Tag Archives: essential oils

Loss of Legs… (Temp)

It’s reportedly the best weather of the year, running between avarages of over 25º in the north, to well over 30º in London and the south. It’s gorgeous outside here.

But I’m stuck indoors, curtains closed, because I’m, well, rather broken.

My pregnant sister is out with my father and my own dog, walking in the gorgeous forest around here. Unfortunately, I can’t even make it to the bathroom without a lot of help from my mother… which is great when you’re well over the age of 30… and I struggled a lot even with my three-wheeled helper up here.

Waiting for this chair is becomming borderline traumatic. It’s beautiful warm weather. I can’t go anywhere, do anything, see anyone. I can’t go to the doctor, take my dog for his vet checkup, go out in the sun, can’t see friends, get my own groceries or go shopping, can’t go to the cinema to see a movie I’ve been waiting almost a year to see…

Best of all, it means I can’t go anywhere even within the house now, either. Temporarily, at least (I hope).

Because of circumstances, I’ve ended up with (at my best guess, anyway) neuropathic inflammation in my lower back, leading my legs to become completely useless. Simply put, it’s like they’re paralysed because the information to and from my brain is not getting through, so it can’t understand I’m trying to get them to move.

I liken it to perhaps trying to yell to someone who’s far away – and being too far away to hear you. Or maybe think of a cell phone connection, where it’s one bar but it goes off and on, more off than on, and then it cuts out, so the other person can no longer hear you anymore.

The strange thing is, some of it is on way-way traffic – I can feel some “sensation” (though it feels weird) on contact, but no pain and what I feel is… “distorted“. It’s so odd I don’t even know how to describe it. Unfortunately, the upshot is that I can’t get any information down to my legs. So dead they be for now. Offline. Yey.

In all hope, the inflammation will eventually die down and they’ll come back online again. Hopefully without damage or long-term issues. But for the now, until that happens, I honestly don’t know what I’m going to do.

I have no idea how to manage things without the ability to walk. So far today I have struggled immensely, going to the bathroom has been a nightmare, and after trying to go downstairs for a while, I almost diddn’t make it back upstairs because I could not manage to get up off the floor and find a way to the stairlift. Those who have to do this permenantly are insanely brave and clever, but they do have wheelchairs that don’t try to kill them with pain.

I have to admit I’m a little scared… Certainly concerned about this evening and tomorrow. Even if it comes back, I’ll now fear this could happen again. It would be my worst nightmare… but then with a tiny taster of it, I also realise it really wouldn’t be the end of the world, not with the right tools to deal with it. It changes everything, but it doesn’t utterly destroy it. Other things achieve that far more than just not being able to use your legs. But I never ever want it, and I am desperate to make sure this flareup doesn’t remain.

My mum, who’s becoming quite proficient in making essential oil recipes to use for massage oil to help with all my various symptoms, is working on trying to get a strong anti-inflammatory concoction to help fix it, and get things running again. I hope it works, even if its just a little. Right now, it would be closing on impossible to manage tomorrow, here on my own – or at the very least just with my dad. It took two of them to help me today to get around.

 

Essential Oils Recipe (Anti-Inflammatory)

Tumeric
Ginger
Lavender
Roman Chamomile
Marjoram
Rosemary
Clary Sage

…and Juniper

We’ll see whether it works… I’ll hope that something happens.

 


Alone Without Precedent

The more I am in this situation, the more it eludes and confounds me. It doesn’t help that it thus far has no definitive name. What really doesn’t help is the psychological aspect.

I checked around the Internet… There seems to be really little on ASD/ Autism/ Asperger Syndrome with neurological or physical chronic illnesses. There seems to be no precedent, nothing out there from other people  who are or have been in a similar situation. There’s one or the other – but not both together.

I feel I am wondering out in the wilderness with no way of knowing which way to go, or where I am even going. There is so little help… Nothing but Waiting Lists, and then some. Lots and lots of them – Neurology, Occupational Therapy, Psychological Services… and then there’s more to come for diagnostics, physiotherapy, treatment, more appointments… A never-ending carousel of waiting. With no one to help in the meantime. Without a clue as to what might be wrong with you or why you’re suddenly like… this.

