Tag Archives: treatment

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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Incompatible Me

I’m beginning to wonder if I have two of the most annoyingly incompatible conditions possible… It turns out that apparently Fibromyalgia and Asperger Syndrome do not play well together… Or, perhaps depending on your viewpoint, they play together too well. All they seem to do is add to, and aggravate, each other’s symptoms – they have much of the same side effects and both get affected by much the same thing, and one usually will then set off the other. It’s complicated

This is not making my life any easier – and I think I can safely say that Fibro and AS are ridiculously incompatible to have at the same time if you actually want to do anything.

Fatigue is one of the worst – I get tired enough just by trying to be alive with Fibro (which my auto-correct constantly wants to change to “fibre”… and then leads to quite a different sentence when read back!)… but AS also makes certain things absolutely exhausting, namely all social situations (i.e. also just simply trying to be alive…).

Fatigue feels like it’s almost a condition in and of itself – it seems to have it’s own mind and behaviour, and it also needs to be acknowledged and treated itself – regardless of what is causing it. It feels like a mini-condition within a condition, and it causes enough problems all by itself, without even then taking into account the condition that’s causing it. After the pain itself, it’s the most difficult part of this to deal with.

It’s an unfortunate symptom of Fibro, since I get tired enough from things anyway, thanks to AS. A lot of things like going out, being outside, being with and around people (one or more others around me is very difficult to manage, and the more there are the harder it is), speaking to anyone (strangers, shopkeepers, receptionists, anyone on the phone, etc)… anything that effectively requires any outside and/or social interaction and communication… they all already exhaust me because they are so very difficult to manouvre. They are frightening and daunting, often overwhelming, and I usually find myself extremely tired after doing such things. Add to that the intense fatigue that comes with Fibro and I am now never anything but extremely exhausted and constantly drowsy.

It’s become rather worse since we temporarily added a couple of extra people to the household. Now there are four people and a dog in relatively small place (it’s not really built for sharers, more like a small, young family) for a few weeks, and it’s extremely difficult for me to manage. Juggling pain, social confusion, high anxiety, and a lack of experience for the right etiquette for this situation – including not really want to engage with so many people at once. I like them all, but it’s just too hard, too complicated, for me to handle. Just knowing they’re in the house is stressful enough, and because of all this, I am just so beyond exhausted I can’t even think.

The fact that can’t really sleep doesn’t help. As it turns out, Fibro screws with your sleep quality – and just to help, my AS causes enough constant anxiety to makes sleep barely more than a pipe-dream as it is. So now what little I do have is pretty useless.

life's poohWorking in keeping them both in check, and working to lessen anything that causes symptoms – or at least strong symptoms – is the only thing I can do to try and manage. It’s not like anyone from the outside (NHS, social care, etc) is coming in to help me – the only treatment I’m getting for anything is possible hydrotherapy.

It feels like a gauntlet to be run. Another one. I’ve already been through one – one that lasted nearly 2 decades… so I think I can run this one too. It’s only been 2 years, so it’s hardly comparable. However, it’s not really too clever to have two such completely incompatible conditions that just aggravate each other, making them more intense than either on their own would ever be. It’s also hard going it alone, and without outside help, I’m not sure how well I’m going to do in the long-term… but at least it’s not something worse, or anything life-threatening or life-shortening. It’s life-changing, but that’s still something I can live with.

And I need to remember that.

 

 


Final Answer

I finally had an appointment with Rheumatology. And with maybe just a half a dozen questions the doctor told me right away what I had was undoubtedly Fibromyalgia. Without question.

Do Not Give Up... BeginningThe definitiveness of his diagnosis with a few questions and barely a glance at me, and poking me gently in a couple of the known “key” areas of pain for fibro, was quite a revelation. Especially after waiting for so long to get one. Then just like that, after nearly two years, in about three minutes tells me without a doubt in his mind that it’s Fibromyalgia. Where was he about 18 months ago…? He was a straight-talking quite typical Irish doctor (I think they’re my favourites – they just tell you everything as it is without dancing or mollycoddling or being confusing) – the plain-and-simple “oh, it’s definitely fibromyalgia”, said as if it was a clear as day and anyone should have seen it, was just great to hear after so much dancing about.

