I've finally got a psychiatrist

So after nearly twelve months of getting wrapped up in my life AGAIN, not being able to find a suitable psychiatrist and my own GP not really helping I've found a psychiatrist and she's the perfect fit for what I need

Mentally I'm not well because CF is really playing on my mind and I'm struggling to cope with it at the moment and all the new things that's going on with my health I needed someone outside of everything to talk to. A few months back I thought I was coping but today showed me I wasn't and showed me I've been very nasty to some people very close to me who I love very very much. 

And firstly I want to apologise to the person who's put up with it all. My Fiancée 

Max I'm sorry for all my shouting, all my remarks my rudeness and most importantly I'm sorry you had to deal with it all but also thank you for understanding what's been going on. I love you so much.

I had my first session today and whilst it showed I have been trying to sort my problems out what it really showed was that I can't actually sort them out myself. I never believed I had mental health problems but bottling things up turns them into mental health problems

My psychiatrist used the unfortunate news of Robin Williams today as the perfect example. It can happen to the best of us. Someone who makes you feel happy and makes you smile isn't necessarily feeling that way themselves. That's me according to her. I think she might be right.

I'm happy with what I have in life and what the future holds infact I'm very much excited about the future. I'm just not happy with myself

I finally feel like I might actually be able to solve my own puzzle in my head the lady I will be seeing understand cf and it's mental stresses because she works with many cf patients and that's fills with hope that she's the right person to fix me. I certainly feel comfy talking with her today so it's a good start

Fix me. Isn't that strange to say it like I'm a problem but that's how I've felt like I've been a problem to deal with for some people like I've been a pain in the arse

I'm talking to the psychiatrist again soon and to plan what to do for the future and getting me all the help I need

That feels nice to feel for the first time in a long time that something can be done about how I feel or don't feel as it seems

It's still a big thing for me to say it but I'm not afraid or ashamed to say I have problems and I know that all the people around me will support me in everything I do to get right.

In some ways don't we all have one problem or another?

Thank you for reading

It's been a while. Here's what's happening and how I feel

So it's been 3 months since I blogged

I must blog more often

Anyway

I was recently listening to music and as I do from time to time I realised the lyrics could actually mean something to someone with cf. Not all will agree but I see it like this

The song talks about something being a piece of them which they wished they didn't need

Well to me cf is a part of me which I wish I didn't need but without It how do I know I'd be the person I am today without having gone through everything I have with cf and how much I've fought and the pain I've experienced. Everything I've gone through has helped me learn to become the person I am now. So yes I wished I didn't have it but actually I don't. I wouldn't be the all the things I am now if I didn't have cf I'm sure of it

It then talks about love being a tradegy but how it is their remedy

Well again I see this as something I can relate to cf

See for me I feel like I have to love cf!

Why?

Well because if I didn't love cf and appreciate what it does to me I'd never have the strength to fight it and put up with all the bad things it does to me

What's that saying? "If you can't handle me at my worst you don't deserve me at my best" 

For me this is classic cf talk

You see I see it like this, I deal with cf in my way and I may moan about it and rant on tweets or Facebook about how I feel etc but I've learnt that when the goings bad I get through it no matter what it does be it taking drugs, doing physio, antibiotics or nebulisers I honestly hate doing it all like  for example most people sign up to a gym go once then hate going ever again, except with cf I do all my routine everyday and I can't just give up after a day of doing it, the next day I start all over again. No matter how much I hate swallowing pills or feeling chest pains and aches or doing my nebuliser, when all that is done and if I have had a rough day or I've been ill or in hospital I think to myself

Yes I may be ill, yes my life is all physio, tablets, exercise, days of pain or days of feeling like I'm drowning in my own mucus filled lungs but no matters how many days I have like that, I know there will be one day that will come along (and it may only happen occasionally) that I feel healthy, feel good about myself and get to go out, see the world, enjoy life maybe do something fun or go for a drink or do something new, and appreciate that that day I had a good day, even if the next is a day I'm ill or in pain I will have those good days to help me move on a feel good and experienced good things.

