My Story
 

My partner is currently recovering from Severe ME/Chronic Fatigue Syndrome (CFS). In the last 3 months he's gone from barely walking much to doing up to 8000 steps. We returned the wheelchair to the Red Cross just after Christmas and now have a walking stick/seat which we keep forgetting to take out on our walks.

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In July 2021, my partner started experiences panic attacks and vertigo. His sensitivities to sound/textures/environments/touch/smells which he'd been able to manage, increased. It was getting harder for him to have conversations and he couldn't work.

We moved house, out of London and into the countryside in September. Although there were things that were getting better, there were also things in decline, such as the strength in his arms and legs. Neither of us really knew what was happening. Doctors gave him anti anxiety medication and he had blood tests and an MRI which all came back clear. Googling ME and CFS, NHS website didn't sound very hopeful. Referred to a CFS clinic who's expensive programme consisted of things that he had no capacity to do. Looking at it from the lens of physiology, his nervous system had been managing stress on the surface but just below was a lot of dysregulation. A run of stressful events which include a being burgled, car accident and global pandemic/lockdown all within 3 months, led towards a rupture and his system wasn't managing anymore. Having lived mainly in a state of fight/flight (sympathetic nervous system), the body could no longer cope.

At the end of December 2021, he wasn’t able to use his arms. I had to feed him, lift drinks up to his lips, bathe and dress him. Beginning of January 2022, my own capacity was stretched and overwhelmed that during a big argument where I shouted a lot, his legs gave in and he couldn’t get up off the sofa. He became housebound and I became his full time carer. Our lives and our relationship changed dramatically.

I felt so much grief and despair. My partner, this beautiful man couldn't hold me in his arms or have a conversation with me anymore. This was not the life I expected. I was no longer his partner but his carer and I had to be so careful not to become his therapist. I was exhausted having to be on hyper-alert, with a lot of anxiety. I felt like an imposter, helping others with their nervous system and anxiety. As a therapist and having been a personal trainer for over 20 years, looking after people was very easy for me. Here I was stretched to the point of, if I don't look after myself, we are not going to survive. Through somatic healing, I looked and felt into my body, the parts that believed, looking after others gave me value. Memories of being little standing on a stool and doing the washing up, or dusting the drinks cabinet with a yellow shammy and a can of Mr Sheen, and my parents being so delighted and happy with me. I can still feel that rush of happiness. The big smile. I am loved.

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And here, in real time, I was placed in a position of truly being needed. It wasn't long until resentment came in and the antidote was to explore what my needs were. Do I know what they are? Am I allowed to have them? Will they be met? Even before this all happened, my partner would say to me, "I don't need you and I love you." I allowed the loneliness to be with me. The feeling that I have to do it all by myself. 

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Toolkit

Things that helped:

• Kinesiology

• Genomics test

• Reverse Therapy. A good starting point is reading John Eaton's book.

• Supplements - Folic Acid, Magnesium, Vit B12, HPA

• Fabric sensitivities - travel towel

• Sound sensitivities - noise cancelling headphone, loop ear plugs-did not exacerbate tinnitus.

• Smell sensitivities - cleaning product/microfibre cloths

• Mobility aids - Red Cross hire out wheelchairs. If you need it more than a month ask about the assistance program where you can choose to make a donation. 

Things I wish we knew:

• Crisis Response - For the UK, ask your GP what support you can get. Google crisis support in your area. They will assess your situation and can provide carer’s to come to your home.

• Boosting ATP (energy) production with www.arc4heatlh.co.uk. A client of mine with long covid has been using this device to increase ATP production and within a few months, energy felt back to normal again.