Taking control

After 14 years of having M.E. and the medical profession/NHS pretty much failing big time in helping me ( and most other M.E. patients) to be well ( other than pacing), I have researched and tried many things to help me to be as well as I possibly can. I am not in denial of having M.E. Ive accepted it a long time ago, however there are many stories of people who have recovered or at least managed to get there health into a better state leading to having more of a life - in the last year a friend of a friend appears to be well on her road to recovery - through researching and changing things like nutrition. To see her photographs of her on holidays up in the hills etc gives me hope, and so this last few months I have been trying to find my own path to recovery yet again. 

As previously, I have looked at nutrition again and last year I came across a Dr Myhills book explaining how a paleo ketogenic diet can help the body to produce energy more efficiently. The diet involves cutting out dairy, gluten and grains, sugar, fruit sugar and high carbohydrate foods such as many root vegetables. The diet advocates eating the recommended protien for your body weight each day, keeping net carbs under 30 grams daily and eating more fats (particular fats such as extra virgin olive oil). I tried this for a couple of weeks last year and it made me feel so ill, on top of feeling dreadful with M.E. and triggered horrendous migraines so I thought maybe it just doesnt suit my body - and stopped it. I had my gall bladder removed 2 years ago, so I was concerned regarding my body's ability to digest such high amount of fats. I continued to read up on this and joined a group containing others with M.E. who have tried this diet - there were some who have had gall bladders removed who felt some benefit so I decided to give it another go, and try to persist. Given Dr Myhills 35 years of experience in treating patients with M.E. and her passion for helping us to get well, I felt her advice is most likely one of the best sources in the UK.

 So I found myself 5-6 weeks into this diet, feeling utterly dreadful, despite following it strictly, being in ketosis, eating all the supposedly right foods. On top of which I have been looking after myself - getting good sleeps ( Ive managed to improve my sleeping in the past 2-3 months) , careful planning and pacing, resting, avoiding/reducing stress, stopping drinking alcohol. I have spent most of my time at home this last 2-3 months, avoiding all most activities that would exacerbate my symptoms. I have taken all the recommended supplements to help mitochondria, energy production and immune system - CoQ10, NADH, Vitamin B12 sub lingual spray, Vitamin B6 & 3, flaxseed oil, evening primrose oil, magnesium, vitamin C, vitamin D, Carnitine. I stopped taking D ribbose whilst on the paleo keto diet as suggested in Dr Myhills book .

 A friend of mine had suggested I look at Dr S Grundy's The plant paradox and I thought I would take a peek. I came across a video of Dr Grundy in an interview and was extremely interested in his approach at helping people to recover from illnesses. In his research he has found that Lectins in foods are making many people unwell. Many plants produce lectins, Dr Grundy describes plants as producing lectins as a defense mechanism to ward off predators from eating them or their fruits/seeds. The lectins can cause a whole range of unpleasant symptoms and are present in so much of our food - even meat - as animals are being raised on grains ( often genetically modified and full of anti biotics which he states are also detrimental to our well being). So Dr Grundy advises a paleo type diet avoiding all foods containing lectins - and he has seen great results in his patients, so much so that he gave up his job as a heart surgeon to help people  get well using nutrition ( and other measures).

 Now whilst watching videos of Dr Grundy explaining his approach, I ate a spoonful of peanut butter as a snack. I had a relatively pain free morning, but in the hour following eating the peanut butter I developed pain throughout my body ( this is one of my frequent symptoms which I often cant put a finger on any cause). During a video he mentioned that peanuts contain lectin and can be one of the culprits to causing our symptoms - to avoid eating them. I had a light bulb moment and threw out my peanut butter :). Now it may just be coincidence that my pain occurred in the hour following eating this, but my gut feeling says its not. I decided right then to give his approach a good try.

 So today I have started his eating plan, with his 3 day phase one, having a nice green smoothie for breakfast. What I like about Dr Grundy is that, like Dr Myhill, he is making a lot of this information public so that people can try it themselves, unlike some clinics with secretive approaches who charge the earth - when people who are very ill with M.E. dont have incomes and simply cannot pay for this vital information to help them to get well.

My green smoothie consisted of a handful of rommaine lettuce, a handful of spinach, juice of half a lemon, half an avocado, fresh mint, and stevia/pure vanilla extract to taste - all whizzed up with water. Its surprisingly nice - and a fresh way to start the day.

