Total confusion, boom or bust.

 This last weekend I took up the offer of a lift to go away with a friend and a group of strangers, all into photography and night skies, in a farmhouse, at a remote location in Northumberland connected to Hidden Northumberland website.  Now knowing how little  I have managed of late I knew that I could end up spending most of my time sitting in the wild forest garden, instead of getting out, but to me that is my idea of heaven so I went.
I'm so glad I went along,  the location is set high up in a small clearing within a forest, views over hills and trees surrounding a pretty farmhouse, just perfect. There were a couple of options to stroll along pathways winding into trees of varying species, one on reasonable flat ground, which offered me the chance to stroll  amongst the wonders of nature at my leisure as little or as much as I could manage.

 Two lovely people gave me lifts to 3 locations over the course of the weekend, which enabled me to take a multitude of photographs of different subjects, including wild mushrooms, landscapes and night skies, all within 2- 400 ft of the cars. The result - about 500 photographs and a thoroughly enjoyable weekend getting to make new friends.  I'm so glad I went. I managed both days without too much in the way of symptoms which was a surprise given my last outing ( although I was in the position of having to walk miles last time I was out, with little choice other than pay taxis)

Monday came and I only had a little pain and stiffness with very mild malaise, and my usual tiredness - no other major symptoms. Tuesday a little brighter, no pain, slight stiffness, no malaise, functioning psychologically better than I have in months, less tiredness, no malaise, no other symptoms. Usually all symptoms occur within the two days following activity so I was thrilled and paced my activities on Tuesday adding in two small extra tasks and feeling not too bad.  I made plans to go on another short woodland stroll to photograph the seasonal fungi and for a two day trip to the Lake district, sure that I was in some sort of remission.

Today is Wednesday, I woke early to rise with my daughter who attends college. I could not wake properly, it took me 15 minutes to get out of bed. I was confused and my mind feels like it is wading through thick fog trying to function but being unable to think properly. I am exhausted to the point I have only managed to walk the length of my flat and back twice for food and bathroom necessities. My entire body is so stiff and literally every muscle hurts ( from muscles in my fingers to my face and limbs/back etc) My ankles, wrists and fingers feel incredibly stiff and although the feel tight/swollen they are not..  Answering the door to a repairs workman was so very difficult as I had to hunt for the words I needed quickly to reply, but was unable, luckily he was very understanding, I must have appeared like a drunk person, holding onto walls as I walked

.

So it seems its just taken longer for the effects of the extra activity to affect my body, although this is highly unusual for me. Its so confusing, I just never know how my body is going to react or precisely when. I actually had hop on Tuesday of a sort of remission, hopes now smashed into smithereens.
Today I have no major tasks I need to undertake, although I do need to make the  long walk to collect my bin ( we have to wheel our bins about a quarter of a mile for collection due to lack of road on my street) there is no way I can manage that, I wouldn't dare attempt walking down the two flights of stairs, as I would have to virtually crawl back up and communal council flat stairs in this block are not exactly clean :/

My pluses this week - I got out and had such a lovely time, met new people, learned all sorts and spent much needed time outdoors amongst nature, not to mention the photographic opportunities were great.
The negatives, well its pretty much resulted in a boom /bust effect, even though I tried to take it easy. So I now have to endure x amount of days relishing to wonderful symptoms this silly disease throws at me and I cannot go out until my body is up to it again.

