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10 Comments

  1. Its so good you posted this, I suffer with CFS and ME as well as Addisons disease for over 25 years and struggle so much with everyday life. Some people just never seem to get it or understand…they say they do; but not really. I lost everything through this illness over the years, my career, friends, self respect and its taken me many years to get my life back again. This is why I love my GGR so much it keeps me focused.

    You cannot explain just how exhausted you feel as waaaay beyond tiredness and just lifting your arm to brush your hair can be hard, let alone getting dressed and out of bed; which some-days is impossible. Plus the massive array of symptoms to accompany this disease too. that I don’t want to bore you with.
    When you mention CFS or ME to some people the usual answer is “Oh that’s the sleepy disease isn’t it….?” through the general lack of knowledge but sadly its so much more.

    Its so nice to have someone post this and I really hope it helps others understand we are not lazy people, we dont need to pull our socks up or just grab a coffee…I wish lol!

    Thank you so much for this it means alot Huge Hugs huny XxX

  2. Wow, just came across your post. I have suffered from ME since I was 11 – I’m nearly 26. I spend most of my time in or on my bed and use a wheelchair when I am well enough to get out which is extremely exhausting. I’ve more recently had immune tests done that show abnormalities and a chronic infection that is going on in my bladder, I’ve also been diagnosed with eds type 3 and pots. Currently trialling meds for mast cell.
    I’m really interested in finding out about meditation so will be checking out that link – thank you.

  3. Thanks for this article Sarah. It has helped me to understand the level of exhaustion felt by sufferers and your comments re. evolution etc certainly make sense to me as does the constant attack on the immune system.

    ‘Invisible’ illnesses are made worse by the mere fact that they are so hard for others to appreciate what the sufferer is going through. I’ve had clinical depression for years and, like you, have heard all the well-meaning platitudes. Upping the anti-depressants wasn’t having any effect. But last year my psychologist returned from a seminar & decided to try a new approach. I had various clinical tests done & it turns out I have sleep apnoeia, waking up to 30 times every hour. Another in the group actually woke up to 70 times an hour. Essentially it means that the brain never gets the deep sleep it needs. Back in May of this year I was given a Sleep Ap. machine that keeps my airways open and, hand on heart, within a couple of days I was feeling the benefits My mood has really improved, I have much more energy & actually look forward to things now. An unexpected benefit is that as I’m breathing filtered air through a humidifier, my asthma has also improved. It also highlights the need for specialists to keep up-to-date with the latest research.

    I sincerely hope that a remedy can be found for CFS that brings you the kind of relief I’ve found.

  4. I suffered from ME/CFS when I was 14 to the age of 16, and even now in my 30s I have bouts of complete exhaustion. It is something that not many people understand even members of my own family doubted me (Auntie).

  5. I’m glad you bought this to peoples attention I suffer from ideopathic hypersomnia I am exhausted 24/7 some days are better than others energy is precious and also stress is a MAJOR contribution. peoples attitudes can be devastating as “extra sleep less sleep ect ect ” makes no difference there needs to be more awareness of these “invisible diseases” they’re so misunderstood x

  6. I suffer from fibromyalgia and suffer terribly with fatigue, trouble is the brain still works at the same speed so I’m always planning what I am going to do that day and then don’t have the energy and its so frustrating. Makes me want to scream, especially when people don’t understand and think its an excuse to be lazy.

  7. I am a sufferer and I also suffer from insomnia so I am always tired out! Some days I seriously don’t know how I make it through the day! 🙁 Awful!

  8. My daughter has been bed-bound for 3 years with CFS, and I have suffered, though retained some mobility for 15 years. I have heard all the platitudes and well meant advice. We do wish they would rethink the name – ME got bad press because the medical profession didn’t ‘buy into it’ but at least it didn’t just sound like tired.