For this altered diet to work its important to only  eat wild caught fish, pasture raised poultry that has eaten natural insects and plants - not been fed grains/antibiotics, grass fed meats where the animal has not been given grains/antibiotics. Now these are not the easiest things to find locally in the UK. and they not cheap - but I would rather give up everything to pay for the right food and opportunity to be well again, or at least  less ill. Luckily I live near the sea and a fish quay, my partner is going out hunting today for the right meat/fish. Im fairly confident that I should be able to get wild caught fish from local fishermen.

Last year I also tried cognitive behavioural therapy partially to see if it would help with my PMDD ( pre menstrual dysphoric disorder) and partially to help with M.E. I learned nothing new that I didnt know from being a nurse. But it led to a next treatment idea for the PMDD which is currently working well for me - despite my Dr not having a clue about this treatment, I quite literally had to explain the latest treatments to her. I now take Fluoxetine on the very first day of any symptoms for around 7 days, it helps me within 48 hours ( unlike the usual action of this drug which takes weeks or months) It isnt working as an antidepressant but it can allieviate symptoms rapidly. My whole life I have struggled with these symptoms not knowing it could be helped until last year - quite ironic that I start treatment as I start the whole perimenopause. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3442940/
But reducing my stress levels by getting the right treatment for PMDD is something that can help the M.E.

What I have managed to do is find my own ways to reduce stress, stop being a worrier and find peace of mind - I continue to strive to improve with reducing stress - its a work in progress, although I have just recently dealt with one of life's most stressful events relatively easily due to my new approaches. I use a lot of positive thinking strategies which are found in abundance on youtube.

 Another thing I tried last year was Acupuncture - from a lovely lady who has helped herself to better health following M.E. Now I do feel that timing was not good an I was on the brink of going through two very stressful things ( moving home etc) so I believe this may have affected my body's response. I attended numerous sessions, but  varying reasons resulted in difficulties in having a regular weekly session. My practitioner is a wonderful lady and I feel that at some point I would like to revisit and see if she can help me further, but at  that point last year I was not seeing signs of improvement - I really do think this was highly likely due to other factors and that if I can try it again now I might see some results, but feel other negative forces hampered my progress.  I did find that the acupuncture helped me on my path to sleeping better and also helped me to reduce stress. I had no choice but to stop treatments due to financial restraints, it is what it is -but I can see me trying to determine ways to pay for treatment in the future. The treatments brought me peace and calm at a time that was highly stressful and Im very grateful for the practitioners efforts. TBC

So towards the end of last year I moved into my wonderful partners home, I cannot express just how amazing he has been regarding the M.E. and helping to find a way forward to promote my best chance at recovery or being as well as I possibly can. He helps me with anything and everything that I struggle with, he prevents me from getting worse by doing all the cooking etc. I have been so incredibly lucky to find someone who is such a rock. I really feel that we are on this journey together and that he is holding my hand as we walk through it, negotiating the twists and turns  as just a different sort of life adventure. Michaels support has enabled me to use what little energy I have each day/week/month to do things I love instead of making myself ill doing housework and cooking, resulting in never managing to do what I love. So most weeks we go out on a drive somewhere nice and if Im up to it we explore a park/nature reserve/coastal path with me on a mobility scooter. When Im not getting out I use our dining room as a sort of mini studio to take photographs of flower etc - its all set up so that even if I only have a little energy all I need to do is sit at the table and snap away - with everything I need within reach.

Earlier in the year I had decided that when I struggled to get out I would concentrate on something positive to help me get through it, which is when I decided on doing mostly macro photography at a table top, sat down. I gave myself big goals - Ive always believed that if you believe you can do something then you can. So my aims were to try to get an image placed in the International garden photographer of the year and to do my best in the SWPP and NPS competitions as entering each month gives me a little something to focus on when stuck at home the majority of the time.
Well I didnt get placed, however I am really happy to have had a couple of images shortlisted in the macro section and to get my portfolio shortlisted. The images of the lady bird above and below  are part of that portfolio.

These next images were also shortlisted

I did even better in the National photograph society's monthly competition, being awarded a total of 22 gold awards and 41 highly commended - which landed me one of my proudest photography achievements to date - only last week I was announced overall Photographer of the year for the NPS - which is a massive achievement for me. I really hope that others with M.E. reading my blog manage to complete reading the whole blog and realise that even though ill and pretty much stuck at home for 95% of life it is still possible to make positive things happen - if you put your mind to it. This hasnt been easy - Ive suffered after every mini photo session and the majority of it has been done sat at a table at home. I started learning photography 13 years ago after getting M.E. and Im mostly self taught, having used the most basic, cheap equipment for many years, but perseverance and determination has got me to this point. So I just want to say to others with this horrible illness to keep going, and find ways to adapt, look for the most positive way forward that you can find at that time in your life and take things one step at a time.
Many of the images included are images awarded by the NPS. A few were also awarded by the SWPP.

