this too shall pass

i have not written any posts here for ages for various reasons, one being that lately i have felt overwhelmed with a capital o. infact the word overwhelmed is an understatement. my life with cfs/me feels so unfair. the list of my moans are endless, lack of money as i cant work, major stress getting benefits, knowing my home is going to be repossessed soon, a boiler thats packed in just when its turned very chilly, a major building site across from me that means constant loud drilling and banging noises every day from 8-7 plus a mother who constantly calls to criticize me and judge me, and that's just for starters!

however i have a 'mantra' i say to myself repeatedly: this too shall pass.

everything changes, no situation good nor bad is permenant. i know that things wont always be this way for me, that's how life is.

celebrate good times come on!

i was given some good advice this week by someone who is instrumental in helping me regain my health as she is helping me with my pacing. i have at last figured out my baseline and have less severe symptoms when i have only short bursts of activity (10-20 min) followed by lots of rest.

i was bemoaning about the fact this seems to work well until i use more energy than this by doing things i have to do including going to the post office to pay bills, food shopping, and getting to medical appointments. i have nobody to help me with these, and that can often get me down. even things i want to do like going to my allotment or meeting a friend for a coffee can end up being a major challenge and also leave me completely gubbed (shattered) and fit for nothing. however as i have often said i feel very lucky that i am not one of the 25% cfs/me sufferers who are housebound, i have no idea how i would manage at all then....

stephanie suggested that when i manage to do any of the above it should be a cause for celebration. i guess she is correct. if i cant avoid doing things that exhaust me i may as well celebrate the fact that my body worked well enough to get me out of bed and outside no matter how much of a challenge it was or even the repercussions.

it reminded me of a meditation on the MBCT course i was on called the gratitude bodyscan. it was very powerful as it made me remember all the amazing places where my tired, aching legs had taken me in the past and all the wonderful things i had done with my now weary arms! yup my body had been good to me so i should be kind to it in return.

we are what we eat?

when you are affected by chronic fatigue and live on your own life can be a constant struggle in many, many ways, and one of them is eating properly. sometimes i have found it difficult just to get out of bed, let alone shop for food, prepare healthy meals and living off a very tight budget makes the situation even worse.

i have often found myself missing meals, even if there is food in the fridge as i am too exhausted (or in too much pain) to cook a proper meal. And when you have a chronic illness it is crucial to get as many nutrients in our diets as possible to help ourselves heal, including enough vit c, calcium, magnesium and omega 3's.

and there is very little practical help or advice available. so through time i have learned to manage my symptoms and life as best i can and this includes finding ways to simplify my eating and prepare ahead for 'bad days'. here's a few things that i find help me eat better and more regularly.

*on my 'better days' i cook a big batches of things like lentil and tomato soup or veggie curry and rice to freeze- so that on 'bad days' i can just pop a container in the microwave to heat.

*i am very lucky as i live very close to an inexpensive supermarket where i can get most things i need however many people who are not as fortunate as myself and are housebound for example at least may have the option nowadays of ordering groceries online. even when i manage to get to the store however i still have lots of challanges to face - bright lights, noise, only buying as much i can carry home, having to bend or reach to get some groceries which can cause me pain, forgeting what i came in for etc so here are some great shopping tips from adrienne. i always remember a list, only get a very few things at a time, have a proper rest once home, remember to take deep breaths when i feel overwhelmed and pace myself the rest of the day.

*i make the most of frozen food, it can be just as good for you as fresh and saves a lot of preparation. i make easy veggie curries using bags of (ready chopped) mixed veg and peas.

*i find breakfast the easiest meal to prepare when exhausted, either boiled eggs and toast, or yummy porridge using ready mixed oats and seeds, soya milk and frozen berries.

*i try and always have a bag of mixed nuts, seeds and dried fruit to munch on in between meals or scoff rather than miss a meal.

*i have a big glass of protein shake that's easy to make and delicious for when i am off my food or concerned about not getting protein in my diet. (i add bananas or berries for extra goodness)

*getting enough omega 3's is very important, thank goodness then for little tins of mackerel or sardines that make cheap and super healthy little meals. just add toast.

