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.

Update on diet

Well Ive been following the Plant paradox diet for almost 2 months now, with one 3 day break where I thought I would try introducing a few foods again then by my 3rd day I really regretted this decision to promptly reverted back to following the diet strictly. Ive been sticking to stage 2 of the plan and my brain fog is definately  reduced a lot, although its not completely gone - I definately still get it worse  post activity, so mostly M.E related connected to post exertional malaise. My cognitive functioning has improved a good bit too although Im still experiencing difficulty  with  tasks such as learning how to work something new or  problem solving. My memory remains poor and this doesnt seem to have changed. Overall I would say my cognitive functioning has improved maybe 20-30% some days, but unchanged other days and brain fog has improved by between 20% and 60% some days,  however this is extremely variable and some days it remains the same as it was. It is hard to say  if other factors may be affecting this such as poor sleep or PEM , or if it is diet related. Personally I feel it is down to a mixture of these and the diet has reduced these symptoms  helping me to function mentally a bit better than I was on some days.

My pain levels have definately improved since starting this diet, they increased substantially when I added foods back in for 3 days and reduced when changing back.  Although on trying to be more active I still get high levels of pain in the days afterwards regardless of diet or whether activity is paced and minimal or  increased a lot (for me - this could simply be having a shower, drying my hair and attempting to cook an easy meal in one day, doing an hours photography sat in the garden). But on days where I pace and keep my activity levels at  my regular normal amount then pain can be reduced by up to 75%( with the odd day of very little pain), on days where I do a little more it is probably still reduced by 30%, and active or post active days it remains pretty much as it has been. I did actually have two weeks of much lower levels of pain and  reduced my pain killers to almost stopping them, but then it increased again - partly because I was  being more active - it gets frustrating doing so little and it can be worth being in pain just to keep myself occupied or have a feeling that I have achieved something.

My sleep has improved a lot overall, apart from a couple of weeks and the odd night I have slept much better most of the time ( ? 70% of the time sleeping well) My fatigue levels dont feel any different to me and my energy levels  dont feel noticeably different, although my partner has stated that on observing me it appears as if I have a bit more energy and I appear to be managing a bit better. I cannot say that I feel a great deal different with both of these. I still struggle having a shower a have to sit on the side of the bath to dry myself and have just put on a dressing gown to absorb the water when too exhausted to dry myself. Im am still struggling to dry my hair most of the time. I have had a little bit more stamina walking around home some days, but this is not consistent, my legs still get wobbly, weak, jumpy and feel like Im walking on the moon at times.

I have noticed that Ive felt the cold less and my hands and feet have not been so cold as much - whether this is because  of warmer weather/higher temperatures or maybe Im better at preventing my hands and feet getting cold, or a combination of both. Plus due to the restrictions on leaving home due to the current pandemic Ive only actually been out on my scooter once in about 6/7 weeks or so - just a local exploration. So Ive not been outdoors as much as usual, which is where I feel the cold most, but I have been in our garden  probably about 3-4 days a week for up to an hour at a time.

My partner and I have decided to try phase three of the diet, but only introducing one food at a time. I will be trying tomatoes first - fresh, peeled, deseeded and pressure cooked to reduce lectins. This one food could make a big difference to my food options.  I have unfortunately been unable to buy pasture raised chicken and eggs, the pandemic situation has made it even more difficult to obtain many specialist foods, so I have settled for free range eggs and normal chicken - I suspect these have slightly negatively affected my brain fog again - Im going to monitor this over the next few weeks and if I think it is then I will just stop having chicken and try to get omega 3 eggs again ( there is only one place selling these and its miles away - we arent supposed to travel unless for essential reasons such as food, medical reasons etc and I doubt my reason of getting brain fog from normal eggs would be accepted as the shop selling them is a good ten miles or so away). But if lockdown is going to be for many months then I guess one trip a month should be out of the question given how limited my diet is. ( limited veg, wild fish, limited types of nut, extremely limited fruit and very little else)

Its been a very strange couple of months where life has changed for people around the whole world due to the Corona virus pandemic, in a way it has affected me a lot less than people living a normal life without an illness, as I have little choice but to spend pretty much most of my life at home. Whilst I would say I am mostly adjusted to this way of life, I was used to getting out for a drive most weeks with Michael and going for a ride on my scooter anywhere between twice a month and twice a week. Now I find myself in the strange position of worrying about being stopped if I go out for essential exercise as an able bodied person might not appreciate that I used a lot of muscles in using my scooter - especially as I generally use it in nature reserves on rough ground, this means it can sometimes be difficult just to stay on it!

