Tuesday, 17 April 2012

nothing changes

its been four years now since the first viral attack, there were a lot to follow each knocking me down a little further till there was no where to go.

as is normal when we are ill we assume that the Drs will fix it and that we will get better and life will carry on. but as many before me and many since me have discovered that this is not always the case, after being continuously ill for over six months and slowly deteriorating i was told i had cfs/m.e.

and sort of left to it, as there is no fix, no magic pill.

but life carries on,and i have carried on. i have built a new life its different, not what i had planned but it is not bad. i still have an amazing family if any thing they are even more special and amazing now.

out of the wreckage and the destruction that cfs/m.e caused my life a new slower, but some how more poignant life has developed, i now make the most of the little things, and value time spent with family and friends.

i no longer think of what i should be doing whilst im doing something, but make the most of the activity that im doing, i dont worry about tomorrow, it will be what it is and i will make the most of what i can.

at the beginning of this illness i was told to do what im doing and make the most of it. i thought the chap was daft as we all enjoy what we do, i now thank him for sharing those words as nothing is more true.

even the worst of days have something in them thats worth focusing on even if its just the fact that the sun is shining or my dog has come for a cuddle. the little things are what make life worth living.

those little things are what make life with cfs/m.e worth living.

Monday, 10 October 2011

things change and then again they dont!

well i have been a bit lazy and not kept my blog up to date and a lot has gone on since the summer.

i have had a course of treatment called lignocaine infusions (3 in total a month apart) and in some ways they were fab in that they helped the pain level and reduced it considerably but the payback from each infusion was not so much fun and took a couple of weeks to get over!

but now the infusion is wearing off, i have gotten use to less pain and my activity level increased accordingly and this caused its own issues as a lot of you know M.E is a tough task master and is none to keen on you doing more than it likes you to!

i have also been lucky enough to be asked to share my love of paper craft once a month for a couple of hours at my local craft center (Dalex crafts). an i have to say that i love it though it does leave me totally knackered and foggy for a few days after. but its worth it for the fun.

i have also been lucky enough to go away with my fab hubby in the caravan, we went to Cromer on the east coast for a fortnight, we did not a lot of anything which was great, i slept every after noon away, but we took google for a walk most mornings with me on my scooter, we found a lovely hotel garden to stop and have a cuppa in.

so i have had a busy and exciting summer as you can see and i havent told you about the best bit yet. my brother came home for a week with his family and had Lucas the newest edition christened i got to be god mother and managed to walk the length of the church with the candle with out falling (hubby held lucas as he was to precious to risk to my wobbly unstable body) though i did get lots of cuddled when i was sat in a chair so that was very cool.

right i have filled you in now with all of my summer adventures, i suppose i should let you know how things are now! but i have to say its boring as things are back to how they were pre infusion!
lots of pain and restrictions to movement, less energy as the pain is eating it up.

i have also started a new blog to display and share my crafty bits that i like to make. its called raescraftybits@blogspot.com

Sunday, 10 July 2011

ups downs tears and smiles

m.e is an illness of many faces, tears go hand in hand with smiles as you learn to cope.

one thing that seems to be very necessary to live with m.e and fibromyalgia is a sense of humor, and a complete bloody minded sense of determination to cope with all of the barriers put up by both the illness and society.

for the most part i have been able to cope with most of the challenges i have met with the help of my family and a sense of humor that may be slightly warped but it has allowed me to meet things head on.

i have met the challenge of not being able to work, or maintain a home and i won, i met the challenge of realizing i need to ask for help, and applied for benefits and called social services to help me have a life even if it is restricted.i met each medical appointment with a smile and hope no matter how many times i was told we cant help you. i remember the day i got a diagnosis being so great full that i cried i now new for certain i was not mad. little did i know that a large proportion of the medical profession and society thinks its nothing more than being a bit tired. oh i wish!

i watched my role in my family change from carer to the cared for. and for the most part i met it with a smile.

but there are time like this last week when the tears are there, the creep up unawares ready to throw a spanner in the works and turn how well you thought you were doing on its head.

this week, the m.e reminded me that no matter how much a wish it, it has not gone nor has it lessened in severity it was only hidden by the severity of the fibro. now that i have a temproy reprieve from the sever disabling pain that is fibromyalgia, the ugly truth that is m.e can be seen, it has not gone neither was it sleeping it was hiding waiting to catch me out, the tear came with vengeance awakened by the realization that everything is only temporary.

though i have to say i am lucky as waiting there to pick me up when i fell were my family tissues in hand, hubby rescued me from from the dispear that is realization, with love and humour he helped me to climb back out and find my smile again.

m.e is a disease that isolates, i am very lucky in that i have an amazing family and some great friends that have supported me thus far in this journey. together im sure we will be able to ride both the ups and downs.