*bananas are full of goodness, i always try and have some in my fruit bowl if possible, as well as apples to munch on and my local supermarket normally has many seasonal fruits on offer.

here are some cooking and grocery shopping tips others affected with cfs/fibro, along with other useful tips on how to manage housework.

i will keep adding to this list - and any tips, advice or recipes you can share would be fab. :-)

oops ive done it again.

once again i have been neglecting this little blog. it's just it would be so easy to just use it to moan, moan, moan about the unfairness of living with cfs/me/fibro and although that is the reality, it's not what the aim of this blog is about. it's about showing how there are ways to manage symptoms better and keep a positive mind no matter how bad things are.

there are always going to be up's and down's on the road to recovery from any chronic illness and negative feelings are a part of that, especially as you can feel the world is against you and it is all to easy to give up hope. right now i am spending my time trying to count my blessings for what i have, not what has been taken away from me, and concentrate on how i can somehow one day use my experience to help other sufferers through this debilitating illness. i am finding out how to manage my illness as best i can, and to try and do this with kindness towards myself.

new posts soon along with some guest blogs from some very inspiring people.

chronic pain - medication v meditation

if you have read some of my other posts you will know that pain plays a big part in my life. due to me/cfs/fibro everyday my muscles and joints are achey and sore - a similar feeling to when you have the flu. some days are worse than others with certain parts of my body felling pain that may be throbbing, hot, deep or piercing. sometimes even just typing at the computer for a while can make my pain worse or bring on muscle weakness. (impaired ability to sustain force during and after repetitive muscle exercise) other times too much activity like bending, standing too long or walking can bring on a 'flare up' in my pain. this will be more than familiar to the majority of people affected by me/cfs/fibro - we can all push our activities a little too much (especially if we have nobody to help us with day to day things that need to be done, or we are enjoying an activity) and pay for it later.

after a long time suffering without much help, my doctor eventually sent me to the pain clinic at stobhill hospital. (like most nhs services there was a long waiting list) i had already tried amitriptyline which helped slightly but left me feeling groggy and totally out of it all day. the dr at the clinic prescribed gabapentin, building up the dosage over 6 weeks. this offered me no pain relief but gave me more side affects that were awful including yet again that groggy feeling, this time with depression thrown in. (if it did not trigger depression it most certainaly made it worse)at my latest appointment last week, i was told i would be prescribed yet another medication to try (this on will be similar to amitriptyline but fingers crossed, should have less side affects.) i am also wary of long term use of painkillers like co-codamol which i am meant to take daily, but don't always help relieve my pain anyway.

so i have also been looking into other ways that may help my pain. i tried accupuncture sadly without any success, although it has been known to help many others. the nurse at the pain clinic told me that a tens machine may help, however it can only be used in one area at a time and my pain is more general. it still may we worth discussing this with my gp. when using a tens machine small electrical pulses are delivered to the body via electrodes on the skin. this is thought to affect the way that pain signals are sent to the brain, if pain signals are blocked we may experience less pain. i have also read about natural pain helpers including supplements of magnesium, vitamin b12, malic acid, omega 3s and vitamin d. i have discussed these with my own gp and dr at the homeopathic hospital and both say that they don't see any advantage in taking supplements. this is a bit of a surprise to me, and i am not sure i agree that i get sufficient nutrients in my diet alone, especially when i am often to poorly to feed myself properly! on a limited budget, like many people affected with me/cfs it's not easy to stock up with proper supplements.

the other avenue i have explored for pain relief is meditation. i have previously mentioned this is one area with lots of research showing benefits for chronic pain. i have been reading'living well with pain and illness' by vidyamala birch, founder of breathworks, and i am planning to go on one of her courses later in the year. vidyamala herself has suffered from chronic back pain for over 30 years, now a wheelchair user she shows that by developing a calm, mindful awareness of your body in each and every moment it is possible to let go of frustration and distress. this book is an inspiring, practical guide to living with and managing chronic pain and illness. vidyamala says:

''its easy to get locked into aversion and distraction if you're living with pain as a fixed and hard 'thing'-a monster lurking in the shadows that dominates your life because you fear it. that's where mindfulness comes in. the awareness you can develop through mindfulness is steady, calm and kind, and it's subtle and precise enough for you to notice the different elements of an experience. paying attention to a painful sensation, for example allows you to investigate it, to explore it's texture and to see it for what it is, rather than what you imagine it to be''.

i am also a big fan of the wildmind which has many articles about the benefits of meditation for chronic pain like this one. i have found that through regular mindfulness meditation i cope better living with daily pain, and for that reason would encourage anyone who who struggles with chronic pain or illness to practice it.

help to heal

before i pop back to the library with this book 'healing without freud or prozac' by dr david servan-schreiber i wanted to give you my thoughts on it. it was on the recommended reading list for people attending the WEL course. i found this book very interesting and would be a good read for anyone interested in well being, even though it was written for those suffering from depression. as we know depression can be a symptom of cfs/me normally due to the lack of support, change in lifestyle and day after day feeling exhaustion, pain and a host of other symptoms. this is what has happened to me recently so i was interested to check out this book to see what i could perhaps try to help myself.

in this book dr servan-schreiber discusses 9 self healing treatment methods, each method in its own way supports the body's constant attempt to foster coherence, to recover its balance-

''these different methods work in synergy, they all strengthen each other and the parasympathetic nervous system. in chronic conditions modern western generally helps only with crisis, it does not help the underlying condition. a chronic illness arises through complex interactions between body systems that have started to malfunction. to overcome a chronic illness, we need to capitalise on all the mechanisms of self healing to which we have access. each one of the following methods has been studied individually and found to be effective, the most effective treatment is to find a combination that is best adapted to each person, the combination that has the greatest chance of transforming his pain and giving his life his energy back''.

1. practice heart coherence. this is about learning how to control our emotional being. throughout our life's we all develop our preferred method of self soothing during times of increased stress, like relying on booze, cigarettes, drugs etc we would be in better shape to capitalize on th self healing abilities of the emotional brain and of the body to reach a balance between cognition, emotions and a sense of what life can provide. to practice heart coherence begin by taking two deep breaths, stay focused on your breath and pause for a few seconds in between breaths. unlike eastern meditation practices in which you stay focused on the breath it works best to centre your attention on the region of the heart after your breathing stabilizes. then imagine you are breathing through your heart (or through the centre of the chest if you do not yet feel your heart directly. imagine when you breath through your heart that each intake of oxygen nourishes your body and each exhalation rids it of the waste it no longer needs. imagine that they are helping your body make the most of the gift of attention and respite it is receiving from you. then become aware of the sensations of warmth developing in your chest, encourage your heart by drawing on a feeling of gratitude or love whither towards another being, an object, a peaceful scene, a memory of an nice experience. the very act of recalling a positive emotion or imagining a pleasurable scene rapidly provokes a transition of heart rate variability towards a state of coherence. this practice can in turn benefit the immune system. the heartmath institute is dedicated to the research of cardiac coherence. (i have practiced heartmath meditation however i do still prefer mindfulness meditation - i will continue to practace both.)

2. address painful memories. do you have painful memories when thinking about past events that continue to trigger painful feelings? if thinking or talking about them brings tears or feelings of anger then it hasn't been resolved.any memory that you actively try to suppress is generally one that left a scar on your emotional brain. old wounds can continue to condition how we experience life. a few sessions of EMDR can clear out the consequences of old suffering and give rise to a new and more harmonious perspective on life. apparently a specially trained phychiatrist makes people move their eyes back and forth in imitation of the way our eyes move when we are dreaming while we evoke an image of the memory. (i would imagine this would be quite expensive but sounds really interesting)