I do not regret going, I would rather have a lovely weekend and suffer afterwards any day. As a patient I am, advised to avoid boom bust cycles at all costs, and yet every single time I go out anywhere I am caught in that exact cycle. It is complete unavoidable if I want to have a life, no matter how much I plan and pace, it is simply what happens. I am told to pace my activities and cycle through short periods of psychological activity, then physical activity and rests. In real life it can be virtually impossible to do this. If I go out to meet a friend for coffee say, this entails using most of my energy getting ready so I feel presentable. Drying my hair nice is usually the nail in the coffin here, if I do this I often end up too exhausted for hours afterwards. It is the activity that steals my energy most for some reason. But M.E therapist suggests I simply leave my hair to dry and go out - well my answer is that its bloody cold sitting with wet hair for a couple of hours at this time of year and the result is bloody horrifying for me, it goes wavy and frizzy which I hate, I look like I've been dragged through bushes, its not presentable and not nice, who wants to go out into the city or where ever feeling they look awful, not me. Mostly I have no choice, I dry my fringe and let the rest dry whilst the heating is on, its fine whilst at home or say the weekend I've just been on, but not for going out with friends in town. I'm sure most women will understand. I am not being vain, I simply like to appear presentable  if I go to town. My therapist did not understand and decided I should see the psychologist!!!! Anyway, once I'm ready to go out and have rested, its a good walk to any public transport and it often doesn't turn up on time, which can mean at least 30 minutes walking and standing waiting, I get 5 minutes rest on the bus and a walk at the other end. I can sit in the cafe, but its not restful, then comes to lovely psychological  exchange, which I cant exactly say to my friend that I can only talk for 10 minutes then we must stop and rest for ten, that's absurd. Not to mention trying to actually concentrate on what the person is saying and find my own word with all the hustle and bustle, plus music going on - I imagine most people are not aware of how this can be a problem, but there many are times when I cannot listen to a person and hold a conversation with music playing at the same time, my brain just cant seem to separate the two sometimes. This can be frustrating as I really love music, but I have even had to stop attending our local quiz and nights out because of this one issue. If the music is loud and a table full of people are chatting next to me there is now way I can concentrate on a conversation or answer quiz questions.  Now back to my afternoon out, once finished chatting there is the walk to the bus, the wait and the walk at the other end. All this put together completely wipes me out, often for days. Its impossible to factor in proper rest and alternating types of activity as suggested.  I may appear well whilst out, but if any of you saw me today you really would get a shock. So, I don't go out very much, unless its something I really really want to do that is worth days of symptoms and struggle to even look after myself.

For me, the boom bust cycle is simply the only way I ever get to do the things I love, and after 9 years of trying every suggestion thrown at me by experts, other people with this condition  etc and nothing working, then  I have no choice but to simply continue trying to pace, and going for bust for the sake of actually enjoying myself. Although I do keep this to a minimum..

Other pluses this last week, I got more images  awarded by the National photographic society which I'm really pleased at. Its autumn and the colours are finally starting to show, so I'm itching to get out to stroll through trees again :). I have the opportunity to go away to Northumberland again if I can find someone else going from my area who can offer a lift. I made new  friends even if I cant get out and see them, I can chat online. I have lots of photos to edit and share. I enjoyed mushroom spotting for the first time in years - I used to spot mushrooms and identify them on lake district walks over 10 years ago, so an old interest rekindled. Whilst the weather left a lot to be desired this weekend I still grabbed the opportunity to take night sky photographs to include a lovely wild landscape, something I would love to do more frequently,

Enjoy the rest of autumn everyone, its my favourite time of the year with all the colourful foliage, berries and mushrooms.

Climb your mountains, in your own way. Make things happen, you can make a difference.

So after a pretty miserable weekend, symptoms wise I can happily say that I am proud to have made a difference to other peoples lives this past weekend.  So despite the fact I could barely look after myself and suffered one of the worse weekends in years I made good things happen, I facilitated positive, social, learning and creative experiences for 11 people directly and more online.

(pic of me on the summit of Great gable in the late 90s)

You see it is possible to help others enjoy their lives and discover new hobbies, no matter how dreadful you are feeling yourself.

If you havent read my previous two blogs then I would urge you to do so.


Some of you already know I have hobbies which have helped me focus on positive ways forward in a life where having M.E stopped me enjoying the job I loved and previous hobbies of hiking mountains, cycling, camping, gardenning etc.

( me on the summit of Aonach more, hill next to Ben Nevis, late 90s)

I call these hobbies my silver lining in the dark cloud that is M.E. as the experience forced me to find new interests which I may not have considered previously.  The main hobby has been photography which I undertook at home becauze I struggled to get out. I was given a camera as apresent and decided I would switch off all the automatic settings after only 2 weeks and learn to take photographs from scratch. I decided to challenge myself to photograph things at home such as my pets, water droplets and flowers. I had no special equipment, just a standard kit lens and house lamps to light my subjects but it was great fun to learn. It wasnt long before I tried monthly challenge s and competitions online, and within two years I was in the top ten on one websites competition leaderboard.