I will try to update soon on my progress

My wonderful partner Michael - this one was awarded a gold too :)

Honesty, this is what it is really like

So today I have made a decision, I am stopping photographing gigs until I am well enough, the pay back is just too much. So I am giving up what I love to do temporarily,  because my body is trying to tell me to stop. I have been advised by my physiotherapist /M.E specialist to only do what I can manage every day without exacerbating my symptoms, once I have worked out what that level of activity is I have to strictly keep to that until my symptoms are minimal before attempting to increase activities by tiny amounts.

  Whats prompted this decision after all my positivity? On Friday I went along to a gig in a wheelchair, stayed in the chair for most of the time standing up for a matter of minutes ( 1-5) at a time, walking about 3 metres to take pics at different angles then sitting down again.I spent a large amount of time sat on a speaker in front of the stage. I was already extremely tired but adrenaline fueled me I guess. I rested completely on Saturday, apart from editing photos on my computer - which I also stupidly over did thinking it wouldnt affect me too much, spending far too much time, way over my recommended couple of hours maximum. Sunday I was so exhausted just getting a shower, I had to lie down before getting dressed and it took 4 attempts to get my hair dry, lying down resting between each attempt. Stupidly, despite being completely exhausted and needing to sleep I went out with my partner, thinking its only sitting in the car and sitting on the mobility scooter, however it was a nature reserve with rough paths and it was beyond exhausting just trying to stay on it and steer.  Come the next day I did very little, I didnt shower as I was simply too tired to do so, just a quick wash - which I hate as I like a daily shower or bath, but I did not have the energy, I had to go to my local shop to buy food, using the scooter but rested other than that. Today I am crashing big style and stressed to hell because my body won't do what I need it to do and in truth I honestly don't have the help that I need today as my daughter is not well either. This is what nobody other than my partner or daughter sees. I would have rested completely and gone without a shower on a day  with 10/10 exhaustion and severe symptoms, high pain levels, but was concerned that I might need to accompany my daughter to the hospital as she has a health problem that is concerning and may need attention.  So, barely able to walk more than 4-6 steps without sitting, peeling 4 potatoes was exhausting - and left me in pain - can you imagine not having the energy to peel one potato without stopping to rest before peeling another - sat in a chair with a tray and chopping board on my knee to do this as I cant stand long and trying to reserve every scrap of energy. Asking my daughter to help chop potatoes, leek and celeriac turns into a long drawn out drama because of her own health problems, making me feel guilty for asking and ultimately a very stressful hour. This is when I have bought half of my veggies ready chopped in preparation knowing how little energy I have. That hour or so of stress just made me worse. But this is total honesty for once on how I am trying hard to actually have mere  snippets of a life once or twice a month doing what I love and how it affects me, along with the totally open account of how in actual truth I am not really managing at times and stressed to hell because of it some days. Today is one of those days and whilst some may say I brought this crash on myself, I would say to them to try a life with  M.E where everyone sees you appearing normal once every couple of weeks and sees photos I take online and assumes I am perfectly fine - but actually I struggle having a shower every other day, struggle to make a decent home cooked meal once a week/fortnight ( who wants to live on crappy ready meals full of additives) ( I actually feel so chuffed with myself when I manage to make a meal these days). Below will give you an example of a day in my life.

So what is it like having a M.E., or generally a good 90% of my days?  A typical day for me - I wake up in the mornings with sore throats pretty much 40% of the time, its so much the norm that its never worth mentioning unless really bad, I just drink lots to ease it. I wake feeling like I have had no sleep - often enough I havent slept well, on average I only have 1 or 2 good nights sleep a week, probably about once or twice a week Im awake for at least half of the night, sometimes thats is because of pain or discomfort, other times there really appears to be no reason - I don't have caffiene in my diet and its not often that Im particularly kept awake by stress. I dont get showered/dressed straight away, as I often dont have the energy, so I sit with a drink and about 10 tablets, some supplements that I need to take each day to help give my body the best chance to function,  I need to take at least two of these on an empty stomach and wait an hour before eating then a couple can only be taken with food. basically my day starts with resting as I still feel as tired as I did when I went to bed the previous night.
I need to be prepared and think ahead for every little thing that I do, so that I can reserve every scrap of energy, but fatigue can affect how well your brain works and I am incredibly forgetful now. So try to do things in one trip to a room.
I have found the having a good amount of protien in my diet seems to help me with energy and stamina so I like to have bacon or scrambled eggs or poached eggs, but usually lack the energy tov stand and cook so often just end up having cereal or yoghurt as these are easiest. I have to keep my calories down though as being less physically active means I dont burn calories well.
 If I am having a bad day its more important to rest than shower so I will have a quick wash the next time I go to the bathroom and will sometimes stay in my PJs. But I try to muster the energy to bathe or shower.

