Not impressed!!!

So my last post i was still in hospital but desperate to go home!! Well that lasted a whole two weeks and i am back in again!! Things werent going well at home but manageable!! Then on friday i went to see respiratory nurse and she sent me to amu which was a disaster!!! They left me sittubg around for ages and finally when i was seen they said that i could do everything they were going to.do at home!! So of home i went and by the nect morning things were much worse so pete took me to a and e where i ended up in resus before going back to amu! Resus were amazing and did loads but amu were pretty much useless as they are so busy! The iv aminophyllin was so supposed to start on was stopped and started at random times which didnt help!! So last night i am thankful to say that i got moved to ashling ward who are amazing. I am now on proper dose of aminophyllin and proper strength nebs so i am feeling better already x today i.am just so grumpy so luckily i.am in a side room where i can be grumpy.on my own! Luckily my best friend brought me supplies last night so that will help!!! 

Its funny how you can be surrounded by a hundred people but still feel so alone!! 

Im thinking i have lits of thinking to do but then thats not alwaya a good thing!! 

slight overuse of nebs!!!

My best friend with supplies!! 

More bloody bruises!! 

Oh well enough whinging!!! 

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Need to get home!!

 so i am still in hospital and feeling loads better, i just need to get out of here now! today i was supposed to go home but the doctors didnt think i was well enough even though i am fine, thats the problem when they look at numbers and unfortunately my numbers are never good! I thought the respiratory nurse might be able to help me escape but no chance! so just got to sit it out until tomorrow and fingers crossed as it is a consultant ward round and they are more willing to take a risk! i honestly feel so much better and i just need to get home now even if i take it easy for few days! 

I think the realisation of the last week is hitting hard and i feel quite tearful about it all. i know once i am home and back into normality things will be fine!! i have to get on with life and live it to the full as you never know what is around the corner, thats one thing i do know!! 

Thankful for life

I cant believe i havent updated this since september, so much has happened and life has been so busy with one thing and another!! Everything has been plodding along until wednesday and things went wrong big time as a result  i am typing this from my hospital bed so as you can imagine i am not impressed. things had been brewing for a few weeks but i was ignoring it as i had so much to do!  on wednesday things turned from bad to worse  to disasterous!! i actually went to see my gp and saw someone that didnt know me so he gave me extra steroids and just said go to a and e if no better later, i thoughy maybe i was over reacting as he was very calm about it all!! well within an hour i went back to work and i think my work collegues saved my life by making me go to and e. my sats went from excellent to ok to 77 very quickly. i spent ages in resus and they did there bit with loads of nebs, o2,magnesium and steroids, i was then  referred to the medics who were pretty useless and left everythig in thr hope that things would settle, i was moved to the respiratory ward from resus so luckily no amu as i think i would of got worse there. well as soon as i arrived on the respiratory ward (who know me well) the ward sister took one look at me and i could see from her look that things were bad. i actually dont remember much apart from thinking i was going to die as i couldnt catch my breath! i remember holding the ward sisters hand so tightly as it was the only connection with the real world as i was so exhausted just breathing. the whole team were amazing and the doctors and nurses did there magic, im not sure how many doctors i saw but definetly to many, itu were called and i was put on optiflow breathing machine to help with the effort of breathing, along with lots of iv medications. they even managed to put a catheter in so i must of been out of it as i would never allow them to that if i was alert! i remember the itu doctors saying we need to take you up stairs but i kept saying no! my mum died in itu and i just cant bare it. it was decided to give it a bit longer and let me stay where i know people. i cant thank the ward staff enough for letting me stay on this ward as i know how busy they are. so all  that was wednesday, up until friday i think i was mostly asleep and couldnt even be bothered to find my phone ( which is unheard of) today i feel much better with just one iv left and regular nebs, 60mg pred! i still feel rough and if i move around to much im gasping for breath but im breathing on my own and thats the greatest feeling!!! i have been pokef and proded and if i see one more needle i may scream, i am battered and bruised but on the positive i am alive and thats amazing! i am really tearful Tonight as i think i am just overwhelmed with everything. i am also in lots of pain so i just need to get on top of that! so hopefully tomorrow i will feel even better and then hopefully they will let me put early next week. i cant thank everyone that has looked after me this week, i am entirely grateful, i know its there jobs but actually everyone has gone above and beyond and given me the tlc i have needed, letting me sleep when i can and just being there when i have needed anything! also thankyou for all the lovely messages i have had!! 

