Muddling along..

I can’t quite believe it’s only 2 weeks till Christmas, it doesn’t feel festive at all despite having the tree up now and the decorations, every year I hope for some Christmas magic feeling to come along but I beginning to think it’s just not the same being an adult! I think I need to get the Christmas songs on the go, that usually does the trick!

I guess it’s hard to be festive when your sick, most of my blogs about illness recently have been private because no one likes a moaner right ?

I’ve been back to see the consultant at the hospital so will now be referred to the GI people, the pain team and have the excitement of looking forwards to a colonoscopy perhaps there will be more sedating drugs which cause some fun havoc with my mind again!

They spoke about starting me on amitriptyline as a painkiller, I’ve been on it on the higher dose as an AD and walked around like a zombie for months, it also knocks you to sleep, so maybe it would be a good drug for me to try!

I treated myself to some lovely new yarn today, it “knits” a lovely lacy scarf but it is so fiddly and time consuming! i also bought a new set of bamboo needles seen as my other ones got snapped or lost, I really need to get a knitting box (other than the falling apart cardboard Amazon box that is currently being used)

I also picked up some oil pastels and drawing paper, I am by no means artistic but I do enjoy drawing and painting so had a little play with them tonight, it might have looked like a kids picture but it kept me amused for a good 30mins and made me happy! 

I never thought I would hear myself say this but I wish mother nature would return my monthly gift, it appears to have gone missing since I became ill, I do believe it is trying to make a return due to a couple of random PMS days, or am I just a bitch hmm who knows!

Just not good enough….

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Do you ever feel like your just not good enough for some people ? No matter how hard you try or do you’ll never mean the same to them as they mean to you ?

After years of bad friendship choices I shut myself off to the social world and it’s only been in recent years that I let more people in, I don’t like feeling hurt and therefore don’t put myself in position where that can happen, yet here I am again.

Maybe part of it is my mental health issues but I’m sure I’m not the only person in the world that needs to be told they are loved by those close to them, how are you meant to know if you are important to a friend if they don’t tell you ?

Maybe it’s time to pull the shutter down again, I can’t deal with these types of emotions while being this ill.

I’M DONE

cup of fuckSo today is yet another event that I am missing out on, it’s Movember in the atrium at uni, I wanted to go to the last one but was too ill just as I am too ill to go today, just like I am too ill to visit friends, go shopping or do anything that involves leaving the house. Tonight I was meant to be going to an engagement party, then there’s lots of Christmas events coming up all that I will most likely miss too. I’m angry and bitter about it all, it’s not fair, why me ??

I had a good old cry on the BFG last night and spoke to the BFF on fb chat, I’ve agreed to go back to the hospital after Adams birthday, I need to get sorted but i have little hope and faith left in our national health service, if your not a clear cut case illness then you just get lost in the system, everything is about money and beds, it’s not about the patient anymore.

I wrote a 3000 word complaint last night regarding my hospital stay, I’m planning to send it to several people in order to get something done, it’s just not acceptable. I can’t go on like this any longer, the pain, the exhaustion, the swelling etc I CAN’T TAKE ANYMORE!!

Dr’s for me in the morning I guess :(

high temp

 

I’ve been feeling hot all day but not actually been hot, guess my temp has broke out now, I was hoping to avoid antibiotics but the throbbing flank pain is getting worse even with my round the clock painkillers. With my current health state I don’t think it would be a good idea to hope it goes away on it’s own.

I was thinking earlier on about how angry I am about being ill and how one illness leads to another, like when your run down your more prone to infection or that your so ill you need to sleep all the time but by sleeping so much your missing out on fluids and end up with a kidney infection. It’s a horribly vicious circle and once your in it it becomes a maze with lots of dead ends.

As a nurse I always try to think how a patient feels and sympathise with their situation, but it’s only now as an “ill person” that I’m realising ill people feel just the same as everyone else, they do think something of taking 30 tablets a day even if they have been doing it for years, it doesn’t mean “their used to it” or when you hear that Mrs Jones now has a uti you might think “oh she gets them all the time” or “she’s always got something wrong with her” maybe they do but it might still take them by surprise, if like me they still don’t see themselves as a chronically ill person they might feel angry and wonder when it’s all going to stop.

How can patients have hope and positivity if they “give in” and assume these things will happen. If anything good has came out of this illness bout (can I still call it a bout when it’s been over a year ?!) then it will be the ability to not just sympathise with patients but empathise.

So to end this on a positive note, only 10 more mins till paracetamol time 😀

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Yesterday I fell apart, reached the limit, couldn’t take anymore…In such a way that I splattered like a puddle over the floor streaming off in many directions, some of me won’t come back, there will now be mental scars impregnated in my mind.

Illness has taken over my life in ways I could never imagine, the feelings of being trapped, dependant and useless can’t be understood by anyone unless they have been through it themselves.

There’s the pain, I’ve not been pain free for months, I’ve managed to get to the “I’m just uncomfortable now” stage but never pain free. I’ve been given all the painkillers I can, if it gets unbearable then morphine and hospital are the only options left.

Then there’s the not being able to eat which leads to a severe lack of energy, think about the most tired time you’ve ever been, then add on the flu and a sleepless night and you might be getting close, your body physically aches all the time, just going to the toilet it a huge effort, you’re constantly fighting against your eyes which want to close, never mind the social act of food or the fact that you still get hungry at times but can’t have anything other than liquid.

How would you feel if you had been told that the majority of people in your situation end up on a feeding tube, not working and needing carers.

My life as I knew it has been torn away from me and there’s no hope in sight of it getting better, I can’t go to uni, I can’t drive most of the time, I can’t look after the kids, most of my life is about resting in the hope that tomorrow will be a better day but it never is.

If you’re familiar with the spoon theory then you can relate to my energy levels just now, I’m borrowing spoons left right and centre which is resulting is some sire situations.

Yesterday I went into uni because I had my counselling appointment which even with no energy I really need just now. It was a long day for me and by the end I was physically struggling, I was dizzy and faint, my heart was racing and I had to sit down, I was sweating and disorientated and needed to get home. A misunderstanding with the BFG made me think I had to drive home that terrified me so much that I burst into tears in the middle of the atrium, I couldn’t help it, weeks of anger and pain that had built up came out.

It turned out that he did come back and stayed which was what I needed because the kids were here and I just CANNOT cope with them when I am this ill but I still have my pride, I don’t want to have to point out to people when I need help, I already feel bad enough that I NEED people to be helping me out on a practical level.

The husband has always been a practical person where as I am an emotional person but I am so grateful for his help just now, he is taking the kids every night he’s not working and coming round each day to tidy up for me and wash dishes etc., to him it’s not much but it means a lot to me, any day I’ve done the dishes it’s taken hours as I have to keep stopping and resting, a bit like this post which has taken me hours to write!

I’ve not even had the energy to phone the BFF this week which saddens me a lot,  I hate myself a lot just now and the physical ailments are dragging my mental health down bit by bit. I used to be the strong one, I used to be the fixer not the broken one lying on the floor……

There is no end