All I know is that it’s no longer Fibromyalgia. Last time I checked that required pain. Mine is all gone, replaced by horrible other things instead. No longer hyper-sensitive to cold, no longer in that pain I was in, no longer able to feel… well, almost anything. I’ve never hit my “funny bone” before and barely noticed. The dog can walk or bounce on me, chew [gently] on my arm and play with it. I don’t notice bumping into things, or people accidentally knocking into me, or things falling on me, or even touching my own arm or leg. I’ve been told there’s a terrible rash on my back and neck as a response to using oils – and I would be none the wiser if they hadn’t told me. I can’t feel it and it doesn’t even bother me. But when I touch it, it feels pretty rotten, I must admit…

img_0886Today my fingers went really numb… like someone had tied super-tight string at the bottom of each one; that feeling of the blood flow being cut off – and yet there was nothing on my hands at all. Not even gloves. I have also had a very hard time with extreme Fatigue (and I do presume I have a cold, to be honest), argued with gathering a Shard on Dragon Age: Inquisition, and my back and legs (especially my legs) have been quite “buzzing” and/or tingling (varying through the day). This morning I couldn’t even move or feel my own self to even try.

Right now I have to manage on the – rather genius and amazing – essential oil recipes for neuropathy and then for fatigue/brain focus, Devil’s Claw, Magnesium Oil (amazing), Neurozan vitamins, and coffee. Occasionally there’s minimal Co-Codramol (8mg/500mg) – almost always when I have a cold or infection – and Boots Botanics Ylang Ylang & Manderin “Aromatic Rollerball”. That’s on top of maxed-out Pregabalin pills. But without a definitive diagnosis, we’re all just pissing in the wind, guessing and hoping for the best.

I feel alone. Lonely. Because it really does seem I’m all by myself with this. Yes, peopleimg_9891 have neuropathic chronic illnesses, and yes, people have ASD. I am yet to find someone else out there who has experienced this and at least attempted to navigate this.

With the NHS in turmoil, and Social Care drastically underfunded, I’ve pretty much relegated myself to the Raggydoll pile. I just now wish to be the best I can be, especially psychologically. It’s a big ask, but it’s all I can focus on – and the only thing I can control now. There is just nothing left in my life I have any control over, and I have no idea. I am in the middle of it and I don’t understand any of this – so it’s hardly like you can expect anyone else to… But I do wish that at least I did. And this new numbness twist? That just hurts my head.

I am just lost, and I do not like that at all.


Neuropathic Esential Oil Recipe

After three years and four months of enduring terrible pain, this condition suddenly and inexplicably changed. It was slow, but it felt like happened overnight nevertheless… it was gradual and I didn’t notice the severity of this constant change until it became a complete “180”.

Suddenly, it seemed like out of the blue the intense chronic aching pain I had endured so long vanished – changing entirely instead into numbness and the worse electrical pain I’d ever felt… Intense. Sharp. Unbearable.

It was suddently like I had been covered in “magic cream” and then hooked up to the worse TENS machine ever made. I can barely feel anything much on my skin other than the vague pressure of contact (maybe like through a thick wetsuit or something… but it does remind me of how having the Magic Cream felt). My right leg went almost completely dead, dragged and didn’t respond. My right arm also became quite weak and unmovable. I had to do things with my left hand again – which isn’t easy! – and the intensity of the tingling, prickling, buzzing, burning, electric shocks, numb-like pins & needles, and the most extraordiarily awful spasms that were all absolutely unbearable. Quite frankly, I wanted that pain back. At least that was vaguely treatable.

My mother went looking for alternative options, given I needed something that would work better than “conventional” treatment. I’ve always responded better to naturopathy – so essential oils for this was probably the answer… And thankfully it was.

I have found the following essential oils had beneficial properties that helped with neuropathic pain. Certainly with mine. This has been tweaked a few times, getting better and better (for me), and the results have been extremely positive – all things considered.

With this combination, I have fewer symptoms, and they’re down to “bearable” now. My right leg moves a little and my right arm works better. The numbness that comes from keeping my hands up for any period of time is reduced – particularly withe the Patchouli and Frankincense. I can even feel a little bit more on my skin.

Now none of it is “back to normal” or perfect by any means, but it’s better than it was. And when something is so unbarble you’re passing out, anything is better than that. To be able to have even a little more function in my right arm and leg is fantastic (a little is better than none, after all) and it also means

I will also be adding Basil x10 to it today, to see if it helps with the “brain fog” that comes with neuropathic conditions. I hope that it will help me to think more clearly, to be able to put down more short-term memories, to be more alert, focused, in charge of my own thoughts and decisions, to be able to use my mind again – even if, again, it’s only a little.

 

Essential Oil for Spasms (& “Paraesthesia”)

Oils + Total Drops per 30ml/1floz:

     

  • Sandalwood x16

  • Clary Sage x10

  • Peppermint x10

  • Juniper x20

  • Frankincense x20

  • Majoram x10

  • Orange x8

  • Wintergreen x10

  • Patchouli x5

 


A Sense Of Calm

New things to help:

 

Over the last week I’ve found a few things that helped me, including information and insight regarding ASD and alleviating the negative side of it.

