ChronicallyMe

Life with a chronic illness

About

I am a middle aged British woman and I have ME.  Sometimes it’s called ME/CFS, Chronic Fatigue Syndrome, Post Viral Fatigue Syndrome (PVFS),  or Chronic Fatigue Immune Deficiency Syndrome (CFIDS).

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 was formally diagnosed with ME by a Specialist in 2021.

I am mainly housebound but am able to go out from time to time with planning and support.  My laptop and mobile phone 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!

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 debilitated normal person.

My current main medications/suppliments:

  • Amitriptyline 40mg  (each evening) – for pain relief and migraine prevention
  • LDN  Low Dose Naltrexone 2.5ml  at night and 2.5ml in morning – for M.E.
  • Ivabradine 5mg twice a day (up to 7.5mg if needed) – for POTS
  • Mestinon 30mg daily – for POTS and ME energy
  • Sumatriptan 50mg (as required) – for migraine
  • B12 injections every week – for ME free radical scavenger
  • Folic Acid 1mg daily – to support B12
  • Dr. Stephen Langer’s Ultimate 16 Strain Probiotic with FOS one daily – for IBS and vaginal health
  • Vitamin D 5000iu (daily) – for SAD and M.E.
  • Evening Primrose Oil 1000mg (daily) – for M.E., general health & eczma plus extra hormonal balancing
  • Omega 3 Fish Oil 1000mg – M.E. & for digestion of fats
  • Magnesium Malate 1000mg – for M.E.
  • Multivitamin one daily – for perimenopause and anxiety symptoms
  • Inositol 500mg daily – for anxiety
  • Vitamin B2 – migraines and antioxidant
  • Macrogol – for constipation

Trialling:

  • Nattokinase 2000FU every 2-3 days
  • Serrapeptase 80k
  • Aspirin 75mg
  • Hyaluronic Acid 100-250mg – for bladder pain from NK

Previously also

  • Famotidine 20mg twice daily – MCAS
  • Cetirizine 10mg (2-4 times daily) or Diphenhydramine 25mg (2-3 daily) – MCAS
  • Sodium Cromoglicate – for MCAS
  • 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
  • Methylcellulose / Celevac 6 tablets once or twice daily as needed – for IBS

Other medical labels of mine I have discovered on this voyage of ill health include:

  • MCAS (2021)
  • POTS with Orthostatic Hypotension and Mixed Dysautonomia (2017)
  • Vulvodynia (2019)
  • Granuloma annulare (GA) (Had since 2003, self diagnosis 2023) Eczema (2003)
  • Blepharitis (2013)
  • 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: May 2023

17 responses to “About”

  1. Khürt Williams Avatar
    Khürt Williams

    I stumbled across your blog while poking around on WordPress. I do not know much about your ailments ( that is a long list ) but they do sound quite daunting. My wife was diagnosed with fibromyalgia almost two years ago and it has been very challenging for her and the whole family. She is always in pains and switching from one pain medication to another. I can only imagine how you feel and I am sure that sometimes she must feel quite alone.

    Plus, the lack of sleep keeps her in what she call “fibro fog”.

    I have taken on a project to build an social networking web site to create a community for people touched with fibromyalgia to share their experiences and become connected. Please take a look at http://fibromyalgia.ning.com/ Join or share with others who might have an interest.

    I hope that someday they find a cause and a cure for these painful chronic illnesses.

    Reply
  2. Sandy/Fighting Fatigue Avatar
    Sandy/Fighting Fatigue

    Hi! I wanted to see if you wanted to exchange links with me to another chronic illness blog I have. It is called IC Disease and the link is at http://icdisease.today.com. I will go ahead and add you over there. Hope that’s okay! I try to stop by here on a regular basis to read. Take care.

    Reply
  3. wellsphere Avatar
    wellsphere

    Your post on “Dental Sedation and ME/CFS in the UK” is great! I’d like to invite you to be a featured health blogger on Wellsphere — please email me for details.
    Cheers, Geoff
    —
    Geoffrey W. Rutledge MD, PhD
    Dr.Rutledge–wellsphere.com
    http://www.wellsphere.com

    Reply
  4. Steve Avatar
    Steve

    Have you considered a possible problem with your methylation cycle?

    Read this research

    http://www.drmyhill.co.uk/article.cfm?id=407

    You’ll need a username and password for this second one

    http://www.immunesupport.com/chat/forums/message.cfm?id=1242897&B=FM

    Its helping a lot of people

    S

    Reply
  5. Adam Smith Avatar
    Adam Smith

    Hi Rachel,

    I was searching for information on CFS as I used to suffer from it for a number of years after having epstein bar and found your blog very helpful.

