Thursday, 17 February 2011

Welcome to my life!

Note, April 2011
This was the first blog I ever wrote here. It was rather clumsy and didn't really say everything I wanted to say, so I re-wrote it and put it up as a page on my blog instead, once I'd had some time to get used to things! You can see the revised version by clicking on the 'My ME Story' tab at the top of my blog. :)

I'm taking comments here for the page, because comments are turned off on the pages themselves. Thanks for reading! I appreciate every single one of you!

Hi! Welcome to my sparkly new, admittedly slightly strangly named blog. :) (see sidebar for a brief explanation)

I've been putting off posting for days now. Partly because my brain fog's been so bad, but in truth, mostly because I've been terrified of posting. Blogging is scary, lol! I feel like I have a lot in my heart that I want to say ... but whether or not it will be interesting to anyone else, only time will tell!

So, I thought I'd start by just introducing myself, and telling you a bit about me.

15 years ago I was a relatively happy nursing student, working night and day to qualify. I had friends, a life, and a purpose. I was, arguably, a workaholic - definitely type A personality, lol. I was working 5 day a week shifts, running a Sunday School at my local church, involved in lots of other projects, plus of course doing my uni work. I didn't have a spare minute to myself most days.

I was at work one day, on an Ear, Nose & Throat ward in the children's hospital, when I very suddenly started feeling very, very ill. I was trying to just finish my shift so I could find my way home on the bus and collapse in bed, thinking that I must have a chest infection or something coming on. (Those are regular occurrences in my life due to having the wonderful combination of asthma, & a crappy immune system) I remember I felt so extremely exhausted that I could hardly hold my head up. I was bending over my paperwork at the nurses desk when a nurse standing behind me uttered a startled cry and started looking all worried. Turns out I had a gland literally the size of a golf ball on the side of my neck. Lovely.

I somehow managed to get home, and spent the next several months barely leaving the bed or sofa, and just about avoiding being hospitalised, with my housemates looking after me as well as they could around their own busy lives ... slowly getting more and more behind on my university course. It was glandular fever. And believe it or not, this was the second time I'd been hit by it in my life - first having had it when I was in my mid teens, directly after a bout of chicken pox. Again, I had had chicken pox before, as a baby. Now, you're not meant to be able to get glandular fever OR chicken pox more than once in your life. Wasn't I lucky!?!

Even when I wanted to push through my symptoms and go back to work, I couldn't, because being a nurse, I couldn't return to the wards until the glandular fever had run it's course. Still, I told myself, eventually it would be gone, and I could catch up at uni, and get on with my life. It could be worse.

And eventually, my blood test came back clear, and I immediately pushed myself back into my busy uni schedule again - this time working even harder, to catch up on all the work I'd missed. To be honest, it was an awful time. I'd force myself through my lectures, with a LOT of caffeine ... then in every break, small or long, I'd literally lie down in a corner of the common room, near my friends, and fall asleep! Looking back, it was just insane to have gone back to uni in that kind of state ... but I had no idea then that doing so could trigger a permanent condition. (I'd spent my whole life, pretty much, working hard despite numerous and consistent illnesses - this wasn't any different, right?) Well, despite the struggle, I DID manage to graduate, albeit several months after the rest of my class.

Fast forward through the next few years of working as a Neonatal nurse in a highly intense ICU environment; (at first full time, then dropping to part time as my health began to deterioate and I was unable to keep up the pace), getting diagnosed with post viral syndrome, then M.E., getting married - to a man I loved very much but who turned out to be abusive both emotionally and physically (but that's another story!); & finally leaving said man ... and I was living in a rented house with a good friend - feeling like I was finally free, and could live my life the way I wanted again ... when I was suddenly struck with a really serious kidney infection, which landed me in hospital for a week.

And that's when my life fell apart all over again.

The infection finally cleared up, but between that and the stress of leaving my husband, (within a judgemental church environment) my M.E. went into a major relapse. This was, I think, somewhere between 6-7 years ago, and I haven't been capable of working a day since. (Dates are fuzzy for me because my memory problems are so extreme!!)

