Loss of a friend and raising awareness

Today I write with a heavy heart. I lost a friend to suicide. Yes, he had CRPS, but he actually coped astoundingly well with the condition. His love kept him going. His love of his God, his love of his canine companion and his love for life. He enjoyed being outdoors and growing veg’ in the garden sharing photo’s of his crops as many of us gardening types do, he really enjoyed going fishing with friends until his condition worsened to the point where he could no longer do so, he loved his music (from Beethoven to ACDC) and he just loved and believed in goodness so strongly that every time his health knocked him down or stopped him from being able to do something he found the strength to dust himself off and grow from it.

His first response would be to share the beauty he felt in that recovery with his friends by posting in a CRPS support group where he knew fellow patients needed to hear just that. He always supported fellow patients, encouraging them to keep going, reassuring them that he understood the pain, the loss, the limitations and yet that there was still beauty in the world. Still a life to be lived. Still love to experience. He truly was a shining soul who lifted so many in dark times of their own.

His outlet was his poetry. That’s how he found the words to express his experience with CRPS. A condition so removed from common experience that words just don’t suffice until you suspend the usual way of communication and get creative with them. He let those words fall from his mind onto the page and they captured moments living with such intense physical pain. Burning. Loss. And yet hope. Love. The will to continue.

Cross' poem, CRPS doesn't own me (2)

One of Cross’s poems that he shared on his public page to raise awareness about CRPS

So yes, he had coping mechanisms that allowed him to find the strength to focus on the beauty in life to keep going. All of us will have a point where our situation finally outweighs our coping mechanisms. In fact I wrote about this just 12 days ago and it rips me apart to know that he so desperately wanted those around him to understand. He appreciated my article and wanted others to read it to help them to understand what he had been feeling for so long. He had been talking about suicide on and off for a long time by then. It was one of the reasons I wrote the post. I needed to create something that fellow patients could share with loved ones that said what they could not find the words to say. To reassure those close to them that it’s not cowardice or weakness, selfishness or meanness or anything else of that ilk. It is human and understandable. That those finding themselves in this situation are not to be treated badly but helped to gain more coping mechanisms, helped to make the necessary changes. Helped. Understood. Helped.

His spirit was strong, his will to live was amazing, his love for others was out of this world, his coping mechanisms worked as any of ours do – only as long as they are not outweighed by the situation.

When the situation is out of our control we have to make what changes we can that will enable us to keep going. As dis-empowered as we can be by our own supressed self-worth, by the lack of CRPS knowledge that causes others to behave badly and/or inappropriately around CRPS patients, we can still make changes. We can change our way of thinking and our approach to our health, we can choose which physio’ we can do at home, we can choose who we are in contact with, change the way we plan our day, we can stop trying to do what we used to do and start thinking about things we can do whilst we are working on the physio’, or when resting afterwards. We can make changes. My friend was unable to do so because even his most personal space was not his own. In such extreme circumstances we can still make changes because there is a social care safety net and a social protection safety net – people we can contact in dire need who are directed by law to help. But when that fails, well, there is quite simply no safety net.

My friend’s safety net failed.

It shouldn’t have.

Public services should not fail like this.

I cannot stress how much we need to spread greater awareness of CRPS and it’s multiple effects. No not that embarrassing Pepsi ad’ with the link to a local support group website which is out-dated and incorrect despite being asked to update and correct it by patients, that is so unhelpful. Every time I see that blasted ad’ I <headdesk> in a way akin to shouting “Whyyyy?” at the heavens. Link to the RSDSA please. They are up to date, they are informed and they have current professionals in the field working with them. 

I haven’t written about my friend’s particular circumstances because another good friend has already done so with her fabulous professional knowledge from working in the medical field and her close contact with our mutual friend. You can read her piece here. I’ve delayed reading it myself so as not to muddle my own writing here, so I shall pop over and read it (and probably have a cry whilst doing so) once I have finished writing this post.

The bottom line is: this shouldn’t have happened.

What I want to do is highlight my friend’s beauty of character, to remember him in the way that his friends knew him and not in the way that a few quotes from his last few desperate and angry days on social media inadvertantly make him seem. He wanted to live, but could find no way to escape his circumstances to be able to do so.