Hence why I relate to the saying I mentioned above

And finally the song mentions insanity and clarity

Well here goes

Do you know someone who I see as an inspiration once said

"Fear, it paralyses the majority but gives clarity to some!!"

For me I do fear things but do you know what even when I fear something I still think "let's do this" 

Do you know when I first signed up to gene therapy and the bronchoscopys it involved I was fearful of the outcome and what it might do to me but I still signed that paper I still did it, I even discussed with my mum if the worst was to happen, and I said it all the way through "mum if this goes wrong you know what to do". Infact at the last and final gene therapy visit and bronc that saying nearly became a true fact but that's for another blog entry. That aside I still went through with it and finished what I started. And that experience only helped me to learn more about myself and how my body is coping.

See for me fear is something I sort of enjoy, the relieve you feel after fear is like an adrenaline rush you cannot experience in any other way. And I'm sure all of you at some point have had that feeling of relieve and joy after fear and maybe even thought "I want to do it again" just like the feeling you get after going on a fair ground ride. We've all had that feeling right?

See when I think of that saying fear provides me with clarity. I don't fear death, I fear how that death will come about, the unknown! But when the unknown becomes known I will feel clarity in my dying days knowing it's coming and at the end I won't have to feel pain anymore, no more physio, tablets, IV drugs, and no more agony, and that is my clarity the end will provide me with, no more CF. 

But not yet.

And the final word I took from the song

Insanity

Well this is a short explanation

I think (and you proberly think it aswell) you have to be insane to say or think any of the things I have said above.

But hey no ones perfect right??

Thanks for reading

What it's actually like to live with cystic fibrosis on a daily basis

I was at work the other day and someone asked 

"So what's it actually like to live with cystic fibrosis?

Well here goes

When I wake up I start by taking these :-

That's 

Two Lansoprazole

Two vitamins A & D

Two Adcal D3 tablets (because I'm osteopenia)

Two ursodeoxycholic acid

One tocopherol acetate tablets 

Then I do the following antibiotics throughout the day :- 

Two fucidin tablets three times a day

Two doxycycline tablets once a day

I take the two antibiotics mentioned above because I'm currently culturing MRSA in my lung sputum results

And

One Azithromycin tablet once every three days to help with inflammation

Ito help my lungs I do these :-

That's two pulmozyme per day one in the morning and one in the evening to help breakdown the sputum growing in my lungs

And one hypertonic saline per day again to help me remove the sputum from my lungs

These are nebuliser treatments that I do using an ineb. This device helps to transform the liquid into a vapour which I can then inhale into my lungs to help it start its job

Everytime I eat I have to do these :-

These are Creon 25,000 pancreatic enzymes

I have to take between three and twelve everytime I eat and the quantity depends on how much I eat or if I drink a fatty drink like milk etc

On average I take around 40 tablets per day

Oh on top of the Creon I need this. :- 

That is novorapid short term insulin as I have cf related diabetes (cfrd for short)

I have to inject everytime I eat anywhere between 10 - 30 units per snack or meal.

On average I inject about 100 units per day

Twice a day I try to do something called Autogenic drainage

This is a type of breathing technique that helps to loosen and shift the mucus up and out of my lungs

I will admit I'm not great at doing this but I'm always trying to improve and am getting more consistent with it

Throughout the day if I'm struggling to maintain a good weight I drink this :-

That is a scandishake

It is mixed into full fat milk and helps give my body what it needs to either maintain or gain weight

Each shake with full fat milk contains approximately 600 calories

And finally before I go to bed I do this :- 

I know that looks similar to another item mentioned above but it's not

This is levemir. It is a background or long term insulin that I inject once a day approximately 30 - 34 units. It is designed to stop my sugar levels from increasing once the novorapid has worn off and to give my insulin levels a constant help throughout the day

Well that about does it

In summary I take approximately

60 tablets everyday

Inject insulin approximately 4 times a day and approximately 130 units

I do three lots of nebulised antibiotics

Two lots of autogenic breathing exercises

And finally at least one scandishake per day

And I still lead as normal life as possible and do things that anybody else does I.e. Go to work, visit friends, have days and nights out, go on holidays and play sports

How?