3. manage conflict and 4. enrich relationships. it is important to identify chronic conflicts i present relationships. if they continually pollute the flow of our emotional life, they can end up blocking our mechanisms of adaption and self-healing. dr servan-schreiber tells us in order to effectively assert ourselves through healthy emotional communication we should follow his six point STABEN cue card for handling conflict: S source - make sure you are dealing with the person who is the source of the problem and has the means to solve it. T time and place - make sure that the discussion takes place at a favourable time in a protected, private space. A amicable approach - make sure the person feels at ease with your very first words, preferably the listener's own name. B objective behaviour - get to the heart of the matter, explain the behaviour that motivates your grievance while description to what happened. E emotion - you must say what emotions you feel as a result, like 'i felt hurt'. N need - what need do you feel that has not been recognised? i.e 'i need to feel like i matter to you'. (i plan to try this method out while talking to my mother! i will let you know how i got on!)

5.maximise omega - 3s. consider re balancing your diet by increasing fish content by eating more mackerel, herring, tuna etc (or veggie sources of omega 3 fatty acids - walnuts, spinach or flax seeds) and reduce unhealthy fats. (i have started taking supplements daily and will be eating more sardines etc!)

6. get high on exercise. 20 to 30 minutes three times a week can do wonders for anxiety and depression, pick an activity you enjoy, if possible join a group of like minded exercisers for motivation. (sadly for people with me/cfs this is not an option. i have to pace myself as even small amounts of exercise can make my symptoms much worse. (although some movement is vital to prevent further muscle wastage) for the moment i walk and do gentle yoga stretches for short periods each day if possible and i dream of the day i can get high on exercise again!)

7. wake up to the sun. our body's benefit from waking up more peacefully in the morning. all that is required each day to reset our biological clock is to replace our alarm clock with a dawn stimulator. (i would love to purchase one of these in the future)

8. tap into your meridians. in tibetan medicine emotional symptoms and physical ones are simply two sides of the same thing: an imbalance in the circulation of energy, the qi . acupuncture treatments can address this re balance. can be good for physical symptoms such as pain. (sadly a course of treatment did not help my pain - read about my experience here -but it works for many people)

9. seek a larger connection. for most of us a true sense of peace can only be reached once we have found out how we can contribute to the community that we live in and feel comfortable with the role we have in it. those who have the good fortune of being connected this way often feel propelled much beyond a simple well being: they feel that they draw their energy from what gives meaning to life itself, in good times and in hardships. (i felt this way for years when i helped out at a soup kitchen)

to find out more about this book visit the website which contains more advice and useful addresses.

odd socks

my life with cfs/me/fibro lately::wearing odd socks (and not even noticing for ages), feeling so happy when i'm lucky enough to have the energy to get dressed at all (even if that means wearing odd socks as that's all that's clean!), not remembering anything i did the previous day, trying to not get too upset by ignorant folk who do not understand (or even want to) my illness and can say hurtful things, feeling like i'm climbing mount everest when i'm only climbing the stairs, having to give up my prescription pain medication even when it helps a bit as the side affects far outweigh the benefits, reading many pages of a book before realising i have read it before, having such a fuzzy brain that i miss my stop on the train to my well being course and having to go all the way back, burning a pot of soup yet again by forgetting it's cooking and being sick and tired of being sick and tired!

watering my plant.

hello! im writing this at about 5.30am as orla has decided as she sometimes does when im in the middle of a nice deep sleep that it may be a good idea to wake me up! she is the only one of my furry babies that likes to let it be known when she fancy's a wee snack or is a bit bored or both! so she 'chat's' rather loudly and likes to rattle the bedroom blinds a bit. so here i am, hot waterbottle on my lap and a hot blackcurrant drink on hand.

since my last post i have had a bad cold that turned into a painful chest infection, and now back to another stinking rotten cold! i have been left feeling very weak and wobbly indeed. yesterday was the second part of a weekly course run by glasgow's homeopathic hospital, and i really struggled to get to it. i have also been feeling extremely nauseous the last few day's which didn't help! anyway i managed to make it and thought i would tell you a wee bit about it.

