Just a quick update on how the plan is going and how I am doing, more for my own records than anything.
So far pain is massively reduced, however it can flare in the days following mental or physical exertion still - this is not a pain due to lack of use as it occurs in strange places such as across the cheek muscles in my face, plus usually accompanies further swelling of the glands in my throat and sore throat. The pain levels are still lower even on these occasions which is a massive plus.
Frustratingly I have experienced a pinched nerve in my neck for the last month so Im am unfortunately still experiencing pain - just a different sort - nerve pain through my shoulder, down my arm, accompanied by pins and needles/a dead arm sort of feeling. I have been practicing various neck exercises to help with this, used a Tens machine, heat pad, working on ensuring my posture is as good as it can be, altered how I work on a computer and how I sleep. So hopefully it will ease in coming weeks. I am taking Boswelia extract with Curcumin and black pepper to help reduce inflammation in and around the nerve to aid healing. One surprise to me is is just how much some meditation can actually help relieve the pain Im experiencing from the trapped nerve - I think this may be partially down to the position I practice in - but I have found one meditation to help a lot apart from when it reaches that excrutiating point. I would highly recommend meditation for pain relief - but look for one that suits you - some I find simply dont fit with me, whilst some are excellent.
As for all my other symptoms I would say little has changed, brain fog/cognitive dysfunction/memory problems persist and fluctuate but can seriously interfere with my life and functioning, energy and stamina remain low, exhaustion/fatigue remains unchanged, flu like symptoms persist, the sore throats and swollen glands in my neck occur less frequently which is a little improvement. Sleep disturbances persist. Post exertional malaise continues. The cold hands, feet, nose eases in the summer months anyway so difficult to assess but I remain intolerant to temperature fluctuations. I still experience fluctuating sensitivity to noise and light, as well as difficulty focusing my eyes.I continue to struggle staying upright/on my feet for very long, with my balance remaining unstable - I have almost fallen several times at home recently. So not really any improvement over all other than pain reduction.
Recent blood tests show low ferritin at 32 ( possible aggravator mould) -but transferrin ok so not a supply issue but a storage issue ( all being used), low lymphocytes, high vit D, TPO ( Thyroid anti body) raised but less than it was years ago. TSH ok, T4 ok, T3 lowish and to be re checked in 6 months.
At present I am taking the following under supervision of my GP and nutritional therapist alongside following the plant paradox diet - ( PLEASE NOTE - this has been specifically worked out for me following medical history, tests, etc this is NOT a protocol for anyone else to follow. There are reasons I take each item and these are determined by specialists)
Morning - Thyroxine,
Betaine - for stomach mucosal lining and protein digestion,
Ox bile - for digestive foundation,
Molybdenam- for brain fog and sulphites
Liquorice extract - for adrenal support and dopamine backlog
Cod liver oil - omega 3 ,
MCT oil - pure ketones in prep for keto diet plus brain fog
Turkey tail powder - brain fog,
Vitamin C - bio available vit c
CoQ10 - to aid mitochondria with energy
Vit B 12 sub lingual
Co enzyme B1 sub lingual - to help with multiple markers shown in OAT test
Acetyl L Carnitine - for brain fog
Lunch - Glucommanan powder - to bind mould - demonstrated in 2 tests
Tea - Betaine , Ox bile, P5P - to stop internal oxalate production,
Bed time - Magnesium to aid sleep and pain relief plus Sleep aid herbal tablets as required
I am increasing MCT oil over the next week in preparation of trying a keto diet to hopefully kick start energy levels. Then starting DIM complex to help immune response indicated by low ferritin, increasing it over the following week.
Plan to continue with the nutritional protocol and other advised actions such as mindfulness, meditation, daylight, pacing etc and review in a few weeks as there is not an endless supply of funds and we simply cannot continue costs of nutritional therapist and so many supplements ( these alone are costing around £100 a month upwards) plus the cost of the diet. Fingers crossed we see some improvement. Its not easy following such a strict dietary regime with such a limited food choice when I dont have the energy to cook, and not easy on my partner either but we are both giving it our all and I am so grateful to Michael for cooking separate food for me ( he is not into this way of eating himself).
As always I try to balance the M.E stuff with some positives and whilst I have not been getting out much this last few weeks I have been dabbling with a bit of still life photography and thoroughly enjoying it. So those are the photographs shared today.
I offered use of some of my images to the M.E association to help them to raise funds and I have had an email saying they wish to take me up on this offer, images to be used on cards etc. I'm really happy to be able to contribute something to the M.E. community and do my bit to help raise funds for such an excellent association.
I also managed to get two images awarded gold from the NPS for May