That is because to me this daily routine is a normal life 

I know no different in life when this is how I live my life

People say don't you want a normal life?

Well you know what they say

What you've never had you've never missed.

I would also like to add that I'm not the only person in the world who lives there life like this 

Of course I'm not there are others who may do more and others who have to do less in there daily routine.

I just simply wanted to show you what a day in my life is like

Thank you for reading

How CF makes me feel! Just a few things I thought I'd say

Firstly before anyone gets the wrong idea I'd like to say that this is my own opinion but I'm sure others feel the same 

How does CF make me feel?

Well actually it doesn't make me feel any different to anyone else because I've never felt like others have so if I don't know the difference how can I feel different??

I've only lived with what I've got and that to me is what I am and who I am but to me I'm not different. 

Have I ever been treated or scene as a different person?

You will always get someone who sees you as different but in general nothings been different for me or my friends or family

Okay some people do see you different and may treat you different but I've never experienced that in a negative way only in a loving caring way 

For example when I go out with my friends they always watch out for just to make sure I'm okay but they have never stopped me doing anything because they know I will do the same things they do even if I can't I will always try and they know I hate to be seen differently but they just care and there's no harm in that 

In fact I'm very grateful to all my friends who have watched out and care for me over the years and I cannot thank them enough for what they have done for me 

Even though I'm not healthy I still know no different so to me I'm just me I'm a normal person no amount of drugs, needles, tests, mucus or infections have changed me or will change me

I like my life and to me I'm just lucky to have enjoyed it so much as I have I've had my down days like anyone but they make you wise 

Is there anything that I see differently at all?

I don't think I see anything differently but I think I maybe appreciate things more than some others may be do. Why? Well I think and may be I'm wrong but with any serious life long illness or a near death experience it can change you and you learn to love things more and for me CF has made me love and appreciate more things than most people would and I'm open to trying and falling in love with any new things I've done

For example my grandad Tony used to love his classical music and when I was younger I never really understood classical music and opera music but I always loved hearing it when I walked in to my nan and grandads and seeing my grandad sing it and make it fun and for me my grandad gave me a gift from a young age and that was to teach me what it was and it meant. For me it's something I hold special to me as I've got older I've fallen more in love with this type of music and it holds some amazing stories and love and romance. A lot of people don't know about my certain types of music choices and some may laugh but answer me this

I bet you know the words to this song called

O sole mio from 1898 what is it?? Well someone eventually re wrote it to become the cornetto song and I bet we can all sing that aye

And I still listen to classic music to relax too there's just something I love about it

Oh and by the way my favourite songs are many but to pick a few I love

Ava Maria

O sole mio

Experience by ludovico einuadi

 And my big favourite

Con te partire by Andrea bocelli

Do I worry about the future?

Yes of course I do who doesn't, except I'm not worried about what the future holds for me as such I'm more worried about how people will cope with my future as my health inevitably gets worse and how they haven't excepted it as much as I already have or don't understand it yet which isn't there fault learn sing about cf and how to live with it takes time it always will and some people are just to young to even begin to understand it yet. I'm more worried about who I will leave behind

What about my future plans with cf?

Well you can never plan with cf as such but I have my future work plans prepared, my paperwork is done but most of all I am really hoping to become more involved with cf charity work and cf research like I want to take part in more trials because it's been great fun being on gene therapy trials I've learnt a lot about it and more importantly I've learnt a lot about myself. And I've always been willing to risk myself to help out 

Just think they may find out something that doesn't help me but they learn from it and that helps someone else I don't see it as giving something up I see it as giving something to use for the good no matter what it does to me

Final thought

Am I scared??

