Dietary update - energy levels, explaination of my symptoms of low energy/exhaustion

Week 1 of 8 on the Plant Paradox diet

So its been about a week since I started the Plant Paradox diet advocated by Dr Stephen Grundy. Ive been having green smoothies for breakfasts, wild caught fish plus allowed vegetables such as spinach, roasted cauliflower, fried onions, mushrooms etc, plus nuts ( macadamia, pistachio, hazelnuts) and using avocado oil for cooking boosting fat/calories, drinking herbal/fruit teas ( no sugar).

Ive continued with my regime of looking after myself, listening to my body, getting good sleeps, drinking plenty, pacing everything I do carefully, resting as needed, accepting help/asking for help when Ive needed it, keeping stress levels low, taking all my supplements/vitamins but omitting D Ribbose for a couple of weeks.

So far the only noticeable change is that I have increased clarity in thinking, my brain fog is massively reduced in the last couple of days - now this could be a coincidence or down to my new diet and all the other measures Im putting into practice. I will keep monitoring daily.

I am still experiencing all my other symptoms and my body is continuing to struggle. My energy levels dipped even lower - to rock bottom for a few days after starting the diet - this is hard to explain but  when my energy levels are at rock bottom and I try to do something simple such as brush my teeth - I get totally exhausted and the muscles that I am using for the task feel painful, like a burning feeling, but also as if they are not getting energy/oxygen to the muscles Im using. I feel mildly breathless and unable to complete the task - having to stop quickly as my muscles /limbs cannot function. Its really hard to explain this feeling to anyone who doesnt have M.E. - yes it is an exhaustion/fatigue but unlike any exhaustion Ive felt prior to having M.E.  The only thing I can liken it to is when I used to go hiking and climbing mountains or cycling - when I would push myself to my limits ( I did this a lot as I wanted to cycle fasted each time) - at the moment of pushing myself past my limits I could quite literally feel the burn in my muscles - when I ran out of energy/fuel/was getting hungry etc I could feel this in my muscles - I could feel a different sort of pain in my muscles - whether it was overuse, lack of energy because I had burned all my body fuel - so was hungry/thirsty needing to eat/drink, or I was so out of breath that oxygen wasnt getting to my muscles enough. Possibly all of those. But that burning /aching feeling and difficulty in keeping going because of lack of whichever fuel is very very similar to the feeling I get with M.E. when my energy is low - but through careful pacing and all my management techniques Ive managed to help reduce this feeling, despite incredibly low energy levels. My energy levels are always low since having M.E, but this last 18 months or so of relearning more pacing techniques and being stricter in sticking to my regime as resulted in my energy levels being more of a 15-30% level instead of the 5-10 % that I get when I cannot manage anything. The 5-10 % is where I estimate that my burning /minimum energy levels cause my most of the exhaustion and inability to do simple tasks. So I feel starting this diet has knocked my energy levels back down to the lowest they have been again.

However, I listen to my body carefully and I know that my body functions better on higher levels of animal protein than the 3-4 ounces that Dr S Grundy suggests in his dietary plan. His plan isnt created with people who have M.E. in mind its to help people with many illness and is not specific to energy levels/energy manufacture - where as Dr Myhills paleo keto diet which encourages higher amounts of animal protein and fats is specifically aimed at helping M.E. patients to produce energy more efficiently. So given this reasoning, plus my nursing knowlegde and knowing during healing our body's require more protein, I decided to increase my animal protein intake to twice a day - double what Dr Grundy advocates - I started eating closer to 200grams wild caught fish each day and within 2 days could feel some difference - I need to monitor this carefully and observe how my body responds whilst keeping everything else the same.

After the 3 days phase one I moved into phase two of the eating plan which allowed me more food choices and I follow this for another week, after which I can also add in Olive oil and coconut oil - the extra fats will hopefully give me more energy. I am looking forward to that. I remain in ketosis - tested with urine sticks daily.

I heard today that my aquaintence who largely recovered with this diet is eating a mostly normal diet now although gluten free, and is living a normal healthy life still - this gives me so much hope. So I am sticking to the plan for another 7 weeks - and evaluating as I go.

