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

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.

The best made plans

Well I made it to my 5th week on the Plant Paradox diet before my plans of sticking to it became more difficult due to the most unusual and sad changes affecting the whole world now - Covid 19 - a new Corona virus which has spread round the world in a matter of months, resulting in thousands dying and life changing in ways that we in Britain haven't seen since world war 2. Due to the need for the majority of people being ordered to stay home by our government, to stop the spread of disease ( quite rightly so) there have been knock on effects in how we obtain shopping. If you are healthy you can take a trip to shops as infrequently as possibly to buy food or medication, but if you have an existing illness or are over 70 it is advised that you stay home, isolate and shield.  So this is what I am doing, and we are trying to avoid my partner going shopping as well. It has been incredibly difficult to get a full shopping list online - many items that are impossible to buy - such as the dairy free, sugar free, soy free coconut yoghurt that I get or omega 3/pasture raised eggs - which without I end up just eating fish and vegetables - not easy weeks on end! So I decided to stop following the diet during our current crisis and try again when things settle down.

However, after 3 days, on my 3rd day eating half Plant paradox diet, half normal food my symptoms really started getting worse again. In the month of following the diet my pain levels reduced around 75% most days - I think I only had about 5 days in a month where my pain levels were as they have been prior to this diet and now my pain has increased again. I think I had been a blase apart having pain again - but right now I want to stick to the Plant paradox diet again even though it means eating pretty much nothing other than restricted vegetables ( without lectins - so no tomatoes/peppers/potatoes etc), wild caught fish if we can still get it delivered, restricted nuts ( no peanuts or cashews), certain oils such as coconut/avocado or olive oil, coconut milk.  I think I will just have to try using free range eggs and hope for the best that my symptoms settle down again.

Symptoms helped by 4 weeks of the diet -
pain mostly reduced, also less stiff on moving around
 brain fog and actually being able to use my brain a bit - certainly not back to normal levels but definately much improved - although 3 days into stopping Im struggling to think again!
Sore throats - normally I have sore throats anywhere from 2-6 days a week - by week 3-4 on the plant paradox diet my sore throats only occurred once or twice a week ( it can literally last just a matter of hours)

Off the diet - by my third day off the diet and having lectins again, not only has my pain increase in amount/intensity but with frequency and in so many areas of my body. But I also noticed that the little jumpy, sort of electric shock/twitchy feelings I get in my muscles have suddenly increased and my body feels on high alert again. Writing this is incredibly difficult - I can hardly think of the words that I need - I am literally stopping every sentence or two - forgetting things, searching for my words and feeling mildly muddled/confused - I was not feeling this so much on the diet - it was not cured but I was able to think properly more frequently.

I cant write any more just now as my brain simply wont function, but Im going to try really hard to get the foods I need to stick to this diet - whilst I felt improvements werent massive and energy levels had not improved at all, ending up feeling in pain again with a sore throat every day and my brain not working, my muscles twitching away  is enough to make me get back to it. Although I need to get more inventive on recipes for fish and vegetables as it gets tedious. I want to write more - including stuff about our current situation but feeling too muddled and cant explain just how hard it has been just doing this much - I keep completely forgetting what I was writing and getting confused - stopping and coming back to it. Even struggling to add the images. I have some things I want to write about that I feel are important but I will just have to do it at a later date when my brain will work. How bloody frustrating this is - I had agreed to write an article for a magazine whilst my brain was working a bit better - hoping  it will function better back on the diet again.

On a plus side - I just got awarded 2 golds and 2 highly commended from the SWPP  which made my smile. I feel super lucky that I live somewhere with a garden where I can enjoy watching the flowers, insects and birds during this awful time.
Hoping everyone stays well and safe, thinking of all my lovely friends and family and sending love to you all.

Taking control

After 14 years of having M.E. and the medical profession/NHS pretty much failing big time in helping me ( and most other M.E. patients) to be well ( other than pacing), I have researched and tried many things to help me to be as well as I possibly can. I am not in denial of having M.E. Ive accepted it a long time ago, however there are many stories of people who have recovered or at least managed to get there health into a better state leading to having more of a life - in the last year a friend of a friend appears to be well on her road to recovery - through researching and changing things like nutrition. To see her photographs of her on holidays up in the hills etc gives me hope, and so this last few months I have been trying to find my own path to recovery yet again. 

