H.O.P.E - Hold On Pain Ends

Pain is unfortunately something I'm all too familiar with, I live in a constant level of pain on a daily basis; I can't tell you what it's like to be pain free anymore. Some days the pain is more tolerable than other days but it still affects me a lot in terms of what I am and am not able to do. 
Looking back I've lived with pain to some degree my whole life. As a child I was in pain a lot due to my spinal curvature. Often my pain then was dismissed as being 'just growing pain' rather than my pain and other symptoms being properly investigated and maybe if they had some of the diagnosis' I now have would have been given to me sooner maybe?
I take medication to manage my pain but it only brings my pain down to a manageable level to allow me to function on a basic level, but even then I am limited and still in some level pain and at times have to take extra breakthrough pain relief medication. I call my medication 'pain relief' because that what it is: it reliefs my pain as opposed to it killing and eradicating my pain. As well as regular and as and when needed pain relief medication my pain (amongst other symptoms) makes me feel constantly nauseous so I have to take medication to ease that too.
Pain comes in many forms: spasms, cramps, neuropathic symptoms like intense tingling/buzzing sensations, stabbing pains, headaches/migraines, gastrointestinal pain, stiffness, joint pain, torn ligament pain (often following a dislocation), sprains, acute pain, background pain, throbbing, tenderness, soreness, griping, generalised pain, - the list goes on.
Pain is something that is hard describe, especially chronic pain. Most people are familiar with the pain of a stubbed toe or maybe a broken bone but when you are relentlessly in pain throughout your whole body it is completely something else.
Being in constant pain not only affects me physically through my limitations - having to be careful for example due to the risk of exacerbating my pain or causing a joint to subluxations/dislocate or doing something that will increase my fatigue levels which doesn't help with my pain levels (as with M.E when I'm exhausted the Post Exertion Neuro-immune Exhaustion rockets up my pain levels) as well as avoiding things that will flare up a migraine. High pain levels are also a trigger for my non-epileptic seizures too.
My pain also affects me emotionally and every so often it wears me down to breaking point. There are many times when I have just cried because of how relentless my pain is especially when I have exhausted my list of pain management tools and I just feel like I can't take it [my pain] and my other health problems any more and I don't feel able to carry on.. Then it [the pain amongst other things] affects you socially. Many plans get cancelled or cut short because my body just simply has other ideas and seeing a friend even at home would be too much for my body to handle.
I've learnt to live with pain and when my pain levels are high often I've found that when I give my pain score I'm not as well believed because I'm not screaming (which would probably only exacerbate my pain) or having a complete breakdown. I've learnt that the best thing to handle my high levels of pain is to try and distract myself - easier said than done. I can tell you I know me and my pain well enough to know how best to handle it, but if I'm say for example in hospital and I'm in a lot of pain I find a lot of the time I'm having to explain and justify myself as to why I need high dose medications when I'm not screaming or having a meltdown. Those things just don't work. I don't take medication lightly but I know myself well enough for when I do need it and I will always ask for it to be stepped up.
I wanted to end this on a positive note as much as I can do when it comes to chronic pain. You can learn to live with pain and there are many things out there to try. Everyone's "pain toolkit" is different and what works for one person may not work for you and that's okay, it's just a case of learning what works for you. For me yes medication does help but I'm also a big believer in non-pharmaceutical alternatives to go alongside my medication. For example gentle movements if possible, my TENS machine, a hot water bottle, magnesium oil, massages, meditation/mindfulness, distraction, grounding myself amongst other things like using a wheelchair helps. I've also found pacing helps and setting a timer on activities so I don't overdo it and crash. helps too. I personally have a set schedule for the day alternating between activity and rest periods with times for meals, getting ready for the day and doing my main bit of physiotherapy and having this routine helps (I devised this with my Occupational Therapist in hospital). Getting a good nights sleeps helps too.

When you're in pain and it seems never ending, but remember the time when you pain has been at it's worse and even though it was really hard you managed to get through it.  H.O.P.E: Hold On Pain Ends  If you are struggling with pain speak with your doctor such as you GP or consultant as there are things that they may be able to do for you whether this be medication or making a referral to a pain clinic or for physiotherapy. You don't have to struggle alone.

Birchbox Review: Blooming Lovely Box

What I loved about this edition is that it came in a lovely tin and I was eager to try out the products and I was happy to see some more eco-friendly products in this edition.

I'm now using the tin in my bathroom to keep my face products neat and tidy.

(Products from led to right)

Rose Water Facial Mist

Grace & Stella

I like the rose scent to this but I didn't really feel like it hydrated my skin but it did feel refreshed. After a few uses though I did start to feel the benefits and my skin felt more hydrated. Personally I find it nice to use as a toner so I'll soapy it after washing my face. I'll spray it on and pat it on my face and let it soak in and then I'll apply some moisturiser. One downside is that the spray nozzle could do which having more of a misting effect.

Argon Oil & Marula Conditioner

Luxliss

When my Dad washed my hair one of the first things he said about it was how nice this conditioner smelt. When it was wet it felt lovely and smooth and once it was dried my hair was so lush and shiny. My hair only gets washed once a week and I can honestly say that for the whole week my hair remained in great condition; it hardly got that 'my hair needs washing' look and it remained silky and smooth.

Bloom Mascara

Manna Kadar

I haven't tried this product as I don't want to open it until I've finished my current mascara.

