Heart rate pacing and resetting my autonomic nervous system

 

HEART RATE MONITORING TO PREVENT POST EXERTIONAL MALAISE

Recently I have spent time reading about how monitoring your heart rate can help with pacing activities in people with M.E. / CFS - at least with physical activities, possibly not so much with mental, psychological and emotional activities but its a start. There is science behind this and whilst I have read a bit, I have been struggling with my cognitive functioning and reading/taking on board lots of information, so I have just read shorter bits, tried to digest it and gone back for more when I could. Writing this blog is serving a dual purpose both as blog to share but also as a kind of journal for myself, somewhere to keep my information, experiences and progress, so I can put my info together to help me to make sense of things when my brain is struggling to  retain or make sense of things. So I am summarising what I have read and understood here, adding in links for myself and others to refer to. 

A Red Admiral gathering nectar on our Ceanothus bush

Before I start with sharing I want to say that I am not a medical expert and that anyone reading this, intending to try these techniques should  research everything for themselves, look for sound medical evidence if you can find it and discuss with your medical healthcare team ( Dr / M.E. specialist etc) first. I am still reading up around this and attempting to do this all as safely as possible. I do have a background as a nurse and know that I am not doing anything dangerous in the short term - there are waiting times for M.E. clinics and I do intend to discuss this with the M.E clinic that I used to attend, but it could be several months or longer before I can do so. I find that you can generally get good information on this specialist M.E. websites rather than sites designed for people using HRV monitoring for physical fitness. I learned as a nurse that there are many people who have  vital signs and blood results that are outside of normal guidelines, this is not always a reason to panic, but can be a reason to book in a consultation with your health professional just to ensure there are no issues. Guidelines are simply that - guides. I do highly recommend discussing trying any new M.E management techniques with your specialist or dr.

                                                     Love in a mist from our garden 

For anyone new to M.E - we have an intolerance to exertion, even mild exertion ( physical, psychological and emotional) can result in severe consequences in the form of symptoms - generally one of the best known ways to manage M.E is to pace all your activities - literally everything you do - physical, psychological, emotional, all broken down into shorter manageable tasks spread over the day. We are supposed to find our baseline of what activities we can manage daily without causing the worsening of symptoms, this is different for each person and can take a great deal of trial and error to work out. We are advised to stay within this baseline for most of the time and only increasing activities incredibly carefully and slowly, because extra activity can cause symptoms which are totally out of proportion to the activity undertaken.When I mean out of proportion - this can mean brushing teeth or showering can leave a person with M.E feeling like they have climbed Ben Nevis ( a 4000+ ft mountain) or worse. 

Red Campion in our garden

We are advised to "listen" to our body, to help us determine our baseline, so any adverse signs and symptoms worsening should alert us to be aware that we may be pushing past this baseline. Its not easy to do, even after 18 years I still get it wrong. Then you get to a point where you have done well, felt a bit better and in the excitement of feeling semi normal you try to do things that you miss out on doing most of the time, pushing way past your baseline, with awful consequences and "crashes". It has been suggested that heart rate monitoring can help us avoid such crashes, acting as a tool to aid us in keeping within our baseline of activities. This is where heart rate monitoring comes in.

                                                 Red campion in our garden this month

The Anabolic threshold ( AT) is the point at which your heart rate goes beyond the limit where your body starts drawing on reserves which we simply do not have, consequently triggering post exertional malaise and worsening of symptoms. There are several ways to determine your own specific AT using different calculations such as  ones on the various M.E. websites, they do differ slightly. The AT for a healthy person differs from people with M.E, so you do need to work it out using a specific calculation for M.E., it is estimated the people with M.E have an AT that is just 50-60% of a healthy person.  You can sometimes get help to determine your AT through your DR, some people find theirs during cardio pulmonary testing and other tests during investigations into various symptoms that frequently occur alongside M.E, such as POTS. If stuck with this aspect it could be worth discussing with your Dr.

This article explains really well what PEM is, how to calculate AT if you have M.E and using this to help pace and prevent worsening symptoms. Using a Heart rate monitor to reduce PEM

Another article explaining AT and preventing PEM Using heart monitor to prevent PEM 2 There are lots more articles explaining if you google. 

I calculated mine using  different calculations. Results suggested 99, 82.5, 103, 86, 92. I have decided to start out using an AT of 90 to start with and I can adjust this over time depending upon results.

Cuckoo flower amongst wildflowers in our garden this June

At the time of starting all this I had ordered a cheap smart watch to monitor my heart rate as I figured that would do initially, knowing I could periodically take my own pulse quite easily to double check its accuracy. However, as I read more I realised that a reliable chest strap  heart monitor would be a much better idea, this was due partially to reading up on heart rate variability and how this can be yet another tool to assist me. I will discuss heart variability further in part two of this blog as I am still looking into it and wanting to concentrate on using AT first, plus I am also in the midst of a week of cold shower and deep breathing  so cant take on any more. But for anyone with M.E. who is finding this interesting I would highly recommend investigating HRV as well. 