As previously, I have looked at nutrition again and last year I came across a Dr Myhills book explaining how a paleo ketogenic diet can help the body to produce energy more efficiently. The diet involves cutting out dairy, gluten and grains, sugar, fruit sugar and high carbohydrate foods such as many root vegetables. The diet advocates eating the recommended protien for your body weight each day, keeping net carbs under 30 grams daily and eating more fats (particular fats such as extra virgin olive oil). I tried this for a couple of weeks last year and it made me feel so ill, on top of feeling dreadful with M.E. and triggered horrendous migraines so I thought maybe it just doesnt suit my body - and stopped it. I had my gall bladder removed 2 years ago, so I was concerned regarding my body's ability to digest such high amount of fats. I continued to read up on this and joined a group containing others with M.E. who have tried this diet - there were some who have had gall bladders removed who felt some benefit so I decided to give it another go, and try to persist. Given Dr Myhills 35 years of experience in treating patients with M.E. and her passion for helping us to get well, I felt her advice is most likely one of the best sources in the UK.

 So I found myself 5-6 weeks into this diet, feeling utterly dreadful, despite following it strictly, being in ketosis, eating all the supposedly right foods. On top of which I have been looking after myself - getting good sleeps ( Ive managed to improve my sleeping in the past 2-3 months) , careful planning and pacing, resting, avoiding/reducing stress, stopping drinking alcohol. I have spent most of my time at home this last 2-3 months, avoiding all most activities that would exacerbate my symptoms. I have taken all the recommended supplements to help mitochondria, energy production and immune system - CoQ10, NADH, Vitamin B12 sub lingual spray, Vitamin B6 & 3, flaxseed oil, evening primrose oil, magnesium, vitamin C, vitamin D, Carnitine. I stopped taking D ribbose whilst on the paleo keto diet as suggested in Dr Myhills book .

 A friend of mine had suggested I look at Dr S Grundy's The plant paradox and I thought I would take a peek. I came across a video of Dr Grundy in an interview and was extremely interested in his approach at helping people to recover from illnesses. In his research he has found that Lectins in foods are making many people unwell. Many plants produce lectins, Dr Grundy describes plants as producing lectins as a defense mechanism to ward off predators from eating them or their fruits/seeds. The lectins can cause a whole range of unpleasant symptoms and are present in so much of our food - even meat - as animals are being raised on grains ( often genetically modified and full of anti biotics which he states are also detrimental to our well being). So Dr Grundy advises a paleo type diet avoiding all foods containing lectins - and he has seen great results in his patients, so much so that he gave up his job as a heart surgeon to help people  get well using nutrition ( and other measures).

 Now whilst watching videos of Dr Grundy explaining his approach, I ate a spoonful of peanut butter as a snack. I had a relatively pain free morning, but in the hour following eating the peanut butter I developed pain throughout my body ( this is one of my frequent symptoms which I often cant put a finger on any cause). During a video he mentioned that peanuts contain lectin and can be one of the culprits to causing our symptoms - to avoid eating them. I had a light bulb moment and threw out my peanut butter :). Now it may just be coincidence that my pain occurred in the hour following eating this, but my gut feeling says its not. I decided right then to give his approach a good try.

 So today I have started his eating plan, with his 3 day phase one, having a nice green smoothie for breakfast. What I like about Dr Grundy is that, like Dr Myhill, he is making a lot of this information public so that people can try it themselves, unlike some clinics with secretive approaches who charge the earth - when people who are very ill with M.E. dont have incomes and simply cannot pay for this vital information to help them to get well.

My green smoothie consisted of a handful of rommaine lettuce, a handful of spinach, juice of half a lemon, half an avocado, fresh mint, and stevia/pure vanilla extract to taste - all whizzed up with water. Its surprisingly nice - and a fresh way to start the day.

For this altered diet to work its important to only  eat wild caught fish, pasture raised poultry that has eaten natural insects and plants - not been fed grains/antibiotics, grass fed meats where the animal has not been given grains/antibiotics. Now these are not the easiest things to find locally in the UK. and they not cheap - but I would rather give up everything to pay for the right food and opportunity to be well again, or at least  less ill. Luckily I live near the sea and a fish quay, my partner is going out hunting today for the right meat/fish. Im fairly confident that I should be able to get wild caught fish from local fishermen.