Green Nail Lacquer in 'Angel's Trumpet'

Manucurist

This is a lovely colour on my nails and a very 'me' colour. Two coats and you have a nice solid colour on your nails and it goes on really well.

The company has designed this product to be as natural as possible with a '9-free formula' which mean that they avoid 9 toxic ingredients like formaldehyde and toluene and opting instead for botanical alternative such as bamboo extract and cane sugar. To be honest I couldn't;t tell the difference between this polish and my others other than the scent of this one doesn't have this typical nail polish smell which is probably because of this 9-free formula.

It's defiantly a brand I would look for in the future and look into more. I will also see if they have created a nail polish remover and if they don't I would like to suggest to the if they could come up with one.

Rose Infused Sheet Mask

BeautyPro

I love this face mask. the floral scent was lovely and my skin felt so much better when I took it off and I didn't need to use moisturiser. Even at the end of the day my skin was still feeling the benefits. I also love the fact that this product was plant based and vegan and that the mask itself was biodegradable and made from bamboo which is more sustainable for the planet which are all things that are important to me. I would defiantly recommend and purchase this product other for myself or as a gift.

Just because you don't understand doesn't mean I'm faking!

I've lost count how many times I have been mistreated in healthcare because staff don't understand my illnesses or have preconceived [incorrect] beliefs around my illnesses.

Today (Friday 28th) was no exception.

Often my health can be like a toppled stack of dominos with one thing triggering another and another. Yesterday I had an asthma attack whilst home alone. I called Dad and thankfully he was on his way home. As my asthma attack worsened and it became harder to breath and me loosing conciseness Dad initially called NHS 111 who advised him to call 999 which he did.

An ambulance came and the EMT's where great and didn't rush the job and listened to my family on my medical history. 

Like a topped stack of dominos the asthma attack triggered a series of non-epileptic seizures which increased my pain due to having hypermobile painful joints (plus M.E pain) triggering more seizures. My seizures also affect my breathing as the muscles in my respiratory system, like all the other muscle in my body go into spasm during and after my seizures.

As it was and EMT crew there was little the could do and given my "complex" medical history they wanted to take me to A&E. Thankfully with much learnt team management at home around my health we manage well to avoid ambulances and A&E as it's the last place I want to be an often it exacerbates my symptoms with it being a busy and sensory overloading place and not the most autistic friendly place either.

But the main reason sadly why we avoid A&E is the countless occasions where I have been mistreated by staff who do not understand my health problems, symptoms and care needs. His has resulted in both myself and my family making formal complaints about the treatment I've and they've received and how on occasions I have been denied treatment or just bad attitudes or a lack of willingness to understand my illnesses.

Today was no exception. Whilst waiting for the Dr to see me and sort out my pain relief I had a few seizures mostlikmly triggered by my pain but also being back in A&E. Three staff members came to me. I was told to 'stop messing around' and to quit my body's seizure activity -which I have zero control over and tried to explain this. My right hand had clenched in spasm and they manually free one of my fingers to put on a pulse oximeter (why they couldn't;t have used my other hand I don't know. This is just some of what happened. Then in front of me (whilst I was conscious) one of the nurses said to the agency nurse/nursing assistant if she'd done any training on 'manipulative patients'?! IIt made me feel invisible, frustrated (as this is exactly why we avoid A&E) and also their attitude towards patients with non-epileptic seizures as well as making me feel as though I was putting it [the non-epileptic seizure] on in addition to the hope that I was also seeking some nice drugs out of it.

Just because may my not understand my illness doesn't mean it's not real or I'm faking! Yes my non-epileptic seizure are real and I have no control over them. I live wit chronic pain so when something exceeds my baseline pain I am in more pain than the average person that being said because I live chronic high levels of pain just because I'm not dreaming my head off doesn't mean I'm not in a lot of pain; I have just learnt to live with my pain. Yes my joints subluxations and dislocate more easily it doesn't mean that I'm exaggerating, having a hypermobility disorder is a very real thing. FND is a very real thing too, just because you can't see it on a brain scan or no now cause doesn't mean I'm putting on my symptoms.

So much more education needs to come to health healthcare professionals understand rare, lesser understood and complex conditions to prevent patients like me having to go through time and time again mistreatment especially when we need your [health care staff's] help more than ever. I find this especially when it comes to non-epileptic seizures (part of my FND diagnosis) and occasionally with chronic pain.

September Monthly Make - Wire Ring

This month I thought I'd show you how to make a simple wire ring. In the YouTube video I've put links to places where I but my basic supplies. If you want to give it a go it would cost much to buy the start-up materials to see if you enjoy it and then you can invest in more beads and different wires - that's what I did. I'd just buy some basic 3-in-1 mini pliers, silver wire and a small selection of beads.

(Some beads can be bought in my Etsy shop too - more to come with a discount code for views of my blog coming soon) so subscribe to my blog to see when I publish that discount code. Normally I'm more organised with my blog and Monthly Makes but this make I've been working on it all day as I didn't want to miss it as I realised that I didn't publish a post on Tuesday (life and health has just gotten int he way recently), but I'm working on some draft posts to set up to auto-publish each Tuesday as a while back I seemed to have collected enough draft posts to publish weekly and I want to try and keep up with that.

The camera work on this tutorial isn't great but hopefully it will show you enough to show you how to make a simple ring. If you would like to see some different styles of wire rings on my YouTube just leave a comment on YouTube. There are other craft tutorials on YouTube too and if you subscribe to my channel it will keep you up-to-date with new videos.

For now I need pj's and my bed! Happy crafting.