As part of my proper eating (yes today is Easter day and I have strayed but back on course tomorrow) leaving processed foods behind I am going for the nothing added, more gained, approach.

In the new year I gave up processed foods but I have also veered right away from those sugary drinks plus any sugar unless naturally in food such as fruit.  Having never been a tea or coffee fan – just hot chocolate – I had always drunk sugary squash … I did wonder about my continual thirst and craving for sweet stuff – literally a habit of a lifetime.  Also out is juice!  I will on a rare occasion allow myself a smoothie but only on special occasions – possibly in the summer as an alternative on a hot day.  If I want orange juice then I will eat the whole fruit (minus the skin – find it bit chewy) and the same with apple juice – forget that – I will eat the fruit and drink water if thirsty.  I am becoming a firm believer in letting my body sort out what it needs from the fruit rather than giving it an orange juice sugar rush without the benefits of the rest of the fruit – plus of course whatever the processed system has taken out and then put back in – usually a few lovely additives.

Processed for me will only mean me making something like an avocado dressing out of natural and whole ingredients.

I am not sure but I do feel with all the rubbish and junk my body has absorbed over the years that I may have given myself what is known as a “leaky gut” which may have triggered or worsened the ME.  I have no idea at all if this is true but again with this approach I am aiming to heal my body to give it the best possible chance to heal.  I will explain more about a leaky gut in a separate post with all the ramifications and problems that it can cause.

Part of this process is healing the gut with the right food and liquid.  This includes fermented saukeraut, kefir and bone broth.  The bone broth totally home made with organic previously happy chickens.  A long hot and slow cooking up of the whole chicken including the feet, head and a few other less seemingly yummy parts.  I do feel that somehow I am moving back in time with getting back to basic and real foods.

My aim is to make sure that everything I eat is nutritious as well as tasty plus avoiding empty calories and generally if it is in a box, can or package with more than one ingredient then I am not buying it.

My intake of healthy fats is on the up – lovely grass fed butter, ghee, coconut oils, avocado and the right nuts and a few seeds.  I have noticed when having my scrambled eggs with spinach all cooked in ghee or butter with a portion of organic meat that I really feel satisfied and do not become hungry and therefore do not crave any snacks!

Cutting out grains and cereals has not been a hardship at all.  I had already cut out most carbs as well and was using rye bread in the past if I felt the need for bread.  Happily we are now onto much better things such as banana bread made with almond flour – it is gorgeous – but no I have it as an occasional treat and not for breakfast.

It is also interesting to move away from the convention of eating for breakfast cereals, toast, fruit and juice.  A good breakfast of meat, veg and eggs really keeps me going for a long time.  I am using berries, nuts with on occasion a blob of organic plain yoghurt as a light end of day small snack / meal usually along with the bone broth.  However, I am going to try the bone broth on occasion to kick the day off.

My main meal of the day frequently includes herrings / salmon / prawns / trout / poultry or other meat, a selection of vegetables or salad including watercress, spinach, rocket, lettuce, avocado, cucumber, spring onions – but currently keeping away from tomatoes (part of the nightshade family – another story for another day).  I am ensuring I have a good portion of the fish or meat as my main protein intake plus as much as I feel I need of the salad and / or veg.  Again I have not felt hungry for a good number of hours after with cravings seemingly vanished.  As I have no processed foods I have increased my salt intake with my food but using pink Himalayan salt which offers a range of minerals and again has not been altered.

I have reintroduced eggs and some dairy into my diet plus nuts.  Eggs absolutely no problem at all.  I think I may have a bit of a reaction to some nuts and again am trying to work out with dairy what I can tolerate and works with my body.  Extremely happy that I am happy with eggs as I love them plus a great versatile food to utilise in cooking.  I think the nut problem has been caused by one of my “off piste” experiences so I need to isolate and work through what is going on there.  Again “off piste” with the dairy reaction, so that will take more time and work before I can figure that one out.  Easter eggs today will be absolute no help.

What I am finding I need is to keep reading up on what I am doing, utilising other’s experiences, and incorporating their methodologies when I have inadvertently veered off.  The Whole30 has been a great read and I will be doing 30 days of that regime post Easter.  What I have also found is that I need clarity and numerous lists!  I am a list person who for some reasons writes out, rewrites and even writes out again what I am doing.  I keep an emergency list posted to the fridge door and on my iphone to help keep me focused.

Lacking the ability to exercise (I still desperately miss exercise) does not help, or it could be the ME / PoTS not helping – or a combination of the two.  Exercise helped me considerably with discipline, focus, stress alleviation and overall good health.  Having this taken away from me therefore has robbed me of all of the above.  A bad ME / PoTS day leads to stress and pain, plus more emotion and in turn to bad eating.  Plus with my pre 2014 eating regime I had ridiculous cravings and immediately went for the chocolate “feel good factor” time and time again.

