Witnessing the slow decline of a failing body

[LastLoveLetter]

Mere weeks ago, I was alert and focused. My mind was fast and functional, more than it had been in many years, perhaps more than it had ever been. I could think, feel and experience things with an incredible sense of clarity.

It was...beautiful. It truly was. Every time I left the house, the air felt new and exciting. I felt energised, ecstatic, that I was outside and living life, not cooped up indoors in a tiny room, watching the world go by. It was like being a curious child. It showed in how I looked when I wandered around the streets. It showed when I interacted with people - they could see how happy I was to be there in front of them, how genuinely thrilled I was to meet them.

Now, that dense fog has crept in. Everything is muddled, discombobulated, out of place. That familiar "cotton wool brain" feeling has returned. It's hard to think, it's hard to focus and it's hard to write. Sentences that took me seconds to write before are now being composed little by little at an agonising pace, only to be rewritten again anyway.

I am stuck at home again with an increasing frequency. I'm not quite housebound yet like I used to be, but I'm rapidly heading in that direction.

The chronic pain - which never completely went away, but was at least bearable - is becoming more and more prominent. My joints are clicking and creaking constantly again. My back is pulsing and throbbing. My legs feel week. My nerves burn and tingle.

The medication I am taking, I have realised, is a little like a mask, a bandaid. It did an excellent job of reducing symptoms before, but it doesn't fully address the underlying causes. And those causes will never be addressed - not really - because the medical conglomerate doesn't like to acknowledge the fact that chronic conditions like mine even exist, let alone run various tests to pinpoint the underlying causes. Such testing tends to be self-funded by those who are determined to find solutions, and I'm not well enough to work and earn a basic living, let alone pay the hundreds to thousands of pounds required for rigorous testing. Not even for treatment - testing!

The doctor who prescribed my medication has advised increasing the dosage. I'm not giving up all hope just yet, but I know better than to possess too much hope in the first place.
The knowledge that I can make so much progress only to lose it all is gut-wrenching. The knowledge that a dosage can be working wonderfully and then one day simply not anymore is terrifying. Say I reach the maximum dose and it stops alleviating my symptoms, then what? I will be back where I began. It feels like I'm living on borrowed time, and it will inevitably run out one day.

For me, the only thing that has been worse than being permanently enfeebled and ill is making improvements and seeing a future, only for it to be snatched away. To feel the walls closing in all over again. To find that things that were once opportunities are now impossible again, utterly unattainable.

Witnessing my body fall apart has been far more painful the second time.

 

[in pain]

I really connected with your words because I am in a very similar situation. I am in constant chronic pain and it is limiting my physical mobility which in turn creates more chronic pain. I have periods where I make progress only for it to be snatched from me. When it happens once or twice it's painful, but when it's been countless times I just feel heart broken, despair and beyond frustrated. It feels like I am trying to build a sand castle at the beach but the bully comes and smashes it to pieces over and over again. I really don't want to die, I want to get better but after a decade of struggling it's become obvious to me that I am only getting worse. I am very close now to ending it, maybe days or weeks. What started out as just a physical ailment has turned into a full blown mental one as well. I am so mentally drained that I can't maintain focus on anything. I can't watch a show or listen to music without zoning out. I can't find joy in anything that I use to find joy in.

 

[makethepainstop]

I wish both parties posting before my find relief. Having our bodies go through a decline, is a very unpleasant thing.

 

[LastLoveLetter]

I really connected with your words because I am in a very similar situation. I am in constant chronic pain and it is limiting my physical mobility which in turn creates more chronic pain. I have periods where I make progress only for it to be snatched from me. When it happens once or twice it's painful, but when it's been countless times I just feel heart broken, despair and beyond frustrated. It feels like I am trying to build a sand castle at the beach but the bully comes and smashes it to pieces over and over again. I really don't want to die, I want to get better but after a decade of struggling it's become obvious to me that I am only getting worse. I am very close now to ending it, maybe days or weeks. What started out as just a physical ailment has turned into a full blown mental one as well. I am so mentally drained that I can't maintain focus on anything. I can't watch a show or listen to music without zoning out. I can't find joy in anything that I use to find joy in.

I am so sorry you are in a similar situation. It's terrible when we are trapped by our own bodies, unable to find joy in anything or do anything that makes life meaningful or worthwhile.

I say I'm watching my body fall apart for the second time, but is it really? Come to think of it, no. It fell apart as a child, fell apart again in adolescence and fell apart multiple times as an adult. I'd pick myself up again, I'd make progress and then fall back down. I'd try various treatments, and nothing worked.

What makes this time different, I think, is that before starting a new medication, I was completely housebound (and often bedbound). The medication gave me what felt like a new chance to live my life - it did work - and now it feels as though that's been taken away.

The sandcastle analogy is so poignant and makes a lot of sense. You put so much time and effort into trying to rebuild your life, only for it to crumble. I always likened my own body to a dilapidated house, falling apart from within. Despite repeated attempts to repair it, it will inevitably fall apart again. It cannot be fixed.

