Emotional Challenge

By far and I mean FAR the biggest challenge I face is a mental and emotional one. Something Doctors totally fail to realise. It is not the pain, not the ‘conditions’ themselves. The diagnoses: Two slipped discs, one herniated disc (That’s 3 prolapses folks!), sciatica, juvenile myclonic epilepsy and neuralgia might be the root cause of my challenge but they are by no means the worst of it.

I read through my blog, again and again. I count every ‘like’. I think of every friend and relative who has visited me, called me. I look at every picture. I scoure the web for resources and positive stories. I look out of the window and try to see the glory in the forget-me-notts and the blue-tits nesting. I save every message of love and support. I tell my husband every bit of positivity I can find. Yet I’m still choked up, I’m full of exhausted tears.

change

I am only 28years old and yet looking after me was recently likened to someone who is 82! Over the last few months the life I have known has steadily disappeared before my eyes. ‘Managing epilepsy’ for so long has meant that perhaps I am closer to ‘the edge’ than others. My spinal injury seems like the final straw. WHY me? I think. Have I not done enough, handled enough, am I not enough?!

Enough

Ultimately this is why I can never totally believe in the Christian God. I believe in energy, in nature, in Gaia and the earth goddesses. Nature is cruel and hard and real. Natures energy passes from one thing to another, it shows no mercy and favours no one nor anything. It is a higher power than I, worthy of fear and worship. I stand humbled at the alter of Gaia not of Jesus.

Gaia music

I have always loved being a super busy active person. Previously I never let anything stop me. I have always been social, loved meeting new people and creating community events wherever I’ve lived. As I can’t drive because of Epilepsy I have always walked everywhere. Now I can’t do that.

Bashing the keyboard hard today feels good. Take it out on the page, show people what problems with my spine really mean. To not be able to go anywhere has been one of the hardest things that has ever happened to me. I can’t pop over and see friends, I can’t organise anything, I can’t go to a cinema, salon, restaurant, park, I can’t go on holiday, I can’t go anywhere new in-case I can’t lie down, I can’t go on buses, trains, aeroplanes…I can rhyme! I am totally reliant on other people to visit me, to take me to appointments. My darkest fear is that this injury is going to prevent me from being able to have and care for children…

dont

When I was diagnosed with epilepsy I remember thinking I should set a life goal. It was this: To find a loving husband and have healthy children and be able to make enough to support ourseleves independently, healthily forever. That is still it. That is all I want, all I have ever wanted. I have the husband bit, is it greedy to want the rest?

I feel that I am becoming a burden, something merely on people’s ‘to-do’ list, I can’t bear the thought that I can’t go and meet them or help them out. That is so painful a thought it actually burns my mind but I want to write down. Following this I also want to take a minute to refer people back to my blog where I wrote about how to not say the wrong thing.

I know these things are meant with love, but they are the wrong things to say. I got a wonderful email today all it said was “you are amazing. xxxx” It was the perfect thing to say and made my day. Thank you.

believe

My husband just appeared with a new Swiss ball for me. WOWNESS I ACTUALLY SAT ON IT! IT HELPED. He is a mind-reading hero. I am so blessed. Feel so much better writing this all down. I can breathe again. Off for a picnic in the garden which we’re going to pretend is the beach. Dream on. Choose Happiness. Choose Real Friends. Choose Love, One Love.

friends

 

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Searching for Silver Linings

Today, I want to try and find a way to pull something positive out of my dealings with Doctors recently. It is quite a challenge, I think that the answer lies in first acknowledging exactly what the difficulties are.

It seems that the recurring issues I encounter, right across the classically trained western (NHS) medical spectrum, from Nurses to GPs to Consultants & Surgeons are often that they:

  1. Patronise me, assume I am ignorant of all medical terms or go the other way and speak in Latin
  2. Don’t listen to me or take my concerns seriously
  3. Make me feel like a time waster and try to rush me out the door
  4. Eye contact, reassurance and  simple KINDNESS are nearly always absent.
  5. Close their minds to the suggestion that other methods, treatments, Doctors might work better than them. If you are brave enough to openly discuss one with a Doctor a likely response I have discovered is basically a threat ‘well…do so at your own risk…’etc

The fact that these are such simple things to rectify makes my heart ache! I do appreciate that being a Doctor must be a tough job and some, like my Neurologist and Paramedics I’ve encountered are real-life heroes, but the reality is that most are not. I can see that showing the same level of compassion to someone with a runny nose and a child with terminal cancer is a challenge. But as Doctors, I believe they should be trained to do this. It should be a priority. A Doctor’s first and foremost responsibility is to DO NO HARM. By doing these things, the Doctors are failing to meet their first aim. By doing these things to me they cause great harm and ultimately make recovery slower.