( I actually started writing this in November but just finishing it in February!) I stuck to no photographing of gigs over the christmas months.
Stupidly I tried photographing a charity gig last week, I wasnt on my feet long really and did nothing else that day other than get dressed. But I paid for it, really bad, pain and exhaustion were severe for 5 days, enough to stop me doing anything at all. Even more stupidly I attempted a night out when already exhausted, to another charity gig, I didnt take my camera, but my partner did as a spare. Yet I was lucky enough to get a seat at the front and was tempted to take photos as its what I love and even though I only stood for a couple of minutes a handful of times Ive been in extreme pain and complete exhaustion ever since. Can you imagine what its like to just stand up for a few minutes 3-5 times and take photos and as a result be so ill tha you cant even get dressed more than once in 5 days, are in pain thwhole time and only get one decent nights sleep in that time?  Thats my life! So it has to stop, no more band/gig photography, even though its what I love, I cant deal with the pain and exhaustion at this level any more. So thats my last gig unless I get the chance to do something very special and meaningful that really means something to me. Its hard to give up the very last thing that brings me so much pleasure, Ive had to give up cycling, climbing mountains, doing portrait and landscape photography, making jewellery, gardening etc etc

Its so frustrating that everyone thinks I look well therefore I AM well. But Im not. I wanted to go out yesterday but I had to spend the whole day resting on the sofa, I wanted to go out today and see friends, but couldnt as Im in too much pain and Im too exhausted. I may look well for a few hours a week but Im NOT, - Its the most frustrating thing in the world and the only people that seem to understand are those who have a similar illness or who have relatives/loved ones with a similar illness. The sheer effort it takes to just get out to see a couple of people  that I would like to see is beyond most peoples comprehension. I used to climb mountains as a hobby, and in all honestly the effort to go out now is at least twice that of climbing Ben Nevis and at least I was just having a few aches and pains after climbing mountain - which would go away - I would sleep a refreshing sleep ( whats that like again?!!!) , I would still have energy after food!

I dont want pity, I just want people to understand what its really like. All my friends and partner are out having a great time at a fabulous charity event tonight and I have had to stay in with muscles quivering and jumping, pain almost everywhere and not an ounce of energy to function, complete exhaustion that a sleep does not help - ten sleeps dont help!. I could have got a taxi there but dont have the mental energy either. Often I cannot listen to one person speaking whilst there is music or a tv playing, I cannot separate the two noises to concentrate on one - today is one of those days, so live music and bright lights today would have been overwhelming.
Im not the only one, Ive a few friends with M.E and Fybromyalgia which has a lot of similar symptoms. One or two are still trying to forge ahead as I did for 13 years - I simply cant at present. But they suffer at home, have their brave faces in public for a few hours once or twice a month where everyone assumes they are fine. We do ourselves no favours in that people only see us looking our best even though our best is often only less than 50% of our pre illness selves and can only last minutes or hours to best, before severe payback.

For once this is not a positive post, its a realistic post. I am not depressed in any way, I feel lucky that I get to do some things that I love and that I have my lovely daughter and absolutely amazing partner in my life. But its a bloody boring life when you have a reasonably intelligent mind and cannot do 20% of what everyone else takes foregranted. Its a boring life for my partner who accepts me with this illness, who wants to go and do things together but is incredibly patient, understanding and helpful. He is the hero in my life. He never complains, yet cooks my meals and transports me places, waits patiently hours for me to be ready when he could be out doing all sorts.  It the people who support and help people with M.E.  who are my heroes, with endless patience and understanding, putting someone else first.  Ironicly that used to be me as a nurse - and how I wish I could do that again!

