Tag Archives: neurological disease

A Self Portrait Blog Post By Louise

 

Louise Shepherd, from the UK, is severely ill with M.E.  Below is her self-interview on her blog, Chronic Fatigue & ME:

What is your name & how long have you had ME / CFS?

I’m Louise and I was diagnosed with CFS back in August 2013 but I’ve been suffering the onset of the illness for a number of years.

Where do you live?

I live in the county of Lancashire, in the North West region of the UK.

Age

30

Tell us 5 things about you that the people in your life probably don’t know (non-illness-related):

1) I know all the words to the Disney film Aladdin
2) I don’t remember my dreams.
3) Most of my childhood memories are what other people have told me, or from photographs. I hardly remember anything from being young myself.
4) Number 3 is likely the reason why I’m struggling to think of anything else.
5) Despite how I may seem, I’m actually very quiet & find it hard to talk to people.

Tell us 5 things about you that the people in your life probably don’t know about your life with CFS / ME:

1) I experience pain & exhaustion every single day. No amount of pain killers completely takes the pain away, I’m usually left with a dull ache that just won’t go. No amount of sleep takes away the exhaustion.  I have days where I am so exhausted that even the simple act of breathing (that you don’t even have to think about doing) can be a struggle. Sometimes I wonder where my body finds the energy to still keep my heart beating.

2) I have days where my staircase may as well be Mount Everest, I have at times stood at the bottom of them & cried because I can’t get up them.

3) To make my own cups of tea, I either have to sit on the kitchen side or on a chair as I can’t stand long enough most days to wait for the kettle to boil. I also can’t fill the kettle too full as it gets too heavy, my hands shake & I’m likely to burn myself.

4) I have Hyper-Sensitivity to Light, Sound & Touch. I rarely open my curtains (or the blinds in the lounge if I’m in there) as it’s even too bright on dull days for my eyes. I have to have the TV on a low volume or not on at all. Even my own voice is too loud for me some days. My skin is so sensitive to touch that it is now too painful for me to have my cats sit on my lap & I have bruises on my legs from where they’ve stood on me. Somedays even resting my own hands on my lap can cause me pain.

5) For the most part, I’m pretty housebound. The times I do go out, the simple act of getting ready – shower, getting dressed, doing my hair & make-up leave me feeling incredibly unwell & exhausted before I’ve left the house. Then being out takes even more out of me so that when I do get back home, I have to go straight to bed. But if I didn’t push & put myself through that, to get out even if at times it’s only once that week, I wouldn’t see or speak to anyone at all expect for my parents.

What one thing do you think most people wouldn’t know about living with ME / CFS that you’d like them to know?

That having ME/CFS can be a very lonely existence. In most cases this illness stops you from having a normal social life. It stops you from spending time with your friends or family or people in general as most of us can’t manage to get out at all & it’s not through a lack of wanting to, or being lazy, the fact is, most of us a simply too ill to manage any kind of social interaction. So if you know someone with this horrible illness, please don’t just give up on them because in your eyes they no longer want to spend time with you because that is far from the truth, they would love too! Maybe instead of asking them to go out somewhere, ask if you could go see them. A drink & catch up doesn’t have to be in a cafe, I’m pretty sure we all own a kettle & can get hold of some cakes!

What is the most frustrating aspect for you of living with ME / CFS?

I think for me the most frustrating part is how it affects my memory & general brain function. I used to have a great memory & could absorb & learn things incredibly quickly. Now I’m thankful that I can no longer get out of the car to go into Asda as there’s no way I can remember where it was if I did! My concentration level is very low, I can be talking to someone & part way through I find myself thinking “what am I talking about?” The memory issues cause me to use unnecessary energy – trips up & down the stairs because even though I’ve filled my hoodie pocket with everything I need for the day if I’m staying downstairs, you can be sure I’ll have forgotten something. I’m also very thankful for auto correct as I often struggle to remember how to spell even the simplest of words.

