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.

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.

Im still here. We are not our work, work is only a part of our lives.

No matter how much I try to be positive, its weeks and days like this that are my own personal hell.
Days when all I can manage is to have a bath but then cant dry myself properly, cant dry my hair and have to sit with cold wet hair because there is nothing I can do about it. I was so grateful that my daughter arrived home and very kindly dried my hair so I didnt need to be cold. Unfortunately I look like the yeti after 5 years of not brushing or grooming my hair - dont get me wrong, Im so grateful to have dry hair, but I could not step out my home like this, even if I could walk that far today.

I think I had about 3 spoons today( look up spoon theory if you havent heard of it) and used them all trying to make myself some food, and thats it, no more energy, complete exhaustion. Ive managed nothing else all day.  This is one of my bad days

Ironic isnt it that I applied for disability allowance this year, and was told in the letter that I CAN cook for myself, I CAN bath myself and manage all my hygiene requirements, I CAN/manage to get out and socialise, I CAN manage to walk to public transport and get out to socialise effectively.  Today I cant do those things, how can they say I can when I cant? Some days I can, but most days I struggle to do one or two of those things, never mind all the stuff I should be able to do each day.
I can count on one hand how many times Ive made it out to socialise this year and I rarely see friends or family because I struggle getting ready most days never mind going out as well.  If I want to go out I have to have a bath, wash and dry my hair the day before most of the time, as I usually cant manage all that and getting out ( even on the rare occassion I can afford a taxi). A couple of hours out can exhaust me for days on end.

This week I had to attend an appointment with my daughter, I prepared the day before, so I could make it. I caught a taxi there and the bus immediately outside the building into town. Its been so long since I took my daughter shopping, I wanted to treat her to a mum/daughter shopping trip, but even half an hour on my feet with her, walking minimal distance, left me worn out. I sat down numerous times for rest breaks but it didnt help.  But we made it out for a meal which was nice to do and I made it to the cinema with my boyfriend. Now this was not a great distance to walk, I did struggle, but I did manage it, only just. However, I have suffered the whole week. Today and yesterday is the result from trying to get out for a short time, Exhaustion, mentally and physically. Severe pain in my whole body yesterday, but  not so bad today. I cannot get out, I cannot manage  to cook a meal or do housework, I cant groom myself to a reasonable standard. I cant even walk down the stairs and back to put my rubbish out. Yet I am not entitled to any help.

I am an ex nurse. I was always determined to remain independant with this illness and have managed to for 8 years, but I am not this year, through no fault of my own. My M.E specialist knows how hard I have worked to keep some level of fitness and activity. But I simply cant do that very often at present/ If Im lucky I get one or two days a month where I can actually get out, but I really suffer in the days afterwards. I am furious that in my time of need, I finally give in and apply for help and am basically told that everything I have said is a lie. How dare they. I have numerous Dr and M.E specialist appointments which prove them wrong, but because I rarely visit my GP, because I know there is nothing they can do to help me, I am seen as not needing help. On appealing, and being told a 2nd time I actually had zero points I completely broke down, I did not have the physical or mental strength to fight another appeal. I am, sure many others feel this way and this is how they get away with it. But now I am about to apply again and will be writing a formal letter of complaint re their dispicable treatment of vulnerable, ill people in need of help. Thy do not allow an appeal after x amount of days, but this is wrong, I am going to challenge all that has happenned and I am going to enlist help to do so, as I cant always think straight, due to malaise, fatigue etc. UPDATE I have since read my medical notes and no wonder I didnt get awarded because my Drs neglected to even document how it affects me, my symptoms etc, I have since discussed this with them!

So, I am sorry this is a rather negative blog today, but life is not always a bed of roses. I hate posting something so negative, especially considering how well I have managed for so many years. But, if people like me are not completely open and honest then the general public will never understand what it is like to live with M.E, year in and year out. I have always thought I would be one of the people that would recover from it, and go on to climb mountains again and cycle every day like I used to, not get worse. In 2014 I actually thought I was starting to recover and did really well for a few months.

