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 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;-)


Sleep is something some people take for granted. I think even as a kid I struggled to sleep. I'd get anxious when I had school in the morning. I'd watch the hours go past on my alarm clock, getting more and more panicky as the hours went by. All I would think of was how tired I was going to be when it was time to wake up, I guess that anxiety made falling asleep even more difficult! 

My insomnia got a lot worse as I became ill though. I very rarely sleep now before 4-5am, sometimes even later. It infuriates me! Then I have kids to get up for school. I try not to sleep once they go to school, but I actually feel like topping myself when the alarm goes off! I try not to sleep, mistakenly thinking it means I'll be so tired by that evening that I'll sleep. Nope...All that happens is by 4pm I'm falling asleep, then by 11pm I'm wide awake again. Arrgghh! People who don't suffer with insomnia have no idea how debilitating it is. I've been given medications that in theory should help me sleep but again..nope! I've had high doses of Amitryptiline (for pain) which in theory should knock a horse to sleep, in hospital they've gave me Temazepam, nothing works. Originally when I got sick, the anti emetics I took for sickness would wipe me out, but usually at the wrong times. My body is so used to them now it doesn't happen.  

I envy people who can fall asleep easily. My husband is one of those..without a word of a lie, he was sitting in the bathroom while I showered tonight, I was busy chattering away to him, when he went quiet, and yep..he'd fell asleep!! In a bathroom! What the hell? He's the type who lies in bed, and is asleep within 2 minutes and snoring within 3! So I spend my whole night lying digging him in his snorey pants ribs! This is how he inherited the nickname from me - Noddydog! It does my head in. I often wonder how much of my general feeling unwell is down to lack of proper sleep. I'm pretty used to not having great sleep, it's been broken for the past 8 years due to my sons health condition. I was able to sometimes fall asleep inbetween his bad spells, not now though. Which tends to make them harder to deal with when I have finally fell asleep.

It's 1.43am relatively early for me. How I'd love to just switch the laptop off and go to sleep. The reality is, I'll just sit staring at the dark ceiling, listening to the chorus of snores surrounding me!


Wednesday, 30 November 2011

My first ever comment!

I was so happy to get a comment! Oh and to see I had 2 followers. To be honest..I felt in a really dark place last week, everything seemed not to be going well, and I guess writing it about it did actually help. I had no intention of starting a blog, it just seemed to happen. I needed someone to talk to and given the fact it was the middle of the night, as I never sleep, writing it down seemed the best thing to do. I feel in a better place this week and feel able to look ahead to the future. 

Thanks again to Anonyms for my first ever comment and reading. It means a lot. :o) 

Jax x

Thursday, 24 November 2011

My first real post...LOSS!

Okay so here goes nothing....

You know sometimes when you think you're having a crap week? My family and I had been playing pass the teamed with my other health issues, it really dragged me down. Anyway, after being knee high in vomit and other lovely things for 2 weeks, I really was feeling a tad sorry for myself. 

I dragged my sorry carcass out my sick bed to go down to the fridge to get even more tablets. As always I popped my head around the livingroom door to see Sweepy, my beautiful furry baby boy - he's a bunny by the way. It was all a bit weird as he always says hello back in his own bunny kinda way, but this time he was hiding under his log bridge type thingy. Hmm, so on closer inspection I noticed he hadn't ate his nuggets. Now this was unheard of as he was a greedy tyke. So I thought he was maybe huffing since I'd been awol in bed for a week. I must add here he had been getting fed, cleaned etc by my better half. All the same neglected by his Mama. So I immediately forgot about sick bowls and such like and got the wee dude out his cage. As always he ran under the dining room table. I did crawl under to talk to him, trying to cajole him out his mood (normally he can never resist my charms for too long!) This time he seemed different though. After about ten minutes he sort of came over to where I was, well close enough that I could hear his breathing was a bit laboured. 

Panic? Me? Too right I did.. Straight on the phone to the vet. By now it was around 5.30pm and the vet closes at 6pm, so last appointment is 5.50pm. They agreed to see me, but first tried to convince me he was maybe just having an off day, but I wasn't having any of way Jose! So I got one of my sons to sit with him and try and get him in his pet carrier box, while I quickly dragged on some joggies and a hat (yeah..I looked splendid) Oh and I did brush my teeth! When I came down, I honestly expected a fight to get him in his box, he hates it with a passion, but no fight. He just hopped in, good as gold! So we set off, in the dark, infact I had to walk/jog/run a bit as time was ticking. I chatted to him the whole way, saying the vet would make him all better. At the vet, they thoroughly checked him over. He seemed fine but they noted his temperature was up slightly. So as a precaution he had 3 injections.  (Oh I forgot to mention he HATES being handled with a passion. In the 2 years since I've had him, I've held him about 3 times, and each time looked like I'd lost a fight with a rather nasty cat!) One antibiotic, one for his wee tummy (incase it was upset) and the other was pain medicine I think. The vet said he was sure he'd be fine, if he still wasn't eating by the next day, then I should bring him back.

