Tag Archives: grief

Dear Chronic Illness/ Pain/Conditions Sufferer…

A Message For Anyone Who Is Suffering With Chronic Illness/Pain/Conditions… Especially Those Facing This (whether literally or emotionally) Alone…

I’m so sorry you’re having to endure this — it’s difficult enough to deal with one condition, let alone several and at a severe and heightened state too 😦

The first thing I really do want to say here is: **You Are So Brave**. Truly. What you are facing is truly horrendous and scary (Chronic Illness/Pain/Conditions are utterly terrifying, and people do NOT EVER take it seriously enough! 😡*big scowl*🤬), and yet, still, you face it. You endure it. You keep fighting. You are still alive and you haven’t given up. That is ALWAYS admirable and commendable. Even though you feel utterly awful and exhausted and frightened, it’s still true. So, please try to remember that… 💜

I think I may have some understanding of the awful situation you’re having to deal with — I have had  Chronic Pain and Illness and Conditions, all at a very severe level for prolonged lengths of time, including many asthma attacks requiring emergency hospital treatment (I’m now strangely very comfortable and familiar with the back of an ambulance… 😒🤨), and I’ve suffered more than my share of PTSD with many things that have unfortunately happened to me, and have even attempted the worst at times… And I am well aware of what *I* felt and suffered in those times, and I truly never want to think about what I had to go through with the episodes of psychosis I have suffered on many a pill I’ve been told to take, it was so very horrendous. To be on them continuously, without being able to come off them, must be harrowing. To anyone who cannot come off them, *You* must be very, very much suffering with this… 🥺😟

As an Autistic person (Asperger’s), this also made all these experiences worse [for me] because the way I deal with every small thing in life is that it has to be controlled for me to understand it, and without understanding this (my illnesses/conditions/pain) it made it all the worse… So, I’d like to think I’m coming from a place where you might feel I do have a little understanding of being where you are.

Whatever you are going through, it’s going to feel like such a lonely, awful, frightening place to live — so near yet *so* far from what you truly need. You have, quite possibly, been through such utterly terrifying and traumatic experiences whilst dealing with your journey. I lived in London with all kinds of available people in several hospitals around me — and yet I STILL could not get the treatment I needed for the (many, many!) things that have and are wrong with me, so to not have ANYONE around in the medical practices around you, that is the most scary, almost more than than anything. It doesn’t matter whether or not it’s available, when you’re not being given it, you’re having to watch your life disintegrate around your ears, and not being able to do a thing — not a goddamned thing — to help yourself, because no one told you how. I did ALL the wrong things with mine… If there was a checklist of all the thing that were bad for my condition, I did them all, because I thought I was helping myself. Turns out, they all were the worst things I could have done. Unfortunately, I found out too late. Far too late.


I have Fibromyalgia and Hemiplegic Migraine, which have somehow amalgamated into some weird-ass crap that doens’t even have a name… something doctors can’t seem to understand or treat, that comes with horrific pain that can only be barely dulled with fairly high doses of Oramorph and Tramadol. My PTSD (now) comes from hospitalisation for a severe blood and bowel infection, and the utter shock and grief of having lost my hard-won “normal” life in London and my pretty amazing IT Career in one fell swoop from this “Fibromyalgia hybrid” (or “Fibroplegia” as I’ve come to call it) that I’ve ended up with (which has also made me almost completely numb and partially paralysed from the chest down), and the fact it took over 2 years to get an initial diagnoses and then a full 5 years to get any treatment at all for it — and by then it was too late, the damage was done and I was wheelchair dependent with no ability to use my legs.

The same thing happened as a child suffering from… something. They called it “Depression” and left it at that, filling me (as a child of 12 and then for many years later) with Prozac and whatever other medication they felt like. Precisely 20 years later, I finally get the diagnosis that really explained it all — “Autism/Asperger Syndrome”. Despite being under them mental health system in so many different ways for most of my life, they ALL somehow missed this, and my miserable life kept getting worse and worse, causing a lot of VERY bad things to happen to me, and I ended up with severe PTSD and suicidal and anorexic/bulimic because of it for over a decade. Unbelievably amazing….

