Further updates and lots of good news

 So from my last post I was struggling too much to stick with all the supplements as they were causing so many awful side effects that I could not tolerate. Taking about 25 tablets, powders, oil every day plus living on such an incredibly restrictive diet simply was not worth it in the end for me. I came to a point where I just could not do it any more. I stopped all my supplements apart from CoQ10 and started eating a much more varied diet - but with minimal dairy and gluten to start with. The side effects from supplements stopped and to start with I was not getting increased pain despite eating more foods. But my pain levels have slowly increased - although I just cant for the life of me put my finger and which foods make it worse. Still my pain is definitely a lot less than before all of this. I do try to eat a lot of meals as I was whilst following the low lectin plan - such as scrambled eggs for breakfast, or choosing low lectin or gluten free options.  I am disappointed that no other symptoms improved and disappointed that it cost so much money to not get very far with improving my health when I tried so hard, and Michael put so much effort into cooking and shopping, but it is what it is. For now I will continue being careful with my food choices, attempting to keep lectins and oxalates lower but its not going to rule my life. 

Above - my Beauty of nature winning image SWPP

I would say that over the last few months I managed less than I was prior to starting the regime and I have been trying hard to slowly rebuild my activity levels. This has been hampered by an ongoing trapped nerve affecting my neck and shoulder, and more recently getting Covid. I am currently still recovering from Covid but know to build things up slowly and count myself  incredibly lucky not to have had it as bad as so many others.

Above - my 2nd place image in SWPP Beauty of nature competition

 One thing I have kept up from the regime the nutrition therapist suggested is mindfulness and meditation. This has become a very pleasurable part of my day and I can spend up to 2 hours a day meditating. I do find that it helps with pain and helps me to be more balanced and positive.

This summer I have put the rest of my energy into my photography as usual, this time creating still life images in our dining room and today I reaped the rewards of my time consuming efforts. Sometimes it could take me hours or days to create an image, slowly setting compositions up bit by bit and going back to it after a rest or maybe the following day, then getting lighting right one light at a time. It kept me occupied while I wasn't getting out and distracted me from the M.E symptoms and side effects of supplements. It was a great way to slowly learn how to do still life and I was happy to win a gold for one of the images with the SWPP and NPS. But that does not compare to todays surprise. 

One of my main aims was to be placed in the IGPOTY ( International garden photographer of the year) still life project for a 2nd year ( I had an image highly commended last year). Today the winners were announced and I feel incredibly honoured at having my images awarded 1st place, 3rd place, a finalist, a highly commended and 2 commended!!! Yes, you read right that was 6!!! images placed - I could not have imagined that in my dreams and was quite shocked but thrilled. It feels like a very special achievement to me. You can see all the winners here - IGPOTY Still life winners

Strangely this has occurred on the same day as another project I've been involved in, which I believe is fate as the publicity from the above may well help  with this. Last year I approached the M.E. association with a proposal that I supply them with images for free to enable them to create products to raise funds and this has finally resulted in the release of two calendars plus two sets of cards/notelets created from my photographs. I am very proud to be involved with this and will be encouraging people to buy them. They are themed as Animal magic and Flower power. So hopefully my success with the IGPOTY and any resulting publicity might help prompt extra sales if I can direct people interested in my work to the M.E. associations online shop. There is also a little bit about me in the M.E Associations magazine. M.E. Association website

Yet another bit of good news from my photography arrived this week, I  came first and 2nd in  the SWPP Beauty in nature competition  - totally unexpected and a lovely surprise. What a week! Very uplifting for sure and motivating me to keep slowly pushing ahead with my other projects and competition entries. I am now working on pulling together a portfolio and still aiming to produce images for a fellowship. Beauty of nature

Update and side effects

 07/07/21

 I have continued on with the protocol as outlined in my previous blog and very slowly increased MCT /C8 oil - but it has knocked me for six - feeling extremely nauseous to the point where I am not managing my full suggested calorie quota every day, dizziness for most of the day, stomach ache and cramps and swollen glands in my throat/neck. Exhaustion is  extreme and energy extremely low, meaning I am managing less than my usual. Brain fog and other symptoms persist. My whole digestive tract is uncomfortable with bouts of loose stools. I am trying to persevere, hoping this will settle down but feeling close to packing it all in as I am pretty fed up with almost constantly feeling worse. But the things keeping me sticking to it are the hope that I have a possibility of improving my health and quality of life, knowing some treatments can result in feeling worse before feeling better , looking at the long term goals - but at the moment I feel that life is passing me by this summer, with me hardly getting out 2-3 times a month whereas before I was getting out 4-8 times a month. Trying to stay positive and optimistic, enjoying our garden, doing meditation and doing some tabletop still life photography.