Friday, 13 May 2011

the excitement of spring

on Wednesday there was an affirmation of life in my garden, yes strong is her the daffodils have flowered and the trees are green, but this was so much more exciting. when i went down to check on the chickens the suprise was there waiting for me with dr pepper the broody hen, she had been sitting on 6 eggs for 21 days, but that morning a miracle happened a small fluffy brown and yellow chick was tucked under her wings. over the next 12 hours another two hatched, so we now have three healthy chicks nestling with their mum.

today the chicks are moving about in the house and already feeding and drinking independently of mum. they climb all over her and peck at her as she clucks and mothers them protecting them and showing them how to be a chicken.

so new life is growing in my garden i have chicks in the hen house as well as in the hedges from the blue tits, sparrows and the doves.

i love spring it just reminds you that any thing is possible...

Tuesday, 10 May 2011

M.E awareness week

my blog has not been updated for some time because i began to wonder if i was only focusing on the negative of what M.E is.

this week is M.E awareness week, time to let others know what it means to those of us affected by the disease and what it does to our familys.

M.E/CFS is a neurological and autoimmune disease that affects some 250,000 individuals in the uk alone, a quater of those are under the age of 16.

people with M.E vary from being able to hold down a job and manage a family at the top of the end the disability scale (90%) to those at the bottom (5%) that are totally bed ridden and rely on another for all of there daily care, and every one inbetween. i fall in the 25% of M.E suffers that are considered to be severe. i function somewhere between 10% and 20% most days with the odd day at 5%.

the biggest issue for those of us with M.E is the lack of understanding of what causes it and how to treat this disease that at its worst is more debilitating than people with AIDS or end Stage cancer.

with the lack of understanding of the cause and how to treat comes the disbelief of some that its not a real disease, so we also end up having to prove our illness as it were to those in authority whither they be DRs, the manager at work and or the benefit people.

all who have to live with M.E are affected by it as it changes what the person can do so others have to do more, they get to see the difficulties, the pain, fatigue, confusion, fear and guilt that the person with m.e feel every day.

here is a comprehensive list of the symptoms that an M.E suffer may experiance, for some of us this is a complex and frightening disease where we will experience multiple symptoms at the same time with and increase and decrease through out the day.

Myalgic encephalomyelitis is an acutely acquired disease with multi system involvement which is characterised by post encephalitic damage to the brain stem; a nerve centre through which many spinal nerve tracts connect with higher centres in the brain in order to control all vital bodily functions – this is always damaged in M.E.

Central nervous system (CNS) dysfunction, and in particular, inconsistent CNS function is undoubtedly both the chief cause of disability in M.E. and the most critical in the definition of the entire disease process.

This diffuse brain injury is initiated by a virus infection which targets the brain; M.E. represents a major attack on the CNS by the chronic effects of a viral infection (an enteroviral infection). M.E. is a loss of the ability of the CNS (the brain) to adequately receive, interpret, store and recover information which enables it to control vital body functions. It is a loss of normal internal homeostasis.

M.E. is primarily neurological, but because the brain controls all vital bodily functions virtually every bodily system can be affected by M.E. Again, although M.E. is primarily neurological it is also known that the vascular and cardiac dysfunctions seen in M.E. are also the cause of many of the symptoms and much of the disability associated with M.E. – and that the well-documented mitochondrial abnormalities present in M.E. significantly contribute to both of these pathologies. There is also multi-system involvement of cardiac and skeletal muscle, liver, lymphoid and endocrine organs in M.E. Some individuals also have damage to skeletal and heart muscle.

Thus M.E. symptoms are manifested by virtually all bodily systems including: cognitive, cardiac, cardiovascular, immunological, endocrinological, respiratory, hormonal, gastrointestinal and musculo-skeletal dysfunctions and damage. M.E. is a distinct, recognisable disease entity with several unique features. Individual symptoms of M.E. include:

Sore throat, chills, sweats, low body temperature, low grade fever, lymphadenopathy, muscle weakness (or paralysis), muscle pain, muscle twitches or spasms, gelling of the joints, hypoglycaemia, hair loss, nausea, vomiting, vertigo, chest pain, cardiac arrhythmia, resting tachycardia, orthostatic tachycardia, orthostatic fainting or faintness, circulatory problems, opthalmoplegia, eye pain, photophobia, blurred vision, wavy visual field, and other visual and neurological disturbances, hyperacusis, tinnitus, alcohol intolerance, gastrointestinal and digestive disturbances, allergies and sensitivities to many previously well-tolerated foods, drug sensitivities, stroke-like episodes, nystagmus, difficulty swallowing, weight changes, paresthesias, polyneuropathy, proprioception difficulties, myoclonus, temporal lobe and other types of seizures, an inability to maintain consciousness for more than short periods at a time, confusion, disorientation, spatial disorientation, disequilibrium, breathing difficulties, emotional lability, sleep disorders; sleep paralysis, fragmented sleep, difficulty initiating sleep, lack of deep-stage sleep and/or a disrupted circadian rhythm. Neurocognitive dysfunction may include cognitive, motor and perceptual disturbances.

