Reflections & Ramblings : 07.03.21
Reflections & Ramblings …
It’s Sunday afternoon (07.03.2021 @ 13:30) and I am lay on the settee, in our lounge, with the blinds closed to block out the brightness. I find myself reflecting on the many facets that there are to this illness and the many levels of severity changes that I’ve gone through during the course of my own illness.
I’ve mentioned previously that I’ve been ill since 1984. However, I was categorised as mildly affected in the beginning. Something I didn’t, and probably couldn’t, fully appreciate because my life was so very impacted, even at this level. And being moderate or even severe was unknown to me at this point. So all I could do, as we can all do, is to reflect back and compare the before and the, then, now. All I had, at this time, in my ME toolbox was the ability to know my own before and after experiences; being well and being sick. Therefore, even though somebody categorised my illness level as mild, to me it impacted and changed the whole of my life course, and mild was extremely bad in comparison to being well.
Taking this idea a step further, until becoming severe, even as a sick patient with mild or moderate ME, I don’t think I could have ever comprehended what it’s really like to be severely ill with ME. It’s such an incomprehensible state to be in.
When you are this sick … It almost feels like you’re just waiting to die, or waiting to live. You are actually in no man’s land …
In reality, you are not physically dead, yet you are not physically living neither. It’s an awful place to be. And the worst thing is, it’s never ending, it’s day after day, month after month, year after year. It never ends.
By comparison, most people who are are as sick as people with severe ME, actually only stay that sick for a few weeks, maybe a month or two, because they do die. But with ME, you mostly do not die, (I say mostly because some do die but that’s another blog post for another day). Know for now, that mostly you do not die, even though you feel like you might.
It’s an awful place to be and reminds me of a quote I once heard:
“life is what you do while you’re waiting to die …”
Because, I kind of agree with this. It throws a perspective on my life value that I’d rather not have to face. It highlights to me that, in my mind,
my life is nothing … because I do nothing …
and I guess I do this, nothing, while I’m waiting to die …
S O F * * K I N G G R I M …
I make plans every single day. I make lists that I’ll never get to tick. I buy shoes I’ll never get to wear. And make up I’ll never get to use before it’s gone off. And I go to bed every night hoping that I will wake up different, dare I dream better, than the day before. But, sadly, I do not wake up any better. Sometimes, even without any obvious cause or reason, I will wake up even sicker than I was the previous day.
So today, I reflect on this life. Not in general terms, but this specific life that I, and millions others with ME, have.
This is where the ramblings will come in and so I think I will just move on to some of the deeper things that I reflect upon.
But do come back again to this post because I may fill this …
gap … here …
with more ramblings … I’m just very tired now …
I reflect, with great admiration, on how strong people with severe ME are, actually having any level of severity requires incredible inner strength of character to get through each day. For the record, this is not to say that I don’t completely understand those that just cannot see it through another day and determine that the only way for them to get through it, is to end this, so called, living.
I totally get it … and I have the utmost respect for you too … I have truly been there in those dark places with you …
But I will go to bed with h o p e.
And I will wake up with h o p e.
It is h o p e that will carry me through to the next day, hour, minute, or moment.
And today, more than anything else, I wish that you too have hope, enough to see you through your darkest moments.
However, being this severely ill means that all you can do is live your life inside yourself until the day comes when we can be cured.
This is where hope comes in again, because without it we won’t get through. On this matter of a cure and hope, I have hope that there will be a cure very soon and we can end ME as we know it. So that I, and other sufferers now and in the future, will still get to live lives as we are meant to, not on deaths door for how ever long …
In the meantime, in order to get through, with hope intact, I desperately hang onto the memories of things that I have previously done and things that I have managed to enjoy despite being sick. I spend my time recalling and reliving days that I have already had. And I hang on, even more furiously and often by the skin of my teeth some days, to the plans that I make from nothingness I live now …
ME is a very complex and misunderstood illness and so research funding is extremely poor.
In the image below: top row from left to right: me as a baby, me around 5 years of age, me just starting high school; bottom row left to right: me when I was mildly sick, me when I was moderately, maybe early severely, sick; I don’t have a photograph of myself now, as severely sick as I am, but it’s about five years on from the last photo.
With that in mind, if I have spoken to you, in any way, on any level, today, please help us EndME and donate anything you can to ME research.
By doing a Google search you will find many areas of ME research that are crying out for donations. You can also look over my ‘donate to research‘ page, which is being updated all the time.
However, for very personal reasons, I 100% place my hope in The Open Medicine Foundation and would really appreciate it if you could show your appreciation for my writing today by donating to their End ME/CFS Project, mentioning me, Denise from fragmented.ME, when you do donate. You have no idea how deeply this will be appreciated by the whole of the ME community. It will bring us closer to understanding this life destroying illness and in turn closer to a very much needed cure.
T H A N K Y O U
Please feel very welcome and free to contact me to share your outcomes or with any questions you may have.