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.