 I use muscles in my back, my legs when I am going up and down slopes, my arms for steering and generally keeping the steering from veering the wrong way etc. Now to anyone who is fit and healthy this may be hard to imagine, but my muscles are wasted and weak, using my scooter for up to an hour can actually leave me exhausted for the next couple of days. Not just using it but there is the getting ready to go out, the walking to the car and back, the few steps I takes as I am exploring where I get off to look at a plant, insect or view etc. All this keeps my muscles from completely wasting - can I do this my moving round at home - not really. I cannot use the same muscles and dont intend to lose the level of functioning that I have as it can take months on end building any level of fitness back up with M.E. - Im still working on  rebuilding the level of activeness I used to have before my major crash over 20 months ago!  So I will be starting to attempt going out on my scooter locally (in the local streets and nature reserve one mile away) providing I can keep the social distance  from people- unfortunately there are many selfish and ignorant people who do not care if they pass the virus on and will walk right next to you - its not easy to get out of peoples way on a street path with a kerb on a scooter, so the wider paths on certain roads nearby or parts of the nature reserve will work best for me.

 I have been experimenting at home and in our garden with a cheap old Helios 44/2 lens which Michael kindly modified for me - I love the effect it has given( see the dreamy look above and below this paragraph) This is more pronounced when shooting at a shallow depth of field, but only a tiny area is in focus and this is tricky to achieve with manual exposure and other difficulties affecting peak exposure, but its been fun and I will continue to use it for floral work. I have a couple of magazines interested in publishing some of the resulting images.

I have also been producing more background images using this lens and have added these to my texture collection which I have decided to sell. I still need to work out how best to go about selling them as I have had some interest, but not sure its enough interest to make it worth while paying for a digital downloads shop online. Something for me to sort over the coming months.

Another reason it has been a strange month is birthdays -it has not only been my birthday, my partner Michaels birthday but my daughters 21st birthday - all in the middle of lockdown without being able to see anyone. Now I am used to this - Ive had many birthdays where Ive been unable to go out due to M.E - but I usually made it out within a few weeks but its hard for a young lady celebrating her 21st alone - literally seeing nobody, but we tried to make the best of it. In the weeks running up to her birthday I managed to get about 15 short videos from her friends and family especially for her birthday. The singer from one of her favourite bands agreed to create a video specially for her and sang two songs in it - this really made her smile. Then she had a long video chat with me followed by video chats with friends.

I actually had a birthday drink about a week or so following my birthday - my first alcoholic drink since New years day! I stopped trying to drink any alcohol after having reactions to it almost every time I tried - one or two mouthfuls of wine or ale would make me feel breathless with a racing heart and as if poison had been poured into my veins. It would settle and usually I could have a couple of pints after an hour or two but it wasnt enjoyable and was not worth it so I stopped drinking alcohol - not that I drank often, probably a couple of times a month. I decided to try a glass of mead and had no bad reaction at all so ended up having two glasses. I am allowed a glass of red wine on this diet so figured a small amount of mead occassionally cant be too bad - im pretty sure it doesnt have lectins, although the sugar content may be high, but I am allowed a spoonful of honey now and then, so its not that far from my diet.

I have two new Preying mantids now a Rain forest mantid and a Malaysian blue mantid which I was able to order with my regular live food delivery for my other pets. Theyre super cute - expect to see lots of photos over coming months.

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.

Here I go again - Renewed drive to beat M.E

Im feeling super positive and happy lately. Life is good. Im enjoying exploring spirituality and reading a little psychology - both hugely beneficial. Im still struggling with the M.E, still only getting out once or twice a week, so none of that has changed. However Ive certainly got used to being single and psychologically feel better than I have in years, not that I had a problem, but I feel happier, content, at peace now whilst I didnt before.

Despite my attempts to increase my activity levels earlier this year, Ive not managed to increase my stamina at all. Frequent minor illnesses hampered my attempts. All attempts at increasing activity and stamina have failed. BUT Im getting back to basics now, a new plan. This time Im cutting out the one thing that I love that has been draining my energy and has resulted in experiencing severe symptoms in days afterwards - yep photography. I had been grabbing the opportunity whilst out with friends seeing bands to take photos of the bands too. Its amazing how much this drained me. So 1st thing in my new plan - 28 days of no photography unless its a quick snap. Time to concentrate ALL my effort on beating this illness.


