Thursday 1 December 2011

Dancing In The Rain..

I've touched upon illness a few times so far, but I'll try and do as brief a run down of what's going on..As a child I suffered with asthma, quite bad at times. A lot of attacks, steroids, nebulisers, I still have that to this day. I also suffered with pretty bad atopic excema, to the extent I'd be bandaged from head to toe (well neck to toe as obv. my head couldn't be bandaged) ..that'd just be plain silly;-) I had my first taste of hospital as a youngster (about 4 years old I think) with meningitis. I stood out from the other kids in the ward as I was the only one wailing for their Daddy instead of their Mummy! I'm sure that went down great with my Mum..Ooops! 

After that, I had a few routine ops, tonsils and such like. Things started to take a downward turn at the grand old age of 25..I'd had 2 kids by that point. The first early..pregnant at 16, then the 2nd once I was married at the age of 21. So we decided it was time to try again. Having been blessed with 2 easy pregnancies and healthy children, I wasn't anticipating any problems. Despite feeling pregnant, and odd, pregnancy tests were coming back negative. After a whole lot of to-ing and fro-ing to hospital, it was finally discovered I had a ruptured ectopic pregnancy. It's not too common in people of that age, which is why all the signs were ignored till it was almost too late. I eventually recovered and although advised I'd need IVF, I did fall pregnant again and again and kept losing the babies. I had lots of gynaecological problems after and finally at 27, fell pregnant with my 3rd son. It was a very fraught pregnancy and I spent lots of it in hospital, even needing abdominal surgery in the middle. He was diagnosed with a cyst on his brain at 20 weeks gestation, and was born at 42 weeks with a lot of complications..but that's for another time! Then my husband was told it was in our best interests for him to have a vasectomy, as my health wouldn't stand up to anymore pregnancies. That was gutting. 

So in amongst all the gynae rubbish, I then developed a pain under my right ribcage..similar to a stitch, so nothing too bad. It wouldn't go away though, so I went to the GP and next thing I was in hospital, on drips, morphine as I had cholecystitis and needed my gallbladder out, as it apparently like a bag of gravel?!? So I had that out, as always nothing went the way it should and I continued to have complications, still do to this day. My liver counts never really settled down, and the pain never. After the cholecystectomy, I suddenly couldn't eat lots of things and my diet became really restricted. I was always a healthy eater anyway, but it became ridiculous. I've still complained about this pain for years, to which I felt like it was falling on deaf ears. I just kept getting hit with more painkillers. I had endoscopy done which showed rather nasty gastritis. So I haven't really felt well for a long time. 

At the age of 33 (2 years ago) I needed a full hysterectomy - for reasons I can't really go into, purely because a lot of my family don't even know why, and imagine if they stumbled across this when I was gone..or here! I just didn't want to worry people anymore. 

Anyway, from then I started to get weird stuff happening. I started getting a lot of numbness, mainly down one side. Cramp that lasts days. I woke up one day and couldn't pee! 3 days later, it was ridiculous, so I went to the Dr, where the nurse tried to catheterise me, and never managed. Due to the numbness around the saddle area, and down one leg, they sent me to another hospital for an urgent MRI on my spine, they suspected Cauda Equina. I was admitted to a Neuro ward, but (controversially) as soon as the spinal MRI was fine I was let go. I still hadn't peed! Negligence much?? Things eventually settled, but not the peeing, so after extensive tests I now have to catheterise my bladder. It happened in the year after hysterectomy, which was a very large op, around 7 hours and involved taking cervix, remaining tube, lymph nodes etc..so it was very possible that it was nerve damage. I also developed pretty serious bowel probs - which have now been diagnosed as slow transit constipation. I don't go for 3-4 weeks at a time. I take a ridiculous amount of laxatives, suppositories etc and nothing works. 

So now I still numbness a lot and have recently developed a stabbing pain in one eye. Incidentally the same side as my gammy leg? Not sure if that's relevant. I lose my sight in it, then gradually it comes back but really fuzzy. I've yet to mention that to any of my Drs. I have the worst pain in the bottom of my back, if I bend over, my legs literally shake like mad, then give way. I have weak wrists now, I developed vertigo, I have a leg tremor at times, or it spasms like mad (and my arms) I also have a numb patch in my back, pretty much all the time. I lose words, which can be very embarrassing, to the extent I just stay quiet a lot now - BETTER TO REMAIN QUIET AND BE THOUGHT A FOOL, THAN TO SPEAK OUT AND REMOVE ALL DOUBT:P - I'm so tired all the time, but from my previous post, you can see I don't sleep well. On the occasion where I do sleep though, I can sleep for 17 hours straight and still wake up shattered. I never feel awake, ever. 

This year I became really ill, to cut a long story short, I ended up in hospital very ill with sepsis. They done allsorts of MRI, MRCP etc and found sludge in my bile duct, so that was listed as the cause or the STC. My liver tests were deranged too. While in they done an endoscopy as I was constantly throwing up blood. They found the gastritis was really bad, I had duodenitis, my bile was all flowing the wrong way, which explained why I vomit every single day..well that was until I had a gastric emptying study a couple of months later which showed severe Gastroparesis. Arrgghh! At least it explained why I couldn't eat more than a few mouthfuls of food, without feeling full, then vomiting back undigested food hours later. So now I rarely eat either. 

My GP has been piecing it all together, he thinks it's all linked to a central nervous system disorder. Then he asked the million dollar question...did anyone in my family have MS? Yes! My brother has it! He has it as bad as it gets:(( PPMS. My GP picked up the phone there and then and phoned a neurologist, he done a quick rundown of all the stuff going on and the neuro confirmed it did indeed sound like MS. Not the gastroparesis. I've yet to have the Brain MRI or spinal tap to confirm. So for now it's 'possible MS' or 'probable MS' but I'd rather know for sure. There is definitely something going on, and just like the gastroparesis (I was being accused of making myself sick and anorexia was mentioned lots of times, even by family) I'm glad to finally know what it is, so I'd like to know what's causing the other weird things. So for a while now, I've found myself stuck in limbo, waiting on tests I really need, while months elapse. 

To quote Vivien Greene though..."Life is not about waiting for the storm to pass, it's about learning to dance in the rain!" Just as well I'm a good dancer;-)

3 comments:

  1. jax...I really don't know how to respond to this post. I am in shock with the ongoing and never ending stuff you have been through. I am sorry for your babies, that really tugged at my heart.
    I have a long string of swear words in my head because I just cannot articulate my pain for you.
    I mean ****. It's kind of rude to say but your story makes me feel like I've been living in Disneyland this whole time.
    While MS would bring you some answers, I hope you don't have it.
    Take care.

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  2. Thank you Anonyms, for your kind words and for reading. I think yours was the blog that inspired me to write the most.

    It's amazing how involved you can feel, and how you can feel someone's pain just from reading about their life. I can feel your pain.

    I hope it all gets better. xx

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