Me and Tommy

A photo purely to see if I could figure out how to upload pics....Ta dah :)

Cf - 'Sufferer' ??

Collins English Dictionary defines the word suffer in this way.. 

Verb:

To undergo or be subjected to (pain, punishment, etc) 

To undergo or experience (anything) ⇒ to suffer a change of management 

To be set at a disadvantage ⇒ this author suffers in translation

To be prepared to endure (pain, death, etc) 

 As a sufferer of Cystic Fibrosis I find myself looking towards the meaning of the word, and its negativity. 

"Be subjected to pain or death" 

Death in all of us is inevitable, it's the one thing we can guarantee in life. But should death mean making old age in a painless way. 

 Everyone at some point will most likely suffer from something, illness, heartache, depression but most of these are short term, something the mind and body can overcome with help, encouragement and possibly medication. 

So I ask my self if suffering is actually the correct word for a long term illness. True you will suffer in ways most healthy people wouldn't but on balance I feel sick people actually have a healthier outlook on life, a passion, a yearning to better themselves and do things they were told they never could.

 The illness itself seems to be much less dramatic to the sufferer than it is to their piers, as its there life, it's day to day living which seems so normal, no matter how abnormal it actually is. 

 I realised recently that the life i deal with everyday may in fact be viewed as abnormal. I was arranging a weekend away with my partner. Of course we went through the rigmarole of choosing a destination, the hotel, any extras we wanted to include in our booking. For most this would have been the end of it, a weekend in the Cotswolds booked, done and dusted, but then the abnormality part of my break kicked in. 

 I had 2 nights and 3 days away from home, I would have to ensure I filled my medication case precisely so nothing was missed. 

 140 tablets packed in their separate containers, 20 each morning, 10 each night and a further 30 during the course of each day. 

Two inhalers. 

 Two separate nebuliser compressors for 3 different inhaled medications, as well as a cool bag to keep them at the correct temperature. 

Insulin pen, blood glucose monitor, testing strips, needles and a good supply of glucose tablets

 Nasal spray and gel. 

Portable oxygen cylinder, the mains charger, the in car charger, the back up oxygen cylinder should the first one fail, along with different masks/nasal cannula for each cylinder.

 A jab containing adrenalin should i have an allergic reaction. 

My prescription slip and a letter from my healthcare team should I need to be admitted to hospital if I get acutely unwell and need to be admitted to a hospital when I'm there. 

 My wheelchair I'm not even sure if that's all of it as I don't have my usual checklist to hand. 

That was just the packing. Before all of that could actually happen I had to ensure my chest was in optimum condition so I had to arrange a course of antibiotics to last 2 weeks prior to my breakaway to ensure any bugs that may have been brewing in my chest were killed off so there was less chance of a flare up whilst I was away. 

Our English dictionary defines 'suffer' to be set at a disadvantage. In many ways I know, and can accept that I am at a disadvantage, yet it somehow feels so normal.

Another definition is to endure pain, which I feel is the more relevant definition in association with Cystic Fibrosis, I have wrote in detail before how the pain of CF can be so debilitating and unlike any other pain I have known, it's a tormenting mental pain as well as a physical pain

What does suffer mean to the majority, a question I often find myself asking.....

Great Things

If you cannot do great things, do small things in a great way - Napoleon Hill

 As an author of literature, I feel Napoleons words, in some way, should be recognised as insightful and true.

I know I will never, in my eyes, do great things, so I do strive to do small things well. But do people's opinion of great things differ in many ways?

 Making old age I won't, that great thing is unachievable, but the small things I do along the way I hope are great. 

The love I show for my friends and family are great, as is my gratitude for their care.

 The respect I show for my healthcare team is great. 

But I fear my life achievements are not in there selves great. I know many things I'd like to do are limited, my high flying career as a doctor unfortunately will never happen, I would pose to much of an infection risk to patients, as they would me. 

 Travelling through Europe, isn't what I would call an impossibility, but the sheer spontaneity of my illness would make it extremely difficult, not to mention the cost of insurance as an oxygen user. 

