Some Days - All Days?

Some Days!  

We have all had those days: the days where nothing goes right. Yet, we weather the rough times because we are confident that things will look up again tomorrow. 

In a similar way most people have experienced a few day's confinement to bed with a 'flu or other nasty ailment. We detest: the restriction, the inconvenience, and the horrible misery of being being so very vulnerable.

But we are confident that these things will pass.....

Indeed the knowledge that something, so unpleasant, won't last long is often the one thing that keeps us going.

So what happens when an ailment does not pass?  

I remember my early days with ME.  First the frustration of having to take extra time off work, then the increasing horror that this wasn't going to go away.

As the months passed, I was continually explaining to others that I wasn't better "yet".  Naturally, the assumption remained that I would "get better soon".

Unfortunately as the months, and then years passed, it became clear that my health would not spontaneously be restored.  So my every-day-experience became what most people endure only some days.  ME, however, is all days.

So I lost my job.  I lost my ability to walk beyond the confines of the house. I lost many physical abilities that I had previously used to define myself.  I found myself having to become some-one else.

Yet, even in my lowest months (I am doing rather better now, but that is another story), I retained my ability to look after myself; to have conversations with friends; and to occasionally leave home for outings.  With the support of my family and good friends, I found alternative ways to find pleasure in life.  Somehow I re-invented "me".

I am one of the lucky ones.

The trouble with this disease - and the thing that should make healthy people frightened - is that ME does not always leave the sufferer with enough health to create a new existence.

For some, the illness robs them of practically everything. (Read this recent heart breaking story.)

Very Severe ME could be likened to a devastating 'flu - with sufferers living that experience not just for days on end, but for months, and in some cases, years on end.

How can society (or even the less severely affected by ME) ever hope to comprehend what that must feel like?

All days.

Certainly the illness I have experienced has shocked those around me, but it is minor compared to the experiences of those most severely ill with ME.

So, why then is Very Severe ME mostly ignored in research?

Where is the outrage that people are left so long in this state?

And why are healthy people not more afraid of this illness? 

I don't know the answers, and I don't suppose change will happen quickly, but we can all help in little ways:

• by supporting ME research projects;
• by keeping up to date with ME news 
• by adding support to new ME campaigns as they come up.

Think about it: Some days versus ALL days?

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A few ME Awareness campaigns:
#MillionsMissing

#May12BlogBomb
#LightUptheNight

#TeamPrincess

Links to UK charities that I have donated to at some point:

Hope 4 ME & Fibro Northern Ireland (I am a trustee for this charity)

Invest in ME (My family has done a sponsored cycle & a sponsored run for IiME)

ME Research UK 

ME Association 

Want to know more about Severe ME?

This is a link to Stonebird Greg Crowhurst's site where he often discusses Severe ME

Just ME BLOG INDEX.

#May12BlogBomb - Please submit your links here.

May 12th Awareness Day is fast approaching, and #May12BlogBomb is back again by popular demand!

This is a chance to use your blog to say something that you think is important about one of the chronic illnesses that share May 12th Awareness Day.

Just ME is primarily an ME blog (obviously), but fibromyalgia, MCS, Lyme and CFS posts are all very much welcomed for #May12BlogBomb.

A bit of history....
I first created the #May12BlogBomb tag in 2014 with the idea of making all blog posts for May 12 Awareness Day identifiable wherever they were shared on social media.

I let people know that I would search the internet, find the links that had been shared using this  #May12BlogBomb tag and that I would collate all the posts in a link list on my blog Just ME.  

I expected about a dozen links, but the idea took off a bit more than that!

As it turned out, trawling the internet for the links proved to be quite a task, and at the end of last year I was unsure if I could manage it another year.

So this year, to make things easier for myself, I'm asking you to submit the links for your awareness posts into the submission form below.  (Apparently this form will only work on a laptop or desktop computer - sorry - so as an alternative you can also send your link to me at keelatoo@live.co.uk)

Create your own user feedback survey .

 Perhaps if you don't have a blog, and have something to say, then consider writing a guest post on Just ME or another blog.  (You can contact me on keelatoo@live.co.uk)

Please watch out for the new #May12BlogBomb Link List for 2016.  I will schedule it to appear at 11am UK time on May 12th 2016, and will add new links at intervals through the day.

So what will you say this year?

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Previous Link Lists can be found here:
#May12BlogBomb 2015 Link List 
May 12 Blog Bomb Link List  (2014)

I'm not just tired!

There are people out there who are constantly exhausted due to their life situations, and it would not be an error to say that they experience "chronic fatigue".