I even had a list of everything I had wanted to tell him about (don’t they all ask for your symptoms?)… but then he just went rattled them off for me, and I just had to say yes to them all. Pretty easy.

The doctor was quite taken aback by the severity of my situation and the amount of pain I was in (…way to go for making me feel really sorry for myself!). He didn’t like that I was “young” (he was middle-aged-ish, so it’s all relative…!), having to use a wheelchair to get about, and almost entirely dependent on other people. His first recommendation was yoga – and I told him that I had spent at least 10 years practicing before all this. I also told him things were easier with hot water and the bath helped, but I was scared of water. He responded with that it was a shame about that as he would recommend hydrotherapy, as I was already experiencing some dystrophy – because of the severity of the pain I can hardly move my legs from it, and ergo I can’t move them much anymore at all, making the pain of walking and standing worse. The hydrotherapy would work around this: The warmth of the water would make it easier for me to move about, and the water itself would buoy me and take my weight for me (not to mention moving in water is harder to do as it presses against you, making you work harder).

I’m willing to do any try anything to help, even if it’s a little bit – so he popped next door to the hydrotherapy team to have a quick discussion about whether they could help me. He came back pleased that they were more than confident that they would, so he set me up with a hydrotherapy referral with the physio department.

Apparently they teach you various ways of exercising in the warm water to maintain muscle strength with less pain. Hopefully with this I can at least walk again a little, and control the pain whilst doing so just by being stronger. Then after the block of however long it is you then just find a warm pool somewhere and then maintain the treatment from there on. I don’t like water – well, actually I’m pretty damn terrified of it – but I’ll try pretty much anything, within reason. Hopefully I’ll be able to walk some again, and just need the chair for long distance stuff. It’s worth tolerating and controlling the fear (they give you armbands, right…?) if it will help. Fear will not be the thing preventing me from getting better, that’s for sure. If I can get stronger again, I’ll also be able to sing again. Maybe focus more on being productive instead of just being in pain. Anything is better than what I have now, which is so very little.

If I can even get it to a 50/50 situation, it will be so much better than this. If I can walk a small amount with some kind of walking aid, be able to go into the GP practice on my own from a cab, maybe even to the local shop on the corner, or just walk for a few minutes around the supermarket for a few things.

After getting my new, light wheelchair and being able to learn to push myself about, my arms and shoulders have become stronger – I now can push myself around quite a bit fairly effectively on good surfaces (…just don’t get me started about the 6-inch high tree roots pushing out of the tar-mac paving every 30 yards on the pavements here), and I did pretty well at the Lea Valley Park trail by Walthem Abbey (it was fairly flat and tar-macked). All I need now for it is a cup-holder and I’m good to go far in it, powering me with coffee the as I go!

Now I have something to go on, something to work with. There maybe no “cure” or known treatment that really absolutely helps, but there are some things to try that could work. It’s a personal journey for each sufferer, where you just try things and see what works. Every person is different, and all you can do is try and treat symptoms. I’m lucky the Pregabalin works for me, but there must be other things – hopefully the hydrotherapy will help.

The doctor also told me that it definitely has a wider influence on you than just pain – something that was unexpected. I hadn’t realised before that sufferers of fibromyalgia can’t sleep properly; they never go into that deep sleep (I’ve never slept well, but I’ve never been quite this bad before). I certainly need to do a lot more reading up as to what more this affects, instead of just focusing on the pain. It does not help that quite a few of the fibro symptoms are very similar to some of the AS problems I have, and they’re probably exacerbating them extensively. I need to try and detangle them from each other and work on finding a way of dealing with them.

But… At least now I have answers for it all. I’ve got stuff to work with now and hopefully it’ll get at least a little better from here on out. Something is also better than nothing, and information is the best something at all because then you know what you’re dealing with and take some control back for yourself.

 

 

Start Over

 


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