(pic of me on my way up Sca fell summit late 90s)

Over the years my photographs of my frogs started getting attention. A local camera club asked me to join them to give a presentation and talk about my images. They then asked me to run a practical session helping their members take photographs of my pets. I was still very amateur. Then the UK press got wind of my images and story if how photography helped me cope with my illness. I ended up published in almost all the national papers as a result in 2010. Followed by a interview on tv.

I saved and bought low budget equipment and was bought lenses as presents. As my condition allowed I joined the above camera club and a local group called Bristol strobists who helped me learn portraiture on the very street that I lived. Through that group I learned so much and managed to socialise, I gained tonnes of experience too. The results were getting my images published in magazines and doing well in competitions.  I was even runner up in Pet photographer of the year with the SWPP for 3 years.

(Two images I took on my first ever group photo shoot with the Bristol strobists in 2010)

(Recent images published in 2015)

I moved away from Bristol almost 3 years ago and managed a few photoshoots up here in Newcastle, started my photography business running occasional photo days, continued to get published and do ok in competitions. By the end of 2015 I was struggling to run workshops and making myself ill from photoshoots. Ive not managed either for a year now. 

However, I want to get back doing shoots and Ive pursued competitions whilst less physically able. Ive had 27 images highly commended and winning Gold awards in The NPS competitions this year, which Im very proud of.  

Aurora image taken at Whitley bay 2015

So I was chatting to other photographers online in the north east and many expressed an interest in trying portraiture, some had no experience, a few had a little exp and other quite a bit, and I thought why not set up a group similar to the Bristol strobists group , where people get together to create portrait images, to network, socialise, learn, share, produce portfolio images and work on portrait projects - all free of charge. A friendly, helpful group. So I started a group on facebook, within a couple of weeks numbers were at over 200. I decided to take the bull by the horns and arrange a photoshoot. Its not been easy finding other creatives, particularly models as locally they do not appear used to this concept., However after about messaging around 20 models I found 3 available the day we wanted the first shoot, who wanted to collaborate. One couldnt make it at last minute, but this is one of those things that does happen regularly in this industry, almost always one model drops out or does not turn up. On the day there were 10 photographers and 2 models, a little unbalanced but Im sure we can address that as the group grows, The results are some lovely images and a bunch of people that enjoyed themselves. Most want to do this again and have already taken part in conversations regarding the next shoot and how we can organise things better, which is fab. I could not attend the shoot this time due to the M.E, but I am hopeful I will manage to attend some. But what I can do is help organise and facilitate something positive for other people, and take great pleasure in seeing the results, and hearing how everyone enjoyed themselves.

The two images below are by one of the photographers who attended the photo shoot, Cliff Soden, who really enjoyed himself and told me he learned a lot. The model is the lovely Loren Jessica Evans, who modelled with her sister Paige Evans, accompanied by their parents, who were pleased with how everything went.

The image below is by photographer Alan Wennington from the photo shoot on Sunday of model Paige Evans.

So what I want to say to other people with M.E, Fybromyalgia, or other illnesses is that you can still make positive things happen in your life. You can still be part of society even when you cant leave your home. You just need to find a way. That way will be different for all of us and we may need to adapt, but it is possible. We just need to be open to it. The way forward may not be the way you want at that time, maybe simply a short term thing whilst working on longer term plans, it may not be clear to you either - ask your family and friends for suggestions/ideas and help, and you will find your own positive paths.

who turned the clock 50 years forward.?

I swear I just missed 50 years of my life over night. Today is without a doubt just about the worst I hav e felt with this cruel illness in 9 years. I have just struggled to walk the length of my hall way to get a drink. Im walking like a person crippled in pain and with stiffness of arthritis. I do not even care about tge pain though, just about being able to do enough to look after myself. I need food but there is no chance in hell that I can stand long enough to cook. Unfortunately I dislike most vegetarian ready meals. I like home cooked foods. Oh for a Sunday lunch. No such luck. Im wishing I had bought the high stool for the kitchen now along with getting a fold down piece of bench. At least that would enable me to prepare food and sit down to make a sandwich etc. I must adapt. The
My long soak in a hot bath last night and anti inflammatories have not helped but I will try another bath.
back to bed as the exhaustion is overwhelming. My throat feels like sandpaper and Im too tired to think. Its like having tge worst flu ever without the high fever.

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...