My experience this year makes me feel like one of the forgotten people, people slowly fall away and stop bothering because I become unreliable due to illness, until in the end nobody at all bothers. I know its not just me this happens to. I truthfully tell family how I REALLY feel, and they too fall away, fed up of the hearing the crap I suppose, and before you know it there is nobody in my life other than my daughter and boyfriend. I see other friends via social networking online that have nobody at home, nobody to help them. The system is so wrong and society has changed, leaving more and more people isolated, to fend for themselves inside their concrete buildings. If you cant mobilise to get out then your pretty stuffed. Its like nobody cares anymore, people are too busy with their own lives, until it happens to them. Such as a lovely friend down south, living on his own, fighting cancer, even he gets very little help, stuck inside, unable to afford simple things like internet or phone, This makes me sad to realise how our society has turned out.

 PLEASE NOTE THIS WAS ACTUALLY WRITTEN OVER A FEW WEEKS AS I COULD NOT CONCENTRATE ENOUGH TO WRITE IT ALL AT ONCE.+

Another couple of weeks further on

Life is strange.
From an early age we are taught to constantly strive to better ourselves, with goals of learning, socialising, then concentrating on a career, finding a partner and for some having a family, and a life where you can fullfill your dreams. Until the age of about 30 I followed this path pretty much, I had a career which wasnt exactly easy, but I enjoyed the challenges it threw at me daily, although I wasnt really equipped for the extreme stresses that accompanied the responsbilities of being deputy matron of a nursing home aged 28, especially as I was coming to terms with losing several members of my family and a close friend over a relatively short period, ( Exit nursing - a 2 month stint working in a chip shop actually enabled me to recharge my batteries then I went back into full steam ahead. I got married, bought a house and along came my daughter. I moved into a senior nursing position and adored both learning and teaching others, loved every moment of being a mum and had a good relationship with my husband - we both pursued our hobbies of cycling, camping, climbing mountains. keeping reptiles, landscaping our garden etc. To some Im sure I had the perfect life, even if I was stressed trying to balance everything.

Well guess what, life doesnt amble along perfectly for everyone. My husband decided he loved someone else, we split, I lost my job as a result, because I would not leave my daughter crying at night with a stranger, then we lost our home as I could no longer pay the mortgage. I was devastated, but such is life, I eventually moved on, tried to start afresh down south, but this did not work out either,  Then along came the bombshell of M.E which took almost 2 years to diagnose properly. At first I was so bad I crawled from room to room, but over the years I had good periods and bad. In 2014 I tried so hard, with sheer determination I went out walking, increasing distances each day, no matter how hard it was or how ill I felt, I tried to walk slowly as far as my body would allow. Within 6 months I managed to walk 7 and 8 miles. Now over the years of having M.E ( from around 2006/7) I had taught myself photography, from home initially, then getting together with a local group on the street where I lived.. I started doing fashion/editorial type images and submitting them to magazines, during 2014 I managed a few of these along with ongoing achievements in both competitions and photographing my reptiles. I wasnt well enough to work reliably for anyone else, so I decided to start my own business in photography - at first running short workshops, doing magazine editorials unpaid to get my work noticed and selling my images to newspapers, books, zoos etc. I only managed to do this with massive help from new friends I made in the area with similar goals and by working from home. I found that if I set up everything for the workshop one day, I managed to run a 4 hour photo session the next day and leave putting everything away until the following day - pacing myself as much as possible. The problem being that this made me ill for 2-5 days after the workshop, still it gave me a sense of pride and made me feel more worthwhile.

So you can see, my goals always remained - I want to work, I love to work, BUT it makes me ill, VERY ill. This in itself does not stop me, I would rather work, 4 hours a week despite it making me ill for days afterwards. It gives me great satisfaction helping others to learn and achieving my goals, However, in 2015 I started struggling more and more and by the end of the autumn I simply could not manage my workshops, I adapted and tried 2 hour workshops instead, but it really wasnt worth putting myself through it. I held my last workshop and last photoshoot that autumn. Come January this year I was worse, so much pain every day, and I have slowly declined health wise since then.