Cognitive dysfunction may be pronounced and may include; difficulty or an inability to speak (or understand speech), difficulty or an inability to read or write or to do basic mathematics, difficulty with simultaneous processing, poor concentration, difficulty with sequencing and problems with memory including; difficulty making new memories, difficulty recalling formed memories and difficulties with visual and verbal recall (eg. facial agnosia). There is often a marked loss in verbal and performance intelligence quotient (IQ) in M.E.

What characterises M.E. every bit as much as the individual symptoms however is the way in which people with M.E. respond to physical and cognitive activity, sensory input and orthostatic stress, and so on. The way the bodies of people with M.E. react to these activities/stimuli post-illness is unique in a number of ways. Along with a specific type of damage to the brain (the CNS) this characteristic is one of the defining features of the illness which must be present for a correct diagnosis of M.E. to be made.

The main characteristics of the pattern of symptom exacerbations, relapses and disease progression (and so on) in M.E. include:

1. People with M.E. are unable to maintain their pre-illness activity levels. This is an acute (sudden) change. M.E. patients can only achieve 50%, or less, of their pre-illness activity levels post-M.E.
2. People with M.E. are limited in how physically active they can be but they are also limited in similar way with; cognitive exertion, sensory input and orthostatic stress.
3. When a person with M.E. is active beyond their individual (physical, cognitive, sensory or orthostatic) limits this causes a worsening of various neurological, cognitive, cardiac, cardiovascular, immunological, endocrinological, respiratory, hormonal, muscular, gastrointestinal and other symptoms.
4. The level of physical activity, cognitive exertion, sensory input or orthostatic stress needed to cause a significant or severe worsening of symptoms varies from patient to patient, but is often trivial compared to a patient’s pre-illness tolerances and abilities.
5. The severity of M.E. waxes and wanes throughout the hour/day/week and month.
6. The worsening of the illness caused by overexertion often does not peak until 24 - 72 hours (or more) later.
7. The effects of overexertion can accumulate over longer periods of time and lead to disease progression, or death.
8. The activity limits of M.E. are not short term: a gradual (or sudden) increase in activity levels beyond a patient’s individual limits can only cause relapse, disease progression or death in patients with M.E.
9. The symptoms of M.E. do not resolve with rest. The symptoms and disability of M.E. are not just caused by overexertion; there is also a base level of illness which can be quite severe even at rest.
10. Repeated overexertion can harm the patient’s chances for future improvement in M.E. M.E. patients who are able to avoid overexertion have repeatedly been shown to have the most positive long-term prognosis.
11. Not every M.E. sufferer has ‘safe’ activity limits within which they will not exacerbate their illness; this is not the case for the very severely affected.

M.E. is similar in a number of significant ways to illnesses such as multiple sclerosis, Lupus and Polio. 25% of M.E. sufferers are severely affected and housebound and/or bedbound. In some cases Myalgic Encephalomyelitis can also be progressive, or fatal.

M.E. is an infectious neurological illness of extraordinarily incapacitating dimensions that affects virtually every bodily system.

i hope that you have found this informative and gain a greater understanding of what it means to those of us the suffer with this disease every day,

please leave a comment or like the blog if this has made you aware of what M.E realy is

Sunday, 10 October 2010

my days...

i suppose to the out side world my life must look boring and lonely, i spend most days at home, on my own as the family is at work.

i cant clean my own home or cook a meal on my own so what do i do all day!!

well i spend a lot of time on my computer talking to other people in the same boat who are ill and disabled by M.E, i laugh and joke and sympathies with this cyber friends who probably know more about how i feel than any one else. for me its safe to tell them how i feel and whats going on because they understand im not just moaning im stating fact.

the fact is that i have never felt well or not in pain for the last 3 years, my family dont want to here that every day, who would, it gets you down. but the need to tell someone is there and so my cyber friends who are all suffering the same understand when i say i feel crap, im stating a fact, not moaning and groaning but just saying how it is. i dont want to make people feel sorry for me or feel guilty cos i dont tell then. thats not the point it just helps me to tell someone who gets how i feel.

some days are spent crafting making cards for family and friends. i make jewelery for my daughter and as gifts. a couple of days are spent with my carer with whom i have a great laugh and get to go off out something i can not do on my own. i see my parents and get to spend time with them something that i would not have done if things had been different, but most of all i spend time with my dog, whi is my constant companion. and my wonderful family.

Sunday, 3 October 2010

all the fun of the fair

just recently i have been riding the M.E roller coaster with ups and downs following each other in quick and dramatic ways.

M.E is the illness that just keeps giving when you think nothing else could be thrown into the mix of symptoms that you deal with a new and confusing one turns up, leaving you wondering if its the M.E or if something else is going wrong!!

a week ago i had 24 hours where i could not sit or stand up with out severe pain in my head , nausea dizziness and a total drain of colour leaving me feeling as if i was about to collapse. this disappeared as quickly as it came leaving me feeling as i normally do im pain, and generally knackered,

so up and down i go.