Big changes

What a busy few weeks and some big changes in my life! It’s taken me some time to get my head round things but I’m getting there slowly.  Health wise things are ok, I’m better than I was and it seems the main problem as to why I wasn’t improving was this the pharmacist had given me 1mg steroid tablets and not 5mg tablets so I wasn’t getting the boost I needed. Things improved quite quickly after that! I just have normal grumpy lungs now!! Gallstones wise I finally have an appointment for the 5th October and cant wait for them to make a decision on taking the little blighters out!! I take pain killers like they are going out of fashion and nothing really works! Well that’s that bit done! I know me feeling poorly probably gets to people but I can assure you I deal with what I have going on the best i can, I don’t want sympathy but a bit of understanding would be great!!! 
So the big change in my life is work! Two weeks ago I found out that my job was being made redundant along with everyone in the same department in the company! I have never been so shocked, yes I cried a lot!!! I just didn’t see it coming! So two weeks later I’m still upset and feel let down but I’m getting my head around it! I have literally put my heart and sole in my job and always do extra stuff and I really cared about it and now it’s gone! I totally feel like a failure and a spare part at the moment. I know it will sort it’s self out. I am in post until the 30th October and I will be doing what I need to do but I have to confess my heart is not in it anymore I am just plodding along I guess! I have been offered a new job and it’s OK, it’s not ideal but I can make it work. I have to confess I am worried as it’s going to be a bit more physical and I don’t want my health to go back the way it does.  I have decided I will give it till christmas and then reassess the situation. I still have all my qualifications from my current job so I can always look for something that I can use that it! 

One other big thing is that I have applied and been accepted for my access to health course, I really want to do my nurse training and whilst I know I am a bit old! I am going to try this course and then make a decision. It’s is definetly going to keep me busy! I have ordered the books from amazon so got them really well priced and Pete has brought me one for my birthday . I am nervous and excited at the times.  I think when  I found out about my job I kind of thought that it was time to do something with my life and follow the path I want. We will see what happens.  I have some big hospital appointments coming up so I am going to talk to about them as I need my lungs to be in a little better shape so we will see. 

These last few days I have been feeling better in myself as at the beginning of the week I just kept bursting into tears and felt awful, I did go and see my gp and asked to go back on my antidepressant as I stopped it a few weeks ago and things haven’t been working so well. I am on the lowest dose but that tiny dose works for me. 

I have been feeling so like a failure for many reasons but I know only I can turn that around. I am going to be doing my old job for a while and I am so determined to do the best i can.

One more things I am really worried about a couple of people, they know who they are. They know I am here for them and will do anything for them but I just feel like I am not sure how I can help them the best. Pete is going through a horrible time and just want to wrap him up and tell him it will all be OK.  I know he will sort himself out eventually but I love him so much and hate seeing him hurt. 

I need to finish on a positive note, last week grandad had his 90th Birthday and we had a party for him! It was perfect. Lots of people came and he had a fab afternoon. 

Oh well I’m waffling now so best to stop!!! 

Bad day!!

So i haven’t updated this first ages and it all honestly things have been plodding along nicely! Apart from my gallstones but that’s in hand and it’s just a waiting game!
I had even seen the endocrinologist and he had this great plan of reducing steroids down by 1mg every 2 weeks as well as decreasing inhaler!! Well it was all OK until the last couple of weeks where I thought I had a chest infection so a sample was sent which showed staph, nothing new so we decided to just wait and see!! Anyway this week the weather has changed and it is so hot and humid and my lungs hate it! Peak flow is about 40%, sats are low 90s and genwrally juat feeling rubbish. Today I bited the bullet and went to see one of the nicest GPS at the surgery, he was lovely. Ideally he wanted me to go to hospital but we compromised that I would continue on regular nebs at home and increase steroids and inhalers back up to high dose! The agreement is that I rest and if my peak flow drops any further (it’s allready 240) so he doesn’t want it much lower and if I start getting less relief from nebs I have to go in!! He was so lovely and said that he trusts me to say when it’s time to go in!! I hate feeling like this, I forget how disabling the whole situation is! It doesn’t help that the bronchiectasis has damaged my lungs and now the brittle asthma wants to get involved! If you can imagine trying to breath through a straw that’s what it’s like! Even getting to the loo is a military operations!!! It’s makes you realise how dehabilittaing this can be!! People think asthma is just a blue inhaler I can assure you that for some people it may be but for others it is a ton of drugs, nebuliser and stops you doing so many things!! 