This of course is where that name - "chronic fatigue syndrome" - becomes such an insult to those of us who actually have the serious disease ME.

ME is not just fatigue, and it is not about being "just tired".

This morning on Facebook I replied to an ME patient who's sister told her she couldn't possibly understand what "tired" was until she had experienced the sleepless nights of parenting babies and small children.

My response: (name changed for anonymity)

Helen, I had 4 children. First 2 were 15 months apart, then a gap of 4 years and second two 21 months apart.

I know what TIRED is as regards looking after small children!! (Lots of broken nights there & I breast fed each of them for 8 months +, so no-one else could do any nights for me).

ME is not the same as tired. In fact I hate using that word (or the fatigue one either) in relation to ME.

ME is about illness. It is akin to having 'flu after every exertion. It is about the risk you take every time you even vaguely push yourself, because you may not return to your previous level.

Tired & exhausted - are used in normal parlance. They tend to imply you have done something significant.... Being in a state where this exhaustion is chronic - due to babies or whatever - is not easy either.

So in some ways your sister is right. You have not experienced it, so you can't know that level of dog-tired and exhausted that she has to push through daily. I knew it. I pushed through it for years. It can be its own kind of hell, despite being done with a happy heart due to love for your children.

The difference is, it is a tired you can give a reason for, and a tiredness that you CAN push through... It's not easy to push through it of course, cos that is what exhaustion is all about! However remove the reason for the tiredness, take a rest for a few days, and things get back to normal. The tiredness can abate when rest is forthcoming.

Now ME is different. Pushing through any sensation of tiredness is a serious health risk. People who become severe talk of having pushed themselves to do things....

So I will tell you, I feel LESS tired now that I am ill with ME than I felt when I was a young mother with 4 children. (They are all now grown up & have left home.) The reason that I feel less tired, is down to the fact that I pace myself. Every time I have even slightly pushed past the point when I start to feel "tired" has caused relapses of a long term nature.

I know now that feeling "tired" is a dangerous state. I use that as a signal that it is time to stop. In fact if I wait for that signal, it might be too late, the damage may be done.

And if I do have to push on (out somewhere perhaps - no choice) then the risk of my body simply failing to function, is higher than it ever was when I was dog-tired from parenting.

Sorry got on a roll there. (((Hugs)))


So the word fatigue does us no favours. Neither does the word tired. We are all ill, some quite seriously so, and others at risk of becoming seriously so.

The experience of ME is beyond the realms of normal human experience. Therefore, normal words like "tired" and "exhausted" do not apply to our situation.

We are ill, and exertion of any kind makes us more ill! 

So the sooner we can ditch any reference to ME as being any form of "fatigue" the better.

*****

Another post on that word "tired": Are You Tired Sally?

About me & "Just ME"

This post was first published on Chronic Illness Bloggers.  Re-posted here with permission. Original post can be viewed here.

Blogger of the Week: Sally Burch at ‘Just ME’

Each week we are highlighting a different Chronic Illness Bloggers’ member as our ‘Blogger of the Week‘. As well as getting to know each other better, we hope that you enjoy this series and that you find the interviews with each member to be insightful and helpful.

This week our blogger of the week is Sally Burch of Just ME.

1. Tell us a little about yourself.
Prior to illness onset in March 2012 I was a biology lecturer living on an organic small-holding with my husband and our four children. We often hosted foreign Help Exchange visitors who helped with the animals, garden and house in exchange for their keep and some sight-seeing. All that stopped abruptly when I became suddenly unable to work and increasingly incapacitated by ME – myalgic encephalomyelitis. Sadly it is a very misunderstood illness and often portrayed in the media as if it were not serious.

2. What is your blog called and how do you define your blog’s purpose?
My blog is called“Just ME” because often people perceive ME to be “just” about tiredness, but also because the blog is really “just” a collection of my opinions. Mostly I see my blog as a means of sharing information about ME with others. I try to write about the type of things those newly ill with ME need to know. I also use my blog to help with campaigns, to report on local events, and to give my opinion on current ME issues.

3. How long have you been blogging and why did you start?
I started my blog in December 2013 after being ill for almost 2 years. I realised that I was writing some lengthy opinion pieces on forums and on Facebook, and that they then got lost in cyberspace. I felt that a blog would be a good place to record some of those opinions so that I could find them again if I later wanted to share the ideas with others.

4. How often do you post? What made you decide to post on this schedule?
I don’t post to a schedule. I write only when I have something to say. However I can be a bit opinionated (perhaps a foible of being a teacher, and a mother) so my blog still gets 40 – 50 posts each year. Not quite one a week, and not always evenly spread across the months of the year.

