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! Susannah

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

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! :)

Welcome to my life!

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