Both times, *despite* bring in the middle of access to treatment, they still refused to give me any. Until now. In that sense, I absolutely do understand how it is to ask and ask for help and nobody listens or understands the severity of your health condition(s). I certainly may as well have had nobody there…

The harrowing [emotional] pain, the physical pain, the anguish, the despair, the panic, the desolation, the desperation, feeling like absolutely NOBODY understands, the loneliness, the isolation (whether or not there are people around you), and also, finally, that hollow and numb-feeling of depression that eats away your insides that causes even more anxiety and panic, making the PTSD flare and get even worse.

It spirals out of control and it’s all just like trying to outrun an avalanche … no matter how hard you try, you’re going to get buried and suffocated with it.


I’ve written a lot, and I’m sorry about that… However, like I said above, it’s hard when it seems like nobody understands, so I thought perhaps that I could prove that I probably really do…?

I hope that I have. Because all those feelings that were described is pretty much part and parcel of all chronic illness, and most feel them — but, of course, we’re not allowed to talk about them outwardly, so there’s nowhere to turn and nowhere to go to discuss it, those feelings, or how very VERY white-hot terrified and desperate you really feel inside.

Keep talking, keep reaching out — to doctors, to people here, online, to any people in your life who could/might/do support you. It’s not anywhere near easy to even begin to cope with the first part of dealing with lifelong Chronic Illness/Pain/Conditions.

The first step is a little like AA — you have to accept they are part of your life but you will love yourself anyway. Remember that you’re a person WITH a conditions/illness, and NOT an illness with a body/host.

Remember that you’re worthy, you matter, you’re a person, and YOU ARE YOU — and having an illness/condition doesn’t stop that from being true.

The next is to put into your mind to not being a “Victim” of any kind to your condition/illness — not having access to treatment or a clinician/GP is going to make you possibly also feel like a victim of circumstance, of the Post Code Lottery; but it still doesn’t mean you have to FEEL like one… It sounds so trite, I really do know. But you *should / hopefully might, eventually* feel entitled and rightful indignation that no one is helping you, that no one is taking you as a person that matters and deserves to have their space and be heard, and helped.

I don’t believe anyone should go through these things alone. It’s not right, and everyone has a right to be heard and helped, in whatever way possible. I hope you feel I have heard you?

Keep being strong, keep having courage, and keep up the [terrifying, seemingly impossible] good fight xx xx xx.



Five Stages of Misery…

Five Stages of Grief In Chronic Illness…?


It seems logical to go through it when you have a chronic illness… Grief is loss. With long-term chronic illness, you lose a lot, if not all, of your former life. You are thrown into a new one… one you didn’t ask for. One that is difficult, painful, traumatising, miserable… one where everything you once knew is no longer there. It’s all gone. Maybe even people have gone.

One day you were living your normal life, then one day – poof – it’s all gone. Everything is turned on its head. Upside down. Your world has imploded. Nothing will ever be the same again. Maybe you’re not dead, but it’s the death of your life. Grieving is surely inevitable… no?

Perhaps you get there – to Acceptance – quicker if you know what it is? Why this is happening.

It is difficult to accept an illness that remains undiagnosed and you don’t have a name. There is nothing to accept. There’s no answer.

So, you never get to that last stage. Not until you have something to accept.


Kübler-Ross Model:

  1. Anger
  2. Denial
  3. Bargaining
  4. Depression
  5. Acceptance


I feel three out of the five, oftentimes all at once: Anger, Depression, and Denial. They’re strong things to go through. I’m also really sure that the Aspergers in my brain is clouding everything more than normal. I have no idea what someone without it experiences – we’re all different – but being emotionally-incompetant cannot help one jot.