5. Do you feel blogging has benefitted you? If so, how?
Very much so. At a time when my physical abilities were being stripped from me, I found that having a voice through my blog really helped me to believe that I could contribute something useful to the world. I also met other bloggers online and found strength in the community I found there.

6. Why do you feel it’s important to blog about chronic illness?
Many might say that blogging about chronic illness is about raising awareness beyond the circles of the chronically ill, but I don’t see that as my main purpose in blogging. My blog speaks mostly to those who are themselves ill, and discusses ways of coping, and what we can do to change the way our illness is treated by both medical professionals and society at large. However, despite not really writing for the general population, I know that some of my posts have been circulated beyond ME circles, and so perhaps they have had an awareness raising influence, and of course I am pleased about that.

7. What are your top 3 blogging tips for other bloggers?
1. Write about what you are passionate about: if it doesn’t really matter to you – don’t write about it.
2. Write about one concept at a time and distill your thoughts so that you are succinct. Often a first draft is too long.
3. Always include a unique image in each post, so that when your post is shared online people will notice the post as new.

If you are a current member and would like to participate in this series and have your blog featured, please click here to fill out the submission form.

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If you are interested to know more about Chronic Illness Bloggers please follow this link.

Work-Sick Divide?

There is always a grey area when judging how miserable you must be, to be "ill enough" to stay off work.

When I was still teaching, I once had 3 weeks off work with a severe flu.  I was very miserable for most of that time, yet the last day of that absence period I remember thinking that I felt okay-ish, and I felt quite guilty for still being off work.

In those days I tended to return to work as soon as I could stagger in, confident that my body would heal itself in due course.

So now that I've become long-term sick I wonder about where the "well enough" boundary should lie?

Does this well-ill boundary fall in the same place on the way down as it does when going back up?

And does sickness duration affect your approach to returning to work?

I like to visualise things, so I created this graph, to show how I think most people regard a period of work absence due to illness. (Click on image to make it bigger):

Let's assume our "normal person" has reasonable health, but they get the odd cold, so they are not adverse to sometimes pushing on into work feeling a bit below par.  Yet their basic health is good, so dips in well-being might not much change their ability to work.

Then if our normal person gets flu - well that can happen quite quickly, so although they may "struggle on" for a bit in what I have called the "grey zone", it will soon become clear that they need to take to their bed and rest.

Yet on their return to work, they are unlikely to go back whilst feeling as miserable as they did on the last day before their absence period.  There is a general understanding that people should stay off work long enough to recover sufficiently to properly function once more.

So the work-sick boundary is not the same on the way down as it is on the way back up.  We tend to stay either "working" or "not working" long enough to see what direction things are really going. We neither rush to take time off, nor rush to return until we are sure. 

All the same, it seems clear to me that time in the "grey zone" for a healthy person, can be a short transit between two extremes.

Absolute full health can, of course, still take a bit longer to return, so for a time our normal person might cut out a few after-work social activities until they feel fully back on their feet.

When I was in normal health, that "return to wellness" was an assumption that I never doubted.

So what about the Chronically Ill person?

I've assumed this person is still working, and that their health is such that they are really only just "well enough" to work.  For this person each cold is a serious problem, and they might regularly dip into that "grey zone".

 Now assuming this person gets the same 'flu as our normally healthy person, let's look at what might happen.

Like the "normal person" flu acts quickly to knock the chronically ill person off their feet, but sadly recovery is likely to be slower - simply because there is less wellness to draw on.

This chronically ill person is also likely to be incredibly aware of the time they take off work.   So what do they do?  Do they try to go back as soon as vaguely possible, and risk a relapse and another period of absence? Or do they wait until they are really "well enough" to work, and in doing so take an extended absence?

It is a hard choice for others to understand, because although "normal" folk may have some experience of attempting to work whilst in that "grey zone", their transit through this zone is short-lived and their experience very temporary.  Bluster from the healthy, about how "I just pushed on through..." sounds shallow to an individual having to cope with long term ill-health.

Sadly I have no answers to provide, but I think the concept of ill health lingering for long periods in this insufferable "grey zone" is a useful one to consider.

Going back to the 'flu I mentioned earlier - because I was generally healthy at the time, my transit through the grey zone back to "well enough" was so rapid, that I ended up feeling "better" sooner than I had expected.  A day later I was back in work and functioning normally.

A chronically ill person has a much slower transit through that "grey zone" and consequently much more difficult choices to make about when to attempt a return to work.