Quick update

I haven't updated this for a while so thought a quick catch up was appropriate. The past few weeks have been busy with one thing and another with work, home and what seems like lots of hospital appointments. As for home everything is plodding along and me and grandad now seem back in our own routine again so that's one thing, the last few weeks I have been thinking much clearer and finally asked for some help from someone that I had been wanting to ask for for ages, anyway I did and I think it has sorted something out which is good. The most exciting news is that I am going on holiday in two weeks with my best friend, it was a bit of a last minute decision but it's now booked and we fly on the 12th may, I am very excited and looking forward to the rest. I know many people think we are stupid going away but like I have said before I need to live my life and make the most of what I have, my medical team know and although they were a bit worried they had to agree I am not silly and would be veto careful. So that's it we are of and I can't wait. Work is fine, just busy but thats normal I am now on shorter hours and Its nice if I can get away on time. As for health things are about the same I had a Southampton appointment and he decided the methotrexate wasn't working and was causing other problems so this has been stopped, I am disappointed but I can see his point. He is still keen for me to have the surgery on my stomach and he has said if that doesn't happen there is a new steroid sparing drug I voud try, other than that he said my lung function is still appalling, so yet again it is a waiting game, I saw the gastro surgeon who was lovely but not keen to do surgery, however he did agree to do three new tests to check my swallow etc and then see him in 6 weeks for a final decision. I have also seen the respiratory nurse and looked at all my medications as there are so many and it is getting confusing, any way she offered to get them blister asked for me if I want on a weekly basis, I wasn't keen on this so I have bitted the bullet and asked Kate to help me, she has helped me sort out all that I have and a couple I was taking at the wrong time, do now I think they are sorted, I can usually sort the out myself but when my oxygen levels are low I do feel a bit muddled and I think then I look at all the boxes and think, of f@@k where to start! Anyway that's done and although I felt odd asking for help I did it.m Another situation is a annoying me and I'm not going to say my here as its delicate and I need to sort it out myself, I I hate being used and I feel like someone is taking advantage, I have no idea where I stand and the situation has changed very much, oh well I guess time will tell and I just have to wait. Anyway I have a dy of housework and shopping ahead then I am going to collapse with exhaustion on the sofa later.

missing you more than ever!!

Tomorrow it will 13 years since the decisions was made to turn of my mums life support machine, i will never get over that day and as much as it has become more bearable it still hurts.


In the beginning  i used to look down the road and wish it was all a mistake and you would walk back into our lives. 
Such a lot has happened since then and life has changed so much in good and bad ways. Everyone has moved there lives forward and i know that 13 years is a long time but i dont think people realise how much they should appreciate there mums, i never told mine often enough and have lots of regrets. I miss not being able to ask her advise and having her to lean on. I wonder what life would be like now if she hadn't gone!!
I think people should be grateful for what and who they have as it can be taken away very quickly.


This is a poem i wrote a few years ago for my mum so thought i would add it here.
It broke our hearts to lose you, but you did not go alone Part of us went with you the day God called you home.A million times we have thought of you, a million times we have cried.If loving could have saved you, you would have never died.Forgive me Lord, while we always weep.For the one we loved, but could not keep.You were always warm, happy and bright Now we see you sparkle every night.You will always be cherished in our hearts forever. Family and friends


Tomorrow is going to be hard but i guess its just another day.




Apart from this going on this week i have had a good week, i managed to catch up on loads of work and have such a laugh doing it.  I have also spent some time with Kate and it has been so nice, just like old times i think i forgot how much of laugh we can have. 


As for the hip that's driving me mad, it infected so i am on more antibiotics. I have been lectured today about walking on it as i was told not to but that's easier said than done but tomorrow i will try and use the crutches, if i break my neck then i can tell them i told you so!!


Oh well not alot else to say
xxx

Need to hide till after Thurssday

Blogging is a funny things, its like having a diary but you forget that people might read it, i don't really care who reads this and i never think of it like this. This is my way of letting of steam and i suppose a way of being able to look back and see how things  have moved on.
This week is the week i hate every years, last night would of been 13 years since my mum collapsed and was rushed to hospital with a blood clot on the brain, i will never forget that night and often think what we could have done differently and also i guess how life would be so different now if she was still here.
Thursday  will be 13 days to the day when we made the awful decision to turn of her life support machine, i know we did the right thing as she always said she if a situation ever arose then make sure the machine was turned of as she didn't want to be in a vegetative state.
I still wonder if she knew something was wrong (although im not sure how she could) but that week she had made sure we had cupboard full of food and that everything was done around the house, i know it sounds silly but we always went shopping on a sunday so why on this week did she go two days earlier, we will never know i guess. I cant wait until after tuesday then we can move on for another year, It never hurts any less you just get used to it i guess.

This week has been a busy week, I saw my local consultant, actually both of them and they were really nice, they have no new answers apart from the fact that my lung function is at an all time low and there is not a lot they can do as i am on every drug available. They are going to speak to the surgeons again and i have an appointment at the end of the month to see if they will reconsider, i think its grasping at straws but who knows. I am also going for another test to check my swallow etc but not sure when. I did  finally get some answers to why i have been feeling so rough, i had some blood tests which showed very low iron levels and a very high white cell which explains why i have been so tired, first of we though the white cells was a chest infection but on friday i suddenly developed a swelling on my hip which turned into an abscess and has now burst (which is yuck) i have been given some antibiotics and told not to weight bear for a week. It is so painful i could cry. I'm not sure how i am going to cope at work this week as walking around is agony and if i use crutches then i have to put up with everyones comments. I have hopefully got some sit down jobs so i will see what i can do.

I have resigned myself to live for today and not worry about the future as who knows what might happen, i  am so grateful to have such lovely people around me and as usual kate has been an absolute star and supported me completely, she means a lot to me and she knows it, im not sure where i would be without her i just wish that i had more energy to do things, like going out etc. Although she says she doesn't mind i still wish things were so different. Oh well one day!!

I don't really have anything interesting to say so i guess its time to sign of for now and try and have a sleep after i have taken some super strong painkillers.

Lazy day

After a busy week today I am finding it hard to have any energy to get up!!
This week I have a busy week again and today I was planning to get organised but so far not a chance.
Yesterday I had a lovely day and then at the end of it I was in floods of tears! I think little things make you realise what you don't have and how life could be so different, I'm not going to say much more about it, just I wish things were so different.
Anyway my best friend said to be in the week that I need to start living my life and going out and having more fun, she was so right but it's easier said that done, definitely something to work
On though.
Oh well everything is plodding along and that's ok with me.
I really should get up and get things done, that's when I drag my butt out of bed! !

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

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

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