So my plan, which Ive started this week
1/  Get out for a short walk EVERY day, no matter how dreadful I feel , starting with a simple 10 minute daily stroll. Increasing the length of time each week or two depending on how my body is responding. Now Ive done this before, tried earlier this year and a few times the last 2 years and its not worked, BUT I did this in 2014 and it led to me being able to rebuild my activity levels massively that year, with regular walks of between 3 and 5 miles.  So, this is why Im trying it again. Now this method doesnt work for everyone, graded exercise has made some people worse,( it has made me worse in the past too) but Im building up very slowly and gently so I do not make myself worse. I will listen to my body. But I will stick to this ridgedly every day for at least a month, even if its just 10 minutes a day. Ive done it before and Im so determined to make it work again. If this doesnt work then Ive no other option to continue my life as before,  including the occassional boom bust cycle in order to do the things I love, as without doing what I love in life there is little point.

2/Super super healthy eating and losing weight. I didnt lose the weight earlier in the year. So I will kick start very slow weightloss again. 190lbs a couple of days ago, Im aiming to reach 170 if I can. Ive continued to eat fish and chicken once or twice a week over the last couple of months, partly following a very well educated friends advice I have increased this. Im not so keen on red meat but tried it a couple of days ago and may eat it once a week. If after another couple of months eating meat I see no difference Im likely to return to either being vegetarian or pescatarian though. Im eaing a diet rich in low fat foods, pulses, grains, lean meat, vegetables, fruit. Low sugar, very little processed foods. Calorie counting as I cant exactly lose weight with increased exercise at present.

3/Supplements & medication, I will continue taking D Ribbose and CoQ10 plus NADH. I am also  trying Curcummin to see if it helps with pain relief, Milk thistle due to a liver problem which is being investigated, iron, vit C, vit B, vit D, flaxseed oil, Ginko biloba and ginseng. All of which Ive checked are fine with my GP following an ongoing liver and gall bladder issue.  Ive recently had my thyroxine reduced from 100mcg to 75mcg as TSH was 0.5. Im battling pain relief, trying to hold off anti inflamatories as much as possible until my stomach issues are identified for definate, as still need to rule out an ulcer. So taking Lansoprazole until further tests and diagnosis determines the cause of the pain. So its codiene and paracetamol for pain, but trying to take as little as possible, using hot baths and heat packs instead whenever possible.

Apart from those simple steps Im ensuring a good sleep pattern ( well trying to in this heat), keeping myself thinking positively, avoiding being around negative people, keep stress to a minimum. Avoiding spending excessive time using a computer, building in rest periods to every day, meditating once a day. Im factoring in doing things that I really enjoy, making jewellery, reading, time in the countryside, time spent with my daughter and friends. Im even going to try sitting in the sun, which for some reason Ive never enjoyed, but Im pasty white and some extra sunshine would do me good :)

So thats my plan. A bit boring but its here for me to refer back to and keep it documented.

Getting to the giving up photography temporarily, Ive met a lot of resistance from my friends and fellow photographers, probably because they know how much I love my hobby and how it drives me. Maybe they have not realised the severity of how it impacts me in following days. Recently I photographed a gig and some dancers and it left me in a terrible state for the best part of 7 days. Actually pretty much bed bound for 2 days. Compared to attending a gig a few days ago, not doing photography, I was able to get out the following day. Its a no brainer really. Why on earth make myself so ill, just to take a few photos of a band, which turn out poor anyway as lighting is dark resulting in noisy images. Its not as if gig photography is my thing, Im never going to be winning awards with the images. Plus, I realise how much Ive neglected my friends in doing this and I would rather enjoy their company and the band. So no more gig photography in low light pubs full stop, only in places where lighting is enough to allow me to take higher quality images.

As a photographer I have been very driven in my passion, Ive allowed it to seep into all areas of my life. I love what I do. But its so easy to get caught up in taking photos only thinking about getting "that shot", and you miss the magic of the moment. For me, as Im continuing my spiritual and self improvement path, I realise now that Ive been missing out on being "present" in the moment a hell of a lot, as Ive been so focused and driven. So taking a step back is also a positive option for me, I can get to really enjoy all those magic moments for what they are, not thinking about how  compose the best image, how to process it and how many likes or how it might be recieved by other photographers etc. I would rather look back on magical moments that the photographing of those magical moments. So when I pick my camera up again, I will hopefully not keep clicking away, but be selective and remember to live in the moment aswell.

Another positive is that I can focus on creating to headwear for photoshoots that I would like to do, making them completely unique, why do the same as everyone else.
I created the headwear featured below and enjoyed making it.