I'd like to write a little about my life. My health, to be precise. I've
finally come to terms with the fact I have incurable chronic illnesses, some of which are degenerative... and I'm ok with that now. I'm still really angry... but ok.
Aged 5, I suffered a severe attack of Henoch Schonlein Purpura which left me with a damaged kidney and rubbish immune system. My immune system attacked my internal organs, something I later discovered it would continue to do silently for the years to come. After I recovered, life became normal - I was your average surly, music-obsessed teenager. Sure, my hips would lock out of place and have to be clicked back, I twisted my ankles every 10 seconds, I regularly chipped, bruised and fractured small bones, my skin was so sensitive to the point where I was once bedridden and on 2 types of medication for 10 days due to
blisters... yeah... BLISTERS (The heeled jelly shoes were so worth it, I love
I suffered bad growing pains, ribs that would feel like they were stabbing
me, legs feeling ready to fall off, throat infections that would never leave me, horrendously heavy monthly cycles... but that was me and it seemed normal. My mum was pretty much the same, as was my nan. We were clumsy, broken, forgetful, tired, we had 'women's problems', we just made do.
I did ok at school, we moved to the South coast. I got a job but had to quit
training to be a nursery worker as I was just too sick. I caught everything off of the children and just couldn't shake it. Crap immune system as usual. I stopped going to the dentist as the injections didn't numb me and they didn't believe me. Just me panicking. I had a stick I borrowed from a friend as sometimes my leg and knee would cramp and make it unbearable to walk on for a day or two. Swellings would appear behind my knees, in my arms. Just me overdoing it. The palpitations I'd always shrugged off as being a top class panicker like my mum, like my nan, got worse. A GP said I needed to wear less black and get out more, thanks for that. If i got up too quickly, I'd have to sit down or face fainting. Just me overdoing it. Just a small panic attack. Just tired (but why can't I sleep? Ever?) I was exhausted.
The birth of my first son distracted me. I was all about him. I had this
stuff going on in the background but I never thought of it or of myself, as my life was his. I became a single parent, he was suffering with an eye problem which has left him with limited vision in his left eye, I did as much as I could, I settled him in to pre-school followed by a lovely primary school and watched him flourish. I met a fantastic man who became my dear husband - who laughed at my cack-handedness and ability to catch every illness under the sun yet supported me through it all. I was still exhausted.
When I fell pregnant with my second son, everything went downhill. It was a hard pregnancy, I lost almost two stone in weight and suffered terribly with Gestational Diabetes. Both my labours we're extremely quick with a lot of post-birth bleeding. I recovered well though, and was informed as the nurse was seeing to my first degree tear that I was immune to the local anaesthetic used for numbing (take that, stupid dentist!). It wasn't until about 18 months after that I realised just how awful I was feeling, I just couldn't shake it. A terrible lump had developed in my throat making it unbearable to swallow and sometimes breathe/talk. My hair was still falling out in clumps, my body ached all over. All the time. I couldn't sleep, I was over exhausted, my heart was
permanently racing, I would be sweating yet hands and feet purple and freezing. I finally went to my GP.
Zoom forward in time, after piecing together the Impossipuzzle of my life
over the last 33 years through countless back histories, research, tests,
crying, more tests, more crying, PAIN, a team of specialists finally think they have me sussed out. And you know what? The answers were there all along.
Ehlers Danlos Syndrome (type 3, investigating type 1): I have more than
likely had since birth, is genetic and probably passed through my maternal line. My mum's chronic fatigue, joint, heart and mobility problems? Probably this instead. My Nan's chronic fatigue syndrome, spinal fusion, heart probs? Yeah probably this too. Ditzy? Clumsy? Bendy? In agony with it all? It all ties in to the one thing this condition is about... collagen. The reason I ache all over, have uncontrollable twitches, weird rashes, horrible pains and stupidly bendy joints. The reason why I have flamingo knees and hips that pop back into place, the reason my body sounds and feels like bubble wrap, why I fall over and drop stuff and rip my skin open by unscrewing a blinkin' Pepsi lid... This is incurable, degenerative and can badly affect mobility. Although you can slow down the onset with correct physio and support in youngsters, I've had 33 years of low level damage - coupled with the illnesses below, my body is starting to throw its hands up and surrender to it. I however, won't. If you'd like to read up about this, take a look here.
POTS: The reason why I can't walk too far for too long without feeling like
I'm never going to recover the next day, why I can't stand up too quickly or hold my hands above my head for a longer period of time (oh, the up-do on my hair, how I miss you!) The reason I need to have my legs and feet pummeled into life as I watch them turn shades no skin should ever turn, why I feel like I'm having a heart attack whenever an unexpected telephone call or doorbell ring occurs... we are still yet to work out of this has always been with me and has been agitated by the shock of my second childbirth, as it can be brought on by trauma and is related to Ehlers Danlos Syndrome too. If you'd like to know more, take a look here.
Hashimotos Disease: The simplest of my chronic illnesses. And we come back full circle to my Immune system. My body thinks my Thyroid gland is a threat (just like it did all those years ago with the Henoch Schonlein and my internal organs). It's obviously not, the Thyroid gland is one of the most important parts of your body, it regulates so much and the hormone it produces is vital to living. So when my immune system attacks mine, it swells and works extra hard to fight back and produce more Thyroid hormone... which makes my system attack it more... you get the picture. This is balanced now with medication to take
control of my Thyroid and make up for the lack of hormone it is producing synthetically. This doesn't stop my body attacking it but it slows it down. The swelling has stopped and although I'm left with a small goitre and scar tissue from the attacks, it hopefully won't get to the horrendous stage it was before medication. I will be on medication for life with this badboy which is controlled with 6 week blood tests to up or lower my meds depending on whether my immune system is feeling fighty or loved up with my thyroid. If you'd like to read up a little, take a look here.
So, over the last few months especially I have had to fight for diagnosis as
these are some pretty specialist subjects - none of which I would have known about if it hadn't of been for my brilliant endocrinologist at Princess Royal. My GP (who knew nothing of any of these condition but DID tell me off for not coming to see her years ago) has been brilliant and willing to refer me to everyone and anyone who would help, whilst learning along with me. Each step further to a diagnosis filled me with joy that I wasn't a freak or making stuff up, these results were legit and correct... but they also filled me with the weirdest feelings of anger and dread.
Why me? Why our family? We had some young sudden deaths on my maternal side, were these related? They wrote them down and gave me the 'look'. It's genetic... my kids... Incurable. Chronic. Pain management. Wheelchair. I don't want to be looked after. I don't want to not be who my husband married. It's hard not to go to a dark place and think of the worst. A pain you just have to live with. No one can fix it, this is your life from now and it will probably get a bit more painful and a bit more rubbish, sorry and all that. I did cry. And I did wish it wasn't me, again and again, mainly at night when I was up with a racing heart which won't stop palping because my toddler had *coughed* unexpectedly. But, I'm ok with that now. I'm still really angry... but ok.
I wrote this to break the on-going taboo of 'invisible illnesses' and to raise
awareness. I'm often told I look well and normal, I don't look disabled or in pain. Just like mental illness, often we don't get to see what is truly breaking people on the inside.
Thank you for reading, you lovely lot Xx
Who is Julie?
30 something, mother of two gorgeous boys, lover of one gorgeous husband, perpetually living in a dream world full of wine, chocolate and artsy crafty things.