Tag Archives: asthma

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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No Such Thing As A Good Night’s Sleep…

Another long night. Yesterday I was up until around 6am because of an asthma attack. Today, it’s all back to normal and I’m up because of the pain instead. Nothing new, in these days of warmish and wet… soggy… damp.

Dry and cold I can pretty much cope with, but when it’s like this, it’s just another kind of hell to live in. There is no settling it, nothing that can take the pain away. I try, but there comes a time when it’s going too far, and you just can’t take any more – or any more pain killing things – it’s put up and shut up time.

These days, I count going to sleep before 6am a “good night”. 3am and before is positively a miracle.

Anything to aid a good night’s sleep isn’t an option… Just like everything else, really, in times like this.

Going out is not an option. If I force the issue, it exhausts me for days, if not weeks, and I daren’t do too much… which is no more than a short visit to a supermarket or a couple of shops in town – with the help of one or more people. I don’t get to drive, or cook, wash my hair (I’ve been forced to be a huge fan of Batiste), or take a proper shower (so… bed baths… at my age…). Making it to the bathroom on two legs is considered a luxury (crawling is often a used option). I don’t get to see downstairs. I don’t talk to people because it takes up too much energy – literally breathing is, frankly, taking up all my effort on these kinds of days/weeks/months. I don’t even get to play my PC games when I want or need to. I have courses that I should be taking. I have programming projects I wanted to undertake. I had new (IT) languages to learn. New games to play. Books to read. Audibles to listen to. I don’t actually get to do much of anything, really.

This weather takes all of that away. Fibromyalgia takes all that away.

This keeps me a prisoner in my own house. My own room. My own body. What is worse, is that everything that makes me feel better, that cheers me up, is no longer an option… so trying not to give into all the miserable is extremely difficult. Fighting depression is hard enough when your own illness is co-conspiring against you with it… it doesn’t help when all your favourite things are taken away as well.

So… I feel depressed. Despondent, is probably a better word. Rather hopeless and helpless… and pathetic. I alost doubt feeling this exhausted on top of the usually overwhelming fatigue helps. I try not to, but it’s so damned difficult to even try, let alone succeed. It’s hard not to think about what life was life before, or feel entirely disheartened by how everything turned out, how you were descended into your own private hell no one else can ever undertand unless they have the immense misfortune of knowing what having a chronic illness is like. Something you would never wish on even the most evilest of evil in your entire imagination, it’s so horrible.

So instead of good times, I get to writhe in agony, trying not to cry (and not because I have dignity… oh, no, that vanished a while back… but because it hurts to damned much to), whilst all the time gritting my teeth (probably quite literally, too) and just trying to survive every moment it just hurts so damned much

Thus is the life of a #spoonie

Yey.

 


Medication Mistakes

Sometimes I wonder if I am cursed. Whenever I hope I have finally hit rock bottom in my life, that I have fallen so far into the abyss that I have come to the end of that endless black hole, whatever I think I’ve hit gives way and I continue to fall again. Sometimes I feel I am walking forever through the fires of hell… through a crucible I do not understand. Where there are actually several of them, or one long one, I am not sure of. Sometimes it feels like both at once. All I know is that it never ends.

There’s many reasons for my melancholy… my depression. Unfortunately, I strongly believe one of them is chemically-induced. I should have taken the information on the paper inside the medication box more seriously. But I did not.

I was given Prednisolone for severe asthma difficulties, a typical complication of a rather bad upper-respiratory infection. I was given it after a nebuliser did almost nothing to ease my constant and searingly painful coughing as a result of inflammation in my lungs. It’s a normal thing to do, and I’ve been given it several times before. I had no real reason to believe anything untoward would occur.

I read it in the PILs (Patient Information Leaflet) paper, but I’d had this medication before and thought nothing more of it. I disregarded my own sensitivity to medications, and my current situation. This error has made things that are already pretty bad so much worse.

The warnings are made clear – I wish I would have heeded it:

 

Prednisolone should be used with caution in:
… those who have ever had severe depression or manic depression (this includes having had depression before whilst taking prednisolone or a similar medicine or a member of your close family has had these illnesses)

 

Mental health problems such as feeling depressed (including thinking about suicide), feeling high (mania) or moods that go up and down, feeling anxious, difficulty sleeping, difficulty thinking, feeling confused and losing your memory, feeling, seeing or hearing things which do not exist, having strange or frightening thoughts, changing how you act or having feelings of being alone

 

Since taking the Predisolone, I have suffered such severe anxiety for many, many days. I couldn’t sleep from it, and once was up for over 60 hours straight – nearly 3 days of no sleep. I broke it with a short nap one afternoon, once my anxiety levels started to diminish slightly and my body could take no more. Two days before then, I stayed up all night, and the night after, barely slept at all, only for perhaps 3 or 4 hours between 6 and 9am.