Acceptance and turning point - some deep realisations

eI saw this on someone lse's profile today and it touched me, as did their words elsewhere - thank you to that person. Little things have happened today to remind my to really try to embrace and accept life as I am and not to constantly focus on trying to get better when it may not happen. It is a hard thing to accept your bodies restrictions when things change and you simply cant do the things that you could do just months ago. Especially if you are a driven person like I am. But Ive been wasting energy on focusing on my illness too much, constantly trying to get better. Yes, I want to get better or back to how I was before this years "relapse" and its perfectly normal to want to push forward, and our society in many ways expects people to push forward all the time. We are encouraged to better ourselves all the time, we are encouraged to think that you need to work to be a well rounded and valued person, and when we don't work due to illness there is stigma, especially with invisible illnesses that people cant " see" that you have, or don't understand. Sometimes, this pushing to get better all the time can make people worse, and is very draining. There comes a point where one needs to simply accept the way there body is, accept the limitations - not to give up, but to learn to be happy with what the body can manage. Today, this way of thinking has been prompted in me by chatting to one lady. Today is a turning point. I am NOT giving up, I will continue to try to improve my health by eating super healthy and doing whatever minimal exercise my body allows, but I need to take a step back and learn to enjoy myself just the way I am, in the knowledge that I have done everything possible over 9-10 years to recover or get as well as I can from this illness. It is time to stop pushing myself physically all the time, in a bid to increase my stamina as its not working, its done nothing but make me ill for 6 months. I'm am tired of the fight to get well, so today I accept that my body is simply the way that it is, if its going to get better it will, if not then so be it. I AM NOT GIVING UP. Please do not think I am. I am simply accepting the way my body is, what I can and cannot do fluctuates on a daily, hourly, weekly, monthly basis. I am learning to be more at peace with myself and this illness from now on.

Less focus on illness means I can focus more on being me again, I can concentrate on living in the present moment and finding happiness in the things that really touch me. In some ways Ive stopped being me, as Ive been concentrating so hard on fighting and getting through each day, what I can do to fight harder to get better. So my energies are shifted to living, to being, to enjoying and savouring the things, people, moments I love.
Today has really been a huge positive to me. People have crossed my path and words have been said, my thinking has changed. Its like Ive woken up and stepped out of a thick menacing fog out into the light. Realisations have occurred and I feel so much love and appreciation. I feel so much more "myself" and very much lifted in spirits. This has resulted in me being able to forgive 5 people who's actions have caused myself and others a great deal of pain, and to let go of the very last remnants of that pain. It has allowed me to start bridge building, more for other peoples sake than my own, but essentially to help them to rebuild broken relationships. What I get out of this is to see their happiness which is worth more than gold.

I am continuing my veggie diet and have ended up 50-75% raw this week. Its been hard cutting out all the foods I'm sensitive too, but made me appreciate other foods. Ive made a couple of delicious recipes this week and have really enjoyed my food. I don't feel any better for it health wise, but I'm enjoying this way of eating so will continue with it. Its got to do me some good having all the super nutritious foods I do have.

I do have some quite exciting news this week. I started entering the National photographic societies monthly photo competitions 2 months ago. This week I found out I had been awarded 2 out of the 3 gold awards this month. I am so over the moon about this, absolutely thrilled. The other entries were a pure joy to look through and of such high quality. Its hard to believe I was awarded 2 of the golds. I also got two highly commended. If you like nice photos do take a look, there are some beautiful images.
National photographic society photo comp winners

Ive also started making a few pendants out of clay this week, I'm feeling very creative and have been researching ancient Norse, pagan and Celtic art and jewellery for inspiration. Ive got lots of ideas I'm planning to try out so watch this space.

Credits for photo below - Model Charlotte Felski, MUA Delilh Rose, assistant Mike Martin

Credits for photo below - Model Natasha KQ Bloxham​
MUA Amy Robson MUA
Hair Rachel Smee hair and make-up
Jewelry Michail Jarovoj

Food and airbourne sensitivity tests

Carrying on from my last blog, I did go out this week, but felt soo ill on going out. Luckily by the time we reached the botanical gardens I had started to feel better, but later in the day I felt quite ill again.  Strangely both times were immediately following food, I would not have added this in my blog, however Ive had food sensitivity tests since and the results were interesting.

So, I went for the food and airbourne sensitivities/intolerances tests. The results showed Im sensitive to the following list of foods and airbourne stuff.