Positivity

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

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

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

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

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

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

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

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

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

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

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

Relapse, independence, wheelchairs

Well since my last blog my health has continued to decline due to M.E symptoms. The worst problem is my mobility, I can barely walk more than a few steps at times and even a few metres is exhausting. I reached a point were I would try walking to my local shops which are only 200 steps away, and I would get there but couldn't walk any further, sat on seats for ages, walked a few steps to the next seat, sat ages, walked to another seat, sat ages, (luckily lots of seats by the shops) walked a few steps and leaned on a wall for ages, walked few steps and no where to sit,  struggled to stay standing, my coordination has gone haywire and my balance is poor, I stumbled and fell to the side but managed to stay on my feet. I had no choice other than to either sit on the path or try moving forward. It took me about 20 minutes to walk the remaining 50-60 steps to my home, in tears as my legs weren't working, I kept stumbling, was breathless, completely exhausted and in pain. Finally got in through my door but could not climb the stairs to get up to my flat, I sat on the bottom steps for about half an hour and had a few tears - What do you do when you live alone and can't get out on your own? What do you do when you try to go out for essential stuff like fresh food and you simply cant walk any further? There was nobody I could ask for help, no family help, partner 20 miles away at work, friends miles away and most likely working or busy.

I had already been to my doctors and explained how much I was struggling - I had to catch a taxi there and back even though they are located just a handful of streets away. I had explained on more than one occasion to my Dr's that my symptoms were worse and that I was struggling to bathe/shower, wash and dry hair some days, struggling to make myself meals or do housework, some days I could walk short distances whilst some days I could only walk around my home. I asked months ago o be re referred back to the M.E specialist team for help and support, but they wanted to test my Thyroid functioning first - I'm hypothyroid. I can understand why they needed to do this but Ive had M.E for 12 years and Hypothyroidism about 15 years, I know my body and know that these particular symptoms are my M.E. It turned out that my Thyroid levels were out of range, I was over medicated, so my dose was changed and I had to wait 2 months for the next blood test, which ended up showing under medicated - resulting in another two months of waiting, finally my bloods were in normal limits and I could be referred back to the team - its taken months, whilst I have had to just try to keep going - and this has come at a greater cost as I've deteriorated even further because I wasn't getting help and had no choice to push myself to do the necessary daily activities. I finally saw the physiotherapist in the M.E team two weeks ago and he said even the very short walks just to my local shop have made me worse as Ive ended up in a boom / bust cycle, he explained to me that even though the parameters are very small, its still a boom bust cycle as I need to have a stable level of activity that I can manage every day without my activity causing worsening symptoms. So during the last few months of trying my best to keep going, to retain my activity levels and stamina I have made myself worse resulting in this relapse.

So its back to square one, which I've been through many times over the years, but this feels  worse as I've pretty much lost my independence with my mobility difficulties. I am now faced with the uphill struggle to attempt to rebuild some level of activity and stamina. Its frustrating when I've worked so hard this last year on slowly building activity levels and retaining stamina. The way Ive manged for years is pushing my limits once a week or fortnight/month to go out, with help, to do something I love because the alternative of not going out and seeing people or doing something I enjoy is unbearable to me. Unfortunately this going out once every so often is what causes the boom bust cycle, the only way to avoid this is to only do what you can manage each day without bringing on worsening symptoms. There is no way I can accept a life sat at home every day. So I stay at home pretty much most days, doing some very light exercises, resting as prescribed and try to get out with help from my partner, daughter or friends on days where I can walk a few steps.

 I plan ahead, rest lots on days before and after going out. I may appear as if there is nothing wrong with me walking into a coffee shop or bar to meet friends, but those few steps are pretty much my limit and I HAVE to sit down - if I cant then I have to leave. I am usually out about 2-3 hours and this is incredibly tiring, just having a few conversations with friends can leave me feeling wiped out. I am usually in pain before the end of my trip and always in pain in the next 24-48 hours. I used to try taking photos of the bands playing in local pubs as one of my few opportunities to enjoy my hobby of photography, but now even that is limited as I end up completely exhausted within minutes of trying to move around to capture the right angles. The last couple of times I just ended up kneeling on the floor to take a few images but struggled to lift the camera for more than a few images, I've tried being in a wheelchair at the front and just standing for a minute or two at a time too, but again I cant keep my arm raised very long to take photos. On top of that I've ended up with Bursitis in my right arm recently so photography is off the menu now - the main thing that drives me, gives me purpose and pleasure - quite frustrating that its happening at the same time as a relapse but these things happen. However, I have thousands and thousands of images taken over the last decade that I can use to create composites etc, so I can at least do that - although I'm advised not to use my computer for more than 2 hours a day as this is also very taxing. The band images taken here were taken at the front of the venue in a wheelchair resting my arms on the barrier - no moving around, just standing for a minute or two at a time. I was experimenting with one of my creative techniques and I am going to try to write an article on using these techniques which I would love to get submitted to a photography magazine - watch this space - I'm determined to still be creative and productive somehow.

