The start of my healing journey

My Healing Journey

 

I’m sharing this journey in a blog in case it turns out to be useful for anyone else suffering with any auto immune disorders or diseases. Plus, I need to keep a record for the Hospital that is monitoring me and for my own records.

 

#autoimmune #uveitis #fibromyalgia #rheumatoidarthritis #autoimmunedisease #autoimmunedisorder #selfhealing #alternativemedicine #complementarymedicine

 

I thought that this physical healing journey began with a ride on the back of my hubby Si’s Harley over the moors of south west Wales, when I discovered floaters in my right eye as I leant back against the sissy bar and gazed up into the deep blue summer sky. But really it was earlier than that.

 

I think I began to get ill around 2010 as my boys were leaving school. I can’t remember if I was still working at their school sharing tools for life in the ‘Amazing Lyfe Project’, or if I was just there for a teacher meeting for one of my sons. Either way, I was talking to a teacher, who shared my interest in meditation, who told me that she had been diagnosed with Fibromyalgia and she described to me symptoms that almost exactly matched my own. I had not long finished my master’s degree in Consciousness Studies and Transpersonal Psychology and was embarking on a PhD in that subject. I had teenage twin sons, was just getting back with my husband after years of difficulties and life was quite full on.

 

Then, at the age of 45, my muscles had become so weak that I was barely able to lift a pan off the stove. I started to wake up in the night to terrible muscle pains that were like torture, I had cognitive issues, memory and thought processes all messed up and I had no energy at all. Also, I was in the process of rebuilding my marriage after having recently got back together after several years of major stress and disfunction.

 

As a very well trained and experienced healer, counselor, yoga teacher, authentic power practitioner and shamanic practitioner etc. I had many tools to use and they had already helped me through many years of challenges. I had knowledge about diet and nutrition, the importance of hydration, exercise, blocked emotional and mental energy, patterns of thinking, feeling and behaving that were useful and not, rooted in love and trust and rooted in fear and doubt. I had all the tools and I needed to use them.

 

I gave up the idea of the PhD and decided to go back to our farm in West Wales thinking that it would be less stressful and would enable myself and my lovely hubby, handicapped as he is by the fallout of a brain tumour, to do the work we are most capable of and love. We could run a spiritual retreat business. Si would cook and take care of the land. I would create the retreats and run them, offering healing, chanting, chakra work, poetry and creative retreats, shamanic work, all sorts of wonderful health inducing, holistic events to nourish and nurture people. We could restore ourselves and offer the tools for healing to others as well.

 

What I hadn’t counted on was that running a business is SUPER STRESSFUL for people like us. We are just not designed that way.

 

By October 2011 I had set up a regime to get that fibromyalgia sorted out. And it worked. I wasn’t willing to ‘buy into’ the disease and become a victim of it. Friends gave me books on this illness, links to support groups, websites etc. but I didn’t want to go that route, do I never looked at them. Nor did it feel right to me to go the allopathic route, i.e. via doctors, medicines etc. I think they are wonderful when necessary, but we rely too much on them and I want to take responsibility for my own health and wellbeing.

 

So, since October 2011 I have a daily holistic wellbeing practice from Monday to Friday, which includes 30 to 60 minutes of exercise and however long of meditation I need. The exercise is a mix of dance and yoga. I use many different home video dance routines from ‘Salsacise’ to Yoga Boxing, the FAME workout to the Hotpants workout. Other days I just put on my playlist for dancing on ‘shuffle’ and just let it take me where the randomness takes me.

 

I dance until I am sweaty, my heart’s racing and I’ve had enough and then I cool down and chill out with yoga, making sure I always stretch my spine to keep it flexible at least several repetitions of cat, dog, downward facing dog, cobra, child and tree poses.

 

I drink more water, haven’t done dairy for over 20 years – I eat goat and sheep’s cheese (not too often) and take goat milk in my tea, nut milks for everything else, have cut out wheat (it stopped my hot flushes too!) and eat even less red meat than I did before. I eat lots of vegetarian and vegan meals, but also I eat chicken, fish, turkey and I still have a thing for good quality sausages and bacon as a treat. Vegetable soups and a variety of salads are the mainstay of my diet now.

 

Within months all the symptoms of Fibromyalgia were gone. The pain had stopped, my muscle strength returned and I had more energy. The more I moved the better I felt. The more time I spent out in nature the better I felt. The more I meditated and spent time relaxing in a deep peaceful state the better I felt.

 

I also had a hip issue – solved with ‘Solemate’ insoles – turns out I have flat feet and some arthritis in my hips. One day I woke up and found that I could hardly climb the stairs. Serrapeptase, a natural anti inflammatory from silk worm protein, along with MSM (methylsulfonylmethane – a plant based sulfur often used for arthritis, inflammation). The health food store told me that it would take a few days to see any difference if it worked for me. Within 24 hours I could run up and the stairs. It was amazing!

 

But there was one real issue that I hadn’t changed in my life. I was still focused on sharing healing tools with the world, supporting others, working to alleviate suffering in the world and bringing more love, balance, healing, peace and compassion. I worked really hard all the time to find ways to give that to others, as I had seen and been around so much suffering in my own life. The one place I never really tried to give love, peace, healing, compassion, balance and attention to was myself.

