One of those rubbish weeks where ME is at its worst. This has meant no socializing at all and just struggling to survive hour to hour plus lots of time asleep. It is not fun and I always forget quite how bad it can be. I forget that ME it can be 100 times worse that just feeling “ugh” (one of my more descriptive and polite words). But it does make me think of others bed bound 100% of the time. There is a “sliding scale” for ME on severity. Unfortunately I am in the 20-30 group which is pretty limiting I must say. (An example of a scale at the end of this narrative).

What does surprise me is how many children and young people have ME. Plus more women than men. Goodness knows what causes it but it does make me wonder about modern living / food / gluten (processed, sugar, additives, preservatives) meat (vaccines, antibiotics) / vaccines / life style and the effects that this may have on our bodies … But we do not know. An interesting book “Epidemic of Absence” has suggestions about auto-immune and modern illnesses with our advances in medicine, changes in life-style and effects on our bodies. Plus hence my eating regime – now Paleo following my isolation diet – I am still re-introducing food groups. Dairy next on the list.

I am not sure if this “flare up” is due to the 2-3 days when I did eat sugar and processed foods. Or is it the Qi Gong experiment (which was done sitting down), the few extra steps I took in meeting a friend for lunch … I do not know but the kick back lasts not just for days but is extending into more than a few weeks.

Pacing is considered to be one of the key ways to manage living with ME. This would mean firstly only do 50% of what you feel you can do. From waking up, rest between activities. For example, after showering (using a shower stool), then lie down quietly for 10 minutes, then sit to clean teeth. Sit on a stool to prep breakfast, eat, and lie down for 10 minutes. The problem is that life is not paced. So when we do activities such as socialising or shopping, it is not easy. Pre-empting resting i.e. bed rest for 1 hour before visitors arrive, can help.

Chris has got used to me sleeping in the car – ear plugs, eye mask, comfy pillow and a blanket accompany us on all outings. Thank goodness for the iPod with earphones for Chris and that I have a very considerate and kind fiancé. Family and friends also seem accustomed to my disappearing act to sleep half way through a get together. I hate saying I feel rubbish as it draws attention so I am horribly rude and just vanish.

One of the most unpleasant symptoms is sensitivity not just to noise but it can extend to visual activity. I have found if someone is talking “at me” particularly intensely, then I frequently start to feel extremely ill, and it increases each and every minute, until I have to find an excuse to get away. The pain is excruciating – my personal description of the symptom is of “needles being dragged over every vein at once” – it is deeply uncomfortable and grim. This also can extend to include visual activity –Chris throwing the ball for our dog Ella – I could not bear to be around as it literally hurt me watching. Weird but true.

The onset of ME is scary as other illnesses are ruled out plus no current medical defined indicators to define the illness. Doctors work through ruling out other illnesses. In Berkshire with no ME specialists to help, it is down to individual doctors recognizing and having knowledge of the illness. My main advice for anyone is to read up on the ME Association or ME Action websites and register on an ME forum such as “Foggy Friends”. I found Foggy Friends in the first few months of being seriously ill and it has been invaluable in my diagnosis and working through the next steps, best medication and knowing more about the illness. Having contact with others “living with ME” has made the illness less lonely. I do not know anybody locally who has the illness and would love some “ME pals” just to sit and vent with.

The myriad of symptoms that affect me include:

• Flu type symptoms – swollen glands, fever, ear-ache, aching all over gradually worsening to feeling horribly sick.
• During and post exertional malaise – where rapid downhill slide often starting with the flu type symptoms but developing from the time of exertion, lasting hours, days, weeks and even months. Exertion from standing for 5 minutes, lifting something that is too heavy – moving a large chair, vaccuming, walking up the garden, cooking, shopping … anything to excess.
• Nausea – hate this one as well.
• “Brain fog” where I cannot think clearly, words become jumbled, slow thought processes and a weird type of headache. At worst I cannot talk – that is scary!!
• Myalgia where muscles are painful and sensitive – sometimes where I cannot even have a sheet touching me.
• Numbness and tingling – particularly in the feet and legs – although at present this is all around my mouth. One of non-painful symptoms
• Tachycardia with high heart rate – waking up this week in bed 120 bpm, palpitations and sort of heart jumping. Every minute I stand my heart rate increases way beyond what it should be. (This can be a symptom of PoTS – postural orthostatic tachycardia syndrome – with high heart rate on standing, many sufferers pass out within minutes’).
• Weird headaches.
• Tiredness but extreme where I have to sleep with the worst exhaustion imaginable – not just whacked at the end of a week – I wish!!
• I particularly hate this one – Breathlessness where it feels like I have to force my body to breathe – no breathing through the nose seems possible, but has to be forced breathing through the mouth – feels like I cannot get enough oxygen.
• Sleep reversal, where it is not possible to sleep at night at all – rarer for me thank goodness.
• Problems with temperature control. Feeling freezing cold even when hot for the UK – yes I can be wearing thermals in the middle of the summer or I go to bed fully dressed with thick sweaters plus the electric blanket on full and I am still cold.
• Forgetting – like now I am sure I may have blogged some of this information before, but oh well I cannot remember, I could check but might just post anyway.
• One I nearly forgot – massive cravings for chocolate!! I usually give in but trying to combat this reaction.
• A few of the joys of “living with ME” and absolutely no predictability.

ME severity scale:

100: No symptoms with exercise. Normal overall activity. Able to work or do house/home work full time with no difficulty.

90: No symptoms at rest. Mild symptoms with physical activity. Normal overall activity level. Able to work full time without difficulty.

80: Mild symptoms at rest. Symptoms worsened by exertion. Minimal activity restriction needed for activities requiring exertion only. Able to work full time with difficulty in jobs requiring exertion.

70: Mild symptoms at rest. Some daily activity limitation clearly noted. Overall functioning close to 90% of expected except for activities requiring exertion. Able to work/do housework full time with difficulty. Needs to rest in day.

60: Mild to moderate symptoms at rest. Daily activity limitation clearly noted. Overall functioning 70% to 90%. Unable to work full time in jobs requiring physical labour (including just standing), but able to work full time in light activity (sitting) if hours are flexible.

50: Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity; overall activity level reduced to 70% of expected. Unable to perform strenuous duties, but able to perform light duty or deskwork 4 – 5 hours a day, but requires rest periods. Has to rest/sleep 1-2 hours daily.

40: Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity. Overall activity level reduced to 50-70% of expected. Able to go out once or twice a week. Unable to perform strenuous duties. Able to work sitting down at home 3-4 hours a day, but requires rest periods.

30: Moderate to severe symptoms at rest. Severe symptoms with any exercise. Overall activity level reduced to 50% of expected. Usually confined to house. Unable to perform any strenuous tasks. Able to perform deskwork 2-3 hours a day, but requires rest periods.

20: Moderate to severe symptoms at rest. Unable to perform strenuous activity. Overall activity 30-50% of expected. Unable to leave house except rarely. Confined to bed most of day. Unable to concentrate for more than 1 hour a day.

10: Severe symptoms at rest. Bed ridden the majority of the time. No travel outside of the house. Marked cognitive symptoms preventing concentration.

0: Severe symptoms on a continuous basis. Bed ridden constantly, unable to care for self.

Please, note that “desk work” includes everyday tasks such as sitting at a table to eat or read.