 I now have access to a wheelchair  but I am waiting for a wheelchair assessment from the local services - I need this so that I can have a wheelchair to use as long as I need it and I need the assessment to demonstrate to the local council my need for a blue badge so that if I can get out in friends cars they can park in disabled bays so that I am closer to where we need to be. I cannot self propel in a wheelchair, its simply too exhausting just pushing the wheels round 2 or 3 times - I wouldn't even get to the end of my street, so I have to rely on someone else to be available and to be willing to push me. So this presents other difficulties, its an awful feeling to have to rely on other people just to get out and the person around me most - my daughter really struggles to push me and navigate the incredibly uneven terrain just to our local shops and even my partner finds it hard work.

Until you actually need a wheelchair you really don't realise just how limited the wider world is, the restrictions and difficulties you might encounter. My eyes have really been opened. I have also been looking at what is possible on a motability scooter too as some places hire them out. For example, being my favourite season of autumn I would dearly love to get out into woodlands full of the wonderful colours of changing leaves, I would love to go to town on my own using a scooter to meet friends, and I need to register with a new dentist since moving - none of these things are as easy as you might think. I have not found a local dentist that is wheelchair accessible, not only are they not accessible but many require you to climb stairs within the premises. Now I can walk a few steps to get inside and climb a couple of steps up, but what happens to my wheelchair or scooter if used? I can't leave it outside or it could be stolen. So my search will continue to find an accessible dentist, but I find this disgraceful that disabled people have to hunt for accessible health care and possibly travel further meaning extra costs, or help required to reach the destination. As for getting to town, if on a scooter that can be folded down I can use the metro which is a 3 minute walk from my home. The problem is that use of a scooter within the stations is not allowed, so I would need to walk through the station pulling a very heavy folded up scooter - sadly the distance to the trains platform is further than I am advised to even attempt at present - I could get part way and not be able to walk any further - the stations in town are huge and would require more walking than I can do in a week at present. Now I totally understand why scooters are no longer allowed on metros but surely disabled people should be allowed to use them within the stations like motorised wheelchairs can. Just one of the surprising restrictions I've encountered. I could use a bus, which is more feasible for me, however my local bus only stops at one end of town, which is a starting point - then to navigate the accessibility of the places I want to go - that will be a learning experience - I wont go alone first time as Ive already found difficulties in streets near me where its hard to get up and down curbs.  As for woodlands - Ive started researching and there aren't many accessible by wheelchairs or scooters, information is limited and they can be tricky for me to get to, so not an option for going alone. But I'm determined to still have a life so I will continue to research and plan ahead. Going out alone will be extremely limited even using a scooter, I tire so easily and quickly.  So as you can read, just going out is a whole new adventure!

Another aspect of my declining ability to perform daily living tasks is that it has left me feeling somewhat vulnerable. Now I like to think of myself as a strong independent woman who can weather any storms than come my way, but in reality when you try to make yourself a nutritious meal and simply cannot do it, when you cant even dry yourself after a shower and just have to sit on the bath to catch your breath and find the energy to put on a dressing gown whilst still wet so you don't shiver with cold, when you get stuck outside and cant walk any further and have nobody near to help - well that can leave you feeling quite vulnerable. It can be scary when your body wont do what it should. Yes, you adapt and find new ways in time, but those moments can be very lonely moments. Now I'm lucky that I have a wonderful partner who is incredibly supportive and a lovely daughter, plus some great friends and between them I know I have support and love. But part of why I write this blog is to raise an awareness of what it is actually like to have M.E, the ups and downs of life - the challenges faced and how I can try to continue with a positive outlook. Imagine not having any support or loved ones and having M.E. It is an illness that changes lives but it is possible to have positivity still. As Ive said above, I am determined to still be creative and productive so do watch this space and see how.

Some positives and achievements from the last few months
I finally managed to get to a bike rally that I used to go to over 20 years ago, with help from friends. One friend took a wheelchair along for me so that I could go and I had a fantastic time with friends- a bucket list tick for me.
I actually got to take photos of Girlschool playing live, although was too ill to do a decent job.
I started entering my photographs into the NPS competitions again and was awarded 3 gold awards and one highly commended.
I won a macro photography competition with Digital splash/Wilkinson's cameras pic below

Ive got lots more I want to write about such as the application for PIP and a blue badge and something positive I'm working on but that can wait for my next blog.

