over a decade ago now. In fact some docs think that something was going on prior to that.. i will explain as to why in a min. Firstly I wanted to tell you whats 'wrong' with me .. mediaclly that is, so that before build my blogging etc youve got more of an understanding into my spoonie life.. which is what we call ourselves nowadays..(although dont you find if your not part of the spoonie gang so to speak not everyone knows what a spoonie is..even get some weird looks along the way.. my mum was like "why do you keep calling yourself a spoonie .. it sounds rude" shes quite old school & i had to explain the reasons why we are spoonies.. sorry i completly diverted then!
So my journey..into the spoonie world.
I actully as a child was well, not a sicky child. I had tonsils & adenoids out at 5yrs, like many children do. I had a cist removed from my breast at 14 as it wouldnt drain, another lump removed from my ankle at 15.. this never set alarm bells off in anyway, as i was well. Late teens/ early 20's the tummy cramps started, hen the upset tummies..if I ate it was a quick run to the loo., never a formed stool. So there i was with ibs ... mmm so they thought. Then ibs with lactouse intolerence.. so changed my diet.. nothing changed (thats because i wasnt lactose intolerant lol..good to hear as im such a massive milk fan..so phew)
By now I'd also been hit by a car, only ever so slightly. If you can be hit by a moving car only slightly, but I wasnt bad thats what I mean. Well not straight away. I even went away as I was booked to go off travelling for 6months with friends, only to be flown home 2 weeks later now with a really bad knee. You might wonder as to why I'm talking about this & what relevance it has but it will unravel. So home I flew to have a simple arthroscopy..only to end up in & out numerous surgieries ending in septicemia, plates in my leg & hip ops. Again not thinking alot back then.
skipping foward & 5 misscarriges , an eptopic (loosing a fallopeon tube) I already had had Hollie, my eldest by now. Still not thinking anything but maybe a bit of bad luck. I fell pregnant with Joe. I think that was my nutriuance zapped from me. I was so ill during my pregancy, not pregnant ill .. like really urghhh. Bed rested as bleeding & not to loose my baby, which i didnt at just over 9 weeks early he decided to make an apperance.. yeahhh! And remarkbly well.
So that was that. ... so I thought, little did i know it was far from it, it really was the start in a way I guess.
I didnt ever feel particualry well, i Guess. And am now a single perant, Joe still a baby & hollie a youngster (im terrible putting dates into place but about 13) just tiered,stressed.. that was my thoughts. I was working hard bringing up 2 kids alone.
I began getting those pains again.. its ok! phew just a big cist on my overy.. day surgery.. use my axa ppp..key whole whip it out & done right?? NO
From here Im going to cut short as so much to say, so much has gone on. Dates timings all have become a jumble this was 2004 / 2005 & now sitting here in 2019.
So my Mum sat by my side (as she always does, my mum diverting is the most incredible lady, my best friend and a mum in a million) anyway just waiting for my day op so we can go home right. She noticed blood through my bedding.. that was when it began..
surgeon called back up. had he perfirated something? they looked again. nope. Decided to keep me in for 'the night' from there & then I became increasingly ill, after weeks they called surgeons over from Watford Genral ( I was still in Bupa Bushey) & a doc from The Royal Free. Next thing know.. Im in a icu room with a lovely nurse btw. Feeling a bit strange. I then realised Id got my period, asking for pads & reaching down I was like whats that..it was a ilestomy bag (I now know this is more or less the same as a colostomy bag) what the actual F**** I only came in for a cist removal!!! Investigations showed my colone was dead due to a vasculitis attack.
It was fine, was what it was & i just got on with it. I was offerd councling etc, but truly hand on heart didnt need it. Thats not bigging myself up, this was a new me so I had to deal with it right. My home was in Spain at the time, so after recovery which took some time, we returnned home. I bought some amazing swimming costumes that hide the bag & lived a normal life, aqua park, beach & everything we did before. In fact I randomly painted the outside of our villa.