 Hoping the side effects settle so that I can try a ketogenic diet properly, supported as it is supposed to help a lot of people with energy levels.

 Its all such an expensive option following this protocol with costs for tests, nutritional therapist, about 20 tablets a day plus, oil, and a couple of supplements in powder form added to my drinks and food, then then specialist diet. It adds up to hundreds and so far I have felt worse for most of 3.5 months, it is sapping my mental and physical energy, despite my determination and huge efforts to remain positive, focused and sticking rigidly to it all.

 Whilst my pain is massively reduced and less frequent, this was something we feel we had largely tackled ourselves by working out that the low lectin and low oxalate diet gave good results. Although further advice helped us work out with foods had higher oxalates. The problem is that my diet feels so restricted and is going to be very hard to stick to long term.

I am still incredibly grateful that I have had the opportunity to try this option and have not given up yet. I had to try it - given the chance of getting better.

UPDATE 13/07/21

Another week on and side effects have reduced, glands only a little less swollen, sore throats reduced again, nausea reduced lots, stomach ache comes and goes, loose stools less of an issue, but fatigue and exhaustion are severe, energy is extremely low, hardly managing to keep up with my baseline pacing. Brain fog has eased temporarily for a few hours twice in the last week, other than that remains the same. Struggling to get off to sleep at night but sleeping through apart from when woken by pain from the trapped nerve in my neck.

( Warning below contains open details re menstruation - miss paragraph if you do not like to read)

I should add that the exhaustion/fatigue/low energy could also be worsenned by another health issue that Ive experienced this last month - extreme menstrual blood loss of over 700mls ( measured using a menstrual cup - which apparently equates to around 250 mls actual blood and the rest other fluids)  in the last week which is highly abnormal and has been pure hell! My DR is convinced this is caused by the second Covid vaccine ( she has seen it happen lots to ladies following their 2nd jab) that I had about a month or so ago, this is my first proper period in 6 months as I am going through peri menopause and it has lasted 26 days so far - the longest and worst in my life. Ive had bloods taken to check my full blood count and platelets due to the amount lost - and the bloods demonstrate that I have lost just over a unit of blood since one month ago, but luckily has not tipped me into anaemia - although the receptionist refused to give all the results ( I have to pick them up)  I have been taking iron supplement with vitamin C to aid absorbtion and a diet rich in iron, so I am assuming this has helped - there are other parts to a full blood count and platelet result that give a better picture of what is occuring - I will know once I have the full printed results.. I was prescribed Tranexamic acid to stop the bleeding and it has reduced it.

I know the above is not generally a subject we all talk about openly in public and some may consider it distasteful. However I am an open book and this is part of my journey, it is an important aspect of my health at present and I also feel that other women should be aware of this complication - I was not aware. It can be a scary thing to experience and in my 20 years or so as a nurse, even with two spells of 2 month blocks working in gynaecology and being used to a lot of blood, this still rated as extreme, so to some women with no experience or knowledge  in this area it could feel like they are literally bleeding to death. Its always worth talking to your Dr if you experience anything similar.

 

All in all I have felt utterly dreadful every day of this last week, despite the side effects symptoms easing off. I have stuck to the diet and protocol and now taking 10 mls C8 oil twice daily and 2 DIM daily. My nutritional therapist is aware of all of the above and reviewing later this week.

Hopefully I will start feeling a bit better soon. I have been spending my time at home  with just a half hour trip out locally to pick a few wild flowers, and have been trying to do a little tabletop still life photography, but mostly reading, meditating, enjoying watching wild life in the garden and watching a bit of easy going tv. Despite feeling dreadful I am happy enough in myself and taking pleasure in our garden each day, although really missing seeing people. whilst the UK is getting back to near normal I am still stuck at home and rarely see a soul, but this is the nature of M.E.