Coffee, cocoa, chocolate, cows milk, potatoes, peas, garlic, grapes, oranges, apples, tangerines, mixed nuts, hazel nuts, salmon,oysters, margarine, barley flour, rye flour, wheat, wheat bran, soy bean meal, red and white wine, msg, e102, e110, e124

tobacco smoke, grasses, dogs hair, house dust mites, straw dust, nettle pollen, dry rot, penicillin notatum, alternata

So going back to feeling ill the previous day, I had just drank fresh home made juice containing orange and apple juice, followed by a slice of freshly baked home made bread containing wheat. Later in the day I was out and had my first coffee in about 1 week, decaf with milk, plus a veggie lasagna and salad. It adds up now as I had quite a few things that my body is currently intolerant of.

Apparently by avoiding all these things in my diet for 2-6 months some of these intolerances may disappear if my body is given the chance to heal. Its going to be quite difficult initially as I juice daily and for my juices/smoothies containing lots of veg I usually add the juice of an apple or orange to help the taste. I have garlic in a large proportion of savoury dishes, wheat will also be difficult, not so much just because its in bread, but its in so many other things - couscous being the main one I will miss, I will eat couscous 2-3 times a week. Not having pasta or noodles will be tricky too.  So no bread, pasta, noodles or couscous or potatoes - these are difficult staples to go without. But I CAN have rice and oats and corn, So if I choose to have a cereal I could possibly find an oat or corn based one, maybe a healthy muesli. potatoes I can substitute with an occassional sweet potato.

I am waiting to determine precisely which nuts I cant have, I know macadamia and peanuts are out. Hopefully I can still have cashews and almonds as I drink almond milk.
I am also getting one point verified re cocoa - is this cocoa containing milk powder ? If it is then maybe its just the milk thats the problem, which would be a huge relief as I could have be odd treat with cacao powder in almond milk whizzed up with banana and kale as a chocolate smoothie :)

My diet is going to be challenging for a short time whilst I work out what I can have, and how I can stay eating a diet that is highly nutritious with everything my body needs. A lot of shop bought ready made items are out of question. I guess I will come to really appreciate certain foods, but eating out will be very difficult.

Today is day one of elimination diet, Ive eliminated everything on the list apart from a tiny bit of apple juice in my smoothie. That wont be a problem tomorrow as I now have other fruits to substitute, so tomorrow everything from the list will be eliminated. I am hopeful that given a couple of weeks I will start feeling a good bit better in myself and that correcting my diet will  be a positive step on my road to recovery.

Positive stuff this week - hardly any pain- YIPPEE, even following my short walk in Durham. Ive made a new bracelet and a couple of components for necklaces. Ive actually got out 3 times this week despite feeling dreadful and had such a lovely time walking through woodlands at Durham botanical gardens.

There was an interesting article out this week about M.E. Here is a link for anyone that missed it.
http://www.thecanary.co/2016/06/08/people-mecfs-long-told-head-scientists-disagree/

Loving being vegetarian

I did get out to photograph waterfalls although we did not make it to the main waterfalls that we had planned as its was getting late in the day and they were much further away from the parking spot. We went to Hareshaw Linn in Northumberland which has the most beautiful old woodlands all alongside a small river. Parking is in a pretty little town called Bellingham, that has a nice pub and a home bakery shop on the main street, where I tried out some lovely chocolate shortbread. Only a few minutes walk from the car is a small waterfall with a few god options for photography, and with 3 of us pretty addicted to snapping we must have spent about an hour in that spot. We did have to splodge through the water to get different angles, and many of my friends who know me well will be amazed to know that I didn't get wet for once :). Luckily there were seats along the walk which provided welcome opportunities for brief rests as the path does undulate. Im quite happy that I managed the walk reasonably easily, although I suffered for about 5 days afterwards, its always worth it for me. We had such a lovely afternoon/evening with my partners parents and rounded it off nicely with a chippy supper.

