Enough

Have you heard the saying, 'I wish you enough'? 

Well, the story is about an old lady who is at the airport, saying goodbye to her Daughter. Somebody close by heard her say, 'I wish you enough'. After her Daughter had gone through the gate, this person was believed to ask what it meant. According to the story, this was her explanation.

"When we say, 'I wish you enough' we are wanting the other person to have a life filled with just enough good things to sustain them". She explained that it was passed down by generations and continued to recite what she obviously knew by heart.

"I wish you enough sun to keep your attitude bright.

I wish you enough rain to appreciate the sun more.

I wish you enough happiness to keep your spirit alive.

I wish you enough pain so that the smallest joys in life appear much bigger.

I wish you enough gain to satisfy your wanting.

I wish you enough loss to appreciate all that you possess.

I wish you enough hellos to get you through the final good-bye."

Author Unknown

I often think about saying or writing this wish to people, but have always avoided it. I don't want to be too clichéd or feel I have to explain it. I worry that it might sound as though it lacked sincerity. However,  I really like the sentiment.
The Oxford English Dictionary defines the meaning of the word 'enough' as, '

As much or as many as required'. Surely what one person considers to be the ideal amount, a suitable level or appropriate measure will be different to the next person? But the biggest factor in this of course, depends entirely on the subject or topic you're talking about. It could be any of the things written above in the story, in fact it could mean anything.

As somebody with chronic pain I use or think the word 'enough', quite a lot. I describe myself as 'not enough' or 'not good enough' and live with feelings of inadequacy most of the time. I don't earn enough because I can't work, I haven't played with Harry enough because I've had to rest or I didn't achieve enough today because I was struggling with medication side effects. The list could go on. Some may say that it's easier or that we're more inclined to focus on the negatives and I'm sure there is some truth in that. However, I can honestly tell you that there's nothing 'easy' about believing you aren't good enough. But this is the reality, in my experience, of most people who live with chronic pain.

Unrelenting, debilitating chronic pain is exhausting. The implications and the effects of chronic pain are devastating. Depression and feelings of low self esteem caused by chronic pain are truly horrendous. Yet, despite this, you can be enough, achieve enough and feel enough. It's really a matter of realising, that within your limitations, you are here and in some small way, you are experiencing life.

I live for the moments when I feel nice and however short they are, I have to accept that they're enough. I know that I achieve what I can, when I can and either way, I'm not inadequate. I might have days and days where I feel it, but I have moments where I know it's not true. For as long as my life has to be dictated at some level, by this griping, burning, zapping pain in my head and face, I will accept, when I can, that I am enough, I am giving enough and that moments of happiness are infinitely better than not allowing yourself to see them or feel them.

Every single person is given the opportunity to have enough, if they let themselves. The secret is finding the way and not allowing the pain to mask everything that's good in your life. I don't manage this all the time, not even every week, but I'm learning and eventually I'll start to notice other times where I'm being given enough. 

I refuse to live my whole life feeling inadequate. Right now I'll accept that they'll be days, maybe longer, but I won't let myself miss out on having and being and feeling 'enough'.

To anyone who might be reading this,

I wish you enough.

Nikki

                                  Graphics created and owned by Nikki Samuel

Fundraising

In 2013 I was very active in the First International Trigeminal Neuralgia Awareness Day, on, and leading up to October 7th. I had created graphics, a video, had some media attention with CNN and the BBC and whilst not focusing on one area, I wore myself out. Several weeks after the awareness day I decided that I wanted to shift my attention to fund raising for the Facial Pain Research Foundation. We had a lot more people dedicated to the cause and as an International TN Awareness Fighter, I could still be involved in awareness, but as part of a much bigger team effort.

The only problem I could see, was how could one person, who almost never leaves the house and literally has no 'social group' actually raise any money? All the ideas I had involved large numbers of people, walking, racing, sponsoring or gathering together for a fete or gala. Unfortunately, none of these were things I felt able to do. So for someone who spends a lot of her life in bed, I admit that I was beginning to feel defeated. 

But then I started to listen to what my fellow TN sufferers wanted and that seemed to be something to wear; an outward sign that they were supporting a particular health condition/cause. So, I started to put some money aside until I had enough to buy some Trigeminal Neuralgia wristbands in our colour teal. Confident I would make back my initial outlay, I also looked into sourcing a ribbon shaped lapel pin and, within 3 days, I had a design I liked. Somewhere on the other side of the world, manufacturing began! These were items I could sell and it was something I could do on my own, without crowds of people and from the comfort of my living room.

I bought some small teal organza bags for the lapel pin and white organza bags for the wristbands, so I could make the presentation of the items look even better. I bought a large bag of dried lavender and I put a small scoop into each package, to make them smell nice when they were opened. I knew that these items were selling to TN sufferers and I sincerely wanted them to smile as they opened up their package from the UK, not only to find their awareness items, but also to see that I'd given them some thought and paid attention to detail. There are days that TN sufferers can't find anything to smile about and I wanted their package, despite being a reminder of the pain they live with, to give them a reason to smile. That in itself was a big success!

I set up a new email address that I would give out purely for awareness items, I knew I had to keep orders separate from my personal email because I get so confused, so easily. I was helped by a friend and fellow TN'er in the US - Debbie Murphy, to set up a spreadsheet that kept a tally as I added each order. That spreadsheet helped me keep myself up to date with invoice numbers, payment details and also if the package had been sent. But because of my medication and the memory issues I have, I had to keep on top of orders and payments as they came in and I needed to keep my documents and files updated. I did have a couple of days, where my pain levels were too high for me to even package an order, but people were patient and very supportive. Even though some people had paid, they were more concerned about my well being than their orders. I was so touched and calmed by their responses. It took me several days to send out the invoices, which involved a lot of concentration for this medicated mind of mine, but I eventually got through them all!

The wristbands and lapel pins sold out within 10 days. Orders were sent to Sweden, Finland, Ireland, Italy, France, Germany, Scotland, Australia, New Zealand, Wales, America, Jersey and Canada. I sent a few to well known people and celebrities for promotional purposes and kept one for myself for my hard work!

In total I raised £1500 (just under $2500 US).

If we believe that one person can't make a difference, they never will. But my fund raising project proved to me, that we can all make a big difference. If we spend too long looking at what we can't do, we'll lose sight of the things we can do. I was feeling defeated by my personal situation and believed that in isolation I couldn't raise any money. There is something everyone can do, if they put their mind to it. Having paid the large one off payment for the lapel pin mold, I think I will invest in another batch as there are still people asking for them. But for now, I have our Second International TN Awareness Day to think about and I have more people and places I hope to ask for support. My TN prison prevents me from doing a lot, but with my trusty iPad and the ability to send emails, use Twitter and contact people electronically, I remain passionate about TN awareness, the Turn Teal for TN campaign and raising money for the Facial Pain Research Foundation. 

                Graphics created and owned by Nikki Samuel