I cant believe its been a year since my last post. A few things have changed. Ive moved at the end of the year and now live alone for the first time in over 20 years, which can be daunting on days where the M.E is bad although Im closer to shops and transport which helps on my good days and closer to our beautiful coastline. I have been in a relationship for 10 months and Im very happy with my lovely partner. My stomach problems from last year are all resolved now - I had my gall bladder removed.

Positives this year - I finally managed to get to a bike rally which was fantastic with great company, Ive managed about 4  portrait photo-shoots this year (with help from my lovely partner) which has been lovely to get back into. Its been lovely to share doing things with my partner, doing new things together and sharing all sorts of experiences - luckily for me we share a few interests. I managed to get to the Beltane fire festival. Ive had a wonderful day trip to the Lake district with a good friend. I celebrated my 50th birthday this year in my favourite pub with lush friends and a fab band playing.

My health has been quite up and down, Ive managed to get out and about more this year than last, which has been heaven, but still paid for it afterwards. I feel lucky that Ive got out to see bands regularly too. There have been times where I dared to think I might be recovering as I was actually managing to get out about 3/4 times a week,  but still felt very fatigued and was in pain most days - I still needed 3 or 4 full days of rest every week, but its the closest Ive come to living a near normal life in 11 years.  Although at present I am struggling again. Back to being exhausted from washing in the shower and needing to sit a while before drying myself, back to struggling to dry my hair, and evening finding typing on my laptop or my phone tiring. Ive been here before, its feeling like a major crash and Im finding it hard to adjust back to doing literally nothing - nobody wants to sit around doing nothing all day. But Im trying to keep my mind occupied, trying to think positive and hope this wont last long, even though Im terrified that I could be this way for months again.
My plan is to eat super healthy. lots of healthy fruit, veg and protien, avoiding processed foods, gluten, dairy and sugar or anything that could exacerbate this crash/relapse. Take all my supplements and rest lots. Listen to my body for a change.
It may not just be down to M.E this time as my Thyroid levels have been swinging all over the place resulting in Thyroxine dose altered twice. Most of my worsenning symptoms can probably be attributed to the Thyroid problems, but some I can tell the difference and are definately from M.E.
My mind is not working properly at all, Im more forgetful than ever, struggling to think properly and find the right words, Im getting confused or muddled at times and have also been tearful for next to no reason at all. ( Im not depressed - Ive a lot to be grateful for and appreciate a lot in my life, but my brain/mind just isnt working properly and that in itself can be distressing). Plus Ive had some bug causing sinus and throat inflammation with flu like symptoms - not much different to the M.E symptoms but its been a raging sore throat some days, it seems to be clearing up slowly on its own, but minor illnesses often put me back to square one. Frustrating when its summer, beautiful outside and lots of fun activities and event going on that I want to get to.

Not getting out when you live alone is a whole new circumstance, I can just about manage to get ready but Im so exhausted by the time Im ready that I cant walk more than a few steps at a time sometimes. I darent go out alone when like this. A wheelchair could be great but I cant self propel - no energy and have nobody to push me anywhere most days and really really dont want to have to rely on someone to push me anywhere, or put anyone out. An electric wheelchair is out of the question as I cant pay for one. So, Im stuck at home, back to the option of ordering food online despite it costing about twice the price of my local shops. Back to a life spent communicating on the internet until my body is ready to let me do more again. Fingers crossed this is a short crash/relapse as Ive worked so hard on trying to build my stamina and fitness levels just to get out.

And so my invisible illnesses are seriously messing with my life right now. Life has pretty much stopped this last week or so. The difference being this time I have a lovely partner who has kindly driven me to the beach and to an outdoor theatre production. Its kind of hard letting a new partner see you at your worst and learning to negotiate a way forward that doesnt impede his enjoyment or put pressure on him. I keep making the mistake of pushing myself too far so that we can do things together - Im like a kid in a sweetshop, excited that I can share doing things with someone I love. But really he has been amazing, supporting me through a few life changes, an operation, putting up with my craziness :) and sharing so many life experiences together. I feel very lucky to have him in my life.

Lets see how the next week goes healthwise, fingers crossed I will be back to being able to get out again. Blood tests for Thyroid levels and a GP review coming soon. 

