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.

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.

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.

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...

up beat!

Today has gone well!! Nice after the last couple of weeks 😁 To be honest I feel I need to celebrate as I really was not expecting this!!

I saw my Nephrologist this morning and I've managed to push my Kidney function up to 24!! 2 weeks ago I was at 22 and with the stress with Mukey and school I was really expecting it to have dropped...but as usual I have done the opposite to whatever I expected!

Dr Klebe also has a theory that I may have had PE much longer than everyone thinks, this would explain the extreme breathlessness I've had for quite a time, but as usual I just moaned at home and didn't get checked as I couldn't face trying to get through to a GP! At least the Sinthrome should help, but it is going to take longer than the original 3 months quoted as I've already done 4 and haven't improved! So long as they don't reintroduce the injections I'm happy!!

I also remembered to ask about migraine treatment in case that is what Tuesdays scan shows up. Amytriptiline is fine from a kidney point of view so I can tell the GP if that is the result. I would just love to lose the constant pain..

I also asked him to recommend getting a dog...it took a while to convince him I don't want a bag dog so he suggested a spaniel. Unfortunately Andy did not look convinced 😡

The other plus was my BP is behaving perfectly and my iron is acceptable on Epo, but I can cope with that well at the moment! Compared to the anticoagulant injections those needles are fine 🙂 

So I now have 4 months off until the next lit of blood tests...and as my A&E bruises are still in evidence I am avoiding there unless I'm dieing!! And I have no plans to do that at any point in the foreseeable future. 🤣🤣🤣

New month, but little has changed

The main issue at the current time is the Russian invasion of Ukraine. This is putting me on edge as the only impression I have of Putin is that he is totally insane and there is nobody in Russia brave enough to say it out loud.

Earlier this week, while I was making dinner, a helicopter flew over and I went into panic mode. I think the issue was it was low and the last time we were flown over at that height it was an attack helicopter.

I'm also on edge as Mikey is still having to cope with a group of 4 imbecilic bullies. I have basically thrown all my toys out of my pram and told the school I am not sitting back and accepting this and something MUST be done. If not I'm bringing the big guns in as this is MY child and I am not having him in a dangerous situation as the cowards are now starting to get physical. The latest is they are looking at the current classes to move some people. Mikey has been reassured that he will not be moved without Tyler going with him. I think both boys would welcome this to just get a break and some peace.

Personally I am struggling

 My headaches are not clearing and I seem unable to stay in the INR range that is best for me... My anticoagulant has been increased, but the last time that was done I shot up far too high into the danger zone. So looks like I need new blood as well as a kidney!! Next Tuesday I need to be brave as I'm having a head MRI. Haven't had one for a long time and I really don't like them... Not good when I'm under orders not to get stressed!!

Also this week Andy seems to have invented a new Sonic weapon. As a result I spent Monday night downstairs with no sleep before driving to the hospital...not really sure how I got there, but the cad is the right shape so I assume nothing happened!! I am considering offering him to Ukraine to scare off Putins conscripts...