I am an over 40 yr old British woman and I have ME/CFS. Sometimes it’s called Chronic Fatigue Syndrome, Post Viral Fatigue Syndrome (PVFS), or Chronic Fatigue Immune Deficiency Syndrome (CFIDS).
I am a moderate sufferer (although on some criteria I am borderline severe). I suffer many varied symptoms which tend to cycle and change. I was diagnosed with CFS in January 2007 although I first reported mild symptoms to my doctor in October 2005. I am mainly housebound but am able to go out from time to time with planning and support. My laptop is my lifeline to the outside world.
This blog is about me and my illness. My illness isn’t everything I am. I enjoy many things and I also have a blog focused on my art. But this ChronicallyMe blog is focused on my life with ME/CFS – my ups and downs, frustrations, revelations and joys (yes joy).
I like to try and imagine I am a little bit anonymous when I write here (even though it’s easy to make the connection to who I am elsewhere). I feel I have things to say, that others may relate to, which are difficult to say in front of my loved ones. Not because they can’t or won’t listen – but because there’s so much of it rolling around in my brain and my heart. Things which are often difficult to say to other people.
So this blog is a vehicle – but hopefully not selfish. Maybe some of you will relate to things you read, some of you might have the chance to see the world through the eyes of a recently debilitated normal person.
My current main medications/suppliments:
- Amitriptyline 30mg (each evening) – for pain relief and migraine prevention
- LDN Low Dose Naltrexone 2.5ml at night
and 2.5ml in morning– for M.E.
- Sumatriptan 50mg (as required) – for migraine
- B12 sublingual 1000ug (daily) – for M.E. particularly brain fog & fatigue
- Saccharomyces Boulardii probiotic 1 (daily) – for IBS & general health
- Vitamin D 5000iu (daily) – for SAD and M.E.
- Evening Primrose Oil 1000mg (daily) – for M.E., general health & eczma plus extra 1000mg as required for PMT
- Omega 3 Fish Oil 1000mg – for digestion of fats
- Magnesium 1000mg – for M.E.
- Methylcellulose / Celevac 6 tablets
once or twice dailyas needed – for IBS
- Macrogol – for constipation
- D-Ribose 2 x 5g (daily: breakfast & lunch) – for M.E.
- L-Glutamine 4 x 2.5g (daily: breakfast, lunch, dinner, bedtime) – for M.E. particularly gut disfunction & fatigue
- Zinc 15mg (daily) – plus extra 15mg when required for fighting colds/viruses (
used to be chelated but this no longer meets EU regulations)
- Sodium Bicarbonate/Potassium Bicarbonate/Citric Acid in water – as required for bloating/gas associated with IBS (I also use Resolve)
- Higher Nature Probio Daily (Lactobacillus Sporogenes Probiotic) 1 tablet each meal – for IBS
Other medical labels of mine I have discovered on this voyage of ill health include:
- Mild Vagal Dysautomnia
- Vasovagal Syncope – the sight (and thought) of blood and gory injuries makes me light headed and pass out/faint
- Mittelschmerz – (mid cycle pain) I get cramps sometimes around when I ovulate
Last updated: 24 Mar 2017