I’m supposed to be at work tomorrow so here is hoping that I can at least get up and down the stairs without gasping for air!!
My new friends tonight are a fan, nebuliser, ipad and smugly to keep me company!!!! 

I know this sounds like a whinge update but I can honestly say I am frightened by not being able to breath and just want to feel better! It’s also very lonely and I know I have people around me but they can’t help me so I just have to get on with it!! Please send positive thoughts as I really need to feel better quickly xxxx

Sleep deprived

So once again it’s been a while since I updated this so as I can’t sleep I thought this was a good opportunity! My last blog was short and I never did do a further one and in a way that’s a good thing as I may have ended up setting people and two wrongs don’t make a right!!

Anyway,  this time of year is rough for us, it starts in March on my mums birthday,  then it’s mothers day and then in April it’s the anniversary of her death! I can honestly say it doesn’t ever get easier! I miss her everyday and these days just make it harder!  Only 10 more days then we get a break for another year!!

Health wise things are pretty rubbish, I have pain in my stomach for the past few weeks and they think it’s gallstones,  it is so painful I could cry! I am taking so many painkillers but they hardly touch it! I have an appointment on the 27th April so just need to get by till them!! I am really struggling with eating as well and I eating food that is no good for me as it is what goes down easier! ! I just want it sorted and quickly!!
Lung wise things are OK ish, I have some  new equipment to use which has helped a bit but I can feel things getting worse,  I am on maximum meds so just going to have to adapt! I feel like all I do is go to work, struggle through the day then collapse on the sofa! I know from the outside it all looks OK but having breathing problems is 24/7 . I am determined to have a life but it is getting harder to do everything,  got to stay positive though! I know there are people worse of than me!

Life in general is ok, I was offered two new jobs a few months ago and I turned then down as I love where I am and they have been so good adapting things as needed! The money was a lot better at the new place and that would of come in handy but that’s not an option now,  I probably need to work so extra shifts but physically I just can’t manage it!!
Home is fine,  we plod along as we do!
So have I missed anything? ?? Only the fact that I can’t sleep and cant remember when I last slept well, this is adding to my anxiety as when I’m tired I find things difficult to deal with!!
Oh well it’s a new week tomorrow and I need to achieve lots especially as I feel I am scrutinised for what I am doing! I will succeed!! Oh well I’m of to count sheep!!!

Enough is enough!!

image

I could write a long post *(I will in the next few days) but this is where I’m at with everything at the moment!

Another bloody thing to add to the list!!!

So once again it’s been a while since I updated this,  I guess not a lot has been going on!
So tonight I can’t sleep,  normal thing but it does annoy me!! Since Christmas  I have had a chest infection  which keeps reaccuring so at night I cough and am out of breath which makes sleeping more
difficult! 
I have been back and forth to the respiratory team for the last few months and not really getting better or worse,  so plodding on with different antibiotics and more steroids!!! I have to admit I am gutted as I had been so well for a year and now I feel I am back to where I was a year ago, don’t get me wrong I’m grateful for the time I felt well,  whilst we thought this was a blip, it seems maybe it’s not! On Friday I had a letter from my respiratory Consultant explaining that my ct scan shows I have bronchiectasis which basically means my lungs are a bit more rubbish than we thought and they will probably on get worse as the damage is irreversible!!  It explains why I feel so rubbish and cant clear infections well! What I have been bringing up is disgusting,  it’s full of blood and looks like Lumps  of lung coming up! I am going you call the respiratory nurse on Monday to see if there is anything we can do but it seems long term antibiotics and physio is the
key and I allready do this!!   We will see but I would like to feel a little bit better!!! So health wise things are rubbish but life in general is good!  I am a bit annoyed that I have just settled In to a semi new role at work but it means working longer shifts and I’m  not sure my health is going to allow that  I’m not one to be beaten so we will see! I do have to start putting myself first otherwise things could get worse and I don’t want that! !
Other than that life is plodding along and fingers crossed this is how it stays for a while! !
I am struggling a little bit with feeling anxious but I think that’s partly due to feeling so rubbish and being on lots of steroids! Steroids are the most evil drug you can take, yes they work but I literally feel on the edge all the time,  I can’t explain it is horrible!  Doesn’t help that I can’t sleep, they can’t think straight, then struggle to get things done and then feel like I’m letting people down! 
I think I just need to get away from it all, so me and Kate are of to fueretventuta  on Saturday,  I think it’s just what I need,  although I’m not sure Kate knows how yuck I feel and I just hope I don’t keep her awake with coughing etc! Fingers crossed it’s the warm weather that I need for a boost! 