The exercise bit I cannot fix.  I am hoping that at some point – after forthcoming tests – that I might be able to deduce my anaerobic threshold.  I head about a woman living with ME in the US who is doing tiny tiny movements over seconds whilst lying down that maybe moving forward on the exercise front (just not the type known to non-ME people).  At present though my heart rate is too high to even attempt any “moves” on this front.  Time will tell.  I do hope that my recently purchased off road mobility scooter will give me back some of the feeling of exercising outdoors with the fresh air and sensation of freedom.  Just another waiting game as we need an vehicle with a ramp to move the mob scooter!

Sometimes there are days that defeat explanation – although as I ate “off piste” yesterday, then maybe that explains today, or I talked too much yesterday.  If I had tried walking, been over exerting then it would feel explainable but I cannot identify anything that would mean this sort of “flare up”, but this is the way ME can represent itself.

With the ME on occasion – usually for me 1-2 days a week – can be more – I just cannot stay awake and must must sleep.  This morning was one of the days.  The good aspect is that mostly I am not in pain, numbness and tingling all over.  The frequent negative is that I have breathing problems, a high heart rate, heaviness all over and feeling of total exhaustion.

I just about woke up when Chris was getting ready to leave for work, semi conscious of the dogs landing on the bed, brief fight for space and duvet with Ella, then out cold.  I did not wake up again until 1300, knew I must get some fluids in.  That was a major effort as it does feel extremely difficult to move my limbs, horrible dizziness and feeling of about to collapse.  But drank some water, ate a non-Paleo snack and then crashed again until 1730.

Each time I woke up I checked my heart rate – it was between 120-130 bpm, which I then also take as a sign that my body must rest and is struggling.  It is a scary symptom along with my heart jumping a bit, feeling erratic.  Breathlessness is also not pleasant as it is there all of the time I am awake.

I forced myself downstairs early evening to eat.  Now curled up on the sofa and ready to crash and sleep again.

I have learnt that it is best to give in and not fight.  My body is displaying the symptoms desperately calling for rest and sleep, time for healing.  I have no idea what tomorrow will bring, but hope that I will feel a little more normal!!  Fingers crossed.

One of those rubbish weeks where ME is at its worst. This has meant no socializing at all and just struggling to survive hour to hour plus lots of time asleep. It is not fun and I always forget quite how bad it can be. I forget that ME it can be 100 times worse that just feeling “ugh” (one of my more descriptive and polite words). But it does make me think of others bed bound 100% of the time. There is a “sliding scale” for ME on severity. Unfortunately I am in the 20-30 group which is pretty limiting I must say. (An example of a scale at the end of this narrative).

What does surprise me is how many children and young people have ME. Plus more women than men. Goodness knows what causes it but it does make me wonder about modern living / food / gluten (processed, sugar, additives, preservatives) meat (vaccines, antibiotics) / vaccines / life style and the effects that this may have on our bodies … But we do not know. An interesting book “Epidemic of Absence” has suggestions about auto-immune and modern illnesses with our advances in medicine, changes in life-style and effects on our bodies. Plus hence my eating regime – now Paleo following my isolation diet – I am still re-introducing food groups. Dairy next on the list.

I am not sure if this “flare up” is due to the 2-3 days when I did eat sugar and processed foods. Or is it the Qi Gong experiment (which was done sitting down), the few extra steps I took in meeting a friend for lunch … I do not know but the kick back lasts not just for days but is extending into more than a few weeks.

Pacing is considered to be one of the key ways to manage living with ME. This would mean firstly only do 50% of what you feel you can do. From waking up, rest between activities. For example, after showering (using a shower stool), then lie down quietly for 10 minutes, then sit to clean teeth. Sit on a stool to prep breakfast, eat, and lie down for 10 minutes. The problem is that life is not paced. So when we do activities such as socialising or shopping, it is not easy. Pre-empting resting i.e. bed rest for 1 hour before visitors arrive, can help.

Chris has got used to me sleeping in the car – ear plugs, eye mask, comfy pillow and a blanket accompany us on all outings. Thank goodness for the iPod with earphones for Chris and that I have a very considerate and kind fiancé. Family and friends also seem accustomed to my disappearing act to sleep half way through a get together. I hate saying I feel rubbish as it draws attention so I am horribly rude and just vanish.

One of the most unpleasant symptoms is sensitivity not just to noise but it can extend to visual activity. I have found if someone is talking “at me” particularly intensely, then I frequently start to feel extremely ill, and it increases each and every minute, until I have to find an excuse to get away. The pain is excruciating – my personal description of the symptom is of “needles being dragged over every vein at once” – it is deeply uncomfortable and grim. This also can extend to include visual activity –Chris throwing the ball for our dog Ella – I could not bear to be around as it literally hurt me watching. Weird but true.