Two weeks of being vegetarian now and I'm loving it. Ive not even considered or missed eating meat, in fact I've eaten a mainly Vegan, 75% raw diet virtually every day.  I wouldnt say Ive felt much benefit yet, although for the first time in ages Ive started getting a decent sleep in the last few days - 8-10 hours at a time, which is great as Ive struggled with sleep in the past couple of years, but especially the last 6 months.  Wierdly yesterday I only had 2 hours sleep and apart from the first hour after waking, I did not feel too bad. I have read that a largely raw diet can help with sleep and people often need less sleep, it will be interesting to see how this progresses. Another change in my body is that I normally menstruate 6-7 days and yet this time has only lasted 4 days, with virtually no pmt, again, I have also read that a largely raw diet can reduce the length of time menstruating and its well known that a diet rich in fruit and veg can help reduce pmt symptoms. Something else to watch with interest ( for me anyway :) )

Many books and articles do say that you can feel pretty rough in the first couple of weeks of turning vegetarian or starting a 75% raw diet, well I feel rough 90% of the time anyway over the last 6 months especially due to M.E, so no difference there. I did actually feel refreshed after a sleep one day, which is incredibly rare for me - only 2 days this year.  One positive is that Ive lost 8lbs in 8 days, without exercising ( although I have tried to be more active at home, struggling with this as the M.E has been bad, but I've set myself little extra tasks to keep me moving more and have tried to keep going despite feeling dreadful, in an attempt to increase my stamina). I have not had a stupidly low calorie intake - I've been very careful of this as low blood sugar is not good whilst having M.E, Ive tried to regulate it by having small amounts and often, and eating the right foods. My calorie intake has varied from 1200 calories to about 1600, Ive not worked it out exactly, just estimated it roughly, but I've certainly never dipped below 1200. I had put on almost 2 stone in 18 months, mostly due to  being hugely restricted in physical activity because of the M.E in the last 6 months, but dietary wise I've basically continued eating anything I wanted, so its no surprise.  8lbs is a lot to lose in 8 days,  but Ive genuinely eaten better in the last week than I have in my entire life. I've eaten loads, I've not gone without sweet treats and Ive had more good nutrition than ever. Because Ive researched and read so much lately, its resulted in me being able to pack in amazing amounts of nutrients into my meals/snacks, its meant my meals are varied and interesting, with so many flavours. I'm including various supposed " super foods" too. I have been including 1 teaspoon of Bee pollen in a smoothie every day and will be increasing this to 2 teaspoons over the next week or so. Bee pollen has so many positive effects - I would highly recommend anyone to read up on it to see for yourself.
























I will be happy to continue losing weight this way and I am going to keep my calorie intake to between 1200 and 1500 most days, whilst attempting to increase activity, as activity levels rise then so will be calorie intake.

I am feeling surprisingly more mentally alert and revitalised, which could be from a combination of things - good nutritious food, better sleeps, trying to be a little more active, even if it is only in small doses, supplements etc. My mood is also very good, I am positive and enjoying doing various things. I have meditated for brief periods each day and have tried implementing the technique when something stressful crops up - to help reduce the ANS  viscous cycle that contributes to M.E symptoms.

This week I am having sensitivity tests on foods, vitamins, minerals and airbourne stuff, plus a check for defficiencies. A friend told me about this Dr, he had the same tests and the Dr has helped not only him, but his girlfriend and mother to feel better by detecting and removing these "allergens". I have been looking for a holistic Dr and its strange how my friend brought it up just in the week that I was looking. Hopefully this will help me to ensure I m doing everything possible to get myself well and recover from M.E. Just another step in the process. I have previously mentioned my suspected sensitivity to Rapeseed, it will be interesting to see if is picked up or not, whether Im right or wrong.

I am hopefully off out somewhere with my partner and his parents tomorrow, not sure where yet, but looking forward to getting out and to seeing them. Im also hoping to get out this weekend to the 1 year anniversary of my favourite pub reopening - Trillians - I just love this place, my favourite pub since I was a teen, now ran partly by a lovely lady I met through the New friends in Newcastle Meet Up group and her friend. Its a rock bar and they have bands playing every week. This week they will have the same band playing that they did a year ago, AKQ Stottin and they were pretty darn good. So fingers crossed I can get there, enjoy the music and see  few friends.

Its also almost a year from the day I met my lovely partner, John . We had our first date in Trillians on the 21st of June, the summer solstice. I'm looking forward to celebrating our 1 year anniversary, there were many times I thought we might not be a couple, but now I'm really happy I stuck with it and worked through my issues as he is such a lovely, warm, kind hearted man. I can still remember our first kiss on some rocks at Cullercoats whilst watching the sun set, so romantic.