As usual I like to round off on a positive and add in my positives for the week. This weeks positives - There were a couple of articles about me, my photography and how it helps me to cope with M.E. on the Evening Chronicle website ( well written I thought) and in the Sunday Sun newspaper. It is myy are f hope that my story raises awareness of M.E. and also that it gives hope/inspiration to those with it.

I submitted a bit about my story to the M.E. association and heard back that they are going to share my blog on their website, they already shared it on their facebook page. They also replied to say that they will include my story in their publications for M.E awareness week in May. Im particularly happy about this - its good to be involved and to help with raising awareness.

I got to spend a half hour photographing my favourite flowers this week - Anemones - Anemone mistral pastel blues and I have some some Anemone neros to photograph in the coming days - Im trying to keep them cool enough to last a week so I can have a couple of short sessions photographing them.

Yesterday I did something I rarely manage these days - I baked cakes! My partner set a high stool in the kitchen for me - I gathered the ingredients ready on the bench the previous day and my partner grated a couple of carrots ready for me. I made carrot cakes  - but following a recipe in the Plant paradox cookbook - theyre not bad and its nice to have a snack type food.  It might not sound like a lot making some simple cakes - all I did was weigh and mix the ingredients - but it took it out of me. But its a little achievement, its nice to actually manage something with an end result and nice to contribute to making food - not that I will do it often whilst I am like I am at present. I only manage doing something that uses that much energy about once a week or fortnight at the moment, but it beats sitting on the sofa!

Positivity

I believe you can turn around negatives in your life and make positive things happen, Ive always believed this and so I have been looking at how I can make positives in my life despite my recent relapse and associated struggles. The first thing that has struck me about having such reduced mobility is how surprisingly, despite living in a country with good transport networks and modern approaches to making transport and facilities accessible for all, just how difficult it can be for a disabled person to reach a destination easily and be able to find facilities that are accessible. With my hobby of photography I am already encountering difficulties holding my camera and the energy to take more than a few shots, made worse with bursitis, I thought there must be others who have the same or similar problems. There is no local group for disabled photographers, so I have started a group to enabled disabled photographers on facebook and hopefully over time we can help each other, share tips, knowledge etc and build a local resource to help disabled people in the area. Members are already stepping up to help determine accessible photographic places to visit and we are looking to create  information files with tips, adaptions, locations, useful websites etc. I am currently looking at transport and planing to contact a local disability group to start a conversation regarding approaching transport companies about improving access for disabled people. So this is a huge positive step and something for me to concentrate on and hopefully together we can make a difference. I have been pleasantly surprised by so many lovely warm hearted people deciding to get involved with the new group and look forward to making some new friends through it too. Anyone wanting more info do search on facebook for Enabling photographers with disabilities  UK.

So this last few weeks has brought with it new stresses - I decided to apply for PIP as I genuinely struggle with many activities of daily living. I had read that it is not an easy process ( and I have applied before )and that many people get turned down despite having genuine difficulties and illnesses preventing them from living life as an able bodied person can.  So I have done my research. At the same time, by coincidence I am having my ESA reviewed so have also had to complete a long form and gather evidence to back up this claim.  Evidence is so important to both of these claims yet it is a nightmare to obtain at times - obtaining a copy of my healthcare records did not happen in
enough time because of GP surgery protocols and the fact that I only recently joined the practice -
they did not wish to give me access to records prior to the date that I joined, despite me quoting the latest legal requirements, it took 3 members of staff to work out how to proceed. So instead I ask my GP to write a supporting letter, she refused saying that GPs have been told by the DWP NOT to write evidence letters but to complete a form that will  be forwarded to them. The DWP dont employ GPs! I know last failed attempt I made the receptionist simply sent a patient summary which did not contain the necessary details. We are told by the DWP to obtain medical evidence when they are telling medical staff not to write it. Frustrating.  I do however have a supporting letter from my physiotherapist, who kindly helped me to go through the forms.

