things have got better for me. There is light at the end of the tunnel.

 December 2010

Caught the flu. Off work sick. Thought I’d be well enough to go back after a week. I was wrong. Very wrong.

January 2011

Still very ill: exhausted, absolutely no energy, chills and fever, sore throat, headache, severe body pain – aching muscles and painful bones and joints even when laying down, brain fog etc etc. Taken back to my parents as too ill to look after myself.  A short shower left me needing to lay down  shattered and in tears due to the pain. Sitting up at the table to eat wiped me out. Barrage of blood tests all came back negative. Possible diagnosis of ME/CFS raised by my GP for the first time. So scared.

February 2011

Appointment with a psychiatrist who provisionally diagnosed me with ME/CFS subject to my symptoms persisting for 6 months. Confused and terrified. Started doing some yoga; literally just 5 minutes a day at first.

March 2011

Forced to cancel my holiday to Las Vegas and LA with Mr B and his family due to being too unwell. Utterly devastated that I couldn’t go.

April 2011

After a lot of arm twisting, persuaded my GP I was well enough to return to work on a part time basis. For the next few months I worked 3 hours 2 or 3 days a week. I got a taxi to and from the office as commuting by train was too much for me. The days I wasn’t at work I spent horizontal recovering enough energy to be able to go to work the next day. I was very very drained. I began seeing a nutritionist thinking that would solve my illness. I was looking for an easy fix, I didn’t realize yet that there wasn’t one.

May 2011

Diagnosis of ME/CFS confirmed by the psychiatrist.  Prescribed me a course of CBT and left me to suffer.  I didn’t understand then why I needed CBT for what were very real physical symptoms. I was too exhausted and ill to cope with it mentally or physically. Bewildered, confused, ashamed and terrified.

September 2011

Saw a neurologist specialising in ME/CFS for the first time. He is still now my consultant. Wonderful man. He was appalled at how ill I was and that I was still trying to work. He diagnosed me with ME/CFS. Signed me off work and I haven’t been well enough to work since. Started me immediately on Amitriptyline for my pain, Q10 for energy, Cipralex for stress and anxiety, Enadh for brain fog. Referred me to an occupational therapist. Started to feel calmer. I had something resembling a plan. Love a plan.

October 2011

Met with the occuptational therapist who devised a daily routine for me, explained to me the concept of pacing and the importance of proper neurological rest and preemptive rest. This approach became my daily routine for the next 2 + years.

December 2011

Moved home to my parents in Lincolnshire leaving Mr B in London. I was too ill to look after myself and trying to do so was making me worse. Mr B drove the 3 hours north every other weekend so we could see each other.  This was life for the next 4 months.

Stay tuned for the next installment in the timeline of my journey through ME/CFS next post. And please remember, it has, albeit slowly, all got better for me.

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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