What I want to do is to to highlight the impact that lack of knowledge about this condition can have.

In fact what I want to do is initiate change.

With regards to that – watch this space. And share the link to the RSDSA, the CRPS FAQ of useful links and information on here, and don’t feel you have to keep quiet about CRPS.

There is a drive to get information to doctors on the Facebook page CRPS Research and Developments, so pop in online and ask for a postcard or two to drop in for your doctors to read. This is important. So very important. So many lives are lost to CRPS each year, and if we wait for the general medical field to catch up with the specialist research it will be too long. Too late for another soul who found that their safety net was missing because CRPS was not understood.

There is an opportunity to raise awareness with the RSDSA’s event “Color the World Orange” which you can see on Facebook here. It gives you an excuse to shop for clothes *and* you can help raise awareness. And if you would like to be part of an orange display on here too then please do post your all-oranged-up piccies to my Facebook page here, because I would love to colour this blog orange too, x

There is also a patient-initiated memorial event which you can see on Facebook here. If, like me, you do not want to release balloons owing to the potential effect on wildlife don’t worry there are other ways of raising awareness and it would be wonderful to have your company raising awareness in honour of such a good soul.

You can purchase awareness tee-shirts and other items on the CRPS, Art & Spirit Cafepress shop here. All of the proceeds go straight to the charity (currently in the process of setting up, and there are no wages to pay at all thanks to our awesome volunteers with a variety of fabulous professional skills) which is involved in sharing information and knowledge with those who need it to help bridge the gap between doctors and patients. If you can’t find what you’re looking for in the shop then let the CRPS, Art & Spirit team know here because we may well be able to rustle up a design at your request. 🙂

If you knew Cross and would like to leave a condolence message then you can do so here.

I am so so glad and honoured to have known him. I will always remember him because he has a place in my heart and that’s forever-land in terms of my memory.

Cross, be at peace my friend. Your wish to educate others and spread the word on CRPS to help fellow patients will continue, xxx

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Much love to you, readers, as always.

Thank you for looking into one or more of these easy awareness raising events, it means an awful lot to us patients and it would swell my friend’s heart to know we are working on his fondest wish.

x

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Suicide, the difference between wanting to kill yourself and wishing you didn’t exist

Contact with fellow patients who are currently feeling suicidal is part of the norm for many patients with chronic conditions. Anyone who’s been there ‘gets it’ and if we’re strong enough to support without our own coping mechanisms being compromised then of course we do so. Because we’ve been there. And though we each have to dig ourselves out of the mire it helps when there is someone out there saying “I believe in you”.

The reality of suicidal thoughts is not that someone wants to ‘kill themselves’, the thought of having to do the ‘killing yourself’ part is horrible so you want to find the least horrific way to do so. The ‘killing’ bit is not the point. The point is that someone who is considering suicide can see no way forward. No way out. Their situation has become so overwhelming that their coping mechanisms just can’t balance everything out. This is not a failure on their part. And if you’re reading this and you feel like this right now – this is not a failure. It is human and understandable. And you are not alone in this, there are people out here who understand how you feel and why you feel this way.

It is also not something to be ashamed of. It is understandable that someone with health issues that are changing their life, to the extent that they don’t feel like it actually is their life any more, feel this way. With pain levels so high that is impossible to think, to function or to see further than the darkest of times that currently make the light seem like nothing but a long lost memory. And not just pain. Crawling along the floor because your body is trying to make you pass out. Feeling like you’ve just won a medal because your body has actually allowed you to have a poo and this time you actually didn’t end up on the bathroom floor with your body temperature going through the roof, stomach thinking it should vomit right about now, body wanting you to lie down or it’ll make you faint and meanwhile you watch the room spin and spin whilst your head throbs so hard you just wish you’d pass out and miss having to experience this bit. I mean seriously, when your life has changed so much, no wonder you’re left reeling. And no wonder you just want to opt out. Many fellow patients know about this. You are not alone.

Time and again I’ve heard fellow patients echo my own words from years before, “it’s not that I want to kill myself, it’s just that I wish I didn’t exist”, “if I could just choose to not wake up…”

If you’re feeling this right now, I get it. I understand. I’ve been there.

