Tag Archives: support

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.

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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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Change and Adapt… Reluctantly Speaking

Changes are not good for me. Changes are even worse because I hate them. I don’t know what to do with them and they scare me. After almost quite literally overnight having my life as I always knew it taken away from me, I have not adapted well. Worse – I have now had to think about starting to adapt my environment to suite me, and that is not easy. Or cheap. Ten months ago, on Halloween 2013, I began this journey of hell. Somehow, coming down with pneumonia, move house, go to work, and having to single-handedly look after our new rescue dog who had just been brutally attacked and was terrified of everything, just broke whatever that was left of my body (and it was already extremely frayed). I’m not technically disabled (and I do not like that word, anyhow) – but I have been certainly left unable to do a lot of things without help. A lot of help.

I had my longterm best friend, who I live with, home on sabbatical for months. During that time she became my accidental carer, my helper, my little guardian angel. My SBT-mix, my lovely puppy dog, Soul also became my accidental helper. As my health deteriorated, my mental health deteriorated, and the pain kept on increasing, and if it wasn’t for these two I don’t know how I would have managed to get through the last nine months since this started. However, things have changed again. My friend – who is also my companion and helper – has now had to return to work… Sabbaticals aren’t forever. On the positive side, she returned to a closer office to home so she leaves later and returns earlier than before. On the negative side, I’m left to fend for myself. And I’m rather terrified about it, and about the fact I must now do it every single day. The most basic things are exhausting and daunting. Making food is reduced to making sandwiches from pre-made sandwich fillers or things like sliced ham. Making coffee is extremely difficult, and I can only do it once because after I’m exhausted and in pain. Having had someone in the house as I get worse has been a blessing – but now I’m on my own, I have no other option than to figure out how I’m going to manage this situation.

I’ve already tried to start. I’ve ordered new gear for the dog so he can physically help me more – he’s a strong and enthusiastic dog who enjoys being physically challenged (… well, when he’s not busy being happily asleep!). I’m going to get myself a cute little hot water dispenser so I can make my own coffee, I’ve already got myself a high bar stool chair thing for the kitchen, so I don’t have to try and stand when making stuff, and I even use it to bring the sandwich ingredients to the counter, so I don’t have to try to carry them (I can’t lift much of anything, and holding stuff is difficult enough too). I’ve worked out my “independent” food – like the sandwich fillers, picnic food that I can fetch from the fridge (cocktail sausages, little falafels, ready-cooked chicken, etc), pre-prepared salad, humus dip… I can eat all this stuff without too much bother. If it’s too much bother, it causes too much pain, and then I can’t even eat, so having figured this out is a bit of a relief. At least now I know I won’t starve.

Souly The Helper DogThe other side of this is going outside without anyone but the dog. Both doggy and I need to go out and walk as much as I can, so we go anyway. He pulls me (and I mean really pulls me) so I can actually go out. I can’t really move my legs, so walking on my own is difficult enough in the house. Going out is not an option unless I have the dog. Have you ever been pulled by a really strong dog? You’ll probably know they’re perfectly capable of dragging you about – and that momentum is what gets my legs moving and allows me to walk. I trained Soul to pull me properly – he has his commands, does as he is told, and knows he’s not in front because he’s the boss: He knows very well he’s in front and pulling because it’s his job, and it’s a job he takes pretty seriously (until we stop – then he wants to cuddle and kiss everyone he comes across!). It’s difficult for him to drag me about – I’m very lucky the dog my friend accidentally brought home to us (he wasn’t planned – she saw him and just brought him back!) was a dog bred to work and able to pull – but he really gives it all he’s got, and even if we’re both having difficulty in getting home, he’ll dig even deeper and work even harder, going up a whole new extra gear. He even knows better than I do if I need to go home – he’s amazing! He works like he’s in a pulling contest for World’s Strongest Dog – and he just might win one of those on the first try after pulling me about for the last few months!

Going out with him gives me confidence. He helps me, makes me feel safe, and I know that anyone who might want to do anything to me will think twice when they see him. He’s 23kg of muscle, thanks to a good diet and pulling me about every day. They don’t know the only thing he’ll do is drown them in kisses, unless they try to actually hurt me. I know if I was genuinely attacked he would protect me, regardless of the fact he’s never been trained do so – that’s just instinct. We go wandering about, going on our routes, and we just trot around on our own. I cope by stuffing headphones in my ears and blocking the world out, and focusing only on Soul and whatever I am listening to. After about an hour and a half of dragging me about, doggy is really tired and is quite happy to sleep it off the rest of the day, unless I need him to help me.

Unfortunately, there comes a time when I must go out alone. This afternoon, I must go to the GP by myself for the first time since I got this ill. Since I’ve been unable to walk on my own (without Soul). I’ve had to book a cab to take me… The practice is only just down the road, and frankly I rather resent the fact I have to pay for someone to take me there. I am fighting with myself to not be angry, hurtful or hateful to myself about this. I feel like I should be able to do it, like I used to be able to do it. Even though I’ve always been overwhelmed by going outside – always been agoraphobic to some level or other – I’ve always been able to use tools and techniques to go places I’ve had to get to. But now, I am in so much pain, unstable on my legs, feeling so vulnerable, I don’t want to go anywhere on my own. This time I can’t even take Soul. It’s honestly going to be a lot of trouble just to get out the house and walk to the car when it comes.

I’m scared of going; it’s going to be hard – physically, emotionally, psychologically. I have learned a lot about myself in the last few months – more than I’ve learned in the last 30-odd years of being me before, so I’m trying to use that knowledge to help myself now, hoping it’s going to help me cope and not have a panic attack or meltdown. I’m so used to going out with Doggy or my friend that I have no idea how to cope with going out all by myself in this state. So, I did myself a favour and downloaded a new album that I wanted this morning that I know will help me feel more relaxed and focus my mind on something I love (the soundtrack to Mass Effect 2, to go with the Mass Effect 3 one I already have… I’m such a Gamer Girl Geek!), and I will also have my books to read in the waiting room on my iPad. I hope this will be enough for me to manage. Even getting some of the anxiety out by writing this has helped a little, allowing me to confront and analyse my feelings, and to be able to accept them and at least try to not fear the fear itself. I hope that if I just focus on the music I will be fine. I really hope I don’t have a panic attack… The last thing I need today is a meltdown from one.

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… I knew all this was coming one day… but not quite so soon. I’ve been slowly been getting progressively worse, and probably subconsciously taking more note of it that I probability thought I did, I probably did a lot of things that have probably helped it along over the years. However, I’ve enjoyed throwing myself into the physical activities that I used to love  and can no longer do. Horse riding (and falling off the horses) was probably the worst of them – but dancing, walking, singing, yoga… I became absolutely absorbed in each one, to the point that although I miss them, I know I pushed myself and completed enough of what I wanted to do with them that I’m not too disappointed about not being able to engage with them now. On the other hand, the normal things you take for granted. Even writing this has been very painful. My hands are aching a lot, in the top bones and in my fingers and thumbs, especially in my right hand. All this makes me feel afraid of going out there alone, of being at home on my own… I hope I’m going to get through it all in one piece.

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