The onset of ME is scary as other illnesses are ruled out plus no current medical defined indicators to define the illness. Doctors work through ruling out other illnesses. In Berkshire with no ME specialists to help, it is down to individual doctors recognizing and having knowledge of the illness. My main advice for anyone is to read up on the ME Association or ME Action websites and register on an ME forum such as “Foggy Friends”. I found Foggy Friends in the first few months of being seriously ill and it has been invaluable in my diagnosis and working through the next steps, best medication and knowing more about the illness. Having contact with others “living with ME” has made the illness less lonely. I do not know anybody locally who has the illness and would love some “ME pals” just to sit and vent with.

The myriad of symptoms that affect me include:

• Flu type symptoms – swollen glands, fever, ear-ache, aching all over gradually worsening to feeling horribly sick.
• During and post exertional malaise – where rapid downhill slide often starting with the flu type symptoms but developing from the time of exertion, lasting hours, days, weeks and even months. Exertion from standing for 5 minutes, lifting something that is too heavy – moving a large chair, vaccuming, walking up the garden, cooking, shopping … anything to excess.
• Nausea – hate this one as well.
• “Brain fog” where I cannot think clearly, words become jumbled, slow thought processes and a weird type of headache. At worst I cannot talk – that is scary!!
• Myalgia where muscles are painful and sensitive – sometimes where I cannot even have a sheet touching me.
• Numbness and tingling – particularly in the feet and legs – although at present this is all around my mouth. One of non-painful symptoms
• Tachycardia with high heart rate – waking up this week in bed 120 bpm, palpitations and sort of heart jumping. Every minute I stand my heart rate increases way beyond what it should be. (This can be a symptom of PoTS – postural orthostatic tachycardia syndrome – with high heart rate on standing, many sufferers pass out within minutes’).
• Weird headaches.
• Tiredness but extreme where I have to sleep with the worst exhaustion imaginable – not just whacked at the end of a week – I wish!!
• I particularly hate this one – Breathlessness where it feels like I have to force my body to breathe – no breathing through the nose seems possible, but has to be forced breathing through the mouth – feels like I cannot get enough oxygen.
• Sleep reversal, where it is not possible to sleep at night at all – rarer for me thank goodness.
• Problems with temperature control. Feeling freezing cold even when hot for the UK – yes I can be wearing thermals in the middle of the summer or I go to bed fully dressed with thick sweaters plus the electric blanket on full and I am still cold.
• Forgetting – like now I am sure I may have blogged some of this information before, but oh well I cannot remember, I could check but might just post anyway.
• One I nearly forgot – massive cravings for chocolate!! I usually give in but trying to combat this reaction.
• A few of the joys of “living with ME” and absolutely no predictability.

ME severity scale:

100: No symptoms with exercise. Normal overall activity. Able to work or do house/home work full time with no difficulty.

90: No symptoms at rest. Mild symptoms with physical activity. Normal overall activity level. Able to work full time without difficulty.

80: Mild symptoms at rest. Symptoms worsened by exertion. Minimal activity restriction needed for activities requiring exertion only. Able to work full time with difficulty in jobs requiring exertion.

70: Mild symptoms at rest. Some daily activity limitation clearly noted. Overall functioning close to 90% of expected except for activities requiring exertion. Able to work/do housework full time with difficulty. Needs to rest in day.

60: Mild to moderate symptoms at rest. Daily activity limitation clearly noted. Overall functioning 70% to 90%. Unable to work full time in jobs requiring physical labour (including just standing), but able to work full time in light activity (sitting) if hours are flexible.

50: Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity; overall activity level reduced to 70% of expected. Unable to perform strenuous duties, but able to perform light duty or deskwork 4 – 5 hours a day, but requires rest periods. Has to rest/sleep 1-2 hours daily.

40: Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity. Overall activity level reduced to 50-70% of expected. Able to go out once or twice a week. Unable to perform strenuous duties. Able to work sitting down at home 3-4 hours a day, but requires rest periods.

30: Moderate to severe symptoms at rest. Severe symptoms with any exercise. Overall activity level reduced to 50% of expected. Usually confined to house. Unable to perform any strenuous tasks. Able to perform deskwork 2-3 hours a day, but requires rest periods.

20: Moderate to severe symptoms at rest. Unable to perform strenuous activity. Overall activity 30-50% of expected. Unable to leave house except rarely. Confined to bed most of day. Unable to concentrate for more than 1 hour a day.

10: Severe symptoms at rest. Bed ridden the majority of the time. No travel outside of the house. Marked cognitive symptoms preventing concentration.

0: Severe symptoms on a continuous basis. Bed ridden constantly, unable to care for self.

Please, note that “desk work” includes everyday tasks such as sitting at a table to eat or read.