An Interesting Article

I read this today.  And it concerns me greatly, not just the article itself but the comments below.  I have been referred to a "specialist fatigue clinic", and the first thing I have been offered is referral to a psychologist.  I know my illness is not psychological.  However, because the beginning of it coincided with a very stressful time in my life, following years of emotional trauma, that must be the cause no?  

In actual fact it is well known that long periods of stress can physically damage the body, the endocrine system is constantly out of balance.  It is a long time since I did my psychology degree, so I'm struggling to remember what was taught then.  Bear in mind as well that psychology includes the important area of neurology, brain function.  I think there is a huge amount of confusion between these two areas.  Neurology was described as biological bases of behaviour when I studied it.  It was very much focused around the physical properties of the brain, and function, rather than the study of emotions and how they affected our health.  

Many "therapies" offered by the clinics are based around changing behaviour, our response to situations, etc.  TBH i very much doubt the efficacy of these approaches, and feel very sceptical about them.  I know that I do everything I can to pace myself, and do what I can manage.  And I know my illness is not due to how I process things, so CBT isn't going to change anything.  I can feel positive and do something I enjoy, be it a little gardening, socialising whatever.  The resultant "hangover" can feel like I've run a marathon, or I've been hit by a train.  Over exertion, stimulation, whatever has a physical effect.  IT ISN'T BECAUSE I HAVE AN ERROR IN PROCESSING!

The physical effects of doing too much are extremely unpleasant.  The thing is doing too much in my world is very very little to others.  I've been trying to keep up or at least help a little as my parents have been working on making my garden lower maintenance for me (My parents are both elderly, and far from fit, but the tragedy here is they're fitter and more mobile than me).  Just standing around and planning, with the occasional holding a measuring tape and a little bit of planting knocked me out for days - I get to a certain point when my legs will start to shake, and my arms are the same.  That means total rest, no housework, kids get microwave meals or snacks, and I can be found snuggled under a blanket on my recliner, drifting in and out of sleep.  Normally after a day or two like this I can start to do a little more again, and hopefully catch up a little, but the last use of energy has left me like this for almost a week.  My children were here with me this last weekend (normally they spend 24 hours with their father who was working) - I am so proud that I managed to take them to the swimming pool.  It did mean that this morning after I took the big C to school, and the small C to preschool for his morning session I went back to bed until my alarm woke me to collect him.  C'est la vie I suppose.

I should sign off now so I can look at the mountain of housework which is tormenting me, any volunteers to come around and help me clean (ok clean whilst I tell you what needs doing)

Apologies for the extreme rambliness of today's post.  I am not really thinking very straight, but I feel the need to write, and part of the purpose of this is so I can collect together things that interest me, and also try to collect my often scattered thoughts.

This is how I feel today

People don't understand that awful absolute exhaustion you get with ME/CFS.  It is hard to explain what it feels like.  This week I had to over exert myself (by my standards anyway)  With the help of my wonderful Mum, we took my little boy for his second (this time sleep-deprived) EEG.  We had to keep him up late, and get him up earlier than usual and leave early in the morning for his appointment.  Just that little bit of exertion has wiped me out for the whole week.  I have had to neglect the housework, and rest as much as I can.  So if anyone ever wonders why I am grumpy, and exhausted, this is my life.  The tiniest exertion.  Something small.   Means the absolute exhaustion, and agonising pain is here for the duration.  Keeping going until tomorrow at least, where the children will go to their dads overnight, and I will sleep.....

Well here I am, and this is what I am

In September last year, after a couple of years of ongoing sometimes intrusive tests and repeated blood tests, my GP finally diagnosed me with ME and Fibromyalgia.  In a way it was a relief to finally be able to put a name to this thing which has overwhelmed me, and which plagues me on a daily basis.  But in a lot of ways, it was a lot worse knowing.  Because unlike some of the other illnesses suggested and tested for, ME and Fibro don't have a quick cure. Or indeed any cure at the moment.  This is a battle I have to fight day in day out for I don't know how long.  No one can tell me what the prognosis is.  Only that some people get better and some don't.  Some have deteriorating health, and some have episodes or relapses.  

Since I had my diagnosis, I've studied what I can, and learnt as much as I can about the illness.  My GP is working with me to try and find effective pain control, and to treat the illness however we can.  Currently I take an anti-inflammatory (naproxen) and copious quantities of codeine and paracetemol for pain relief.  Citalopram, Vitamin D and Calcium supplements, Zinc and Vitamin C (I take these to try and boost immunity, as I seem to get every bug going).  I've finally got a referral through to our local CFS specialist clinic, so I can start working with them on managing my illness.  Sadly though most of what I do already seems to be what they advise.  Pacing seems to be the most effective way of functioning and getting through the day.

Anyway, about me.  I just turned 41, I have 2 gorgeous young children, who can be alternatively brilliant and total handfuls, sometimes changing in a matter of minutes.  They help to give my day some structure, as I have to get up for school runs, make lunches and teas, and organise everything for them.  There are many times that this is incredibly difficult as you can imagine.  

I've decided to write a blog as a sounding board, a way of keeping track, and somewhere to share information and hopefully support to others.  

This is me and my personal journey with ME.