 Having children, again not an impossibility but before transplantation of my lungs would be unbelievably reckless and irresponsible, not to mention selfish, as my longing to be a parent could possibly leave a young baby and and boyfriend without me.

 These are what I call 'great things' achievements....normality.

 I'm very optimistic that I will find a donor when my time comes, and even more optimistic that I will recover well. I am also realistic, so would not go in to this procedure not knowing the risks and difficulty of it, mentally and physically, but without optimism, without hope, where would we be.

 Untill I'm post transplant I know I need to keep my plans on the back burner and concentrate on the now....the smaller things.... Maintaining my current health of 32% lung function, by continuing with hospital admissions, the medications, inhalers, nebulisers, increased calorie intake, oxygen & physio. A small price to pay for health and happiness.

I feel I have a great life, I have my home, my friends, family & partner. I'm very lucky to have the support network that i do, which I know many people don't, I have never gone without things (other than a little oxygen and lung function) ;)

But I am happy, more than happy. I feel lucky and appreciated and most of all loved.

Maybe all these small things, are infact, some of life's greatest things. 

Maybe great is just how you perceive it?.......

vanity vs health

Day 16, in the NHS House *said in big brother voice*

So as most people will know, following my previous post i was admitted in to hospital..no shock there.
Its been rough going, this blog may sound like a lot of waffle but i will try to update you as best i can:

Thankfully i made it to my friends wedding, which was the reason i was putting of coming in to hospital, im so glad i got to go it was a beautiful ceremony and the bride looked stunning, as expected i struggled, but did not want to miss it, i survived the day on painkillers and hot cups of tea. Lots of people were looking at me strangely must have been wondering why a young girl was cradling pots of tea when there was an open bar, but i was just glad i was there :)
When i got home that friday night i felt like my lungs had been torn in half i hobbled up to bed and went to sleep in an instant.

When i woke Saturday morning the pain in my lungs was excruciating, i could only lay with a pillow under my left side, i was arched over the pillow with my legs drawn in tight, i couldn't move my breathing was very shallow. I got martin to ring my mum as i always want mum or dad when im ill, such a kid lol,when she got there she put her foot down and demanded i rung the hospital but i was adamant i wouldn't be admitted at the weekend as there is limited staff. She called anyway and spoke to the on call doctor he wasn't to sure what to do so phoned my consultant who said bring her up straight away. With limited movement getting up and packing a bag was difficult. My dad drove me to the hospital and wheeled me up to the ward where the doctor was already waiting. He immediately done my observations. My heart rate was 142 my oxygen levels 88, temperature was 38.4
I got straight in bed to rest and was started on 4 liters of oxygen which quite quickly took my o2 levels up to 92.
2 Intravenous Antibiotics were started and 1 Antibiotic nebuliser was given. Lots of blood was taken for cultures to figure out infection levels and to see why i was spiking such high temps.
I cant really tell you of much that happened until the Tuesday as i slept day and night, waking briefly to see the family.
From the start of this infection i hadn't eaten so my weight dropped from a reasonably acceptable 7 stone 9 to a very unacceptable 6 stone 2. All of the team were very worried that they hadn't seen one piece of food or drink pass my lips in days, even the catering staff seemed concerned as i would usually order quite a lot of food but the thought of having to eat turned my stomach i just felt to poorly.

When i met with my team on the Monday my Dr, Dr Kuitert assured me she would get me feeling better so i put my trust in her and her knowledge and slept for a further five days why the nursing staff administered all i needed