I did not give up. I turned to healthy eating and trying to get out when I could. I had the healthiest diet I could ever even imagine - raw vegetarian food 75% of my diet, whilst trying to persevere doing household tasks and short walks to keep my body moving. I tried taking so many supplements, following advice from  specialists etc and yet despite trying every technique / method I could to try to raise my stamina again, nothing has worked, not even a little bit. Ive no idea why. Ive tried everything and more, than I did in 2014 and yet here I am, mostly housebound and in pain, getting washed or making a meal leaves me exhausted, my sleeping pattern is the wierdest Ive ever known, I have constant sore throats, cannot concentrate most of the time and have become incredibly forgetful. Ive also become very low due to not getting out, not seeing family and not seeing friends ( after moving across the country I had barely started making good friends before my health declined) Now, I am a fairly determined person, I HAVE NOT GIVEN UP and I DO use positive thinking. I looked for a new hobby I could enjoy at home and started learning how to make jewellery - I love making jewellery out of copper, copper wire and clay whenever I have enough energy. So whilst Im not managing to work, Im  learning new creative skills that will be useful when I am well enough to do editorial shoots again, and I can even run a new business selling my jewellery as my health allows.

Do you see what is happenning here?  Im still centered around working as one of my main life goals, even though my health is saying otherwise. Why is this? Why are some of us so focused on working as a main part of life, despite having an illness where your body is screaming STOP? Well, if I work I can pay all my bills, and enjoy life more, go on holidays, treat those I love etc.  As it is, I am forced into the horrible position of claiming benefits for the first time in my life and being made to feel worthless for doing so - yes people really do judge you!!! As I need help at home, at present, my boyfriend has moved in with me - and for this wonderful priviledge of having him helping me to actually live they have cut my benefits by £50 a week, meaning I can barely afford to live, despite having worked hard most of my life, even whilst ill for years. They expect 2 of us to live on a total of £25 more than what I get living on my own!!!! How the hell does that work? It doesnt! And yet, they have deemed me unfit for work but declined my application for disability - even though I am so exhausted following a bath that I usually cannot dry myself all in one go - I need to rest. On explaining drying/styling my hair or making a meal requires me doing it in small steps over an hour or more - one health professional actually said " why is that a problem"!!!!!! Bloody idiot. Its a problem because I am so exhausted from getting ready that I cant go out - his response - well leave your hair and dont put make up on - yeah right, Im going to sit in colder months with a cold head waiting for my hair to dry and go out looking like death dragged through a hedge backwards, thats going to make me feel GREAT. Thanks a lot. Yep, thats about as much help as I get from the local health team. They drum into you, pacing and repeating plus increasing exercise, I already know all that, its what Ive done for years, only its not working now, its making VERY ill! Im an ex nurse, Im not an idiot. Ive done everything they suggest, Ive stuck at it and done my own research and tried endless suggestions and right now Im so tired, Im too tired to think, Im too tired to even switch my computer on most days - its drains me rapidly, I literally cannot stand bright lights or a tv on whilst someone is talking - I actually cant separate the two and only listen to one. If you are lucky, I might even remember your name! Everyday I forget everyday stuff, but Ive learned to hide this. Ive taken medications and supplements until I forget the difference between those and food! The side effects of many medications have been pure hell on earth, my body does not like medications.

