Tuesday, 24 May 2022

fighting another battle

At the end of April I started a really heavy period...or so I thought... But after 3 weeks of me loosing far more blood than ever before plus large, new life form clots, I called my GP who told me to go to A&E! I still have no idea how I walked in there and kept upright while I was checked in! When I was trialed my Bloop Pressure was so low I was told to sit in a wheelchair and not get out!

I was then moved into Majors and put on a bed - again being told not to walk anywhere or else!! To be honest the thought of moving was a very long way away from any of my thoughts; all I wanted was for the world to stop spinning.

My main occupation in A&E was blowing cannula...but they did have an ultrasound so happily dug some more into my arm! I was feeling so weak I didn't kick up any fuss! But I did get fed up being told how pale I was! 

After a gynaecology consultant braved a look at the mess I was I was told that a transfusion had been ordered for me...by 2am I was on a ward  having this blood pumped in slowly. At this time I wasn't aware that transfusions are only done over night in an emergency and that it had to be done slowly as my red cell levels were so low. I don't understand that as basically I was suffocating my organs as oxygen was not being carried round either... I was far more ill than I realised at all!

Once on the ward I had a Dr trying to fit another cannula...I was very good and didn't scream as it was silly o clock in the morning! But that meant whilst the blood went in through my right arm, a drug to try to stop the bleeding went in through the left... That did make sense as I was terrified the blood being put in would just come straight out. I was then left to try to sleep...but there was a load of snoring so that didn't really happen!

Friday, 29 April 2022

KCH

I now need to get over my fear of Kent and Canterbury Hospital. I had my pre surgery assessment today and the nurses can't see any reason why my procedure can't go ahead! I did ask if it could be done in WHH but I was firmly told that all Urology procedures are carried our in Canterbury, however I feel about going back there!

This afternoon I got weighed, measured, heart recorded, blood pressure checked  blood samples taken and other samples provided which are being sent to the lab. So I've already been warned antibiotics and anticoagulant injections will be sent out prior to the operation actually happening. I also have to have 2 LFT tests 3 days before and on the morning. I am hoping I will be in and out in one day...but knowing how I love sleeping after being knocked out I may have to stay overnight! I'd prefer not to as Mikey is terrified I'm going to die in there... I am doing my best to not look worried or scared in anyway near him.

Luckily as his friend is coming over for a BBQ on Sunday there is a distraction...and he is already getting excited about it. I just feel guilty that I'm putting both him and Andy through this...

Thursday, 21 April 2022

Spring has crash landed

In theory it is now spring.... Easter has happened, the eggs are in residence but not exactly being eaten!!

Having survived covid I have now moved on to gastroenteritis and have found I am capable of losing a stone a week when I have it! The downside to this is my blood INR is nonlinear stable and is now too low. This purs me at  risk of more clots being created and the fun I am having breathing today is not helping to calm my mind over this!

Mikey has now moved to a new form. On Tuesday (day 1) he came home in a fantastic mood - it was a really good day and he felt happy and relaxed. But then yesterday he came home in tears as someone there had the bright idea of sending him with his previous class to an art lesson rather than repeating a carousel subject he has already covered. This led to one of the morons starting their usual bullying test again.  Obviously I was not happy and promptly tried to get hold of the head or deputy to raise this as a major issue. I will admit I got angry with a pastoral member of staff who tried to calm me down badly, before getting holding the heads PA. Unsurprisingly I still have not spoken to the Head or Deputy (he appears good at avoiding people in the hope they will forget or go away) but have had a call from 1 member if staff at daft o clock this morning.

Basically I am now out of patience as they have had months to try to resolve this problem and are doing nothing to punish those low lives who get away with totally unacceptable behaviour on a constant basis. They really need to learn that their actions have consequences and they will have to deal with them. I have stopped threatening to rip heads off for now...but a day of crying and panic attacks has left me totally drained and liable to start yelling far louder and with many more less palatable results for the school. My job is to protect my child and ensure he is in a safe daily environment so he can receive the education he needs and deserves.

I also have learnt that I am on an elective surgery list. My pre surgery assessment is next week... I am slightly baffled as I was told that the calcified clot by my right Kidney was just going to be left there!! It now appears that it might be removed...I'm just looking forward to a decent sleep for once!  The only other surgery I would be expecting would be the creation of a fistula - but my eGFR is nowhere near low enough for that to be needed yet, so I am looking forward to finding out what they are planning to do!!

We did get some bad news last week...Andys step mother died suddenly. Totally unexpected and a decided shock, thankfully Mikey handled it really well but the mess at school was really not what he needed on top of that news...