Jumping forward a week to the following Thursday i again met with Dr kuitert. with just over a week and no improvement, still just blowing 30% lung function and o2 sitting stubborn at 92 but now on 2 liters of oxygen she decided to add in a 4th antibiotic started to try to bring the temperature down and with my infection levels in my blood sky high they knew lots of help was needed.
 I was also started on a drug called Megace. Megace is traditionally used to treat women with breast or cervical cancer but a side effect of it is increased appetite and weight gain so it is used in CF when all else doesn't seem to be working. My tube feeding regime was also increased by 1500 a day. I had a meeting with the psychologist and dietician who both agreed was as much mental as it is physical. They explained to me that i had gone so long not eating my stomach had shrunk to the size of a walnut. Also the brain somehow switches of its receptors to hunger as it forget what it feels like, so i never actually felt the need for food. If i did eat i felt sick and full so quickly so in turn ate even less, bit of a circle really.
In todays ward round the option of a PEG was offered to me. This is a small tube that goes directly into the stomach with a kind of cap that you can open and close to connect the feed to. The tube is surgically inserted by making a hole in the skin through to the muscle and stomach lining where it then sits in the stomach. It eliminates the need for an NG tube which is a temporary tube that is placed up the nose, down the throat and in to the stomach. The difference being that it is a more permanent measure and much less uncomfortable than having to pass a tube down every night. The Peg does come with its own problems, the main one being that the cap is visible on the belly, its like a plastic lid so can be seen if wearing tight clothing or going swimming etc which i love to do. Its something i need to think about, its a case of vanity over health which unfortunately is the case for many CF patients, especially women. 

Im going to leave this blog there, im having a bit of writers blog and am finding it hard to piece things together especially as i keep being disturbed
Hope i wasn't to boring :)

What cant be cured, must be endured

If pain is invisible, how do people around you know you are in pain?
Is it mearly the words spoken of the pain?
Or if there are visible signs, I.E a bruise, a broken limb or blood does it become automatically assumed that the person is in pain?
What happens when the pain is not visible in such a way to the human eye?
The pain is inside, while outside you look painfree?
Do people understand and see the invisible pain as real as they would blood....or do they infact feel more sympathy for this invisible pain as they have only their imagination to guide them?

For 2 days i have been in pain,
For 2 days i have been in bed,
For 2 days i have cried.
My lungs simply feel like they are not functioning. My diaphragm feels bruised and swollen, parts of my lungs are sticking together restricting air flow, it hurts to breathe in, to breath out, to talk, to cough, to sneeze, to laugh!


'One pain is lessened by another's anguish' - William Shakespeare

   

If Anguish is a sense of pain how do we feel it?
I felt it yesterday when my mum and sister refused to let me sit in bed any longer, they understood my pain but knew i needed fresh air so helped me downstairs to sit in the garden to get some sun on my face.
Through the tears of my physical pain i could see my sisters tears of mental pain.
She could see pain through my tears as i sat and spoke through gasping breaths, just as i could see pain through her tears as she helped me to get comfortable on my chair.

Can pain be any more bearable if mental as apposed to physical?
She knew there was nothing she could do to help me and the frustration at that made her cry, just as i was crying out of frustration of not being able to stop her cry.
Can any pain be lessened by anothers anguish?

'The great art of life is sensation, to feel that we exist, even in pain' - Lord Byron

If pain is a feeling, is it a feeling we would rather do without? or is pain indeed what makes us know we are living.
Is it as essential in life as the air we breathe?
Do we need the sensation of pain to feel the sensation of living, is living pain?

Pain comes in all ways, none of which i feel outway another, each are as hard as the other, physical or mental, but i do wonder how much pain one body can go through physically before they are mentally pained.

Am i justified in my mental anguish when the physicality of pain is so exaggerated?
Does the invisibility of my illness make it less real to the human eye?

What cant be cured must be endured, will time and patience will make them easier?


 

Eating Eating Eating

I thought i would write a blog about my weight issues as i have been moaning about it for a while

I often get asked ''why do you want to gain weight''
I think in an ever growing society of people who want to be a size zero and with anorexic websites becoming normal surfing for this generations teens, to find someone who actually wants to be bigger than they are is actually bit of a shock to the system for most.
But in truth you will find that most people with CF will be fighting just as hard as most with their diets, only not to cut out the calories but to add them in their food in as many ways as possible.
'CF Tummies' do work work as 'the norm' do. We suffer with malnutrition and extreme weight loss. We are unable to absorb the fat from food due to our pancreas not being able to release the enzyme in which to do so. Every meal and snack has to be supplemented with up to 40 pills which is an artificial version of the pancreas enzymes. The enzyme in the tablet is actually extracted from a pigs pancreas as it is the closest version of our own..sounds lovely...right?!