I'd be lying if I said I wasn't scared of cf. Not because I'm living scared of it I'm just scared of the things I haven't learn about CF yet and what it holds for me for the future not as in what will happen I just don't like pain haha 

And Death?

Do you know what I'm not going to answer that it wouldn't be fair but I will say that I like to live my life by this saying

The Brightest Star Lives Half as Long

And that's how I like to live by taking in everything because I intend to do and see more in half the time and enjoy every opportunity I get life is for living after all

Why am I writing this blog entry

I just simply wanted to share some thoughts with you 

I hope you enjoyed it

It's January 2014 and it's also my final month of Gene Therapy trials dosing

So firstly happy new year to all that read this blog.

Well where do I start??

Well the last couple months have been a challenge mentally and physically. CF has been trying its best to give me a rough Christmas period but I've kept my head above water JUST but I think I've come out in 2014 okay. I hope my lung function has stayed consistent I hope but I will know more later today as I'm having lung function tests this afternoon I'm excited but nervous and exhausted. Last nights sleep didn't exactly happen, I think I may have nodded off around 4:30am well that's the last time I checked the clock!! 

And I'm noticing changes with my body not related to my lungs or stomach but definitely as a consequence of suffering with cf. My left ankle now constantly locks up and my right knee is always on fire. I'm now depending on ibprofen gel 24/7 and I need the hospital to work out if it's cf directly causing issues or if it's my tablets causing an issue. Either way the pain is becoming worse and my Ankle is a real worry as I've had problems with it previously and it's been operated on twice and still not fixed it. It's worrying me a lot as it feels like it may collapse or break at any moment. This morning it felt like I hit a nerve and my leg collapsed on me resulting on me falling up the stairs, a skill in itself I tell you haha

I've also noticed that I'm always feeling exhausted despite sleeping loads and chest pains are becoming a regular thing. Oh and I've also had the odd heart flutter.

I thought my diabetes could be causing a problem but I've really been nailing that lately and can rule that out as causing a problem

All of this I will have to discuss with my cf team and no doubt have to have tests and scans to see what's wrong and if they can help. My priorities are sort the exhaustion out and get my ankle figured out.

Chest wise it's been a struggle but lots of autogenic drainage pulmozyme and antibiotics have cleared something nasty that I had over Christmas and during December, I'm not sure it's killed it yet but it's doing something positive.

Like I mentioned earlier I have been having another go at getting more understanding of my body and diabetes and in short I think I've got a better plan to cope with it and control it better which I know is very important to help keep my chest healthier. 

And last but very much not least.

Next week I will be inhaling my final dose on the gene therapy trials. I still don't know what is going on in terms of what I'm inhaling but it's been a privilege to have been apart of the trials.

I'm excited to finish it but will be sad to finish and know that I will soon have to say goodbye to the trial team. They are an amazing bunch of people and it's been great getting to work with them and know them I will be sad to leave for the final time.

Mind you it's not all completely over just yet

I have 3 more visits after final dose to finalise the research and the most important bit of all??? 

Well my final visit for my last bronchoscopy. I'm not looking forward to that bit mainly because I know how awful I will feel after and it takes a few days to get over the effects of it but more worrying is the day after the bronchoscopy I'm due to jet off for a stag do. 

Hhhmmm,, scared??? yes

Stupid???? I always am

Determined??? Of course I am

I will of course keep you updated

I will also write a final trial blog when I know everything that happened and will let you all know what really happened ;-)

I'm off now time to get poked and stabbed by nurses and doctors 

oh and finally and the best news of all.

id like to announce that I asked my girlfriend to marry me over the christmas period and she said YES :-) 

and now we must plan the whole thing :-) 

Thanks for reading