Sunday, 25 March 2012

Spoon theory

I have just read this theory called the spoon theory and I think it is an excellent way of people knowing what it is like to live with a long time condition. Google spoon theory to read it in full but I am going to explain it in context to my life. If you imagine that someone healthy has as many spoons as they like where as someone with an illness or disability has a limited amount a day, let's say I have 12 spoons today and this is how my day looks Wake up and need to jump out of bed quick as I'm late as usual. That's one spoon used Having a shower and washing hair, that's two spoons used Finding clothes And getting dressed is Another spoon gone. Making breakfast which I need but makes me feel sick and taking a bucket full of drugs is Another spoon gone Lugging my stuff in car, driving to work and getting out the other end is another spoon gone It's only 9 o'clock and I only have 6 spoons left! Can you imagine having to think about how you use up your spoons for the day and knowing you have to Get to the end of the day yet. Working uses up 3 spoons and that is only if I do what I need to and not the hundred other things people ask you to. Now it's home time and I drag myself to car and home, this uses another spoon so I'm left with 2 spoons, dinner has to be easy as I'm to tired to cook much and then all I can do is pjs, drugs and bed as all my spoons are Gone. Some days I have more spoons than others, and others I have less especially if I have infections or more pain. People ask what it is like to be me so imagine if you had to make choices about how to use your spoons and everything is so limited! Daily tasks that people take for granted have to be organised in advance. So next time you ask why isn't that done, or comment when I have no lunch or the hoovering is not done or car not cleaned,the list goes on, maybe I ran out of spoons, maybe offering one of yours would help or just be a little bit more understanding!! I'm not sure I have explained it well but if you google it you will soon understand Xxxxx

Saturday, 24 March 2012

Today I am updating this from my bed, I think I'm lucky it's not a hospital bed as this week has not been so good. The beginning of the week I had a bit of a cold but that was ok, by the end of the week I was feeling really lousy with headaches, chest pain and generally no energy, I also had a call from my consultant mid week as my bloods were a bit of a mess and he wants them redone plus some more. Anyway popped into gp yesterday for blood forms etc and he asked if I was ok, I think he could see I wasn't, he checked my obs and my says we're low, temp high and things just not right. He said he was worried that things were deteriorating and that the tiredness and headache could be high co2. He wanted to admit me but after lots of discussion he has increased steroids and arranged for me to see him on Tuesday r sooner if necessary, in the mean time I have strict instructions to do nothing which is fine itch me as I am to tired to do much and getting out of breath if I move to far. I just hope this is a blip and thins improve quickly. Unfortunately I can't do everything people want at the moment and I feel like I am letting them down but I people will just have to bear with me. Oh well that's that as for the rest of my life everything is plodding along, I am worried about someone but I'm not sure why, she just isn't herself and I'm not sure why. There is nothing more I can say about it and hope she is ok. Well I'm of for my day of doing not a lot. Xxxx

Sunday, 18 March 2012

It's that time of year again where I wished I could leap from march and through April. Today is mothers day and I hate it, I hate the facts that my friends get to spend the day with there mum and I dont, I knows it is selfish to think like this but it hurts, next week it would have been mums birthday and then a couple of weeks time the anniversary of her death! I miss her so much every day but lately I have needed her so much more.we have planted a beautiful rose bush this year for her so lets hope it grows. This week has been better than the past few,we have managed to get some nvq work done and I can finally see the end of the tunnel. As I said before I have quit my ou course as I was so behind and was getting so steamed by it all This week I sorted things out with Peter, t was going on a long time and we were both suffering from it, he knows how I feel and admitted he was wrong, at least we are talking now as I love him very much an need his support sometimes. I'm not going to say anymore on the matter as far as I am concerned that is over and we ave moved on. I don't ave much more to add, the sun is shining and I always feel better when that happens, my joints are still driving me crazy but I am learning to put up with it. I also have a stinking cold so I am trying hard to get rid of that before work tomorrow. Xxxxx