    My company is doing a ‘Shoes for Reviews’ promo at the moment to get real user info about our products. Would you like some summer sandals like Birkenstock or Crocs to review on your blog?

    Email me back if you’re interested.

    Reply
  6. Alyson Avatar
    Alyson

    Hi there! I found your blog through other ME/CFS/CFIDS bloggers’ sites, and I have added a link to your blog on my own site. (I hope that’s ok!) I’m trying to find other bloggers with ME/CFS/CFIDS who are 35 years old or younger. Do you know of any? Thanks!

    Reply
    1. rachelcreative Avatar
      rachelcreative

      There’s my blogroll and links here http://delicious.com/rachelcreative/blog+cfs

      but I don’t know about everyone’s ages.

      Reply
  7. Rob Avatar
    Rob

    If you haven’t done so already, please read:

    460 – Lyme, FM & CFS

    Also, as a British woman, you may appreciate:

    Commentary: The Lonely Soapbox

    Best to all,
    Rob

    Reply
  8. Lee Lee Avatar
    Lee Lee

    Hey!!

    I have just stumbled accross your blog 🙂
    Great news about your disability support! I have just applied for mine and waiting to see what response I get. I’m single and housebound too so if my application is rejected I’m not sure what will happen??!!!

    Anyway, just wanted to say that I really enjoyed reading your blog and I will be back!! Feel free to drop in and read mine if you like 🙂

    Lee Lee

    Reply
  9. surprisingme Avatar
    surprisingme

    Hey there!

    I found your blog through another ME/CFS blogger, and I’d like to include you in my blogroll. Feel free to check out my blog too, I only started a few days ago, but there’s a few posts there already.

    Hope you’re having a pleasant evening. Such nice weather we’re having in the UK at the moment. Hopefully I’ll be able to get outdoors to enjoy it before it goes away!

    All the best,
    Jodi.

    Reply
  10. Joe Avatar
    Joe

    Dear Rachel,

    Firstly. Thanks! Your website is awesome. Your section on LDN is particulary brilliant, that alone will help countless people I’m sure. I’ve got an order on the way myself but am going with a different immune modulator in the mean time.

    My name is Joe, I’m 24 and live in Melbourne, Australia. I’ve CFS/ME for the last 6 years and am slowly recovering.

    I’m writing to let you know about a site I launched just last week. It’s called CFS Recovery Path – Treatments, Tools and Techniques and is a free resource inspired by all that I have learned from my own journey with CFS/ME over the last 6 years. I am a writer and researcher by trade and so felt I was uniquely positioned to create such a resource and figured it was the best way for me to help others in the same boat over the short term.

    Hopefully it can help you in your own journey

    It is designed to complement sites such as yours by providing a very simple, unbiassed and compassionate overview of all the info that cause most PWC’s head to spin. My aim is for people to leave feeling more hopeful, educated and with a smile on their face. I will add to the site each week with a series of articles and interviews assisting people in the practical steps required in recovery, focusing primarily on actions you can take and leaving the breaking news to yourself and Cort (from phoenixrising.com).

    I would very much appreciate your feedback and if you like the site also help in spreading the word (perhaps a link or a mention in a post). My intentions are simply to help educate people to empower them to take control of their own recovery.

    Hit me with your thoughts. Its exciting times in the world of CFS/ME.

    In the Name of Good Heath!

    Joe

    Reply
  11. Dominique Avatar
    Dominique

    Rachael –

    I was wondering if you would be willing to share your story on Invisible Awareness dot org (my new organization that I just launched) for the March 12th issue?

    You can tell it however you want and there is not limits on the length.

    I would love to give you the oportunity to shaer with people what living with this illness is really like.

    Here is a link to this month’s story and the site.

    Let me know what you think.

    P.S There is also a Facebook group and a Facebook Page that goes with the website.