the wellness enhancement programme for cfs/me is run by glasgow homeopathic hospital (you have to be referred there by your gp) it has been designed to help with the feelings of isolation and hopelessness and loss of self esteem. it aims to develop a deeper understanding of the condition and so help self management and help increase your wellness and strengthen your ongoing commitment to self care. the first four parts are led by dr reilly a consultant physician, then the next 3 by a senior physiotherapist. here is the start of my wee snippets about what i am learning:

in part one there is a load of research based facts about health care and the mind-body link. long ago health care grew in response to the challenges of acute life threatening illness. now in the post industrial world we need to tackle new epidemics of mainly chronic problems that the old ways are failing to fix - like diabetes, heart disease, obesity, depression, chronic pain, chronic fatigue etc. thing's that there is no quick fix for. nowadays we even treat drug addiction with drugs, doctors agree that a holistic approach is essential to providing good health care, however due to constraints like time this is not being delivered. we have ended up with a system where the human side of care can be under strain and undervalued in a target-driven intervention model of care. i will be talking about my own experience of the uk's health care system - the nhs in a different post.

so many of us will have to bring about a balance in our health by our own efforts as it will not come from the system. new ideas like self management are springing up in health care.

it is certain that we can learn to support our own health and help our systems efforts to get back into balance, and help recovery. even when there is no potential to change on a physical level it seems there is always potential to reduce suffering, and improve over time our inner peace and well being.

we were asked to think of ourselves as a plant. if a plant is not watered it will wilt and fade, and if pushed enough it will go to seed and die. (you can change the image to one that works best for you like an animal that depends on you or a child that needs your loving care) the idea is to waken up in yourself the connection for a need to nurture for life to thrive. we need to nurture, stimulate and support our plant, the built in potential for human beings for growth and repair. so we need to create the right conditions for the plant to grow.

what would be water and sunshine for our plant, what does it need to grow and thrive? how are you doing as its gardener?

are we in contact with nature? we are nature and it seems that our body and system respond to the environment around us. if we are not in contact much with nature can we create a small place which helps us connect with beauty or peace. even just a stone or a shell on a table. we are introduced to mindfulness meditation and learning or deepening the practice, through it we can learn to wake up our positive mood centres at will, which leads to a healthier immune response. as there are endless variations on this the course has chosen heartmath, to develop well being inside ourselves.

in part two we explore what we feed ourselves. we had been asked to keep a food diary for a week. in it's continuous efforts to re build our health and well being as best it can, your body your body can only work with what you give it. it only has the food we eat and the fluid we give it, and the air we breathe to make tissues, our immune system, our natural pain killers and mood chemicals.

we learn a bit about traditional and industrial diets, deprivation, proper fats, how to even out our spikes and dips in our blood sugar, antioxidants, organic food benefits etc

my favourite part of today was seeing a 'self care' kit and asked to consider making my own. you can add things like your favourite beautiful music, a notebook for private thoughts or sketches, beautiful things to look at and touch like a feather, stones or shells, photos that return you to your heart, spark gratitude or recall what peace feels like, and a timer for meditation practice etc.

so what did i think? well most things were familiar to me (yup i often can't believe that with all my past very healthy eating, supplements, daily exercise, meditation, positive thinking and yoga etc i still managed to get this ill!) but i still felt i could gain from coming at it all afresh as if for the first time and reflect on where i have reached, and where i might go from here.

i understood the nutrition bit, but it's crazy that often at times when we need to nourish our body's the most our limited budgets don't stretch to organic food and beneficial supplements etc, like in my case. also what i found from keeping my food diary was the erratic eating patterns due to loss of appetite and sometimes being to weak to cook properly. i will try to eat a bit more regularly now and i have already consulted my old 'low gi' diet book for cooking tips. i am lucky that spring is just round the corner and that means getting back to my wee allotment to grow inexpensive organic veggies, be in nature and have lots of fresh air!

i am really enjoying the course. dr david reilly is a super guy who makes us laugh all the time and question our way of thinking. it has made me realise that i must try a wee bit harder with 'gardening my plant' like meditating a tad more and i am also going to put together my own little self care kit and i will reveal on this blog soon!