DoNoHarm

My thoughts on this have arisen from many encounters but most recently an incident with a GP I went to see today. I went, concerned about the side affects of long-term NSAIDs use, to ask for advice on how to slowly stop taking them and to ask if a GP might know of any local Homeopaths or perhaps any GPs also practicing Homeopathy. I left about 5 minutes after I entered the room, my questions went un-answered, my mention of a homeopath was met with a smirk and ‘everyone I know is very skeptical about the point of those type of things‘ and an even more toxic-looking prescription thrust into my hands, (unexplained and un asked for) accompanied by another sick-note signing me off for 3 more months without any explanation whatsoever….

Some more of 'Doctors' wisdom...

Some more of ‘Doctors’ wisdom…

I am a well educated, intelligent (if I do say so myself!!) young woman, who is immensely lucky to have a stable, close and loving family supporting her. However, I am ill, I need more help and information than they alone can provide. I feel desperately for those in similar situation to me but without family like mine. Where can I/others turn if not to their Doctors?

This could be me!

This could be me!

With that in mind, I suppose that yet again my experiences are showing me that, as ever, the silver lining, the positivity, the hope is to been seen in the way being in this situation, encountering these medical road-blocks is highlighting my blessings. One of which is that through their behaviour Doctors are forcing me to educate myself further, to open medical text books for myself, to take control of my own life and my own health. Today I discovered The British Homeopathic Association and saw that you can even get NHS referrals to them!

By far my greatest blessing, highlighted to me today though, is my family, my husband and my friends. They are omnipresent in all my challenges, I can feel them with me in the Doctors waiting rooms and in those stuffy offices. Even if they can’t physically always be with me, I know they are there. Whatever happens, knowing they are here is empowering and freeing. As long as we stand together and keep choosing love then I believe any obstacle is removable. One Love.

joys

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Yoga Therapy

I have had a wonderful day today so far. I have stood up for the best part of two hours and I’ve sat on a chair! I am exhausted, aching and in need of some more medicine, but it is a good day. One of my hopes with this blog is that I will use it as a source of inspiration and positivity when the dark days come, which I know they will. Something I can re-read and reflect on, to remind me never again to take for-granted the simple joy of walking down the beach.

A similarity of both back conditions and epilepsy is that they are both hidden conditions. By which I mean, not only can they not be immediately seen by others but often, they are hidden from me too. Like today, no seizures, no spasms… so why am I at home and not at work? On good days like this I find a new challenge appears. It scares me to admit it but I sometimes begin to doubt myself, I wonder if the drugs are making me loose my mind… I find myself thinking ‘was the pain real yesterday? am I somehow imagining it? was that a petit-mal or was I just forgetful? am I just so tired because I’m lazy and unfit??’ It is at this point that it is a comforting thought to me that X-Rays, EEGs and CT scans don’t lie. Bizarre and complicated to be comforted by the fact that I have proof of illness in my body…thinking about that makes my Brain ache. But that’s my truth and the reality of my hidden health conditions.

Looking inside me

Looking inside me

I realise now, that part of the process I am going through, is to learn to be mindfull of all aspects of my body. This does not mean living in fear, obsessing about my “condition”. It does mean, giving myself time, enjoying the small things in my life and empowering myself by learning about ways in which I can affect my long-term health. By doing this I hope to not only increase the number of Good Days, but also increase my self-belief and confidence in my own flesh and blood’s ability to function.

I have practicesed yoga on and off for several years, experimenting with Hatha, Kundalini and Scaravelli. I have always enjoyed yoga for the mental sense of calm it has bought me, the breathwork and chanting all soothe my mind and ease my limbs. I am not too concerned with being able to flip my legs over my head, fold my chakra’s into a sweaty ball balancing only on my toenail nor do I enjoy the expensive ‘gym-yoga’ in massive classes where ‘lift music’ is played in the background. Some positions, I am sure are not going to help my back, so I am worried about practicing alone and haven’t practised regularly for several months now.

As part of my learning I recentley got in touch with Ruth Baker from Wellness Street. Ruth suggested that I had a look at The Life Centre in Islington. On first glance I thought it looked like an average yoga studio, however reading further I discovered they offer a much more in-depth and holistic service than I’ve so far come across. One particular service I had never heard of, Yoga-TherapyYoga Therapy is the use of yoga where there is a specific health need or needs. The aim of yoga therapy is to promote good health for the person as a whole. Sessions at the Life Centre run in a low-cost-clinic to enable as many people as possible to access this 1:1 yoga and to provide training to yoga teachers too. According to the Life Centre Yoga Therapy is an integrated mind-body approach for restoring balance and adaptive functioning to the physical (musculoskeletal), physiological (digestion, respiration, cardiovascular, endocrine, and immune), and mental/emotional systems. I also came across a lovely gentle blog Insight Body which is about yoga therapy too.