Anything else you’d like to say before finishing?

That I’ve honestly forgotten what it feels like to wake up refreshed, pain free & ready to face the day one job after another. This illness has taken my life without killing me & I want it back so desperately! Even though there’s no cure, I cling to the fact that recovery can be possible & so I keep smiling, try to keep positive & keep fighting for my everyday.
Thank you very much, Louise.

Day of Remembrance for Severe ME Sufferers-August 8th

Stop the ME Cover up!

 

8th August

Severe ME Day is upon us again. This is a relatively new event following its launch last year under the banner of Severe ME Understanding and Remembrance Day 2013 which focused on those who had sadly lost their battle to this dreadful disease.

Many people received this day of remembering the severely affected sufferer with open arms, and some other ME organizations advertised it by highlighting it within their own publications and websites to help raise awareness.

severe ME

This year the “ME Cover Up ” is highlighted.

For this “Cover Up” day, patients have been asked, if possible, to send in photos of themselves covered by a sheet and holding up an awareness slogan.  Below is one of many received:

coverup with sheet

Through this, patients and advocates want to show that many sufferers feel they are invisible to the outside world and believe that ME is not taken seriously.

We also want to make the point that sufferers really want and need so desperately to be “seen, heard and recognized” and to show that patients refuse to be ignored or to be invisible to the world. They may not be able to present themselves to the world because of severe ill health but they want to be listened to and heard by the appropriate governmental authorities.

ME patients also need and want to receive healthcare services, and appropriate recognition from the medical community as a whole as bona fide physically ill patients.  Also, they and advocates would like to see more desperately-needed biomedical research undertaken (most important!).

The medical profession and the general public need to understand the seriousness of the illness, myalgic encephalomyelitis, and remember that underneath the sheet there is still a human being.

Some ways in which ME is covered up:

  • By using the term “CFS” instead of the WHO (World Health Organization) acknowledged disease named myalgic encephalomyelitis;
  • By using the composite term CFS/ME to mean anything other than ME;
  • By equating ME to Psychiatric Chronic Fatigue intentionally and wrongly;
  • By using the term ME to mean a fatigue condition, not the neurological disease that it is;
  • By believing that ME is primarily caused by wrong thought and deconditioning (not enough exercise);
  • By inadequately testing for ME dysfunctions and underlying causes;
  • By psychiatry successfully promoting ME as simply fatigue and psychosis and depression to create prejudice;
  • By not providing a suitable medical health care pathway for ME;
  • By portraying the illness as less severe than it is;
  • By not meeting the needs of the most severely affected, so they become invisible;
  • and many, many others.

All these things help to cover the truth of this serious neurological disease and help to continue to make patients invisible so as not to be able to receive healthcare, social services care and they are “swept under the rug” from society in general.

 

[images and slogans from 25% ME Groupdotorg]

Video: “Get Well From ME”

I have just viewed a video of a young man who has M.E.  He looks healthy, (but of course, he isn’t) and he’s spending some time at the ocean for the shoot.  M.E. is an “invisible” disease.

I found this on Twitter @GetWellfromME.  His website is www.getwellfromme.com, where he has many videos that are enlightening and so full of information and suggestions.

He has the following announcement at the top of his site:

“ME (Myalgic Encephalomyelitis, sometimes called Chronic Fatigue Syndrome CFS) is a serious and often severely disabling long-term neurological disease which also affects the body’s immune system, hormones, muscles and circulation. Up to 250,000 people in the UK have ME, and millions around the world. There is no cure yet. But in these videos, I hope to bring together some of the best available wisdom and advice to help people manage ME and hopefully even look forward to getting at least partly better or even making a good recovery – whilst genuinely seeking to understand and support people with severe ME and who, through absolutely no fault of their own, are not getting better.”

This video is a little more than 6 minutes, but it goes quickly, because you get caught up in what he is saying.  Graphics help to emphasize what he says.  He “tells it like it is.”