Let GoFibromyalgia, and other chronic pain, tends to come with a lot of emotional side effects, and the neuropathic pills adds to that. “Fibro Fog” turns up in patients with Fibromyalgia, then one of the more common symptoms of Pregabalin, at least, is various kinds of memory impairments.

I imagine the “Fibro Fog” turns up because dealing with so much pain is too much for the brain and mind to cope with, so it shuts down. It’s a fuse box with a switch that gets flicked – you can’t turn off one thing on its own; the brain has an “all or nothing” psychological reaction to such things as trauma… and that much pain is trauma. So it shuts down everything in the head, and “Fibo Fog” turns up, leaving the mind incapable of functioning.

Add Aspergers to that – where, basically, the mind is all you have to manage life and the world – and you have a volcano of confusion and frustration to contend with. I deal with things through my mind; I have no proper emotion, and what I do have doesn’t make sense and scares me. Makes me act out. Turns me into a terrified six-year-old child again. With every meltdown, the world stops, my brain disintegrates, and everything falls apart into a horrific nightmare that I can’t seem to wake up from… at least on my own.


Moving On?

My EQ is through the floor and somewhere past the centre of the earth. I don’t know how to cope with it – those three things. I don’t know if that is what I really feel either. I know I’m scared. Terrified. I now grieve for the things that have gone – I deeply miss everything that I’ve lost. ASD doesn’t allow much room for being able to deal with changes in any way. Taking everything away from someone like that is never going to end well… Usually in meltdowns. Which is what happened. Is happening. What keeps happening.

Tests In LifeIt’s been a year and a half, and I still can’t adjust to it. I have no answers. No help. I’ve received no therapy. The only medical intervention has been an MRI scan focused only on one small section of my spine. No other diagnostics has been carried out, unless you count some blood tests about a year and a half ago to try and rule out rheumatism.

It’s no wonder I’m stuck circling three of the Five Stages.

Answers are important. Knowing what’s wrong is important. It might not stop anyone going through the stages, but it probably helps you go through them faster. Acceptance is important to reach. I want to get there… but I have no idea how, especially since I have no clue as to what I am accepting.

What is it that’s making me this way? Can it be treated? Can it be cured? Is it long-term manageable? Will I always be unable to walk and need a wheelchair – or will I get better? Or at least be able to walk a little, even with a cane – maybe with the dog again? Can I do anything to make it better? Am I doing something wrong, that’s making it worse?  Something is making it worse… Unless it’s just progressing to whatever horrible conclusion it’s going to…

Just… what is it? What is making me like this? I need answers… I need to accept this.


Circles In My Mind…

So I keep circling. I have nowhere else to go. I’m not doing the Bargaining thing… it’s very pointless to try and compromise with an omnipotent being. So I’m stuck with the other three. One at a time, two maybe, and too often all of them all at once.

I can’t make sense of it. It’s all a jumble, everything all mixed up. Circling and spinning and jumbling. Kinda the reason why I asked for therapy over a year ago… but nothing turned up. After a year and a half, there’s nothing. I have no answers; I have no closure. Not even a real diagnosis. Not even my GP accepts the “Fibromyalgia” right now, because it’s a “diagnosis of elimination” and, frankly, nothing has been eliminated except a slipped disc. Sort of. Not even MRIs catch those sometimes. As a diagnosis of elimination goes, that kinda sucks. The Pain Clinic’s attempt at “eliminating everything” kinda stopped at one MRI and poking me once in the spine nine months before I saw them again. Somehow, I don’t think that completely qualifies.

I’m lucky; I have a GP that wants real answers and cares that I get better. Or at least have answers. He’s a good doctor.  I don’t expect to have a different diagnosis, but I want to know it’s definitely that. Not anything else. That everything else really has been eliminated. I suppose no one wants to have the wrong diagnosis, to have the wrong treatment – or worse,  no treatment.

I already went through that once with the depression/Asperger thing. I’m not willing to accept the first thing someone says.

 But until I do get something that is as concrete as possible, I really don’t know how I’m going to get to Acceptance anytime soon, or before… But somehow, I really want to try.


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