Sometimes in our lives

There are times in our lives that we wish our best friends were our brothers and sisters and some of our families were just are our casual friends. You know why.

There are times in our lives that we wish that we can go back to the past and could relive our lives better than we did knowing the mistakes we did and the opportunities we missed. Would that be neat and great!

There are times in our lives our faith in God is greater during our times of trials and frustrations yet sometimes it is also during these challenging times that our faith in God is about to fade. Tell me about it.

There are times in our lives that our hope turns to despair. The higher your hope is…the greater is the frustration. There are times that you don’t want to hope no more knowing you will just end in despair. Keep hoping that you don’t depair.

There are times in our lives we question what goes on with our lives. Things are meant to be and like they say…things happen for a reason. That reason remains to puzzle you till you find out later why. Then you’ll say…now I know why! I wish I knew before why?

There are times in our lives we wonder why people are luckier than others. Why you suffer more than others? Why people are better than others and why others are worst than you? Why do you have to work harder to better yourself? Never ending-why‘s! Why not?

There are times in our lives we just want to ponder, think and count our blessings or sometimes our misfortunes. Times in our lives we see the inequity in life, the challenges ahead of us and what we have to accomplish to make us better and happy in this life – so others may envy us. What a cycle?

Sometimes, in our lives…we wish we were dead…but we will never know the reason why things happen to us. So, stay alive and you will find out why! Will it be worth it? Sometimes in our lives…we got to try!

Remember

Remember me when I am gone away,

Gone far away into the silent land;

When you can no more hold me by the hand,

Nor I half turn to go yet turning stay.

Remember me when no more day by day

You tell me of our future that you plann’d:

Only remember me; you understand

It will be late to counsel then or pray.

Yet if you should forget me for a while

And afterward…

My Mum

My mum has always been a big part of my life but more now than ever.

As a child she was the one that provided the care for us all though we had our disagreements we got on well, yes there is things that I feel I cant talk to my mum for.

But when my sister was ill she did try and make sure I wasn’t forgotten but the relationship did sufferbut when I got home from uni the relationship improved again.

Now my mum does my washing, vacuuming and comes to see me every day without her I cannot function alone at home. She comes to see me when I am in hospital and makes sure everything is done.

My Mum does nag me allot about things and she dosn’t quite understand what I go though my mum is my rock and would be lost without her.

Benefits

I’ve seen lots of people moaning that benefits are enough to live on and cant see why it isn’t.

I get DLA of £198 a month and ESA of £400 a month, my rent is paid by housing benefit. I pay all my bills which is gas £32 a month, electric about £25 a month, phone £25 a months and my broadband £5 (had savings so paid a years line rental at once) and have plenty left over for what I want a run my own car. Yes sometimes i have to go without a meal out or say my to my mum I will pay her for my washing when I next get ESA.

I think where some people go wrong it sepnd so much on phone contracts they dont really need all the add on’s and run up debts its all about living with the money you have. Saving when you can I have already got about £400 saved for next years car inurance and MOT and got £300 saved for fund hoildays and trips

Annoying Habits in Hospital

Im not talking they daft old ladies in other beds screaming out its the little things that annoy you in hospital. Here my list

• Putting a neb on someone and not turning it off when it finish’s. Nebs are a horrible sound really and after a while it annoys you. People dont often turn them off themselves so they go on and on.
• putting you on am ointour and ignoring it when it alarms. What tha point of monitoring you when dont bother to look when alarms
• Ignoring drip alarms
• Giving a bedbound patient a drip stand that moves and a mobile patient a bed one… means I have to ask to go for a wee
• Waking you up for a cup of tea
• Just starting obs in the middle of the night without telling you so wake up when bp cuff goes off
• Saying they will do something and then they dont usually through doing something else
• Ignoring call bells
• Not giving you your call bell
• Saying continue a certain drug and dont write enough for that period of time
• Writting your regular drugs out correctly when its just copy from a list (with dosage and times on)

Travels

It was was my Dad’s 60th a few weeks back and we decided to go away for a night as a family (just before my appointment) so we wetn to bournmouth stayed in a nice hotel and went to the beach. I managed to get into the sea and chill on my jumbo ring for a while before chest started playing up due to BBQ’s and people smoking. Luckly even though Bournmouth is hilling there was a lift up on of the hills near the hotel so I could use that but shame as not blue badge parking for free.

A few days of a rest at home and then was off again to Leicester this time to see the lovely Emma, I was meant to be meeting up with a a friend at uni but he cancelled on me at th elast minute which annoyed me. We went to the cinema and generally chilled. Will be going back and visiting again!

However on the way home I became wheezy as the weather changed. I kept plodding my way home manly as I didn’t know where I was a didn’t know if could get help if I needed it until a local Minor injuries unit. I stopped with the plan that one neb and I should be fine as my portable one is rubbish. But no they kidnapped me to the local hospital (just in the zone). Seen by a newby doctor who basically ignored me doing the lets give you a few more nebs to see if that helps until my gases looked horrible and needed more treatment. Its taken me longer to get back under some breathing control this morning than I think it should of been if just bothered to read the plan when I first came in.