Update on plan

A week or so on from commencing my plan. Ive managed my short walks 5 days out of 7 this week, which is a good start for someone with M.E. 10 minute walks seemed to be just right, not too little, and not too much as I could complete the walk without stopping but most definately needed to rest by the time I climbed the two flights of stairs to get home.
I did push things a bit too far on Friday, I needed something from our local shops which are a 15 minute walk for me. There is a bench half way and I sat and rested 5-10 minutes .  I managed to get to this bench on the way back and knew by that time I had pushed myself too far. Just a total of about 20-25 minutes was pushing my body too much. I rested 10 minutes and walked the rest of the way home, really struggled to get up the stairs. Pain followed on that evening quite quickly, although not too severe. I slept very poorly afterwards.
What happenned the following evening is pretty much the usual for me after I have been active - I often cannot sleep for 24-48 hours. I do not know why this happens, it just does. I  ended up getting 1 hours sleep, but got woken up, then a few broken hours sleep dotted about over the next 12 hours or so. I cant catch up on sleep through the day easily just now as there are workmen doing work outside my home for up to 12 hours a day 6-7 days a week. Yes even from 9am on a Sunday, today. So my sleep patter is totally messed up.
I feel dreadful. I dont feel with it at all, kind of spaced out. The usual sore throat, aches and pains plus fatigue. However, trying to complete the smallest of tasks at home is completely exhausting - getting dressed resulted in me having to sit on the bed to recover from putting trousers on. Whether this is the result from walking too much on Friday or the combination from walking most days and the knock on effect of dreadful sleep, all on top of my usual symptoms? It is what it is. Basically I feel even worse than I have been. I have not managed my once or twice weekly get togethers with friends, resulting in seeing nobody but my daughter this week. I had been feeling very positive but now feel very low. I am not choosing to feel flat or low. I am thinking positive thoughts, but my brain isnt functioning, my emotions are flat, Im so completely drained. I have felt disorientated, and disconnected in the last couple of days, yet psychologically I had felt fine before starting my plan.  I have had to mute the tv when my daughter speaks to me as I cannot separate the two, I can only concentrate on one thing at a time. I have felt mildly muddled at times too, most likely the exhaustion coupled with total messed up sleep pattern, lack of sleep. This is all the side of M.E that nobody ever sees in me, as I only see people when Im at my best.
Diet wise Ive eaten well, continued eating lean fish and meat every other day, but have not felt in the right place to stick to a weight loss programme. Ive continued taking my supplements.

Today, despite feeling my worst I want to get out to a garden centre to purchase something specific, its something I need to do in the next 2-3 days, as I have  plans Im working on this next week. The bus stop is a good 10 minutes including a walk over a bridge, so a bit of steep walking and the same on the way back without the bridge.  So just getting there and back will push my limits again.  Walking from the bus stop and around the garden centre I anticipate 15-20 minutes.  So basically to do the one thing that I want to do in the next 5 days is going to push me over my limit, into the boom bust cycle which I wanted to avoid. But this is a one time thing this year that I need to get done this week, ( photograph some plants for a photography competition that I would have to enter this week) so my choice is to not do something I love, get enjoyment out of it, have a chance at doing well in a photography competition and be completely exhausted for however long afterwards( usually 3-7 days), or stay at home, continue my plan and be exhausted any way and not doing what I love.
Given that being single and only seeing friends on average once a week because of my illness, getting bored stupid at home alone all the time, I am tempted to try to get the plants I want today, so I can take photos in a couple of days time and hope that some will be good enough to enter the competition. At least I wont be bored whilst feeling ill, I will be able to set photography equipment up bit by bit without tiring myself further really and take photos sitting down, then I can enjoy editing and sharing.What would you do?  If I could afford a taxi there and back it would not be a problem. however, I am not deemed disabled or unwell enough to be awarded PIP as I can walk for 10 minutes, even if it isnt every day and even though quite obviously from this last week it is making me worse trying to do so each day. I am following the advice given by health professionals - to push myself physically. In fact they advised pushing myself more, cleaning windows etc - that one was hilarious - I had told them that one task is something I struggle to do more than anything so I was told to do it repeatedly. Which makes sense for a lot of illnesses but not M.E, why do the one thing that your body cannot tolerate, more and more to the point that you end up housebud or bedridden as a result? Yet there is evidence that this advice might be making people with M.E worse.  I will stick with my 10 minute walks, if it helps in time great, if after a few weeks Im still feeling worse then I will stop.

Dilemas of going with the plan or actually doing what I love. What would you do? Stick with a plan that is making you feel even more ill in the teensiest hope it might build stamina and activity levels, but knowing it actually makes a lot of patients much worse or go back to the boom bust cycle and get to see frriends or do what you love once a week and really suffer afterwards.

Now I need to sleep...

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.