 

Although I was doing most things right, I was still working too hard and not giving to myself enough of what I needed. So, another issue came along to get my attention.

 

Rheumatoid Arthritis is something that runs in my family. My granny and mum had it. My sister has had it and I have it too. Most of the time there are no symptoms, stress makes it flare up. RA is an auto immune illness. So is Fibromyalgia. So is Uveitis. I see a pattern here…

 

In October 2014 I went to an optician to get my eyes checked. They ripped me off for loads of money, more than Si and I earn in a month between us, selling me glasses for reading and distance work. The reading glasses I need. The long distance were the rip off – and the whole package, including eye tests cost me more than I wanted to pay. Still there you go. The vision in my right eye had been getting bad – with white flashes, the odd dark spot or shadow and lots of floaty things in my eye, like bits of hair on my eyeball that never went away.

 

These are called flashes and floaters and need to be checked out incase they are precursors to retinal detachment, when the retina comes away at the back of the eye. So, when the optician said this was all just aging I left with four pairs of glasses (by one get one free) and an empty purse.

 

Then, about 3 weeks ago, on Monday 16th February Si, my lovely hubby persuaded me to get a second opinion on my eye. I was reading in bright sunlight and with my right I couldn’t read a single word with my glasses on. I got an appointment that afternoon and the optician wanted me to go to A&E asap. I got an appointment the next morning. The doctor in the eye clinic was young and lovely and spent ages doing tons of horrible tests concluding that there was inflammation in my eye and he couldn’t even see the retina to see if there was any damage. I needed to see a consultant. He was on holiday. So I went to my GP and asked for a referral to the specialist eye clinic in Liverpool at St Paul’s. I got an appointment a day or so later.

 

After doing some research on the Uveitis.org website, which was recommended to my by the consultant I saw at A&E in Wirral I sat on the sofa and cried and cried. I was really scared. You will get an idea why when you read the post I shared on facebook, which is below.

 

First I must say this. After sobbing on the sofa and feeling very sorry for myself I went to bed. I woke up in the middle of the night at 4.00am and remembered that my close friend Prema reminded me that this time of night is the most powerful to meditate, get in touch with spirit, do healing work. So, I meditated. I did a shamanic journey for my eye, asking what it needed to heal. I connected to my inner wisdom and my body’s intinct and my emotional understanding. I listened to my heart, my soul, my body. I paid attention.

I found peace. I knew that this was a powerful healing journey for me and that I would grow in love and wisdom from taking this path. I saw a symbol for what my eye needed – like a warm, bright sun and I understood that this was a time for doing deep healing work for myself, in order for me to move forward in sharing healing work again with the world.

 

I decided to get off the computer, get lots of rest, stop all the work I was doing and focus, FINALLY, on MYSELF. I shared on facebook what was happening and then buggered off into my girl cave for some DEEP HEALING WORK.

 

Here is what I put on facebook….

This is what is on my mind today… I’ve had various hospital appointments at the local Hospital and at the specialist eye clinic at St Paul’s in Liverpool during the last two weeks and have now got a diagnosis for my 80% loss of vision in my right eye and the flashes and floaters that make it like looking through a greasy window with a lacy curtain over it.

I have unilateral intermediate ocular inflammatory disease. That means I have inflammation in one eye. WOW can they come up with a dramatic name for swelling! The doctors all believe that this is an auto immune disorder and at this present time their treatment of this problem is still a bit hit and miss. Because really they don’t know what it is.

Mine is not as bad as some. It often leads to blindness, if there is an area of liquid in the centre. At this point they have said my scans show that mine is not that bad, there’s no liquid.

I was offered two treatment paths. One by each hospital. I had been warned that the two options would be very different, quite contradictory and that neither would be good.

My choices were one to three years of chemotherapy, in the form of immune suppressant, like you would give someone after a kidney or heart transplant to stop the immune system attacking the eye. Followed by a vitrectomy, which is sucking out the vitreous fluid from the eye with a needle and replacing it with synthetic vitreous jelly. This should solve the issue if all goes to plan – they said.

I DON’T FUCKING THINK SO MATE!

The other option was to put me on a very high level of steroids for a few months, which they said may lead to osteoporosis in the future. This option may need repeating again if the disease were to flare up again, which is common.

I do not feel at all comfortable about either option. NOT AT ALL!

I decided to begin to treat myself with natural anti inflammatories, which so far they are very pleased to say are working. I am also going to take a natural immune balancer. My friend Val found me these ages ago, well, the Serrapeptase anyway, which managed to get rid of the inflammation of my arthritis really fast a few years ago. The hospital being brilliant and have agreed to monitoring my progress, as they are aware that their own treatment paths are not ideal and would have some unpleasant side effects. They are supporting my choice and we hope that if it works as well as I hope, then it would be another option that they could also offer.

If the situation does not continue to improve I will, of course reconsider their pharmaceutical approaches. This disease is quite rare and they have no idea what causes it in many cases, including mine. They are really shooting in the dark here, so my plan is as good as any. At least there are no side effects and the anti inflammatories that I am taking work well for my arthritis too, so I am familiar with them.

I will let you all know how it goes.

I thought I would share this as people keep asking where I am and why I appear to have disappeared! So that’s where I am – I’m in Wales, working on healing myself.

So, here is my blog carrying on from the facebook entry.