From then to now.. this is where dates, surgeries, & everything becomes muddled.. dates whens, wheres etc
All I do know is I am now I had the stoma reversed, 11 more laprotamies in, all my colone now gone, leaving just part of my small bowel. fisculars,Hysterectomy due to everyting being stuck to my bowel, peritonitis, perforated bowel. Months on end in hospital, endless times in ICU. Long Long hours on the operating tables surgoens fighting to save me, obstructions, over active heddissions.Veins colapsing, hickman lines, central lines, over 2 years taken off food, suplement drinks, tpns..you get the picture right..
Im back in Uk now have been for over 6 years. Theyve now put me under the fabulous St.Marks hospital for specalist bowel problems.. for severe of complicated patients.. Ive never been simple lol .. & Addenbrookes in Cambridge..a teaching college that has the most amazing ruemo & vasculiuts units.. neither hospital are near me but both are amazing!!
SO.. APPARENTLY going back to my knee, lossed babies etc they belive its all linked. Im Complex.. of course I am .. I couldnt be simple right?! lol
Theyre still looking into me, however for now maybe it could of been when I got salmonella badly when in ThaiLand, or a bad bite i got in Barbados.. as before both of these my immune was quite strong.. regardless as we cant change the why"s...
I now have.. you ready for the list lol.. i get muddled so cant really expect you to keep up... apoligies if your still with me we are nearly done now...
Lost colone to a form of Vasculitus. Mctd..Mutiple connective tissue dissorder. Lupus. Short bowel syndrome. Over active Hedissions. sacrolitis. ankylosing spondylitis. hypermobility in a number of joints. telangiectasia / which leads to wiered lots of skin bleeds.. not a dot but a big trckle... can be embarrising .. as people are like "your pouring of blood" im like "yeah no problem its ok" .. they think Im mad lol.. low blood pressure which gives me the joy of sometimes passing out.. touch wood this hasnt happened for a bit ..yeahhhh!!!
Ive proberly left out loads, & at the same time taken up way to much of your time. But you get the gist right?
Im a fairly new user of a walking stick, & was ashmefuly embaressed.. why?? No idea Id never judge anyone with an aid, so really know one is going to judge me either...I sleep in hand splints due to carpe tunel & raynards (forgot to mention that above)..rest myself on pillows due to my frozen shoulder..oops forgot that too. I SHOULD rattle when i walk with the amounts of meds im on.. I try to steer clear of my extra fun omes like my morphine etc.. but cant always.
And with all the above I still smile, Im still making the most of everything. I know its not the last of my god damn awful sugeries, on which I go down hill & become iller than when admitted.. ops dont sit well with me, so between me & my medical team of which we are now more friends anytime we can aviod it we will.. eachtime i get iller for a while & each time is a bit harder. Its scary, Its painful but I somehow even when all hope is lost bounce back. I belive positivty has a huge impact on that and it works... a prime case of that was my last surgery.. not too long ago in hinde sight I guess.. my head space wasnt right.. & with this for the first time i coudnt cope. I will write about this on another blogg as its a whole different subject. I lost m way for the first time.. and i mean lost i was in the darkest place ever & that was harder than anthing i ever faced.. it wasnt me & no matter how I tried or wanted to I simply couldnt.
Im not as I was, but I am better than I was at that time & Im hoping in writting these bloggs , selfishly it will remind me of the stregnth that I always had, and un selfishly my main objective &b goal is to share my story, share my coping ways.. they might not be right for you but even if you take one thing from it that would be awsome, I want to show you that you might be ill but you can still be happy.
There is o cure for these chronic illnesses so we need to share understanding, awareness & help, adice & stories between us.
Now you know me & my journey I can start blogging shorter but to the point bloggs, info, tips & ideas.
Im going to share herb facts which ive been studying thyre so powerful, i try to use them as much as I can. My fashion tips to as i love that.
I will also share my sons journey who has also been so ill over the last 5 years (hes 16) & was perfectly well until then.
I will add our life blogg with positivty & hopefully ub beat vibe.. reality of illness said hopefully not in a miserable way.. dont let illness rob you of your life you can stiil be happy & still look good.
Thankyou for reading
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