I know that feeling of not wanting to die, but also not being able to exist on these terms. I wish no-one had to go through that, and I'm so sorry it has come to this point for you.

 

[FuneralCry]

It's true that in this life often having hope just leads to more suffering when it's lost. There is nothing fair about this life. Many humans endure such extreme suffering all for no reason, which can very easily get worse. It must be very tiring what you are going through, I see the human body as being designed in a way in which to cause harm. It really can be prison like being trapped in it when there are very limited forms of relief.

 

[Venus13]

I really appreciate you sharing this. I know how hard it can be to even write. You really articulated this well. It was rather difficult to read because the decline is really unspeakable and the difficulty of it is hard to describe. I feel connected to your words as well. I went through an intense personal situation recently and watched 5 years of progress wiped out in a matter of weeks. I collapsed in the shower this morning and just laid there with little strength to get up. Despairing moment, nothing really else can describe it.

I wish I could share some words of comfort but I'm personally vacant space in the chronic illness fog. I want to share nothing but solace for you as you face this. You've been putting in the work to heal and I can only imagine the way this must feel. It's really unreal what our bodies can do to us, more than our souls should have to go through. I really hope you get more days in the crisp air feeling alive and connected like the ones you described.

 

[Shivali]

I feel you ...

 

[whatevs]

That is an interesting concept. Are the periods of respite in the chronically ill an example of sophisticated torture? I imagine expert tormenters would refrain from excessive pressure put on the victim, lest the toy broke too early, and to make the pain last longer and be felt more they would set up reasons for hope and a time of transient recovery.

My first knee jerk reaction was to disagree with the idea that uninterrumpted decline would be preferable to having times where you are among the living again in between, but now I see what you mean... A diabolical device of torment.

This kind of situation some of us are in is also particularly despairing, since some people have a change of heart or polish their psychology and never have to return to SS or to their 'blackened' head space, but when your own body is a torture chamber the walls close in you with less routes of escape. It doesn't matter as much if you kill yourself or not if you're already barely living and you can't change that.

 

[LastLoveLetter]

My first knee jerk reaction was to disagree with the idea that uninterrumpted decline would be preferable to having times where you are among the living again in between, but now I see what you mean... A diabolical device of torment.

Thank you. I should clarify that when I say that making improvements and declining again has been worse, I'm only speaking for myself and my own experience, not for others. I have added "for me" to the beginning of the sentence to make this clearer. Those who have always been ill (and never been able to improve or will never be able to) would perhaps feel very differently about this and that's completely understandable. I don't want to diminish that in any way, and acknowledge how lucky I am to even have had an opportunity to improve for a little while, despite how much pain the loss of that improvement has brought.

It doesn't matter as much if you kill yourself or not if you're already barely living and you can't change that.

Exactly. It's not even a life half lived, it's just existing day after day without the means to change it. It feels like death would be merciful, yet it's so hard to take that step. And there's that little part of me that hopes there's still a chance for me to improve again, on a longer-term basis. But in my experience, hope is often a cruel little liar.

 

[CTB Dream]

Real understand this concept life body deteriotate all time all solve med temp not always work , feel fissappoint do hard try only see result temporar go time return same worse. This sll sad see past before better now worse, there many disese illness nothing solution, sorry chroni psain many conditions this life cruelty, this scary body worse time afraid. Real understand hope peace hug

 

[Callie Arcale]

Dear Persephone,

My heart sank when I saw your name. I had hoped LDN was your ticket out. I am so very sorry life is such a beast to you

Yes, I agree with your conclusion. LDN is not a cure. I don't think brain inflammation and autoimmunity (which LDN modulates) are the causes of ME/CFS but rather the results of this awful disease.

I am not sure how interested you are in current research into ME/CFS but my money is on Robert Phair's Itaconate shunt hypothesis. Our metabolism seems to be trapped into a disease state from which it cannot escape. And the only way to cure ME/CFS is to get the cells out of that trap.

LDN treats symptoms, not the root cause. Still, don't give up on it yet. Some people fiddle with LDN for a while until they find the right dosage.

I am doing the course on pacing, as I told you. The ME-specialist I'm seeing won't prescribe LDN until I find my baseline and learn to pace. Pacing is sooo damn hard, and I honestly don't think I have a baseline. I'm in rolling PEM since last year. But I have no other option than to do what he says.

How cruel that you got a taste of freedom, only to have it snatched from you :-(

I'm sending you so much compassion and love. I know… Persephone, I know

Yours,
Callie

 

[Sad_Sack]

I'm really sorry you have been going through this and on top of it to get some relief only for it to fall through. I'm in a similar situation and have been dealing with chronic illness for 30 years now. There have been a few stretches during this time that I had started feeling improvement and allowed myself to hope it was going to resolve and every time it would crash. So many meds, surgeries, supplements and attempts at exercise and only have slowly gotten worse. I hope whatever the medication is that seemed to help you will work again when increased and that it will last. Best wishes to you..