Its really hard work living in this body, daily. Sometimes I struggle and I know we all have our own daily battles but I feel its time I shared mine with you. I need you to understand why I can only give you so much of my day, and that if I don't live my life the way I need to I will not last, I will not last for you to keep supporting, I will not last long enough to achieve the amazing things I know I can and want to.
My body is ridiculously sensitive due to a rare nerve condition called Hereditary Neuropathy with susceptibility to pressure palsies, a pretty little mouthful of WTF does that even mean?
It means I have to take daily self care of myself, religiously to keep me upright, to stay pain free, with no headaches or sore shoulders or numb parts of my body. It means I can be available to you for a few hours a day and that the rest of the time I need to do the things I NEED to do, and No I probably wont answer the phone before 11am unless I feel its urgent. But also sometimes I can't manage to keep myself pain free or numb and that makes it hard to get through the day, its wears at you, it can be exhausting.
I have the deletion of the PMP22 gene this means....
'Hereditary Neuropathy with liability to Pressure Palsies or HNPP is a slowly progressive, hereditary, neuromuscular disorder which makes an individual very susceptible to nerve injury from pressure, stretch or repetitive use. When injured, the nerves demyelinate or lose their insulating covering. This causes episodes of numbness and weakness in the injured area, which are referred to as the ‘pressure palsies'. These episodes can be mild and more of a nuisance than anything, or so severe almost all movement in the affected limb is impossible. They may last several minutes to months. Because the symptoms can come and go, and most neurologists have not yet heard of or seen a case of HNPP, it can be very difficult and lengthy process to be diagnosed. http://www.hnpp.org/ '
I first found out about this when I was 21, my whole left arm went completely numb and was a useless weight I couldn't move voluntarily. It stayed this way for a few months until eventually coming back to life slowly. My mother and other members of my family also have this condition, it can effect everyone differently and to different extremes.
Now its all about prevention I have to be careful about how I move, sit, stand/walk for lengths of time, cross my legs/arms, hard/cold surfaces, the amount of sleep I get, the softness of my bed, using scissors for long periods of time, how long I sit at the sewing machine, not putting pressure on one or more of my nerves for a time, the way I use a computer. i.e. everyday things that can be taken for granted then become harder to achieve.
Fatigue is a big factor and it can hit you unexpectedly, my bed is my sanctuary, my room is my haven, my space to recuperate, meditate and rest and not speak. I require this. Nourish! I will disappear there for time!!
I get weird pains and numbness in unusual places, headaches for weeks but its not all doom and gloom, I enjoy my life and I do daily things to keep myself in a good place to keep enjoying it, long term. I love running barefoot on the beach, it's the best way to ground myself, I love to be in nature and share its presence. I LOVE! #resetbuttonpushed
I share this all with you not to receive your pity but to create understanding of invisible conditions. We all have a daily battle but we are all doing as great as we can. Do something today your future self will thank you for!
I thank my chiropractor Yewjin, my physio Hugh (Consultancy House, Dunedin) and my masseuse Janie (firstname.lastname@example.org) for keeping me upright, and helping me through my days. What you do for me is amazing and so helpful.
Daily practice is something I try and maintain to keep me grounded here and present, to heal myself daily and give ME a time. I practice Qi Gong and my own version of yoga/slow stretches and exercises to keep me mobile and functioning, movement is key! I have also recently started using hemp oil on my food and have noticed a marked decrease in nerve pain. Food is medicine, I now have learnt to treat myself well when it comes to what I put in and on my body. I had to learn this lesson the hard way though, through work related harm working in an unsafe and not very well regulated toxic industry.
I had a headache for 6 months, after 5 years of naivety working for people who couldn't care less about anyone let alone the environment. I could never prove that it was toxicity that caused it but I know that's what it was, I lived it!
The realm of headachia was excruciating, and I try so hard to never be there again!! I do for myself as much as I can but it happens at times for shorter periods. That was 8 years ago and I'm doing so great now and have been working in childcare since then, I am feeling healthy and strong regardless of all of my daily battles. I am in the process of fixing this body! Its hard work especially when I work so hard and it being the end of the year, I'm pretty exhausted. It's been a big year for me and I have pushed myself past my limits. Getting up in the morning is hard, walking is hard due to my numb sole/pinched nerve situation and has been for the last week, it's improving slowly but its tiring too. Wearing shoes is weird. My shoulder/neck is cramping irregularly and pushing itself into a headache again. Yet I still smile and what bugs me the most is these days we greet each other with 'Hi, how are you?' but we actually don't stop to listen to how people are or do we even care in that scenario. I now just tell people I'm not answering that question today and that changes the situation fairly quickly, it makes them think!
I react this way because I think we need to change our greeting unless we can give time to the answer why ask how are you, just say HI, Hello, Kia Ora and SMILE, a smile is the best alternative in my view. Let your grin out, be happy be present, be good to yourself and those around you. LOVE is the answer!
So I spend time loving myself its not selfish its nourishment and nurture of one being. So do not be offended if I don't answer your phone call, (that's what my answer message is for) change an appointment, need to stand up during a long meeting or am barefoot it's just me getting through my day the only way I can to sustain myself for the long term. To prevent long term damage I must Do for myself and I give myself permission to achieve that.
So I guess i'm asking you if you will walk beside me on my journey?
Fiona Clements. Pakeha, Kai Tahu, Craftivist, Sustainable Fashion and Zerowaste Textile Practitioner. Conscious Consumer advocate.