Looking back to move forward....

This week I was contacted by the extremely worried Carer of a Severe ME Patient who had been in touch with me about a year ago.  I learnt from her Carer, that, heartbreakingly, her Patient had deteriorated terribly; currently, she is unable to walk, speak, feed herself or tolerate any stimulation in any form.

I remember being like that. It is utterly terrifying. For both Patient and Carer alike.

And what makes my blood boil is that, here we are in 2020, after decades and decades of Patients suffereing like this, medical professionals are still seemingly at a complete loss as to how to help Very Servere ME Patients. Leaving Carers the world over having to somehow get through each day, watching their loved one suffer, without any meaningful help or support. No other illness suffers this level of abuse, neglect and contempt and it is unforgivable.

So, my husband and I went hunting and found some old notes from when I was admitted the first time to Professor Findley's ME Unit back in 2000, in the hope that there might be a little nugget of information that might, just might, be useful to her Carer.

I discovered a copy of my Daily Programme that the Occupational Therapists put together for me during my first week on Ward B1, which was a glaring reminder of just how severely disabled I was back then.  Sending it over to her Carer, I wondered if it might be of use to any other Severe ME Patients out there, so I am attaching a photo of it below, together with a blank form too, which might be useful to Carers to help them plan out their Patient's day.

I also came across an old and really great book compiled by Emily Collingridge, called, Severe ME - A Guide To Living, which helped my Carers enormously when I was severely affected. It is packed with information, written by someone who endured Very Severe ME first hand; It seems to still be available and I can thoroughly recommend it to any family or friend whose loved one is Severely affected.  Here is the link, available from Action For ME for £5.99.

http://www.severeme.info/buy-the-book.html

Below are images of my old ME Programme Sheets.  Most important thing to remember as you read them, is just how painstakingly every single tiny exertion has to be broken down and paced out over the course of the day, and week.

I found it useful to think of managing a Severe ME Patient's tiny activities just as you would manage the building of a Tower of Jenga pieces.

If a Carer tries to pile on the Jenga pieces all in one big go, say changing the Severe ME Patient's clothes all in one go in the morning...then the patient will crash and sink even farther into Severe ME oblivion...but if the Carer spreads out the load, doing a little tiny bit of eg the clothes-changing activity over the course of a few hours, then the patient stands a better of chance of being able to cope with the effort demanded of them, and the Jenga Tower will not come crashing down.

Food for thought.






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