Since that initial relapse, I've bounced between being housebound & bedbound, being cared for by the most amazing best friend you could ever hope for, and I've had to learn that there are some things in life that you can't just push through. (No matter how much your doctors and the benefits system might like you to, lol!!) At this time, I've been completely bedbound for a year, & my pain and fatigue are so far showing no signs of letting up, not to mention a massive & rather scary list of a zillion other symptoms - most of which go completely unchecked by a doctor, since I live in the inner city and our doctors surgerys have little money or resources, and home visits are almost an impossibility. (i've had a home visit a grand total of once in the entire time I've been housebound!) My condition waxes and wanes a lot, but in the last 6 years I don't remember a single day when it's been a simple task to just leave my bed and get to a bathroom, or make a cup of tea, or well - anything at all, really! Every piece of energy I use has to be paid back in increased symptoms at some point later - like my body is demanding taxes. And all this while the world goes on around me, my friends and family moving on with their lives, building families and careers ... and me feeling stuck in one place, with an illness that isn't understood, or even believed in by many medical practitioners, never mind by the public in general. I've had to find ways to hold onto hope during some very dark times. I suppose it's become kind of a mantra to always try to find, and hang onto, the good and beautiful and hopeful things in life.

And so, I'm writing to you from my bed, just thankful that I'm able to do so - for now, anyway! I hope that this blog will be a positive place to be, and that it will reach even just one person who thinks that M.E. isn't a 'real' illness, and change their mind about it.

Thanks for listening!

Susannah's Signature
I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)



  1. I am sorry to hear your story but do you know what triggered your illness in the first place? As a health worker did you have a vaccination? My daughter had M.E for 5 years, recovered then did 2 years of medical school within a week of having the hep b jab she became very ill and has had to take time out of her course.

  2. Welcome to the blogosphere! I wish you luck in your mission. I've been trying to spread accurate information for a while, and have no idea if I'm solely preaching to the converted.

  3. Hi Kate! :)
    I think almost certainly the main trigger for me was the severe bout of glandular fever ... but I probably did have vaccinations sometime the same year because I was training to be a nurse - but I honestly can't remember exactly what happened when or in what order - so it's hard to be certain.

    I'm so sorry to hear about your daughter - it must be so hard to watch her go through that, especially after seeing her recover and then lapse back into it. How terrible for her to have her life messed up twice by this horrible illness!! I suppose it's possible that in her case, the physical and mental strain of such an intense and busy course could have been a secondary trigger, along with the hep b jab. It's so frustrating not to know anything for certain, isn't it!?

    I am certainly very careful about what injections I have now, as I'm concerned they could cause me worse problems. I usually get a flu jab each year because I have asthma too, but I didn't this year because they added the swine flu vaccine into it and I didn't trust it.

    Hi Cinderkeys!!
    Thanks for the welcome, heh. :) Yea, hard to know, isn't it - since I guess mostly the people most interested in M.E. are those already affected by it in some way.

    I think Kate has proved though that some family members and perhaps friends of sufferers do check out the blogs though, so that's a good sign! :)

    Will check out your blog! :)

  4. Hey Susannah!

    I wonder how many of us are aimed towards healthcare as a career?

    My ME developed when I was 16 and has slowly worsened over the years. I eventually became a nurse too after 11 years in college (brain fog is awful!). Was an ER nurse for 5 1/2 years before I worsened enough that I couldn't do the job.

    I sometimes (half) joke that my 5 year plan is to pay off as much debt as possible before I end up on full disability. Rather scary trend, watching myself slowly worsen from 70-85% functional...

    One last thing I want to comment on. It took my wife almost 4 years of marriage to believe my ME was real. What changed her mind? I was blessed to be able to try an experimental anti-viral medication. I became much better (85-95% functional) for about 20 months after the 6 month treatment.

    So. I have hope for us all.

  5. Hi Brent! Good to see you again! :)

    How interesting that we were both nurses! Perhaps something to do with us both knowing what illness was at an earlier age than perhaps a lot of people? Sounds like you were in a similarly high stress job to me ... ER & ICU are about the worst places for people like us to be, probably - but that's where we landed.

    Can I ask you something about that? I've always wondered if the reason I was able to keep working as long as I did was precisely BECAUSE my job was so highly stressed. I have major adrenaline issues - the slightest thing can set it off... so the pressure of the kinds of things that used to happen on NICU used to give me a pretty much constant adrenaline rush while I was at work, meaning that my head was clearer and my body better able to function. Of course I'd crash when I got home - as much as I was able with my particular brand of husband - but while I was at work, I coped. You're the first person I've spoken to with such a similar job - wondering how you found it?

    It is just so scary to watch your body slowly get worse. I'm just so sorry that that's where you are! :(

    My husband didn't believe I was really ill either. It was hell living with that to be honest. But my husband was abusive so it was just a game of ammunition for him. I'm sorry you had to go through those 4 years - but it's awesome that something so wonderful happened to change her mind. I'd hazard a guess that for you, her changing her mind probably meant as much if not more than the improvement in symptoms!!??