As Rellacaffa also pointed out, society tends to say “Shhh! You don’t talk about suicide“. And you know what? We should. To not talk about this is to leave all those experiencing it feeling alone, forgotten, left on the sidelines and with no way out other than the very final way. Seriously the number of people who have been through this is huge. And to come through it is truly hellish but, trust me, when you start to build that way-out the light begins to seep in again. There is another way.

And you are not alone. (If you’re feeling these things right now I’m sending you a hug right here, xx)

When I realised just how different wanting to kill yourself is from wanting to not exist, I got stubborn. Why should I be stuck looking at opting out in such an extreme manner when I knew that the situation had overwhelmed me so utterly that my coping skills just weren’t enough any more? Why should I be put in a position where I’m considering giving in, how dare the world work that way? So I decided that I needed to take a new approach or things were not going to change.

When you hit rock bottom you are faced with two glaring options a) opt out, or b) refuse to opt out. But if we want to refuse then things can’t stay as they are. It’s that simple. Things have to change. So the options really are: a) opt out or b) change things.

With our coping mechanisms so severely outweighed the changes have to be of importance to us. And when we reach such an extreme stage in our journey we have to be prepared to take a step back and be honest with ourselves about everything. We get our head to separate out different aspects of our life and allow our heart to be honest with us on each one. Then we have to make a decision about what needs to change. What is most important to us. What will keep us alive? What will make us want to stay alive?

For me my change was to upsticks and move home. Which seems massive when in that state but it was what my assessment of my life at the time led me to and frankly if it’s going to stand a chance of changing things so that the coping mechanisms stand more of a chance of balancing things out then it’s worth it. I had been continuing to live in an area that I used to work in. I had already managed to get my mentally abusive boyfriend to finally go away. (It’d only taken about a year of asking him to go and him refusing. Yep, I was that run down that I couldn’t even call the shots on my own relationship, doh)! And the subsequent fleeting boyfriend had opened my eyes to what life could be like if there was someone who wanted to spend time with me and even help me get out and do things. That realisation that another life was possible was what tipped me over the edge once I was back in my isolated existence again, but it’s also what drove me to push for the changes. I wanted a life. I accepted my health issues, but I did not want to accept the unnecessary additional negatives too.

For others the main change might be having to give up work to remove some of the stress levels and allow for better pain management, or contacting the local pain management team to ask about training in handy psychological tools for patients with chronic conditions. Certainly a change of focus is required and we need to point ourselves firmly in the direction of life and refuse to dwell on health stuff. I mean we obviously have health stuff in our faces all day every day, but there’s a difference between productive temporary thinking and circular negative thinking. The first can be useful when required then put to one side so that life can happen, the second takes over our continuous present so that life gets squished out of the picture. We deserve to have an existence that we want to hang onto. So we need to figure out what it is that we want to hang onto and what it is that prevents us or makes us feel like we don’t want to hang on. What is it that lifts us that we can get more of by changing something? What is it which brings us down which we can remove or change so that we are not quite as overwhelmed?

Talk to someone you trust, whether near of far, allow yourself to put what you feel into words. If there’s no-one you’d feel truly comfortable doing this with then contact a support line, or get referred to a clinical psychologist (often also available through pain management teams) who can help you to gain handy tools and to figure out what needs to be changed. You deserve this support. You have a right to this support. It is part of the health issues you face and you do not have to do this bit alone.

I know many fellow patients who have also been through this. And their strength and optimism probably means that others do not realise that this is a part of their (our) past, but coming through this has that effect. We are stronger, we know ourselves better, and quite frankly when you’ve stared that option in the face and found another way instead then you know that you can handle anything that comes your way. So there isn’t just another way, it is one heck of an amazing path that can lead you to places you currently can’t see or imagine, but we all started where many patients are now. Where maybe even you are now. We were there. We understand. We ‘get it’. You are not alone and there is another way.

Love and strength,

x

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Additional links for medical staff:

Experienced nurse in multiple areas, Isy Aweigh writes here on some hugely important tips and insights for medical practitioners with potentially suicidal patients.

Michael Negraeff, MD, wrote last month of an experience with a suicidal patient here, and his thoughts link in with Isy’s article above.