• Missymoss - Living With It

    I have got M.E. - Myalgic Encephalomyelitis - Chronic Fatigue Syndrome - Post Viral Fatigue Syndrome - Chronic Fatigue Immune Deficiency Syndrome - or 'Yuppie Flu' ... Take your pick!!

    I started with tingling sensations in mid 1996 to my back, neck, and limbs after raising a stiff sash window at work. It was also at this stage I first experienced what I know now as "brain fog". The week before the window incident I had a Hepatitis B booster and my colleagues expressed concern at my ongoing pallor after this. No diagnosis was made, although I was referred to a neurologist and an MRI scan at that time ruled out a cervical disc problem and also MS.

    The symptoms receded, but by November 1997 it was worsening again, and this time I was encouraged to try to exercise gently on the exercise bike at the physio gym. This is what triggered the very acute episode, which I have never totally recovered from, with back and neck spasms, clawed hands, dizziness and nausea, poor thought processes, and profound and continual muscle pains in my legs, amongst other symptoms.

    My general condition deteriorated somewhat over 2002/3 due to a series of major traumas including a car crash, a burglary and my husband leaving us. I then rather overstepped my limits at my elder daughter's wedding in July 2004 setting me back once more.

    So, as this wretched illness affects us all differently, here is a general overview of my current symptoms and how they affect me.

    General fatigue - I am generally able to cope as a 'non-disabled' person if I refrain from activities that require physical stamina; I need to be careful not to overdo things and get too tired or overstressed. Also if I pick up any infections, such as a cold, my condition can be adversely affected for some time, however I have had no time off from work solely as a result of the condition since 1999.

    Legs - My leg muscles are generally weak and can be extremely painful, although the amount I can do is now finally increasing. I can walk around the house but I have chairs and stools at strategic points, and I use a self-propelled manual wheelchair at work, or to get out and about generally. I can now climb one flight of (household length) stairs, and no longer have to use my arms to pull myself up by the banister rail, or crawl upstairs, although I still try not to use the stairs very often. I am able to drive an automatic vehicle with power steering. A manual gearbox still causes considerable discomfort. On a 'good' day, I am now able to stand for around 7 or 8 minutes for a shower, however walking remains difficult. If I overdo things by standing, walking too far or overusing in particular my upper leg muscles, then I get severe burning pain in my legs which can last for days or even weeks. If this happens, my general condition also deteriorates.

    Back and neck - I have had back and neck spasms which were very profound until 1998, I had MRIs in 1996 and 1998 which showed nothing of interest other than mild wear to two of the thoracic vertebrae. The back problem was set off again following the RTA in 2002. There is much less muscle spasm in my shoulders and back now, although it has not totally resolved. My arm muscles seem to be almost back to my normal pre-1997 condition, and I can self-propel my lightweight wheelchair for good distances.

    Hands - I had little use in my hands for 6 months from November 1997 and they were clawed tightly; tendonitis of the hands was diagnosed at the time. My left hand is now un-clawed completely and I am able to use it normally, my right hand is still a little clawed and will respond badly to a lot of use, when the fingers swell, draw in towards the palms, and become hot and mottled.

    Numbness and tingling sensation - I no longer have the general numbness and tingling sensation to my back and limbs, which started initially in the summer of 1996. Very occasionally however, if I have really overdone things, a small patch of my cheek becomes numb, and a hand-sized area around C7 has never regained any sensation at all.

    Joint pain - I no longer have generalized joint pain.

    Pallor - Now very intermittent, only if I've really overdone things badly or I have picked up a 'bug'.

    Congested glands, particularly in my neck and underarms - this has been improving dramatically over the last year since I started therapeutic lymphatic massage with an Osteopathic ME specialist.

    Marked lethargy - At present, I am 'normal' most of the time if I keep within my physical limits and am otherwise well. Taking a shower or bath can still be quite wearing, requiring a short rest afterwards, and housework is still all but impossible; although I am able to prepare meals using a tabletop oven/microwave, a carefully thought out kitchen arrangement, and stools to perch on while preparing the food. I currently employ a cleaner for 2 hours per week.

    Feeling of intoxication or 'brain fog' (light headed, poor thought processes)-This is now very rare if I keep within my limits, although singing loudly will always set this off. I finally gained my BSc Degree with the Open University earlier this year, and I am currently continuing with my studies towards an Honours degree.

    Tinnitus - Very occasional now, but quite profound for about 12 months at the start of the condition.

    Floaters - this is still affecting my sight, particularly in my right eye. This remains particularly noticeable if I do close work, and seems more pronounced when I feel unwell or tired. A recent check-up has shown no change and no serious pathology.

    Raised pulse rate/ Palpitations - This is intermittent. Initially, in 1997, my heart rate increased from a resting rate of about 60, to about 85 to 90 bpm with marked ectopic beats. My thyroid screen was normal. Changes in heart rate and rhythm are a less well known but documented symptom with this condition. This symptom reverted to normal and was normal for at least 2 years, however my heart rate dropped again in 2003 to between 40 and 50 bpm, again with extra beats, and is currently fluctuating between the two. I had repeated blood tests for a thyroid check in summer 2006 when a continuing low heart rate coincided with a period of lethargy and very dry skin, no abnormality was shown.

    Nausea and difficulty eating - This was a major problem for about a year, and can still occur if I have overdone things again. My weight now increases if I'm not careful!

    General Abilities.

    Anything that requires physical effort needs careful consideration, but I am able to have a varied and active life in spite of this. I am currently employed, working 37 hours a week in a mainly office based job.

    I am now able to attend Church regularly if I remain seated throughout and sing quietly. My head will still spin and I will feel very shaky when I sing out with any power. My breath control is improving and I can now hold a note without gasping (I was a semi professional singer for many years before becoming ill).

    In Summary.

    I have been affected by the symptoms of M.E. since the middle of 1996, severely so since October 1997, and diagnosed in 1998 by a Neurologist. My symptoms have fluctuated since that time. There has been a gradual improvement from what I was able to do when this began, to what I was able to do at the beginning of 2002, with a noticeable downward trend from 2002 following a series of major traumas. I have been having osteopathic treatment by an ME specialist since autumn 2005. Since starting this, the downward trend in my health has stopped and my overall abilities are now slowly beginning to increase. The muscular spasm problems, lymphatic tissue congestion and 'brain fog' are greatly improved, and as a bonus, my colour vision has also sharpened. When I began this treatment in 2005 I was scoring 3 on the "wellness scale" with '10' being fully fit, and '1' totally incapacitated. I was re-scored during summer 2005 as 7 out of 10, and in the last few months many who have known me for some time have commented on the marked difference in my general appearance of wellbeing and increased abilities.

    I am not better, and probably never will be totally well again, however careful day-to-day pacing stops me hitting a 'brick wall'; and with 9 years of experience of this condition, pacing is now second nature, and the considerable improvement since I began the daily lymphatic massage programme is allowing me to function at a far higher level than I have previously.

    There's always room for hope!

    Wendy