To me vets are God. He said he'd be fine, so he'd be fine. I relaxed a little and opened his box. He's wet his wee pants (of course he doesn't really wear pants?!) in the vet, the vet said it was just stress. So his wee pants, well paws, were a wee bit wet. Poor boy. I sat and stroked and chatted to him, meanwhile instructing hubbykins to clean all his cage out to get it nice and comfy incase he wanted to go in for a wee sleep later. I had no intention of putting him in, afterall he's my baby, and sick, so therefore we'd sit up all night watching telly or whatever! He loved to sleep outside his cage. Next thing all hell literally broke loose. He hopped out his box, then over to the window. He usually looked out the window as my 2 dogs are often out there and I think he liked to watch them. Within seconds he started fitting, now I have a son who has seizures, so I'm well used to dealing with them, but this was frantic, he was trying to get up and falling over. I screamed at my husband to call the vet. By this time it had switched over to the emergency vet, so there was the faff of having to write down the number of the emergency vet (why they don't just transfer the call to another line after 6 I don't know!!) but all in that short minute or however long, it may only have been seconds, he was gone. At that point my husband screamed back at me to get out, he was in a state too. I climbed the stairs and had one of the worst asthma attacks of my life. What the hell just happened? In my heart I knew when he'd screamed at me to get out it was over, but I was doing the old - head, bury, sand thing and thinking maybe he'd be okay? Deep down I knew he wasn't though.

I've dealt with death before. I lost my Dad (I was a total Daddy's girl as you'll learn over time) at the age of 28. I also struggled with the loss of 3 of my dogs over my lifetime. 2 had to be put to sleep (1 who was about 16 and in ill health, then the other who was riddled with cancer at the age of 8) then there was my other wee baby dog (my first dog of my own) who was killed by a car. I liken the loss of Sweep to losing her. The total shock of it, the fact they suffered. When they're old, or poorly, you kinda half expect it. Not that it makes it easy, far from it. I can't get my head around the fact I was only 5 minutes back from the vet and now he'd passed. I thought he was going to be okay! As it happened, the emergency vet, was the same vet who had seen Sweep prior. He seemed upset and said he'd thought it may be VHD, but hadn't liked to say. I felt angry that he hadn't kept him there then and if he'd got worse, he could've prevented the suffering he had at the end. That's the bit I can't stop re-living. He was only 2, had never been ill and now he's gone. Maybe in time I'll feel thankful that Sweep was with us when he passed. Without sounding big-headed I was his fav person ever, so maybe it was meant to be that a minute before he passed, he was getting stroked and talked rubbish to by me? Infact, already as I type, I'm sure it was better he was with me, than strangers in a cold vet.

I know to some he was only an animal, he was my baby boy though. There's a lot more to that feeling..I can't have anymore 'real' kids, so these furry kids mean the world to me. Since it happened on Tuesday 23rd November, I haven't been back in my livingroom. I can't face to see where it all happened. I can't stand to see the big empty space where his cage was. My seat was right beside him, while I watched television, if he was in the cage, then my hand was in there with him. I am thankful for the wonderful 2 years I had with him, to me he was the most beautiful bunny there ever was (biased, me?) I'll miss everything about him, his beautiful face, his beautiful soft fur, his wee strops, him sharing our Sunday dinners - he had his wee plate of veggies every Sunday, his love of balloons and my livingroom won't ever be the same now. It doesn't feel like home right now. 

Now I'll always be afraid to think I'm having a bad week, incase it gets horribly worse like it did. The only thing I keep reminding myself is that somewhere else, someone will have suffered a much greater human loss, maybe those poor soldiers in Afghan, or some poor, poor parent losing a child (my worst ever fear) I have to just be thankful for the love he brought into my home. 

Sleep tight in Rainbow Bridge Sweepy Boy. I'll be up to get you soon. Love, Mama ox's

Test Post!

Okay, here goes...oooft, I don't even know what to write now. Will I even manage to keep a blog? Most people's blogs I read are interesting. I doubt I'm really interesting at all..good start huh? Bahahaha

Sheesh is this enough for my first post do ya reckon?