Last year I also tried cognitive behavioural therapy partially to see if it would help with my PMDD ( pre menstrual dysphoric disorder) and partially to help with M.E. I learned nothing new that I didnt know from being a nurse. But it led to a next treatment idea for the PMDD which is currently working well for me - despite my Dr not having a clue about this treatment, I quite literally had to explain the latest treatments to her. I now take Fluoxetine on the very first day of any symptoms for around 7 days, it helps me within 48 hours ( unlike the usual action of this drug which takes weeks or months) It isnt working as an antidepressant but it can allieviate symptoms rapidly. My whole life I have struggled with these symptoms not knowing it could be helped until last year - quite ironic that I start treatment as I start the whole perimenopause. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3442940/
But reducing my stress levels by getting the right treatment for PMDD is something that can help the M.E.

What I have managed to do is find my own ways to reduce stress, stop being a worrier and find peace of mind - I continue to strive to improve with reducing stress - its a work in progress, although I have just recently dealt with one of life's most stressful events relatively easily due to my new approaches. I use a lot of positive thinking strategies which are found in abundance on youtube.

 Another thing I tried last year was Acupuncture - from a lovely lady who has helped herself to better health following M.E. Now I do feel that timing was not good an I was on the brink of going through two very stressful things ( moving home etc) so I believe this may have affected my body's response. I attended numerous sessions, but  varying reasons resulted in difficulties in having a regular weekly session. My practitioner is a wonderful lady and I feel that at some point I would like to revisit and see if she can help me further, but at  that point last year I was not seeing signs of improvement - I really do think this was highly likely due to other factors and that if I can try it again now I might see some results, but feel other negative forces hampered my progress.  I did find that the acupuncture helped me on my path to sleeping better and also helped me to reduce stress. I had no choice but to stop treatments due to financial restraints, it is what it is -but I can see me trying to determine ways to pay for treatment in the future. The treatments brought me peace and calm at a time that was highly stressful and Im very grateful for the practitioners efforts. TBC

So towards the end of last year I moved into my wonderful partners home, I cannot express just how amazing he has been regarding the M.E. and helping to find a way forward to promote my best chance at recovery or being as well as I possibly can. He helps me with anything and everything that I struggle with, he prevents me from getting worse by doing all the cooking etc. I have been so incredibly lucky to find someone who is such a rock. I really feel that we are on this journey together and that he is holding my hand as we walk through it, negotiating the twists and turns  as just a different sort of life adventure. Michaels support has enabled me to use what little energy I have each day/week/month to do things I love instead of making myself ill doing housework and cooking, resulting in never managing to do what I love. So most weeks we go out on a drive somewhere nice and if Im up to it we explore a park/nature reserve/coastal path with me on a mobility scooter. When Im not getting out I use our dining room as a sort of mini studio to take photographs of flower etc - its all set up so that even if I only have a little energy all I need to do is sit at the table and snap away - with everything I need within reach.

Earlier in the year I had decided that when I struggled to get out I would concentrate on something positive to help me get through it, which is when I decided on doing mostly macro photography at a table top, sat down. I gave myself big goals - Ive always believed that if you believe you can do something then you can. So my aims were to try to get an image placed in the International garden photographer of the year and to do my best in the SWPP and NPS competitions as entering each month gives me a little something to focus on when stuck at home the majority of the time.
Well I didnt get placed, however I am really happy to have had a couple of images shortlisted in the macro section and to get my portfolio shortlisted. The images of the lady bird above and below  are part of that portfolio.

These next images were also shortlisted

I did even better in the National photograph society's monthly competition, being awarded a total of 22 gold awards and 41 highly commended - which landed me one of my proudest photography achievements to date - only last week I was announced overall Photographer of the year for the NPS - which is a massive achievement for me. I really hope that others with M.E. reading my blog manage to complete reading the whole blog and realise that even though ill and pretty much stuck at home for 95% of life it is still possible to make positive things happen - if you put your mind to it. This hasnt been easy - Ive suffered after every mini photo session and the majority of it has been done sat at a table at home. I started learning photography 13 years ago after getting M.E. and Im mostly self taught, having used the most basic, cheap equipment for many years, but perseverance and determination has got me to this point. So I just want to say to others with this horrible illness to keep going, and find ways to adapt, look for the most positive way forward that you can find at that time in your life and take things one step at a time.
Many of the images included are images awarded by the NPS. A few were also awarded by the SWPP.

I will try to update soon on my progress

My wonderful partner Michael - this one was awarded a gold too :)

Climb your mountains, in your own way. Make things happen, you can make a difference.

So after a pretty miserable weekend, symptoms wise I can happily say that I am proud to have made a difference to other peoples lives this past weekend.  So despite the fact I could barely look after myself and suffered one of the worse weekends in years I made good things happen, I facilitated positive, social, learning and creative experiences for 11 people directly and more online.