Once in a form of stupor, not real sleep, I would not wake, but be confused and frightened when someone came to give me medication in the morning, trying to “wake” me to do so, triggering (I think) some kind of severe panic attack of extreme confusion  and anxiety. Eventually I would come round, maybe an hour or two later, with little memory of anything except being afraid and with a horrible, searing headache. As well as this, I had continuous meltdowns due to the excessive anxiety I was experiencing (and ASD gives me enough of that as it is, I do not need any more).

I had 5 days’ worth of medication, but the effects have continued after they have finished, with severe depression and suicidal ideation, even an attempt yesterday – but luckily someone was there to stop me doing anything drastic. The meds finished three days ago, and the effects have barely diminished. The only difference now is that I can sleep a little.

Right now, as I write, I feel a terrible, awful and overwhelming feeling of dread, hopelessness, anxiety, pointlessness, nausea, and panic. I want to just hide in a dark corner and cry hysterically. I want the world to go away. I genuinely want to die – for it to all end and go away. I have enough to contend with, I am nothing but a burden, and so see no good reason I should continue to exist to be a pointless burden, and to endure this suffering. I am so exhausted I cannot think. I am in so much constant pain. I just want it to end. I really, really do.

But it’s all… “fake“. Real, but chemically-induced. It’s a side-effect. It is completely and absolutely traumatising, because I know I inadvertently cause it, because I did not heed the warnings I clearly saw and read before I took them. I should have taken them seriously, but I dismissed them. Now I am paying the price, and I don’t know when it is going to end.

I feel I suffer enough – I am not that person who can deal with loads of stuff with a shrug and a smile, or even deal with them at all in any way. The ASD and fibromyalgia are both extremely difficult to live with, particularly since they contraindicate each other quite severely. To have this complication now with the side effects of Predisolone… it’s now too much to bare. Too much to carry. It is breaking me apart… what is left of me, anyway.

To make it all the worse – the damn stuff didn’t even really help. My asthma is still bad. I am obviously not going back for any more. I shall just wait and bide my time and allow my body to heal on its own, allow the inhalers I have to do their job. I  have no other choice, because I’m clearly not about to have any more of those things to help.

The pain from the asthma and coughing is horrible. On top of the pain I already endure, it is absolutely too much. What makes it all the worse, and more difficult, is that the coughing, the extra pain, the headaches it causes, and the exhaustion I have (I still do not sleep properly, and have maybe 4 hours’ sleep a night, which is nowhere near enough) results in my not being able to play my games – my absolute lifeline in everything.  Without them, I do not have my “comfort blanket” nor the mind-clearing, mind-settling properties it has for me. I feel as I am left abandoned in the dark without a light and no way of seeing my way ahead.

The stress I now feel, the horrible feelings I have, the pain I want to cry… it is effectively mostly fake. Of course, there are the base-feelings, but they are never this strong so constantly. They are horrible to live with and remind me of my childhood when feeling quite like this was normal… and justified. But although things are bad now, I have not had such horrible feelings like this before – as bad as they’ve been, they’ve never been this bad.

I wish I had never taken that medication. It was not worth it… Far from worth it – especially since they have barely helped. Three days after I finished taking them, I still have asthma coughing, and can barely move around without a coughing fit and asthma attack. Even sitting down, I still cough from it. It burns, sears, in my chest, then the exgreme coughing fits themselves create pain in my head,  neck, hips, back, ribs, shoulders… all those muscles (etc.), which are already severely painful, are being ripped apart.

The Predisolone did not stop it. So when it gives me such horrible, traumatising, overwhelming depression, anxiety, dread, a desire to self-destruct and annihilate my existence… I cannot deal with it. I am afraid of what I might try and do. I keep trying to remind myself it is a passing phase brought on by man-made chemicals that are not good for me. It’s is not quite how I really feel – that it has greatly exacerbated the way I really feel, and that I need to ride it out.

But riding it out is torturous. I can’t even distract myself with what I love most – my computer, games, reading. I can do none of these things. I am reduced to a highly distraught, shaking, fearing exhausted ball who can only stare at a screen. Hoping the noise from it will drown out the horrible things in my head and my heart. I want to sleep. I want to cry. I want to leave this world. I want this all to stop.

My history should have been taken into account, and the prescriber should have been aware – and made me aware – of the dangers, given my history. I have a 23 year history with complex mental health issues… it should have been taken under consideration. No one said anything – but I have a habit of reading the PILs just in case for every medication I’m not completely familiar with. I’m glad I did this time, or this would be even scarier than it already is. I imagine how I would be if I wasn’t aware it was the result of side effects from medication. I may have already succeeded in doing something bad. Or worse.

Luckily, I read the PILs and made myself aware of it. It just goes to show how important it is to read what the pharmacies package with their medications. It’s important. And you can’t rely on your doctor or prescriber to make sure they’re giving you something suitable – time constraints and habit ensures they give out things without really thinking it through or checking with your notes, history, or even yourself when it comes to contra-indications.

Always read the PILs, not just the outside labels. Then take them seriously. The paper isn’t just there for decoration. I’m really glad I read it… but I’m really regretful that I did not heed their warnings.

 


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