Tag Archives: pain relief

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.

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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.

💖💖💖💜💜💜

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New Accessories…

So, I got a catheter. It’s been three days so far – well, two and a half really – it was put late Monday afternoon and its technically 4:30am Thursday morning. The struggle to get to and from the bathroom was getting ridiculous, and the final straw was when I passed out for six hours straight in there when I tried to go, last week – then ending up with a complete memory block for the entire day: All I know about it s whatever I have been told.

My mother called up the next day and told them it couldn’t wait any longer, so they put me on the list for this past Monday.

It was scary, and uncomfortable…  but ironically, the worst bit was having the numbing gel put on – my paraesthesia did not like that at all… The procedure itself was over with before I realised – and I suspect it would be easier to have it without the Lidocaine. The procedure must be done every three months, so the best way needs to be figured out, if I must endure it four times per year.

It’s more than worth it, however. Already, there is a difference with nausea and bloating pain levels, other pain levels, and I’ve been able to play games and physically relax a little because the agony and exhaustion of going to the bathroom has been eliminated. I’ve not had half as much alcohol because there’s less paraesthesia pain due to less movement and exhaustion. After being quite badly dehydrated for years, forced into ignoring thirst and almost never drinking, puffy with water retention and with very dry and cracked lips, I’ve been drinking all the juice and water I can, and taking holistic water retention tablets, which are great and work a treat (and arguably too well, since I have to drain the bag an awful lot!). I feel amazingly better, lighter (like someone took away some of the cement living inside me) and I no longer feel bloated and pregnant with quadruplets. I can even straighten my back a little again.

Turns out long-term dehydration and water-retention isn’t very good for you at all…

Also – well, later on today, I suppose – I’ll be receiving a new Hypnos mattress (the same as they have in the Premier Inn rooms that have been helping deal with a lot of my pain), which will hopefully allow me to bring my pain levels down enough to make it more manageable (i.e. under 10) and thus allow me to take a break from the rather icky grape juice and Courvoisier. I hope it might help with the Fatigue, too, even if its just a little. It should be coming sometime between 11am and 3pm, and the room has to be organised so the mattress can get in (it’s pretty big).

I would like to hope it’s the advent of starting to regain some control over this, even for a short while. Historically, that just never happens – it all goes horribly wrong right after… so, I’m just going to just have to see how this one plays
out…

I Need Coffee


 


One Small Step…

Well, I never believed it was possible that there was medication out there that would actually work for me. After trawling through what seems like the entire BNF for something that will work, it’s pretty unbelievable that it seems like I finally may have found something that actually does.

change your attitudeI was given Pregabalin for neuropathic pain. I admit I was skeptical – nothing has ever worked and I am hypersensitive to opiates, so I have never been offered anything that gave me any pain relief without making me extremely ill from side-effects. I never thought this new one might actually do anything. Instead, it’s actually working. Slowly – but it’s still working.

After a while of it building up in my system, raising the levels every few weeks, and with only fairly mild side effects, it seemed like one day it just suddenly started to work. I managed to a few things on my own without too much difficulty. They were little things the average person would take for granted, but to me they were huge. It wasn’t like it completely magically cured me – far from it. But the mind-blowing sharp pain that constantly kept me plaguing me and leaving me in tears, unable to even move and quite literally sometimes almost unable to breathe, was eased. Not gone, but significantly eased.

After getting my hot water dispenser and clever choice of easy food, I celebrated when I was able to get up on my own (slowly, but not too slowly this time!), walk to the kitchen without my stick (slowly, but surely!), sit on my bar stool chair, and make my own coffee and sandwiches and bring them in. All without Doggy’s help! Doggy lay on his pillow in the kitchen and offered moral support in exchange for some ham. Then he offered more moral support when I ate my sandwich by helping me eat it. He’s very generous like that…

Let GoRight now, I can actually feel the pills as they get into my system and start working, which is nice (and may be entirely my imagination too…). In the morning before I take them I’m still in almost the same pain as I was before, but there is some minuscule difference now even then – it’s not quite as sharp and mind-blowing as before, which is hopefully showing a step in the right direction. Once I take them, within about two hours there starts to be a difference in how and what I can move. My fingers become less agonising and start moving better. They’re not stiff with sharp pain and aching raging through them. As the pills build up, I can – to a certain extent – type, use a mouse, an Xbox controller. I can’t really move for another hour or two, but then I can get up (very carefully!) without Doggy’s help, make some hot sweet tea or coffee, even make a basic sandwich, without too much difficulty. I still need Doggy’s moral support though, because it is still difficult, even if it’s not mind-numbingly agonising. There’s something very unfortunate about being so happy to finally being able to do such little things, or even make it to the bathroom on your own without any help, but it’s so amazingly freeing when that option is given back to you. It’s awful you couldn’t do it in the first place, but it’s really great when you can do it again, even if it’s not all the time.

The pain is still there… but it’s numbed a little. It’s masking it, making it feel extremely uncomfortable, rather than having that sharp, searing pain. Like having a local anaesthetic for something rather invasive… it feels a bit like that. It probably also helps that Pregabalin is a well-known GAD treatment. I think its GAD side works well on me too, which probably helps an awful lot too. It’s extremely stressful, distressing, and anxiety-inducing to be incapacitated by excruciating pain for so long. It’s incredible when even a small amount of your mobility and ability is returned to you by just dulling the pain just a little. So you can breathe. Think. Have a small break.

The pain relief the pills give me don’t last too long, and it’s obviously not perfect. It’s not the full dose, so I still hope that I may get another little step forward when I finally have them raised to the full dose.

I can’t run about, ride horses, do yoga, walk unaided and go out without Doggy (or a wheelchair – yet…?). And perhaps I never will. But if I can do some basic things like look after myself in the house without being afraid of being left alone, that’s a huge deal, and I’ll accept that. Independence is the most important thing when you have it taken away. Recovering even some of it is a huge goal and feels great if or when you get that some of it back. You’ll take anything, and be grateful for it. It would be great to be able to walk a little outside on my own, with my stick and have doggy walk with me, rather than having to pull me. But we manage OK the way we are, and it’s good for Doggy to have a job.

I How to Flystill can’t play games for long hours anymore, type a lot, or make some food without a lot of pain – but that pain is still numbed in comparison to what it was before. And at least I can do those things a little, and the pain I have is pretty bearable in the most part, as long as I take it easy. Right now I take what I can and celebrate every little thing I can do. I’ve had to learn to think differently, stop being so hard on myself, deal with things as they are without question and try to be OK with it. It’s not easy, but I start by celebrating what little things I can do, and try to troubleshoot the things that I can’t. Try to work my way around them. It’s difficult, and learning to accept is a hard lesson to be learned. I have to accept my body for what it is, and what it isn’t, and I shouldn’t expect anything else. We don’t live in a world, a society, that thinks like that though… So it’s hard to do so. But I think I’m getting there – quite slowly, but I am.

Some days are lighter than others. Some days are downright dark. But the little things matter and so I try to remember that.

These things may be one small step for man, but they’re a giant leap for a Lel – so I’ll keep going.

 


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