I found these two websites amazingly helpful and gained a lot of extremely helpful tips and tricks from their websites:

  • Spaced Out And Smiling – There are some great tips and insights from this duo of Jamie and Lion
  • And Next Comes L – I have learned a great deal about using various techniques like aromatherapy from impressively inspiring mother Dyan

 

From the information on these websites, and a little poking around on the internet (thanks, Amazon & Wowcher!), I’ve found another few things that have improved my existence and eased up on the crazy:

 

Aennon Humidifier: Cool Mist with 7 LED lights & aromatherapy

  • Cool Mist Humidifier
  • Aromatherapy
  • Calming
  • Clarity and focus of mind
  • Relaxation to sleep
  • Includes eBooks & online basic aromatherapy course

aennon-humidifier-puffer       aennon-humidifier-puffer_2

 

Safari Lion 

  • Giant colourful lion makes an excellent comforter when feeling crinkley-lionanxious
  • Is soft and cuddly enough to help remain calm and confident
  • Weighty enough to help my “floatiness” as well as comforting
  • Has many fabrics and textures (they’re not only good for kids!)
  • His crinkly mane and legs are soothing and helpful to remain calm, or to help with calming me down when anxious
  • Big and soft enough to cuddle (it’s about the size of a large baby – seriously)
  • Very good when helping with escalating anxiety

 

Giraffe Comforter Blanket

  • Just big enough to be comforting, but not too biggiraffe-blankie
  • Soft and multi-textured, with soft while fluff on one side and stripy slightly coarser material on the other
  • Have added essential oils (specifically Ylang Ylang) to help calm and soothe
  • Useful to cover my head when suffering sensory overload – along with the Safari Lion, helps with “recharging” after experiencing a stressful or anxiety-inducing situation

 

Aromatherapy & Massage: Essential Oils

  • Created bespoke essential oil recipes for ASD/Asperger’s & Fibromyalgia
  • Oils used in: Traditional oil burner, Cool Mist Humidifier, and in massage oils
  • Check other people’s recipes or peruse the effects of each one and make up your own

 

 

  • Good carrier base oils:
    • Almond oil
    • Clear Coconut Oil

 

There are many other really great and effective essential oils, and everyone’s requirements are different, tastes and likes are different – but there will always be something that suits you and your needs.

 

Whole Body Massage Mat with Soothing Heat Therapy Mode

  • Relaxing
  • Heat helps with Fibro pain massage-mat
  • Heat helps muscles unclench
  • Alleviates tension from pain
  • Has helped reduced pain & greatly reduced amount of pain relief required, especially in the evening/night
  • Purchased through [now closed] Wowcher dealbut there are others on the site which are virtually identical

 

It has not been very long, but they’ve already started to change a lot of things. I’m amazed that the Massage Mat alone has helped so much in reducing the quite excessive amount of pain relief required before. It was as if nothing would help alleviate the pain, and then suddenly this mat is taking away a huge amount of continuous agony – it’s truly amazing.

Another amazing thing is how the Aromatherapy Essential Oils also make a difference. The Aennon Cool Mist Humidifier has allowed me to gain a clearer head and more energy just simply by adding certain oils to it (like Juniper/Jasmine/Ylang Ylang/Bergamont/Vetiver – and take out the Bergamont, it then becomes more relaxing for bedtime). The same goes for the traditional oil burner – and tea lights run out in about 3 hours, so putting that on ready for bed is also a good idea, as the candle will burn itself out like it’s on a timer.

One of the most surprising and best solutions, though, has been the Safari Lion (he has been renamed Ser Crinkley Puff… because that’s what he does), and the Giraffe comforter (aka Travel Blankie… because who needs grown-up words for these things when you want them to be fun?). They’ve been quite instrumental in assisting me achieving my goal of tranquil neutrality for the last couple of days. Ser Crinkly Puff has been keeping me company and sitting on my lap, and his weight and loud crinkles has helped me keep a clearer head than usual… all with the help of the Travel Blankie and the Aennon humidifier and its Aromatherapy, whilst sitting on my lovely pain-soothing mat.

I’ve started feeling a little better about things since I got all these. I even coped well and didn’t really react with too much anxiety when I was informed of something I would otherwise find very difficult to deal with. Despite not quite having become accustomed to what it is, or wrapped my head around it, I’m calm and I haven’t reacted with the intense panic I would have done (and have done) in the past. For me, I’ve been relatively stoic about it… So far, anyway!

This gives me hope that there is a future out there where I can at least manage to deal with – and keep a lid on – the negative side of being an Aspie, and keep the pain under control without resorting to liver-annhilating pain relief.

It certainly would be nice.

 


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