I won't let M.E. stop ME! But what is it? you ask.

For those who don't know, I was diagnosed with ME/CFS eight years ago. 

I would describe my level of ME as low to medium, I keep it at bay by pushing myself and trying take things slowly but not stopping completely and taking pain relief when needed (it use to be everyday but I can't deal with the additional irritability and grogginess!)

The job I do is definitely not ideal, it involves long shifts/night shifts, but it is a field which I am passionate about and which gives me the drive to move on and make the most of my own life, as I witness overcoming their fears and ailments. 

Granted, there are tough times like this week where because of work stresses and financial worries, on top of the physical side of work/life, I can feel a crash coming on but after living with this for so long I am able to recognise my own triggers and put into place contingency plans to hopefully put on the breaks - usually by booking a week off every couple of months to give me a chance to catch my breath (roll on November!)

The reason I am writing this post is because I wanted to give the people in my life (RL and online), a chance to have a small insight into M.E and what it does to me and others - and I can do this better through writing here than I could via verbalising thanks to the joys of editing!

But what is M.E? 

M.E. Can be a very deliberating condition. 
The predominant symptom of ME/CFS is usually severe fatigue and malaise following mental or physical activity and the full extent of this exhaustion often becomes apparent only 24 to 48 hours after the activity - mine usually hits 12 hrs later which is why I can never work two night shifts together - my brain and body refuse to function! 

The other main symptoms are:

  • Muscle symptoms - include exercise intolerance (as much as I'd love to be a gym bunny, the thought of the gym plus work plus L kills me! I am currently trying to figure out what I can do to help me lose weight that won't exhaust me!) and post-exertional malaise (i.e. feeling shattered the day after going out on a shopping trip/driving for work/day of meetings), pain/myalgia (present in around 75% of people - affecting every area of the body and individual to each person - my worse areas are my hands/feet/legs/back) and visible twitching of the muscles which sometimes includes blepharospasm/eyelid twitching. 
  • Then we come to the Brain and Central Nervous System symptoms include cognitive dysfunction (problems with short-term memory, concentration and maintaining attention) and problems finding a words - which is why if I am holding a conversation with you and stop mid sentence or appear to zone out it's not that I am being rude, avoiding a question, or stalling for an answer (most of the time) it's that I am waiting for my brain to play catch up! It's frustrating and irritating and makes me so angry at myself - especially when I am training new staff or at a professionals meeting as I hate feeling like I am coming across as uninformed. Then there is the clumsiness, disequilibrium a sensation of ‘walking on rubber'. Problems with control of the autonomic nervous system results in palpitations, sweating episodes - not great when you already suffer from hyperhydrosis and symptoms associated with low blood pressure/postural hypotension (e.g. fainting) - thank goodness these ones aren't mine! 
  • Additional to this there are immune system symptoms - sore throats, enlarged glands, joint pains, headaches, problems with temperature control and intermittent flu-like feelings. All which come and go and make it hard to call if you are actually suffering from a infection or if it's just the M.E (great fun with work!) 
  • Other symptoms which frequently occur in ME/CFS include sleep disturbances (often increased requirements at the onset followed by an inability to maintain a full night’s sleep - again fun!), alcohol intolerance (a very characteristic feature, particularly in the early period of illness - so no more 'drinking' for me, I'm a cheap date!) and irritable bowel. 
  • Some people also develop emotional lability or mood swings (me!) and features of clinical depression as time goes on.
  • Besides these more obvious and wide-spread symptoms there are also myriad “minor” ones. 

Not everyone experiences all of these and ME/CFS symptoms tend to fluctuate in severity throughout the day/week/month and people often report that they have both ‘good days’ and ‘bad days’, although the term ‘good’ is often used in a relative sense. 

The illness nearly always results in a severe reduction in a person’s ability to cope with all aspects of normal daily living (i.e. social and sporting activities, employment, household tasks). 

Personally, I currently have to put family life and working, ahead of socialising and travelling and whilst I can't be as invested in friendships face to face as I would like thanks to social media and the good old text message I can keep in contact! 
Life isn't how I imagined it would be, I'd give anything to not feel exhausted and drained after a simple trip to the shops, I'd love to be able to go to the gym and get fit without it wiping me out for days... 

I'd love not to have the drive to work actually physically hurt me and to not feel exhausted when the working day is done, so that I don't have to plan in advance doing things with L like going to the park and we could just go off and have adventures without me worrying that I won't be too exhausted to get through work the next day. 

But I know that I am lucky, unlike others with severe M.E. I am not trapped in my own home by my body, I am able to live and that is what I intend to do everyday and hopefully one day I'll find the right balance, to allow me to travel and have a busier social life 


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