Thursday, 27 July 2017

M.E? THAT'S NOT A CHOICE.

I'm pretty exasperated right now at the ignorance, insensitivity  and what I consider offensive attitude of my local GP practice, not that I'm surprised, just mega disappointed that they still evidently have no real understanding about Myalgic Encephalomyelitis (M.E). The anger isn't just for myself  it's never been about me, it's about M.E and the constant ignorance, arrogance, and prejudice that still sadly  surrounds it, and that thousands suffering with have to face on a daily basis. Just when you think progress is being made in terms of awareness and real understanding?.....



Today a  letter  dropped through the door from my local surgery:

"Dear *******  
******* Surgery  are pleased to announce the introduction of a new free service to patients who would like help & support to become more active.

We have a Get Active specialist available to work with adults who are currently inactive and would like to find out more about opportunities within the borough  to become  more active to improve health and wellbeing.

All patients will undergo a 1-2-1 consultation to look at ways of becoming more active, understand any concerns or challenges you have  about  being  more active and to help you find suitable opportunities in your local area. Support and motivation can be provided for a 12 month period to help you become and stay more active.

There is a variety of activities available, some  of which are free of charge, and we will help you find the best solution for you.

If you would like to take part please contact me on the number below to make an appointment for you to take part in the scheme"

Firstly, it's only taken them 27yrs to offer me support...& this is it? Secondly there is nothing  they could offer me now that I haven't tried  over the years in the quest to get better from  M.E. Being inactive due to a chronic illness  isn't a goddam choice, I don't need help to be active, I don't need help to get motivated, I'm as active as anyone possibly can be with a condition that's primary symptom is Exhaustion...and if I attempted to list the rest of the symptoms we'd be in danger of turning this into a novel.

I don't need motivation to  drag my ill and weary ass out of bed, get dressed, clean my teeth, comb my hair and put a bit of lippy on, I  attempt that every  single morning  in a desperate bid to retain some dignity & identity. Having lost everything else due to M.E this is all that I have left.  I'm sure for the healthy among you, morning grooming is done on automatic without thought before heading out the door to start your day?  But some days a little grooming is all I  can do before  collapsing on top of the bed again, fuel tank empty, energy gone. That's how it is when you have M.E ......THAT'S NOT A CHOICE?    To have spent up all your energy before the day has even begun is frustrating beyond words, incredibly sad and extremely soul destroying, it has nothing to do with choosing to be inactive, and everything to do with an illness that steals every last drop of energy and breath from you constantly and without warning.
Having to miss loved ones weddings, funerals &  celebrations? THAT'S NOT A CHOICE. Not being able to hang out with friends as they go off to party at the weekend?  THAT'S NOT A CHOICE.  Choking when I eat  due to Exhaustion and unsafe swallow? THAT'S NOT A CHOICE, and no motivational chat and free membership to the gym is going to change that? 

I can't help wondering  if they've included Cancer patients?  MS patients? Crohns disease patients etc when sending out this letter ? I very much doubt it?  How are they determining which  patients to label  as Inactive?  While the scheme is voluntary, how incredibly insensitive to send it out to those with illness, suggesting that they are inactive through choice, therefore lazy? 

"Fred Bloggs is paralyzed from the neck down?"
"Yep, he's inactive, better send him a letter, bit of facial yoga and a good pep talk should get him going?"

When it comes to inappropriateness regarding M.E there's always this  complacency and acceptance that has gone on for far too many decades .

Those who have followed  from my days with Action For ME to a Columnist at the Watford Observer to present day with  Lets Do It For ME! who work in support of Charity Invest In ME Research   will know that I have spent  those decades and precious energy along with many others  raising awareness, educating and battling to change mindsets . I'm not some dainty flower that is blown over at the slightest breeze, I've had to adopt rhino skin over the years, not only to cope with this debilitating and chronic illness but also the endless medical & media ignorance, which to some degree has been a lot harder to swallow. 



The letter I received today made my heart sink because it shows that although we've come a long way there is still a long way to go and the battle is far from over. While I'd rather it not be the case... to be part of this battle for future generations is my choice, however, any inactivity due to having M.E? THAT'S NOT A CHOICE.

                                Til Next Time, Stay Blessed  
                                    Back Before Elvis x