The Appointment

Well my list of questions got forgotten as usual, but I think covered most things!

The team has changed so I saw a new Dr but he seemed interested in trying to help, he took his time and answered my questions and didn’t talk to me like I was stupid.

Basically he thought that I have almost a permanent bug in my lungs and since the antibiotics originally helped he thought the bug grew used to it so thinks rotating antibiotics will help. He also thinks antibiotics when in hospital is a good idea so has asked this being added to my plan.

We talked about VCD and he is now under the belief it comes secondary to the asthma attack due to my high inflammatory markers and witnessed during my exercise test. He is also convinced that I have asthma that is very difficult to manage due to lots of issues going on.

We talked about reflux, I had a pH test and basically I still have reflux despite the amount of meds I am on for it. Though did say that is wasn’t when I was coughing so not causing the asthma. He was going to discuss with the consultants about referring me for surgery. I’m not sure on if I want the surgery as it is like having a gastric band and then you have to watch your diet for months after.

As for VCD he thinks that it still should be helped when in hospital to make sure it doesn’t make the asthma worse so wants me ENT when I see him to add bits to help and he is writing a protocol for the use to healiox

Finally the biggest bombshell he thinks I could have early bronchiectasis. I have to have a CT to check for this but at the moment apart from having more physio and more IV antibiotics. It is a progressive condition though. We will see I don’t want to think about if I do have it to much at the moment

Bravery and Community Awards

I am watching the 999 awards and got me thinking.

The was a St John Ambulance guy who won an award and they were saying that he gives 700 hours to SJA a year well I’m sorry my Dad was giving 1000 hours plus we just didn’t shout about it. Not saying my Dad was anything special but there a hundreds of people like my Dad who give their lives for SJA an Red Cross and don’t shout about it. Especially in St John’s the county you come from has an effect on the recognition you get even in Wiltshire the division you were from made an effect. For example I once helped at a RTC when I was 14, I also performed resus on a drug overdose when I was 17. However the county never recognised these nor did they recognise my efforts in a number of other jobs but others from the officers favourite divisions would also get recognised for simple things. For example the county youth team is made up of nurses and paramedic’s and they stopped at a rtc and helped, for the paramedics in the team this is normal.

There was also awards for a air ambulance paramedic who stayed with a casualty whilst the tide came in. Though not disputing this isn’t a bravery act, but I know every emergency profession wouldn’t leave a casualty, its getting the right jobs and someone who will shout about what you’ve done. Its a game of chance.

Why should one group of volunteers get an award over another, for example the RNLI every night in the winter people are going out to save others in the thunders. Why should one person get an award for doing there job, even if they deliver more babies than anyone else.

I repeat its a game of chance with someone to shout about it.

I believe that every community volunteer, every member of RNLI, SJA, Rescue or BASICs have some reason for an award.

As for paid members of the emergency services there are individuals that do more than there job description. It is a job, I would hope that if other professions were in the same situation they would also go beyond there role.

Fundraising

Today I saw a story for a girl with CF trying to raise money for a eflow (a nebuliser) and it got me thinking there are many people trying to rais money for themselves to get treatment or equipment. I can see this girls reasoning for an eflow but i understand why the NHS cant afford eflows for everyone most asthmatics have to live on borrowed ones or pay for there own as far as I am aware most cf patients get a eflow if on a particular drug (might be wrong!). There isn’t very often stories of people trying to raise money for a eflow or other medical equipment but what i see allot of is cancer patients trying to raise £100’s and £1000’s of pounds for a course of medication which is the new miracle drug in USA usually. I personally wont support these as I believe that the medication available to the UK is usually enough and they should accept things sometimes and why should one person’s life be more important than the next. Once on TV there was a story of one of these patients the new drugs as they hadn’t been tested over years the effects in long term use were unknown, this drug made the child’s condition worse and the child later died. Who knows if they would of got longer together if they didn’t have this drug.

I personally cant see people giving me money for a eflow or to go to USA for treatment. Don’t mind people trying but i wont put money into a pot for someone I don’t know for cancer treatment or a eflow as I’m sure there are more local people that could use my money.

A Shell

A number of people say to me I’m a remarkably positive person. I don’t always believe I am I think I bit on a shell to outsiders, I don’t see no point in moping with them as I want people to think I cope with things though I don’t. I thing this is a downfall of mine as don’t think people realise how much an effect things have.

I don’t believe I will get much better, I think will always have admissions and will always be on more drugs than I want to be but I don’t want people to know I know this is part of accepting your condition. I think also doctors like you to appear like your trying to help yourself that you don’t like your lazy life. But also don’t think my doctors know the true extent of my condition on my state of mind and lifestyle. I am going to try to show this in the best way I cant on my next appointment.

No one really wants to know the ins and outs when ask how are you? so I just say I’m plodding along which seems as good description of my life, plodding through each day never getting faster of slower just moving through without any drama’s