Oh well I have waffled on for ages, I’m sure that makes no sense but as I always say this my blog is for me to track how things are going and also I’m now really keen to raise awareness of bronchiectasis  and brittle asthma as new treatment desperately need to be found.

New Year, New start! A wake up call and honest blog!

So its been ages since I updated this, so I think new year is a good time for a post. Something was said to me today and it has really hit home how things need to change, it doesn’t matter who or what was said but i have know about it for a while and now need to change things, ! So whilst I was going to update this anyway it is going to be with this in mind.

So firstly a quick update, The last few months have been rough! Back in October I had a nasty chest infection which was  being driven by some grim bugs! Well since then we have been battling it with numerous antibiotics and extra steroids, it has made me feel really lousy and in a lot of pain! At the beginning of December, it kind of came to ahead and i end up in hospital after a visit to my gp who quickly realised how poorly I was, i was getting to the point of exhausted so it was definitely time to admit defeat. One lesson learnt that I needed to deal with things quicker as I was putting it of as i didn’t want to let people down. Once in hospital they were amazing, they reacted so quickly and icu were called and a plan put in place, i was placed on optiflow and that along with massive doses of drugs and antibiotics things turned a corner after a few days, that night i was absolutely terrified and on my own. One of the nurses stayed with me and I was so grateful. I am usually so good at coping with admissions etc  and usually I don’t want anyone with me as I need to deal with things and find it easier to concentrate on my own, but as this was my first in over a year it really got me hard, I should’ve and could of asked someone to come and sit with me but i was nighttime and I didn’t want to bother anyone, not sure if things will be different next time, we will see. I was in hospital a week and then back home, still not quite back to normal but ok. Since things are still not great and i have had a cold since christmas eve which is lingering. I am still growing bugs that I need to disappear but slowly I am getting on top of things. I am really struggling to manage the pain in my chest due to the infection and constant coughing, i am really miserable with it. I just want to feel better.!  One thing since my last admission is that I have been struggling to sleep, partly because of coughing but also because I feel like I cant catch my breath when I lie down, i think this is mostly because of the cold i have and the underlying symptoms and that doesn’t help when anyone feel better if they are really tired. I have another appointment on Monday so we will see how things are going, fingers crossed this cold buggers off by then!!!

So this brings me on to what was said to me today and that is that i need to chill out about things! This is absolutely true! ,  I know I have been really stressed, miserable and probably unbearable at times, I am fully aware of this and trying really hard to juggle lots of things, not just work and home and but a few other things as well, this on top of feeling poorly and I am just not coping. Being on high dose prednisilone doesn’t help as it is known to change a persons mood and the side effects are awful.I am physically exhausted from being in pain and not feeling well, I am overwhelmed by so much going on and i feel really under pressure. I am not using any of this an excuse and I am going to be making a real effort this year to be a nicer person. I would never purposely upset or snap at anyone and actually I worry about that constantly. I have been really affected by other people criticising me and things maybe I should be doing or done, I have been trying my best but not really getting all things done, this is in home life and work life. I wonder if people really thing before they say things or whether I just take things so personally (I think its that later one), the problem is that I then get so oerwhelmed I just cant cope. So with a new plan things are going to change and quickly.

I can only apologise from the bottom of my heart and make changes, So I am going to draw a line under that all, I would hope that my friends would just understand and if they don’t understand then maybe they aren’t my friends. Well that’s a load of waffle but I know what I mean and I know how I want to be! I want to be nice, caring and kind but also want people to respect me and not take advantage! We will see how that goes.

I could write a whole section on being overwhelmed, working to much and having so much to do but that’s my problems and I need to deal with it. I want that to be the past and move forward.