    Dominique

    http://www.facebook.com/bygracenotmerit

    http://www.facebook.com/bygracenotmerit

    Invisible Awareness dot org webstie

    http://invisibleawareness.org/2011/02/12/laurels-story-2/

    Reply
  12. Martha Perry Avatar
    Martha Perry

    I have IBS along with the fibro, inflammatory arthritis and CFS for starters. I have felt better for about 4 months now on a moderate paleo diet. I also do not eat any milk products which have been a signif issue for over 30 years with immediate IBS symptoms. Yeah, a diet restriction when your life is already so harsh can feel restrictive yet if you feel better than it does not seem so bad for sure. The main part of the paleo diet that works for me is the absence of about all grains (except when I cheat and then I pay). I do not have celiac disease but still the grains are not good for me based on how I feel with and without them. There are lots and lots of foods that I can and do enjoy and even can eat out on this diet. The paleo diet also has a lot to do with changing your concept of what is a healthy fat or sugar and more, especially grains. The paleo folks I know on Facebook are so supportive of each other with lots of yum recipes posted. There is a focus on exercise to but I have openly said that I cannot tolerate much of that and the feedback is that the diet is helpful even if you are more sedentary. I am NOT a fanatic in my approach but what I eat does make such a difference in how I feel “gutwise” that I thought I would pass this idea on and let’s face it, who needs IBS when there is enough to suffer with already. I can’t say I was excited to try this diet but am glad I did. One of my daughters is in college to become a dietician, and she is paleo. Also, D-ribose (supplement) has helped me more than I can say.

    Reply
  13. michelle johnston Avatar
    michelle johnston

    Hi Rachel, Just came across this info, as I subscribe to your amitriptilyne page. I have CFS and have been reading up on LDN. I want to approach my GP with as much information as possible about this drug.Are you still using LDN and has it helped. I know you must get hundreds of emails. Just want to stop feeling like a flaming zombie :0). Best Wishes Michelle UK

    Reply
  14. Carol M. Avatar
    Carol M.

    Oh my gosh, I have yet to read a post so similar in health conditions as mine was in Oct 2000 until May 2001. Then I got better. Then I got extremely ill and probably nearly died. Do not Know for sure about death because I was far to sick to tell. Death probably would have been far earier than what the next 3 years held in store for me. But, as you can see I am still alive and learned oh so much as to how to manage my health conditions. So many of my problems I had then have gone, but with the continual state of unhealthy other things begin to break down.

    Considering what I have been through I am about 75% better than I was 5 years ago. For the past 4 years I have been the primary care giver for my 87 year old mom. 6 years ago I did good to take care of me every day.
    I am not totally well but as I said I take care of my mom. I actually think I have done enough research that I can get well. I am determined to get my ability to walk distance back and do it without breathing like I just ran 10 miles
    I am currently puttin together a new plan of attack on my health with what I have learned from what has helped and what has not. I would be happy to share the information and give an update at time progresses. I am not very good at the blogging thing so I’m not sure where any good positive infomation would best benefit your web site or you.

    I should mention on particular thing, is I am not diagnosed with ME or CFS even though my last Dr. said it sounds like that is what I have. But she knows it not either of those because I know how I became sick. If I had left my job 6 months earlier when I first got sick I would have never know it. See our building was contaminated with some type of toxic mold.

    Everybody got sick, but all displayed a wide a varying range of syptoms. Yet we all shared some common symptoms. Everybody had different diagnosis all the way to lymphnoma. My dear friend died within 2 years of exposure. One of the employees had massive migrains, then what the Dr.s called a brain anyurism/stroke leaving her at 43 in a vegatative state.
    I have learned to manage my health and have even progressed in getting better. But I have to admit I think I could have done better through these past couple of years, especially with diet which I can tell you is a major factor. I had the same problem with my hands as you. But havent had a break out now in 5 years. Oh my gosh it was so painful! I should mention I also lost 3 toes on my right foot thanks to this and a wrong pharma drug prescribed by a Dr.

    My name is Carol, I live in Texas, USA. Please feel free to email me as I would be happy to share further if it would help someone.

    Reply
  15. fallingthroughtheworld Avatar
    fallingthroughtheworld

    I’ve also had ME for too many years now. I recently published Falling through the World ~ A journey through ME. It is a brief, easy to read novel based loosely on my own experiences. I thought fiction might be a good way to raise awareness without sounding too dry and scientific.
    As a blogger who also suffers from the condition, I wondered if you might be interested in reading it?
    If so, I’d be happy to send you a complimentary copy. There would be no obligation to read it but if you did and liked it, you might consider mentioning it in one of your posts. But, as I said, there would be absolutely no obligation to do this. I know how limited everyone’s time and energy is.
    If you’re at all interested, you can get in touch wiht me at info@fallingthroughtheworld.com
    Please feel free to delete this comment. I’m not trying to be spammy, just using it as a method to get in touch with you.
    Thanks
    Rachel

    Reply
  16. Kate Avatar
    Kate

    My husband has recently been diagnosed with CFS, so I am really happy to have found your blog!!

    Reply

Leave a comment