So here I am, stuck at home, where the government thinks I should not be, and thinks I will feel better about myself if I work - yes I will IF I actually can work! pretty much forgotten about by my most friends and family because I "look well". I see nobody generally, not even family. Last time I went out I walked around 800ft, sitting resting 3 times pacing myself, I was so ill for days and in constant pain. It was not worth going out for that. If I do go out I need to catch a taxi pretty much to the door and back now and yet I cannot really afford this, so Im pretty much stuffed.  If I sound  frustrated thats because I am, because I have tried so hard, where others dont try even a 1/4 as much in their normal day to day lives and yet they judge! Despite all this I still have my dreams and goals, and I do find enjoyment in life.  My goals are different for now, my main goal is to help my daughter be happy in her life and that alone gives me more happiness than anything.  Ive got a cat now who has become a wonderful companion to everyone at home, he makes me smile every day.

I still dream of simple things like a few days away in the Lake district, which would be heaven, and being able to do very creative editorial photoshoots for magazines ( I have some amazing plans for when I feel well enough again), running workshops again and running both a photography business and a jewellery business. I will do these things. But for now my body and mind simply will not let me, and thats ok. I can regroup, read about history and self development, make plans for the future, watch inspirational videos and enjoy the world from afar. I can enjoy sunrises and lightning from my window and the beautiful photographs taken by all the lovely photographer friends Ive made. Just because I do not live the dream life doesnt mean my life does not go on, it simply means that my body needs rest at present and hopefully I can entice it to climb mountains and cycle in the countryside again given time :) Work is not who we are, only a part of life, as is our health. We are resourceful creatures and we can find new ways to enjoy life. I will climb my mountains again one day and I will do  things I love, whether my body says no or not..

WEEKS ON AGAIN


So yesterday I managed to walk further than I have in months, I was initially quite excited I had walked further, it was not easy but I did it, my destination - a specialist vegetarian restaurant, my first night out in town in over 6 months. I planned going out directly following a Drs appointments - which went appallingly as it was a Dr that simply does not hear what you say. I figured it was worth pushing my limits to have a nice treat, and would be worth the days of pain and exhaustion that would result. So I reached said eatery, totally wrecked, desperate to sit down, but excited to finally be out again and have a nice veggie meal. 
Well plan foiled, on asking for a table for two, in the near empty venue I was told I would have to wait for food as they had a large order in. I said I didnt mind waiting a bit. Then I was told I would have to wait 2 hours!!!!! for food!!!! there were two tables occupied, I was puzzled so asked why. Apparently the table of 13 had just ordered and they cook each meal individually from scratch. I looked around at all the empty tables, on a Friday night in the city centre and was completely astounded at the total stupidity of the way of running a business. By all means make fresh food each day, but this is ridiculous. So, already pushed to my limits physically I walked to a second restaurant, where there 8 choices were so dire that my partner refused to eat there and quite honestly there was only one thing I found appealing as they repeated the ingredients in all the dishes giving little choice. At the this point I could hardly stand and was pretty peed off. Our special meal in town, my first proper night out in town in over 6 months resulted in cheesy chips say outside with the wonderful live entertainment of Newcastles finest drunks. Followed by the bus home, only to be told to get off the bus two stops away from home as there were roadworks, and the bus driver informed us we should know about it as there are notices in all bus stops - well not at the stop we got on. So despite already struggling to hobble along I had no choice but to slowly walk a mile home and virtually crawl up the stairs home. All this with a freshly trapped nerve( for which I bought deep heat patches and applied one whilst out only to discover it didnt work at all) and dizzy as hell as it seems I have labyrinthitis, which my inept Dr did nothing about either problem. Followed by no sleep, pain all night and total exhaustion. Just a regular day in my life then! It has not been a good day. For those that dont know, when you have M.E you need to carefully plan your activity levels and not push yourself too far and it comes back and bites you on the backside for several days afterwards, I can liken the following days to having climbed Ben Nevis and having flu at the same time. 
My other inept medical specialist recently said that if I pace myself and plan things then its no problem - I think I will show him this blog.
Well today is a new day, and Im lucky to be alive and have a home, Im lucky I dont live in Haiti (STORMS IN HAITI). Although no so lucky to have inept Drs, idiots running the main local veggie restaurants, a transport system that cant manage to communicate with their passengers leaving them in difficult situations with no warning. At least the street entertainment in Newcastle made me chuckle. Thats todays rant over, for now...