Iris sibirica in our garden this June

The heart monitor I am using is a Magene H64 chest strap (£20) - it has 4 star rating from over 1334 ratings on Amazon so must be reasonably reliable and functional. I have checked the readings against my own pulse taking and found it to be correct each time. Although a couple of times my heart rate recorded on this was 20-30 beats higher than that recorded on my smart watch (which is also reliable up to now), I was not quick enough to check which was correct. There are some issues which can cause a heart rate to be faster than the pulse at the wrist, something I need to investigate. I do have an issue with occasional arrythmias, which has been investigated by cardiologists previously, possibly something that needs further investigation now.

                                                   Iris Sibirica in our garden this month

The smart watch that I am using is a  cheap Blackwatch smartwatch (£20), 4.5 stars reviews from over 5000 Amazon buyers, so guessing its fairly reliable too. Again, my own testing shows its within a few beats when I check my pulse manually. I'm  in the process of trying out a few different apps on my phone alongside the monitors, one for my phone which is Gloryfit - it monitors  sleep, heart rate, temperature etc. For the chest strap I am currently trying 60 beat monitor app where you can type in the heartbeat count where you want an alert to remind you to slow down and rest. I find the alert useful and not too noisy when outdoors. Sweetbeat HRV is the other main app that Im using as it gives numerous readings from the chest strap, including hrv, but I cannot work out how to get an alert when reaching my AT. 

                                                  Stitchwort in our garden last month

There are numerous free apps and a few paid for which can be used. I am interested in a couple of  specific apps, which I'm investigating - WATCHME and Welltory - both recommended by people with M.E. 

 So far this week on days following  where I have kept the total time above my AT to an 90 minutes or less I have felt much less PEM, where on the 2-3 days following  where my heart rate has been over my AT for 2 hours or more I have experienced more PEM and symptoms. Obviously I am only at the start of this new AT led pacing journey, so it will be interesting to see how it helps me. I have discovered that my heart rate frequently seems to be around 120-155 at night whilst sleeping, this can occur for a total of an hour of my sleep/overnight resting time, I may chat to my Dr about this during my next appointment to see if it needs investigating and find out what I can do to help lower it during sleep. I already meditate morning and night, as well as keep stress low, I am unsure what else I can do to help get my sleeping heart rate to normal.

So far this week I have made adjustments based on  when my body reaches its AT, when I brush teeth I go slow, and sit down as it always pushes my heart rate to 120. Even putting make up on, kneeling in front of a mirror takes me to 110, so I now sit on a bed to do it. Showering takes my heart rate to 140-150, so we finally bought a shower stool and I just shower very slowly, sitting down for most of it. Washing or drying my hair both result in major heart rate changes, as does anything involving lifting my arms above shoulder height. I change the position of my arms, trying to keep only hands above shoulder height as much as possible. As its summer I will avoid drying my hair ( unless going somewhere special) if it pushes my heart rate over the AT - be prepared for super wavy hair if you havent seen my natural waves! Walking upstairs usually leads to a heart rate around 120-130, so I go super slow and sit down once or twice as I need to. I am using  a stool in the kitchen more and walking very slowly more often as both help keep me within my AT. Lots of little adjustments

Pep Ventosa style image of Bleeding heart plant grown in our garden

Resetting my autonomic nervous system

Another benefit from getting the chest strap heart monitor is that I can also visually see any benefits from all my work on trying to reset or help my vagus nerve, and push my ANS into parasympathetic mode. For people with M.E. who frequently find their body is permanently in fight or flight mode ( sympathetic in the autonomic nervous system ANS)  it may  be beneficial to try to stimulate the vagus nerve which can in return push our body into parasympathetic mode which is rest and repair. 

Physios for ME are currently researching Transcutaneous vagus nerve stimulation in people with M.E. , it will  be interesting to see results. They also have a video regarding Heart rate monitoring  Physios for M.E on Heart rate monitoring 

There are many ways to stimulate the vagus nerve, but do please take care to look into this properly and take all safety precautions. I have been advised in the past to use various methods to assist with my heart arrythmia, by cardiologists, such as plunging my head into cold water and gargling - both stimulate the vagus nerve. Meditation, chanting and singing, spending time in nature and journaling are all thought to help. 

My morning routine of meditation is largely to help me in this area and does often include deep breathing or chanting. So far my apps rarely show any parasympathetic activity, but when they do at least I will have an idea of what has helped. This last 6 months or longer I have been religiously spending 2-3 hours a day meditating, usually a couple of hours in the morning and some time prior to sleep.

This past week I have also been looking into using a TENS machine to stimulate the vagus nerve as well as checking out cold water therapy, ( cold showers) and the Wim Hoff deep breathing techniques. 

 

I am going to try all of these and have already commenced my first week of cold showers - day 2 today, but I will leave discussing those to my next blog/journalling. 

Next blog - Cold showers, deep breathing. 

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 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.