Chirstmas was ok,  especially after last year where i had surgery so didn’t really happen. Since last year things have changed so much and I although its been tough I am so grateful. The surgery was tough and it took me more time to recover that i realised. The surgery I had was a bit like a gastric bypass but I had it done as i had such severe reflux it was leaking constantly in to my lungs, i also had bit taken away that were really damaged from the reflux , as a result I have lost 5 stone in weight and there has been problems, nutritionally I am not where i need to be, I still get sick when I eat and  i have a really unhealthy relationship with food and I am aware of it, its just not easy to make changes. I had a recent appointment with a dietician and i have a eating plan to follow as I was restricting to many calories and she actually said i have an eating disorder (I would of never of thought  that would be possible)! I.m not convinced that’s the case and to be honest I am not sure I am ready to admit that, I still feel much bigger that I am and I am not where I want to be weight wise. I know people will be saying that I am lucky I have lost so much weight and it must of been easy, well I guess in a way i am and it has been easy to lose weight as I hate the sight of food,  but i am actually malnutritioned and not getting the vitamins and minerals I need, I also get sick a lot after i eat so it hasn’t been such an easy ride and I definitely would not have had it done just to lose weight it is much harder that people may realise. I am grateful for all that i have been thought i  no longer have any reflux or the constant respiratory problems so it was all worth it, the food battle is just something I need to get sorted out and I hope in time I will get there.

So back to christmas, I had some lovely presents and spent time with those that mean the most to me. I did have a stinking cold so much of it was spent on the sofa but that was just fine! Christmas is not a good time of the year when you have lost people as it makes you realise even more how much you miss them, i’m kind of glad its over and we can start the new year.

So new year, new start, I know we all say that but I really want it to be like that, not in all areas, so things are just going to be as they are and that’s fine.

With work I plan to be more organised which i have nearly achieved. I have put so much effort in to  new way of working and being organised it better work!!  I am also going to have to learn to not let things annoy me as much as they sometimes do as this is what causes me to get cross. As I always tell people, you need to choose your battles in life, So I think that is what I need to do.

Home life is ok as it is, we plod along and I am happy and content, this year  I do plan to see people more often and make more time for people. We don’t have  a big family but I am thankful for what and who I have.

So all in all life has been rough but its going to get better, If people want to be part of my life that is lovely but I don’t need people that are going to make things difficult.  I will support anyone in life but I also need a little bit of support back, so one thing this year that is going to change is that I will be surrounding myself by people that I have genuine friendship with.

Oh well that turned into a lot of waffle and as I always say this is my diary of my life so I can look back on and see how things have changed. If people to choose to read it that’s up to them, I do plan on updating it more often if time allows in the new year but for now I am concentrating on me, those that are most important to me, changes will be me made for the better and life will move forward in the way I want (fingers crossed)

2015 is behind us, today is a new day and a new year so I am starting with a blank page and going to make the most of it , if you want to be part of my journey that’s fabulous but equally if you dont thats also fine!!

 

 

 

 

 

 

Never learn!! 

So it seems I never learn from experience, well I mean mostly health wise!!!! So since coming back from Tenerife (which was amazing by the way) I hAvent felt well! My lungs just have been awful!!! Last Wednesday I had an appointment with the respiratory nurse at the hospital and she was amazing as usual!! We reluctantly decided to increase my steroid dose from 13mg to 40mg! As you can imagine I was not impressed but I knew it was needed! Well yesterday I was still no better and went back again as planned!! She was not impressed to say the least!! My peak flow was way below 50% of best (which isn’t that good anyway when I’m well) my oxygen levels were ok but I was working hard to maintain them and just generally not well!! I’m lucky I was not admitted there and then, I think anyone that didn’t know me well would be panicking and sending me in but lucky the nurse knows me well and agreed to try and increase steroids to 60mg until Wednesday morning when I see her again! Yesterday was horrible I felt so poorly and I could not do anything without having to sit down! So finally I decided enough was enough, I needed to start thinking about me so extra steroids taken, regular Nebs and some much needed sofa time! As soon as I left work I felt some relief! I really hate taking time of as I hate letting my colleagues down but I also know I can’t work like this!!! So this morning I feel a bit better and I actually managed to sleep for a few hours which has done me good!!! So today the plan is to go and collect a prescription and spend the rest of the day not doing anything!! I am hoping things have turned a corner even if it has taken over  a week but then again maybe if I had stopped trying to do so much a few days ago or maybe gone to a and e when things were quite bad I would of got over it quicker!! Who knows it seems I never learn!!!! 

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