We have several visits a day from a group of about 12 Goldfinches with 3 young, its been fun to watch their behaviour and see them enjoy the wild flowers we planted last year.

Nutritional therapy and M.E. update

 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 

Nutritional therapist onboard May 2021

 

This year I have restarted the Plant Paradox diet again, in the hope that we could work out why it partially helped me for short periods last year and why my symptoms kept returning. Only this time we have approached a lovely Nutritional therapist who has experience of M.E. to help. 

Following a thorough assessment a plan was devised. The 1st 5-6 weeks has consisted of eating pretty close to the Plant Paradox diet but with some modifications, to eat certain amounts of protein, carbs, fats and calories specific to my needs. A plan was put together including other suggestions that may help benefit my well being and recovery, this included 

various supplements at specific times, 

looking at my sleep pattern and circadian rhythm - getting daylight daily to help, avoiding blue screens at night etc

meditation practice and mindfullness - bought a book to help me with this

trying different methods to stimulate and exercise my vagal tone - I chose deep breathing exercises ( such as Wim Hoff method)

tests to determine any possible causes or exacerbating factors, indicators of issues etc.

As the weeks progressed we reduced oxalates too - something I had started to do 2 months ago as I suspected foods high in oxalates were producing worse symptoms - specificly pain.

After 6 weeks my pain has reduced massively, but my cognitive dysfunction is considerably worse - with more confusion. I started the plan on 23/3/21 - it is now 4/5/21. So that's one symptom improved to start with. 

 Test results are back and I am waiting for an appointment in a few days time to discuss results and a continuing plan of action. In the meantime I have commenced digestive enzymes to help my body break down foods - as my gall bladder was removed a couple of years back.

As usual I like to add any positives in the balance out the health issues - I've not managed to do much lately with very low energy and severe brain fog, but its been amazing to discover that I was awarded SWPP Plant and fungi photographer of the year for 2020 - this is a huge achievement for me and very special for me. I feel truly honoured to win this. So made the effort to get a pic of me with my trophy and certificate. The winning image is below. 

UPDATED 19/4/21

Last week we had a catch up with the Nutritional therapist who rounded up the test results along with my experiences. Tests indicate-

bacterial gut imbalance

mould 

low dopamine and seratonin - common in inflamation

oxalates a little raised

low vit B6, vit C & NAC all indicative of oxalate involvement

low folate metabolism - (required for energy)

low antioxidant/detoxification status

low mitochondrial dysregulation

suspect ability converting energy from carbs

As a result of this info I am continuing on the low lectin, low oxalate nutrition plan just for this month whilst slowly introducing numerous supplements ( such as digestive enzymes, vit B1 and a few other things) to hopefully help reduce brain fog, build up my digestive system and to help with some of the above issues. We have liased with my GP and Im having a few bloods tests this week. We have an aim for me to commence a keto diet 4 weeks into the new supplement protocol, fully supported, checking in with both my GP ( who is incredibly supportive of this whole plan)  and nutritional therapist. Ive really simplified the plan here - in reality its quite complex and I will be taking a large amount of tablets to address different issues at different points, and nutrition is approached carefully. Not everything can be addressed at once. But slowly moving forward, pain is still greatly reduced bar 2 days out of the last 2-3 weeks.

Exciting news

 I just had to share my exciting news as I am over the moon. Today I am absolutely thrilled to announce that my Fly Agaric mushroom photo has been placed 3rd in the IGPOTY ( International garden photographer of the year) Beauty of plants category. Super happy with this result - I made it one of my aims to get placed for the last two years. https://igpoty.com/winners-galleries/the-beauty-of-plants-14-gallery/

It was taken in my local nature reserve which I try to get to a couple of times a month. Last year there was an abundance of Fly agaric mushrooms, plus many others, which I could easily reach on my mobility scooter. I took along a mat to lie down on and a mini tripod, shutter release cable and mini LED light to capture these beauties. I have friends who were also exploring this nature reserve looking for different varieties of mushrooms to photograph and they would alert me to any varieties that were accessible, we helped each other to see specimens that some of us have never even seen before. So I am very thankful for their friendship and help.

I also won a competition with another mushroom from this park with the SWPP recently and have a 3rd one shortlisted for the SWPP Nature- plants and Fungi category too.

 All this has really picked me up and made me smile