It is a worry that my ESA claim will get turned down and I will be expected to work even though I am barely managing self care and struggle to leave home without assistance. The DWP really make ill people jump through hoops and Ive read so many accounts of peoples benefits being stopped when they are barely managing to look after themselves with M.E and similar illnesses. Ironic that this has come at a time where I am at my worst and hence applying for pip. The evidence thing is a joke, we are taught by M.E specialist teams how to self manage and once taught we are left to our own devices, often with little support. As this illness can go on for many years this means we often don’t need to see health care professionals for years unless symptoms or severity changes. This makes the task of getting evidence very difficult. So the worry and stress of all this also negatively impacts M.E and symptoms in turn making my symptoms worse. It’s a frightening prospect knowing how often the DWP and their assessors mess things up and how people get essential benefits stopped or reduced incorrectly- and end up having to go to a tribunal which can take a year or longer to get sorted out. 70% are overturned- yes the courts eventually rule the dwp have cocked up in 70 % of cases going to tribunal - how shocking is that. I certainly don’t want to claim benefits - I want to work. I did not claim benefits for the first 9 years of having M.E. and since then I tried working  from home but ended up making myself even more ill to the point that I was housebound for pretty much 28 days a month. Even now I still look for some kind of work that I can do from home so that I can feel more fulfilled, earn for myself and to feel a more valued member of society. Even though I know I can’t possibly earn enough to live on and that whatever work I do will have a detrimental effect on my health. For now I’m trying to put it out of my mind.

 Celebrating the positives- lately I manage a lot less independently, needing help to make meals and to get out, and pretty much 5/6 days a week are spent resting at home as I’ve no choice. But when it comes to getting out for the couple of hours that I can manage once or twice a week - I’m in a wheelchair or on a scooter and I do try to create opportunities to do what I love as often as possible - usually involving photography - as the rest of the time life can get pretty dull sitting at home. So for 3 years I’ve been learning and practicing gig photography - often about once a month or every other
month, but in good spells two a month. I’ve been very lucky as I’m one of a couple of photographers who gets to photograph 18 bands in our local O 2 arena over the Christmas period- spread over 3
nights - I’ve only managed all 3 nights once out of 3 Christmas’s though.

 My ultimate aim was to eventually photograph my favourite 3 bands one day. Well I cheekily wrote to Hawkwind with my request and couldn’t believe my luck that I got the gig which was amazing, so I’ve down 2 to go. The next two are more difficult as they only allow photographers who get their work published- so I applied to several media outlets and got turned down las they all have numerous photographers. So I decided to turn my hand to writing reviews and wrote a review of the last gig I photographed and submitted it - yesterday it got published which is a great feeling. I wasn’t sure the review  was good enough, it was a struggle to write as  I can’t concentrate for long and have problems forgetting words etc. I also have to limit time spent on a computer to an hour  - 2 hours maximum.  So writing a review or article needs doing over days, not  in a hour like most people would do.  The website staff are happy for me to submit more reviews, interviews and photos, so I have a gig this week with two bands where I will attend in a wheelchair with help and take a few photos plus write a review  and in December I’m interviewing and photographing the Quireboys.

The other two bands
 I want to photograph are both touring soon - Doro Pesch in 3 weeks near me , so I’ve asked if I can have a photo pass if I can get my work published- and it’s a yes if I can get the editor to confirm publication- so now I’m waiting and hoping that they want a review and photos of Doro and Saxon who they are supporting. Fingers crossed - so close to one of my dreams happening.

My 3rd band is Def Leppard and it’s the same situation - I need confirmation that I can be published- so exciting - I’m hoping the website editor wants these too.

It may sound like a lot of work photographing a gig but for most you only get to photograph the first 3 songs so it’s not too bad. I’ve been doing it from my wheelchair lately and just standing or walking for minutes at a time then sitting again. It is tiring but the adrenaline seems to help push me through those few minutes. I’m lucky that I can cope with the noise and lights. Although in days after I like a lot of quiet 🙂

I’m also working on writing articles to get published in photography magazines - as I can’t do as much photography most of the time I can still try to get my work published. It could be an option for paid work from home if I can manage it, and there aren’t exactly a lot of options for paid work when I am pretty much stuck at home forced to rest 5/6 days a week.

I wanted to share this because I feel it’s important to still have goals and dreams in your life - yes we have to change our goals because our bodies misbehave, but if we adapt and dare to dream we can still make things happen. I know I tire myself out more by doing a gig each month but to me it’s worth a bit of extra pain and symptoms when no matter what I do when I go out for two hours I end up with worse symptoms anyway.

Here is a link to my first review https://www.gigsnortheast.co.uk/latest/review-big-foot-12-10-18-the-cluny-newcastle/