Sunday, 11 March 2012

Decision made

I have finally given up my ou course, I wasn't enjoying it, had no enthusiasm for it and was so behind, so I decided I should just give it up which I have. It feels like a weight has been lifted of me so I know I have done the right thing. I have had a lovely couple of days of work and it seems today I am paying for it. I decided to go to the beach yesterday with a friends little girl, we had lts of fun playing on the sand and eating ice cream, today I am in agony though so I guess this is my body's way of saying no!! Oh well today I have a few things planned but nothing to strenuous so Im hoping by tomorrow I will feel ok enough to go back to work. Oh well nothing more to say do I guess I should get my butt out of bed.

Friday, 9 March 2012

Today I am having a day of after lots of getting moaned at yesterday, I had my hospital review with theresa at the surgery and she told me how poorly i was when I saw her last week. I knew I was poorly but didn't realise how bad. I told her how I didn't remember much about the day and all I could remember is feeling very confused, she said that it was probably because my blood gases were bad and at least my brain told me to make a doctors appointment, shame it didn't tell me to go to a and e. she also told me i am a co2 retainer and that this is important anyway i still have a temperature, my peak flow is low and sats are low, it seems I still have the infection and my lungs are not happy so she told me I either rest or go back in! I also have to find my medi alert and get it updated, not sure where it is though! I chose to take the day of although I feel very guilty as I couldn't get cover. I did have the best night sleep ever Though, went to bed at 7pm and woke up at 8am which was lovely. Several things have happened over the past week and as this is like my diary I am going to write about them, this is my space as I have said before, if people don't like what they read then they can choose to ignore it. Yesterday I was with Kate at work and we were clearing some wardrobes out, I jokingly said oh my god mate st will you do with all my pjs when I'm gone, I have lots!! It was all in humour but did made me think that it would be a horrible job to have to do, I also worry that she shouldn't have that responsibility, she means more to me than anyone on the world and has stood by me through everything, she knows everything about me!! I dont really know what else to say, one thing it did make me think was that we should try and make time to do more fun stuff together and I desperately want to go way this year, I know my medical team wouldn't be happy but it something I want to do and were there is a will there is a way!! The next thing that is really bothering me is my brother, he has caused me more heart ache tan he will ever know, the stupid thing is I miss him! And so does grandad, he asks me at least three times a day, have you heard from your brother and of course I never have. I have no idea what to do, I know he doesn't care about ths family, I knew this weeks ago and also at week when I went to hospital, it took him five hours to phone Kate back. Yesterday he was supposed to Cone hone for a hospital appointment at it was cancelled, he promised he would phbe grandad and no he didn't bother, that was the first time I have seen grandad cry in a long time. I guess I have to let it go and as far as we are concerned he doesn't exist. Maybe in years to come he will realise but to be honest e is so selfish I bot think he will. He has cut ties with everyone he ever knew o I guess he is either Ashmed of us or ashamed of himself and what he is. Tere is no more I can say and at the Moment I am helping him out with his phone bill, but at the end of the contract this will stop as I can't afford to do it any longer. I wish thing were so much different but I guess try aren't. The next thing is I am finding everything more difficult, I plod on through madness half the time, but the little things annoy me, stupid things like changing the beds or hovering half kills me, I know if I ask gill she would help but I hate taking advantage of people, I even find hopping hard work t times. Grandad can't help as he is just to frail these days and sometimes a bit lazy, he has to be looked after, and he doesn't want anyone from outside so I guess we plod on as we are. I never thought it would come to this and it had. I have lots of friends and a small family but I sometimes feel so alone, everyone has there own lives and I hate being burden to people, sometimes I just wish, actually I don't know what I wish really. I guess Hiding everything doesn't help as everyone thinks she is ok, I just wish they saw beyond this and realised the pain is unbearable being out of breath is horrid and the constant struggling wears you out, I know many do and I dont let them in but it is tough. Family Oh well I have done enough moaning, I am going to spend today working on ou work as its so behind, grandad wants shopping but he will have to wait and the hoovering needs doing oh and the fish need cleaning out. But that will have to wait. Xxxxxxx Future.