Worsening symptoms and my continuing battle

So Ive not updated  as Ive simply not had much energy and also I prefer not to concentrate on the M.E. I feel that some people concentrate so much on their illness that it rules their lives, well unfortunately the M.E is restricting and affecting my life so much that it IS ruling my life, Ive lost all control over it.
Following my last appointment with the specialist we decided I would complete an activity diary to see if that helps to identify any problems, also Ive was advised to read a book called Fighting Fatigue, which also suggests many ways to balance out activity and rest levels. I have identifyed the fact that I dont factor in rest properly, I rarely rest at all, I find I get incredibly bored by resting and doing little as Im more of a "doer", So I am working on trying to factor in short periods of rest between short periods of activity. The book also talks about swapping between physical, mental and social activities, and only doing what you can manage of each one with making the fatigue worse, taking a rest break then alternating the next activity to a different type. So I am trying this too. I have an appointment with the specialists later this week to look more at a plan to help me take control of the M.E.  Yes, apparently the key is me taking control, hmm easier said than done as when there are things that need doing in life and events I would like to attend, that immediately uses up every ounce of energy and always results in several days of me being even more ill. So whilst trying to avoid the boom bust trap, normal life causes that to happen because I manage so little at present. I will discuss this with the specialist.

Im also seeing my GP again, Ive had an ECG and bloods, Im vitamin D defficient but otherwise bloods are normal. However, I am experiencing an irregular heartbeat several times a week, up to 4 times in a couple of hours, also my feet and ankles are swelling most days, which suggest a possible heart problem. So I will see what happens next with the GP.

Symptoms wise Ive never been worse. Its why Im awake typing now, Ive had 1 hours sleep, woken by pain.I went without pain relief yesterday, possibly foolishly as I walked a very short walk, and tried to do a little photography. I was already in pain the entire day yesterday - a hot bath with epsom salts helped loads and distraction helped a fair bit. But my extra activity knocked my pain levels up from about 5/10 to 7-8/10 all night. Ive taken paracetamol with no effect at all, but really dont want to take codiene - I just dont want to end up addicted to it. So Im running another hot bath at 6am :/

Im experiencing symptoms Ive never had with M.E before - gastro intestinal problems, food intolerances possibly, Im not tolerating foods well, its like having irritable bowel syndrome. Im experiencing frequent headaches, sore throats, a complete intolerance of temperature changes, sometimes sensitivity to light and frequent sensitivity to noise - I frequently cant talk or listen to someone with music or the tv playing. Most of the time I prefer complete silence and often struggle to hold a decent conversation. My brain isnt functioning properly, Im incredibly forgetful and cant find the words I need to use. Sometimes I can manage reading and have struggled to work out puzzles recently. I feel muddled sometimes and Im struggling to learn new things. Nausea.  A constant feeling like I have the flu. Ive virtually lost my sense of smell and have had a feeling of inflammed sinuses on and off for months, now my sense of taste is also extremely diminished - this might not sound important, but when you feel ill and cant get out, losing the sense of smell and taste seriously reduce enjoyment of the simple things like a nice bath bomb, cream or perfume and Im gutted I cant taste my favourite meals so much now. This is how Ive been for the last 3 months,

Im normally fairly positive and find things to keep myself occupied whilst I have less energy, but 3 months of this constant, fatigue, pain, and all the symptoms above has worn me down, so Im feeling low in mood too. I sat and cried this morning, simply because I feel so ill - Im trying to fight it but fighting it takes so much strength and makes me feel even iller, so its harder to find the motivation - but Ive not given up. Im strong minded and stubborn - which is how I got to walk 8 mile walks in 2014. Only I know its going to be a long, slow hard slog. I find myself accepting help more often lately because I dont have any choice - thank God for my boyfriend and daughter - without them I do not know how I would have got through this last 3 months.