Yoga therapy may be used to:

  • reduce symptoms of illness or injury
  • establish more functional breath and movement patterns
  • reduce physical and mental suffering
  • improve quality of life
  • enhance positive coping strategies.

Yoga Therapy has been indicated to help with:

  • Anxiety
  • Arthritis
  • Asthma
  • Attention Deficit Hyperactivity Disorder
  • Cancer – in terms of quality of life
  • Carpal tunnel syndrome
  • Depression
  • Eating disorders
  • Epilepsy
  • Gastrointestinal disorders
  • Immune response
  • Insomnia
  • Pain – low back
  • Respiration
  • Stress

I’ve booked my session and can’t wait to see what it might bring! If you’ve tried out Yoga Therapy I’d love to hear from you, I look forward to reviewing it when I’ve had a go in a few weeks.

Here’s to more good days, mindfulness and empowering knowledge gaining! One Love Yogis!

Seek the wisdom that will untie your knot. Seek the path that demands your whole being.

Seek the wisdom that will untie your knot. Seek the path that demands your whole being.

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Recognising truth & my soul muscle

In my search for healing knowledge and empowerment. I am being forced to read increasingly medical journals, looking at the biology of my anatomy in ever more detail. This fact in itself is a huge accomplishment for me. One of the ways I have grown up dealing with my health issues, probably the main way, has always been to ignore them. To pretend they’re not there and then even of it does have to come up, making light of them… chasing huge sodium valproate (Epilim) tablets down with Tequila shots and more, as if by displaying my meds in this way the reasons why I had them in the first place would somehow disappear too. I haven’t done that for a long time now, I’m not proud of it either but it’s a fact. That was my teenage logic.

I am happy to say that I’ve moved on from that now, but those behaviours left their mark on me. I held it all inside for so long and bottled up my fears. I have learnt the hard way that the human brain can only hold so much fear. Sometimes all it takes is the distant sound of a siren, a door slamming, a raised voice, a medical description  and I suddenly find myself over the edge. The edge. Something I cannot see but is constantly there, pulling me to it. Reaching it brings scorching tears to my eyes, shooting pains in my head, my neck, the world lurches, my hands and feet go numb. I can’t breath, I can’t see, there is a lump in my throat that doesn’t move. That is my edge. It is not a good place. I am proud that I don’t spend too much time there anymore. I am proud that I can write about it, begin even to research medical information that previously sent me to the edge. I am proud that I recognise it. Through recognition I gain knowledge and the empowering ability to avoid it.

Falling off the edge...

Falling off the edge…

In my current research I have learnt about an amazing piece of our anatomy which I wanted to share. Known as the Psoas muscle (pronounced so-as) I had never heard of it until recently and am amazed by what I have learnt about it. The psoas muscle is the deepest muscle  in our bodies, hidden deep behind abdominal muscles under our tummies. It is the muscle that goes from the solar plexus to the upper leg, allowing us to swing our legs while walking. Incredibly this single muscle is intrinsically related to:

  • Skeletal balance
  • Flexibility
  • Range of motion
  • Joint rotation
  • Organ functioning
  • Breathing
  • Circulation
  • Adrenal health
  • Nerve functioning
  • Emotional stability
  • Giving Birth Naturally

Due to the psoas’s integral role in all these areas, it follows that when it is not fully working it can cause:

  • Lower back pain
  • Sciatica
  • Excessive menstrual cramping
  • Hip socket tension
  • Groin pain
  • Scoliosis
  • Knee, neck, and ankle tension
  • Bladder disturbances
  • Digestive upsets

Nearly all of which I can put a big fat YES tick next to! So you see, discovering this muscle, understanding where it is in my body has been a bit of a eureka moment for me. So entwined in many of our bodies processes and primarily linked to our central nervous system, is the psoas, that many cultures around the world also refer to it as ‘The Muscle of the Soul”. 

Discovering this is an amazingly empowering feeling, now that I know more about what is going on inside my earthly flesh and blood I can begin to work out what to do with it. I read about a Yoga teacher called Liz Koch who specialises in working with the Psoas muscle.

Koch says “to work with the psoas is not to try to control the muscle, but to cultivate the awareness necessary for sensing its messages.  This involves making a conscious choice to become somatically aware….The psoas, by conducting energy, grounds us to the earth, just as a grounding wire prevents shocks and eliminates static on a radio. Freed and grounded, the spine can awaken… As gravitational flows transfer weight through bones, tissue, and muscle, into the earth, the earth rebounds, flowing back up the legs and spine, energizing, coordinating and animating posture, movement and expression. It is an uninterrupted conversation between self, earth, and cosmos.”

She sounds great! Unfortunately for me, she lives and works in California. I am looking for a yoga/Pilates teacher in the UK who has knowledge of and interest in the psoas muscle as I feel sure this would help me. If anyone knows of one please let me know. I am looking forward to getting down with my psoas and writing about it again soon!!

 

 

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