(pic of me on the summit of Great gable in the late 90s)

You see it is possible to help others enjoy their lives and discover new hobbies, no matter how dreadful you are feeling yourself.

If you havent read my previous two blogs then I would urge you to do so.


Some of you already know I have hobbies which have helped me focus on positive ways forward in a life where having M.E stopped me enjoying the job I loved and previous hobbies of hiking mountains, cycling, camping, gardenning etc.

( me on the summit of Aonach more, hill next to Ben Nevis, late 90s)

I call these hobbies my silver lining in the dark cloud that is M.E. as the experience forced me to find new interests which I may not have considered previously.  The main hobby has been photography which I undertook at home becauze I struggled to get out. I was given a camera as apresent and decided I would switch off all the automatic settings after only 2 weeks and learn to take photographs from scratch. I decided to challenge myself to photograph things at home such as my pets, water droplets and flowers. I had no special equipment, just a standard kit lens and house lamps to light my subjects but it was great fun to learn. It wasnt long before I tried monthly challenge s and competitions online, and within two years I was in the top ten on one websites competition leaderboard.

(pic of me on my way up Sca fell summit late 90s)

Over the years my photographs of my frogs started getting attention. A local camera club asked me to join them to give a presentation and talk about my images. They then asked me to run a practical session helping their members take photographs of my pets. I was still very amateur. Then the UK press got wind of my images and story if how photography helped me cope with my illness. I ended up published in almost all the national papers as a result in 2010. Followed by a interview on tv.

I saved and bought low budget equipment and was bought lenses as presents. As my condition allowed I joined the above camera club and a local group called Bristol strobists who helped me learn portraiture on the very street that I lived. Through that group I learned so much and managed to socialise, I gained tonnes of experience too. The results were getting my images published in magazines and doing well in competitions.  I was even runner up in Pet photographer of the year with the SWPP for 3 years.

(Two images I took on my first ever group photo shoot with the Bristol strobists in 2010)

(Recent images published in 2015)

I moved away from Bristol almost 3 years ago and managed a few photoshoots up here in Newcastle, started my photography business running occasional photo days, continued to get published and do ok in competitions. By the end of 2015 I was struggling to run workshops and making myself ill from photoshoots. Ive not managed either for a year now. 

However, I want to get back doing shoots and Ive pursued competitions whilst less physically able. Ive had 27 images highly commended and winning Gold awards in The NPS competitions this year, which Im very proud of.  

Aurora image taken at Whitley bay 2015

So I was chatting to other photographers online in the north east and many expressed an interest in trying portraiture, some had no experience, a few had a little exp and other quite a bit, and I thought why not set up a group similar to the Bristol strobists group , where people get together to create portrait images, to network, socialise, learn, share, produce portfolio images and work on portrait projects - all free of charge. A friendly, helpful group. So I started a group on facebook, within a couple of weeks numbers were at over 200. I decided to take the bull by the horns and arrange a photoshoot. Its not been easy finding other creatives, particularly models as locally they do not appear used to this concept., However after about messaging around 20 models I found 3 available the day we wanted the first shoot, who wanted to collaborate. One couldnt make it at last minute, but this is one of those things that does happen regularly in this industry, almost always one model drops out or does not turn up. On the day there were 10 photographers and 2 models, a little unbalanced but Im sure we can address that as the group grows, The results are some lovely images and a bunch of people that enjoyed themselves. Most want to do this again and have already taken part in conversations regarding the next shoot and how we can organise things better, which is fab. I could not attend the shoot this time due to the M.E, but I am hopeful I will manage to attend some. But what I can do is help organise and facilitate something positive for other people, and take great pleasure in seeing the results, and hearing how everyone enjoyed themselves.

The two images below are by one of the photographers who attended the photo shoot, Cliff Soden, who really enjoyed himself and told me he learned a lot. The model is the lovely Loren Jessica Evans, who modelled with her sister Paige Evans, accompanied by their parents, who were pleased with how everything went.

The image below is by photographer Alan Wennington from the photo shoot on Sunday of model Paige Evans.

So what I want to say to other people with M.E, Fybromyalgia, or other illnesses is that you can still make positive things happen in your life. You can still be part of society even when you cant leave your home. You just need to find a way. That way will be different for all of us and we may need to adapt, but it is possible. We just need to be open to it. The way forward may not be the way you want at that time, maybe simply a short term thing whilst working on longer term plans, it may not be clear to you either - ask your family and friends for suggestions/ideas and help, and you will find your own positive paths.