On a positive note I have got out to the local quiz this last 5 weeks, its only about 800 foot walk - which is often a struggle, but Ive managed it. Last week I could barely cope with the music playing and the guy asking the questions - I couldnt think straight and it took me forever to complete about a third of the written questions/puzzles than I normally would, but we won, for the 4th time in 5 weeks amazingly. I also had my first proper night out to see a band in months, I enjoyed it but not as much as usual as I wasnt up to parr, luckily the bus stops right next to the place I went, so virtually no walking helped me get there. Im hoping to make it back out for my birthday in 2 weeks  with a few
friends.

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After hot bath, totally exhausted from drying myself and getting dressed, but my pain has reduced in most areas of my body to about 3/10 with is a relief. Now resting.

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Urgh, that last 10 minutes after my bath, the pain has returned right back up to 8/10 in my arms, wrists, shoulders, neck, upper chest, upper back, but only 2/10 in legs, hips, lower back. My nursing experience tells me its silly to continue with the codiene, so Ive taken the 60mg for today. ( Im prescribed 1 dose a day which is so ridiculous - if I have a good month then I just manage, but this is a very bad month so far and I will be lucky if they last 3 weeks - I must discuss this with the Dr.

Back to resting. Too tired to think to type and stupidly its taking far too much energy to even type, grrr.
I will leave this on a positive note, I took photos of my frogs yesterday, I set up slowly over a few hours used fresh moss to make a mini makeshift pond.
Here are the resulting images, no editing, theyre straight out of camera.
So, even when you are feeling dreadful, you can  do something positive - my photography is my silver lining in this currently rather moody dark cloud of an illness.

M.E Awareness week

Ive only just realised thast it is M.E awareness week and wish to share this great informative article based around fact versus fiction.
M.E article

It really is silly just how many people do believe M.E is all in the mind. Time for a mini rant.
All my life I have enjoyed being VERY active. Up until 7 years ago I cycled or walked almost everywhere within 15 miles. I worked 12 hour shifts as a nurse, I enjoyed decorating my home, loved gardenning and loved nothing more on a weekend off than to pack up and go to the Lake district, camping and hiking, pushing myself to the limit and climbing more hills each time. Life changed a bit, I moved, got divorced and changed jobs, but continued to be very active right up until the week before the M.E hit me hard, hiking and snorkelling on holiday on Bali. Then suddenly I could barely make it up one flight of stairs, I often had to stop twice, or ascend a couple of steps at a time on my bum. I couldnt dry my hair with the hair dryer, struggled to hoover one small room or prepare a meal.
I did not take this lightly. It took 7 months before my GP  agreed with me that it may be M.E and I was not referred to a specialist and got very little information, my doctors were pretty poor to be honest. It wasnt until a good couple of years on that I actually had a consultation with a specialist, resulting in several further appointments with an Occupational therapist. Overall the amount of input from the NHS has been negligble and pretty poor. I have learned more and helped myself more by researching the condition, keeping up to date, talking to other suffers and by learning how to pace my activities.

The single most frustrating thing about having M.E for me is not being able to be active, I miss cycling, hiking, swimming, pushing myself to my limits by trying to cycle a route faster each time. Now, although I have adapted, I still get frustrated as I have learned new skills and have new dreams, yet because of the M.E it is incredibly difficult to make those dreams come true. i have so many wonderful ideas that I want to bring to fruition, but I can only manage them very slowly and often with some assitance from friends or family. If I did not have this condition then life would be so different, my determination would take me far and I know that I could achieve so much. As it is I still have that stubborn determination and will just have to plod away slowly at my goals.

I openly welcome anyone who does not believe that M.E is a physical illness to come and spend time with me, see me on my good days and my bad days. See the sheer determination it takes to get through just half a day of what any well person considers an average day and then observe the effects over the following days, then look me in the eye and tell me I am lazy!

rant over for now.....