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...