    Gosh it really says a lot that you improved so much after the treatment! I'm sorry you weren't able to continue with it. Maybe the future will bring more advances. :)

    Brent I seem to remember that you blog too, or maybe that I've met you on twitter ... but I can't keep track of who's who right now lol, sorry! I'm meeting so many people right now it's a little confusing!! Maybe you could send me a twitter message or something and let me know who ya are? I wish Blogger had a better comments system, sigh. xx

  6. That's okay. :-D @ArgyrosfeniX

    I actually stumbled on the healthcare career quite by accident. I had planned on becoming an engineer, but brain fog made calculus too difficult. Parents insisted that I continue to take classes so I ended up taking an EMT class (Emergency Medical Technician) aka ambulance driver. ;-) The rest progressed from there.

    My wife always treated me well and I didn't find out about her skepticism until I had been better for a few months.

    I could, potentially, do that regimen of antivirals again - but the stuff is like poison. There is so much research going on with XMRV and anti-retrovirals, that I want to wait and see if there is a better poison to take.

    As for adrenalin rush, I think that was when I felt closest to being normal. I always paid for it the next day, but it was almost always worth it. Saving lives gives a soul buoyancy...

    Best wishes!

  7. Ahh, thank you! :)

    Wow sounds like quite the journey!

    Your wife must have done a great job at supporting you despite her scepticism then. :) I'm glad to hear it!

    Yea, I would imagine the antivirals would be horrific to take, sigh. I'm with you on just waiting to see what happens with research. It doesn't seem worth the risk to me. I'm sick enough, lol.

    Yes, exactly! When I would have the adrenaline pumping my mind would clear and my body function more normally - it was like having the real me back again! Now the adrenaline rushes are almost as bad as when I don't have one, because my heart responds so badly. Sucks lol.

  8. You mention your heart responding badly... How so?

    I don't recall there being any particular heart arrhythmia with ME. Did I miss something?

  9. Hi Brent,

    Sorry it's taken me ages to get back to you.

    There's actually quite a lot of documented heart and blood pressure abnormalities in people with ME. I'm not great at researching stuff due to energy levels but I've been doing what I can to read up on postural orthostatic tachycardia syndrome (POTS) recently as I'm fairly convinced I have it, and I came across quite a lot of info on heart issues while I was at it.

    I think the place that has the most info on one place is the hummingbirds site - but her site is quite hard to read if you have any cognitive and energy issues, as there's an awful lot of info on every page.

    If you go to the ME symptoms page, here : and click ctrl F to use your browsers search capability, and search this : 'CARDIAC & CARDIOVASCULAR DYSFUNCTIONS' there's an overview of some of the cardiac issues in ME. If you feel up to more reading, search 'heart' or 'cardiac' on that page and there's quite a lot that comes up in the other sections too.

    On the testing for ME page, here : search for 'Circulating Blood Volume' - another big cardiac issue for people with ME. There's also more info on 'Orthostatic intolerance' if you search for it.

    I wish I could give you an easier page to read, but I haven't got the capability to search through my bookmarks to find more pages I've recently read... and I know that Hummingbirds does seem to have most of the issues listed, albeit in a difficult to read format. You can always google the individual issues you read about on hummingbirds, too. :)

    I hope this helps a bit!!

  10. Thanks for the great info! I think I'll write down what you've got for directions and give it to my cardiologist. It'd be better from the source too, I think. ;-)

  11. Hey Brent! You're so welcome!

    I got some more info from a friend this week. It's by a Dr Hyde, from the Nightingale Clinic, who is an ME specialist with a lot of experience and influence - one of the best in the field.

    He's written two books, both of which have info on the cardiac issues. The first, and cheapest, is called 'Missed Diagnoses', by Byron Hyde. The second and more comprehensive (and more expensive) is 'The Clinical and Scientific Basis of Myalgic Encephalomyelitis--Chronic Fatigue Syndrome', same author.

    If you can't buy a book though, he has written a pdf leaflet which you can download free which has some good info. I'm going to give a copy to my doctor. Find that here :

    Anyway, hope that helps too!!

  12. Hello Susannah! I found your blog through your Becoming Visible 4ME article and just wanted to let you know that you have my best wishes and support! ME is a brutal struggle and there isn't much I can do from this side of the pond except cheer you on and hopefully share a little of my hope to enable you to keep on. *hugs* I'm so glad that you have fur-friends and a wonderful flatmate to care for you- such things do help make life worth living.

  13. Karen Elmore Lindeman10 January 2012 at 10:43

    Hi Savannah! I am in Texas, USA. I deal with some of the same struggles as I have Fibromyalgia. I feel isolated and lonely most of the time. I have 4 wonderful Yorkies who keep me company and give me a reason to smile. I am married with a sweet husband. He never says it, but I know he is tired of having a sick wife. I would love to visit and write to you!