Having ME is not about being a little bit tired!

The most dismissive and discriminatory thing people say when they are talking about Myalgic Encephalomyelitis (ME) is that a sufferer is just tired,

TIRED! does not cut it.

Imagine you have had a general aesthetic, you are counting down from 10 and when you get to 8 and feel yourself going under and you are asked to get up and carry on your normal daily activities. ME tiredness feels like that.

This misconception is made worse by clinicians and academics crossing over the terms of Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS). Originally ME was used in the UK and CFS in the USA and now many people choose to cover all the bases and use the acronyms ME/CFS. For us Myalgic Encephalomyelitis (ME) is the term we are comfortable with as we feel anyone hearing Chronic Fatigue Syndrome (CFS) thinks it is just about being a bit tired.

TIRED! does not cut it.

For 8 months my daughter was ‘too tired’ to leave her bed other than to crawl to the toilet, she barely had the energy to eat or talk. She was 13 and 14 years old! She then spent the rest of the next year able to potter around the house for a few hours a day but not really do anything that used up her limited energy. Now 3 years on she has to choose very carefully what she spends her energy on.

Elizabeth had to learn to PACE.

PACING became the only way she could live a little and not just exist. It allowed her to go from SEVERE ME to Mild-Moderate ME.

PACING is choosing what part of your life you spend energy on and what part to stay in bed, in a dark, silent room to allow you to do the thing you really want to for a short amount of time. PACING for a teenager was a hard lesson to learn and a heart-breaking one for me to witness. To go into hospital school for one hour required 17 hours of sleep or rest in a dark and silent room. This was the reality of her life in the dark days of this illness that people think is ‘ being a bit tired’.

TIRED! does not cut it.

She developed secondary Postural Orthostatic Tachycardia Syndrome (PoTS) because of deconditioning, where her body is not being used as it should be. PoTS means when she stands up after laying or sitting her heart races going from low 60’s bpm to over 120bpm. PoTS leaves her with dizziness, feeling feint, nausea, heart palpitations, tightness in her chest and she feels sweaty or clammy with a sudden onset all over head headache.

When her energy reserves were depleted she had problems with every system of her body, pulmonary, cardiology, digestive, endocrine, neurology, muscular, nervous and circulation. She experienced:

1.       Constant General tiredness never feels refreshed or energised.

2.       Extreme fatigue for between 18 and 72 hours 2 or 3 times a week sleeping for 75% of a 24 hour period.  3-5 days a week

3.       Brain fog about 90% of the waking day, struggling with cognitive demands, thinking, understanding, memory, instruction following and communicating 5-7 days a week

4.       Periods of low blood sugar ( between 2.8 and 3.9 usually a couple times a day during the extreme fatigue times.) 2-4 times a week

5.       Paleness, skin tone goes white, then grey,  most days

6.       Lack of energy and muscle strength, very weak. Shaking, aching joints, painful long bones. Every day

7.       Lack of appetite added to brain fog causing her to forget to eat every day

8.       Nausea almost all of the time

9.       Upper Abdominal pain, spreading under ribs –  sharp stabbing pains not related to eating or drinking every day

10.   Kidney region stabbing pains and feeling of being squeezed every day

11.   Headaches (Band round head but then spreading over back of head) 5-7 days a week

12.   Puffy face, feels like face is swollen. Every day

13.   Dry eyes and Blurry vision , eyes sting and are painful when in a fatigue state every day

14.   Dark eyes, with huge yellow coloured circles around eyes.  Every day

15.   Breathless, palpitations, chest tightness on standing or walking far. Every day

16.   Significant Blood pressure and heart rate changes from sitting to standing. Every time she makes this transition

17.   Inability to control body temperature, homeostasis, very sweaty on exertion, extremely cold when stationary every time she moves or sits

18.   Disorientating vision changes when going from sitting to standing causing balance instability every time she stands from sitting

TIRED! does not cut it !!!!!

2 thoughts on “Having ME is not about being a little bit tired!

  1. Helen I suffer from M.E. too. I’ve had M.E since 1999.
    I pace all activities, at my worst was bedridden for a year.
    I feel for Elizabeth at her age it would be natural to have energy and not have to suffer M.E.
    From twitter I know you’re a strong family all credit to you and to your lovely children.
    Really appreciate you raising awareness ,because there is always stigma around M.E. and fatigue conditions.
    Take care,

    Liked by 1 person

    1. Thank you for sharing, and yep PACING is the only way to have any sort of life.
      When I have a little bit of spare time (ha ha) I want to do a blog on pacing and one on the genome / genetic evidence that I think makes you more likely to develop ME

      Liked by 1 person

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