Even with our 'piggy pills' its still impossible to absorb all the fat, so to counteract this we simply have to eat!...and eat and eat and eat. 3000-4000 calories per day is needed to maintain a healthy weight, it can be even more when you are trying to gain.
So why the constant emphasis on food, well put in laymens terms, everything you do requires calories, walking talking, even breathing.
Our lungs have to work a hell of a lot harder than the average to function and our hearts have to pump faster just to 'breath' so with our lungs using more than the average calories a day, you can see why more calories are needed...to supplement our lungs needs

When infections are rife they love the calories too! If a healthy weight can be maintained whilst well it will mean when an infection rears its ugly head you will have more reserve to fight it with, instead of it taking every ounce of energy you have putting your weight lower and lower...its a constant cycle!
The iller you get the more your weight can suffer so 'feeding' is often used.
This is a small tube that goes up the nose, down the throat and in to the stomach. Although slightly uncomfortable to place the tube its not painful, and is much easier if you are able to do it yourself which thankfully i am, it takes less than a minute to do now, where as it took 10-15 minutes when i first started doing them as i would gag and be sick all the time...not very pleasent, but im a pro now lol :)
A bag of what looks like milkshake is hung up and fed through a pump which releases the feed in to your stomach over an 8 hour period whilst you sleep. The feed i have is 2500 calories. It takes the pressure off of having to constantly eat when you are ill especially if you sleep a lot.

I can go 3-4 days eating nothing, just survivng on  cups of tea with sugar, ill only then start to get hunger pains and ill have a food binge and eat everything in sight, it wouldn't surprise me if i ate all those days missed calories in one sitting of junk food.
I have an unhealthy attitude towards food i know that, I see food as essential treatment, not a pleasure or something i enjoy, maybe as there is always so much emphasis on how much you eat and it is spoken about as much as any other part of my treatment the pleasure of it has been taken away, it can get stressful when im being told im to thin, i must eat more. I do know that and im not happy with the way i look i hate my hip bones sticking out and my spine being prominent but to fit so much fat in to your diet is hard work on top of all the daily treatment i do. As my health has declined my weight has to, it kind of goes hand in hand. When i was weller i loved food i ate all the time, loved cooking and trying out new recipes, eating out with friends, 3 course meals most days but now i actually find it hard to eat as being to full crushes my lungs and makes it even harder to breath, again another cycle!

My current weight is 45kg Im 5'2 so that makes my BMI 18.1
Ideally my BMI should be 23 so i have a way to go yet....

 

Through a mothers eyes...

So as the title suggests this post is through my mums eyes..what follows is a poem she wrote a few days after i was diagnosed so almost 25 years ago, she has kept this aging piece of paper in a folder locked away...untill now

My Prayer!

Oh god in heaven, what am i to do?

Please! dont take my baby, im begging of you

Save her the suffering and pain ahead

Leave her alone, take me instead

Kerry my darlin' whats happening to you

God name your price I'll bargain with you

If you really are out there, prove it to me

stop all this pain and misery

How can you allow her to suffer this way

Only to take her away some day

From me her mother, her next of kin

What did i do? did i sin?

If you feel i should suffer in some way

Then fair enough i will pay

But not like this, thats not right

To make me face the unbeatable fight

The daily treatment, the drugs the tests

The constant worry the lack of rest

Its all to hard for us to bear

prove to me you really care

Find  a treatment, make it alright

Tell me a cure is in sight

Im sorry if asking for help is wrong

but if your going to help, don't leave it to long 

time isn't something we cam spare

Please god in heaven hear my prayer!

Spoken from the heart of a young women diagnosed with a terminally sick child, a women who was younger than i am now when she was told this news, from a women who is my hero, my strength, my mentor, my friend...my mother! <3