Sunday, 4 March 2012

moving on!

Ok home from hospital one day and lungs hate me again already, the pain is unbearable today so glad it is Sunday and not a lot to do. Thankfully gill came over and helped me sort dinner etc out, everything else will just have to wait.  Back to work tomorrow and whilst i know it is to soon, its a case of needs must.
Today i have done far to much thinking about what has gone on recently and really need to try and sort things out. I also realised how much i miss pete at the moment, i will never forget what he did to us all but i still care about him and miss our phone calls to one another, i think he has moved on much quicker than i have, i guess time is a healer and we will see what happens.
Oh well im of to bed early as so tired, night world!!

Saturday, 3 March 2012

post hospital blues!!

Firstly i keep this blog for two reasons, one way of releasing how i feel and secondly because i can look back and see how things have changer, i guess its like keeping and diary but other people cab read it, i dont really care who reads it i am who i am and people should accept that i guess.

well after a rough few weeks with lots of stress and other thingst i ended up in hospital! today i was discharged with strict instructions to slow down and rest, it seems the pneumonia is back on the right side and my body needs to fight the infection with the help of yet more antibiotics, i knew things were bad on Thursday although i didn't realise how much, i cant really remember much about last week and basically remember going into the surgery and seeing Theresa and thinking thank god she knows me, i put all my faith in her to sort me out, i should of gone to hospital but didn't want to admit how poorly i felt or maybe i wasn't aware of how poorly i was, stupidly i put my life at risk and all because i didn't want to let people down. I remember being blue lighted to hospital with the ambulance crew looking worried and then doctors telling my my gases were rubbish and should of come in earlier. Oh well i guess people with chronic conditions do this all the time as they put their condition as their last priority. I was pumped full of the normal drugs and was feeling better quite quickly, i was lectured about wearing my MEDIC alert thing but i lost it so i need to get another one asap. I was also lectured about working so hard and taking on two much. I was also told i need to try and keep feet up as legs keep swelling which could mean my heart is working to hard and not functioning so well. Oh well im not surprised, i also was told i should use crutches or wheelchair  if my legs etc hurt as they think it is where my bones are week due to the steroids, of course i don't want to do this so going to have to put some thought into that.
Anyway i am home now and so pleased to be, i think i was really muddled last week as i had all my drugs muddled up, i always sort them out for a week but i had them all over the place, its not about not taking them i just wonder if i was taking them in the correct order, oh well i think i have sorted them out no,  i always find i am so emotional when i get home and this time is by no means any different. Every time i have a blip i realise how much this effects me and how much i cant do. I also realise who means the most to me and how some people make out they care but when you need them they are no where to be seen. Im not going in to any detail as i don't really see the point. I am more upset with myself and just need a good nights sleep and to get a grip really. I love my family and friends very much and never want things to change but i know with every admission things are a little bit worse. I am so grateful for my best friend who sticks by me through thick and thin and i know that she is hurting sometimes and she knows the realisation of what is going on. I am also so grateful for Gill, Brian and uncle stephen who have looked after Grandad, . he means more to me than anyone really and i worry about him but everyone has really taken care of him, to them i am really thankfull and i know when life moves on her will be ok. I allways have time to think in hospital and i always think that things need to change and this time is no different, im not sure how at the moment but things will change i am not going to get myself upset and stressed about things i cannot change. i also thought alloy about dad and richard, i know my relationship with my dad has not always been great by i love him  and he is allways there to do the practical stuff, i also need to try and build and better relationship with richard as i rarely see him and i should make more of an effort. Oh well i am waffling now and part of that is the drugs i think. I think an evening of doing nothing is in order.
I feel the desire to scream the world live your life to the full as you never know what is around the corner!!