Thursday, 17 March 2022

horrible mixed up week

This has not been a steady week for me...I am definitely not in warrior mode - it is more a survival attempt.

Tuesday was my usual trip to the ACC clinic ; parking was a challenge. The Nightingale unit had gone  but as I predicted, the car park is having to be resurfaced! So my car pretended to be a helicopter and I finally found a space near the pad. Once inside  as usual, my appointment couldn't be found so I gave up and went to get stabbed and then hunted for The ACC nurse! This week she was in cardiology...and this was my good bit of news!! It appears I have stabilised so I'm now not going back until the end of March!!!

Once I got home Mikey tried to call me but my phone refused to let me answer him. He then called Andy as I think he needed us. After P.E. 2 if his little gang of tormentors pinched his school trousers, threw them into a shower and turned it on. I reacted very calmly on the surface and called school immediately demanding to speak to the head or Deputy. Neither were available, but I spoke to the Heads PA who agreed that this was a very long way from being acceptable and passed me to the pastoral team. They went and made sure Mikey had a letter explaining why he was in his pe kit so he wouldn't get detention, and also assured me that the perps would be dealt with. I was called later and told they would be in isolation the following day and the school are working on moving all of them to different classes.

By the time Mikey got home he was decidedly subdued and it took several hours to cheer him up enough to hope to get him to sleep.

Thankfully Wednesday went OK for him and he seems more like his normal Mikey now! On the other hand I'm struggling as I am meant to be avoiding stress!! This morning I woke up feeling far more sick than I have for a considerable time, plus wobbly was a decided understatement! This meant that I decided I wasn't going to the woods as I did not want to decorate them with vomit, and I'm sure that trying to walk to the camp would not have been successful or a good idea!

On top of the feeling crap I have never felt this tired before. One thought scares me that it is not likely to improve as I continue.


Friday, 11 March 2022

Depression building

Today is extremely tough. I'm shattered from yesterday and my legs feel like jelly - and Rory seems to have reverted to not liking being touched or wanting to be near a human. I've made a start in dinner, but have now collapsed again 😢 Nose bleeds wise I'm now up to 3 for today...these blood thinners are really not making my life any easier and all the time these clots impact me I am still a very long way from going onto the transplant list. Right now knocking me out is just too dangerous and there is a strong chance my lungs could end up scarred making any future surgery far more risky for me. My life basically socks.

Mikey has had an interesting day...I'm his words his main bully is ( I quote) being quite normal for a twat! Now we just have to sort the other 3 or just get them threatened in the same way the Twat was! I just want my happy boy back as it really reduces the stress on me when he is 😇

My main goal this weekend is to finally get Vodafone to sort out my phone. It is still not possible for anyone to call me on it as it still defaults to the home number. Not that I get many calls, but my main pissed off effect is that if I'm not at home, only I can call - nobody can call me. So far as I'm concerned they have broken the contract so I should be able to walk away to a new supplier. Basic Tort law backs me up if they want to get stroppy... so long as I'm sat down I can argue for hours! And the mood I'm in, I will...or alternatively I'll just collapse and bring the shop to a standstill.

Thursday, 10 March 2022

Stressed

I am still trying to convince Andy about a dog. There is no way I can just go and get one, I can't work - to be honest at the moment I can't even walk in a straight line. But I need the companionship of a creature that will love me for me and not constantly tell me to shut up.

Right now I just feel unwanted, unneeded and useless. I live in a place where I'm not wanted or valued and I'm just sinking more and more as each day passes. I need to add some kind of value to my existence, simply surviving is not enough for me. I have to fight every day just to keep alive, I need some reward waiting for me, something else for me to live for. 

I know full well that Andy won't bother to read this, but if I don't get it out of my head it is likely to combust with everything fighting for space in it.

Tuesday, 8 March 2022

alone

I am so over feeling so isolated and alone. I really feel unwanted here along with totally useless. Mikey doesn't need me any more and all Andy does when we are alone is go to sleep or get totally stressed about things beyond his control. Me - all I know is my whole life is beyond my control and I hate it. 

The cats are even avoiding me today, Mikey is playing hockey after school so won't finish until 4. I have retreated to bed to have a cry without disturbing Andy's nap. Why on earth am I still fighting to keep going? I don't want to carry on right now, especially as all I have to look forward to is dialysis which is not well known for making you feel better.

I can't even do any of the hobbies I love at the moment as I just end up getting in somebodies way when I try... I'm not needed or wanted here. Mikey told me off last night for disturbing him too 😭

I'm also not driving much at the moment. We only have 1 car so Andy needs it for picking Mikey up so I can't just get in and drive...