Living with Cystic Fibrosis

For part of my tribunal evidence my social worker asked me to write about living with Cystic fibrosis. 

It’s a strange question I’ve never really thought about before. Of course i thought about what living with Cystic fibrosis entails with regards to treatment but not about what it’s like mentally and deep down. It’s only when I started thinking about it, I came to realise more than ever, it’s a wonder were aren’t all insane. We put up and go through a lot more than than people see, even those who are closest to us. 

To start with how do you describe CF to somebody new, how do you describe CF to yourself. I know personally what I tell people CF is, is not exactly what I know CF to be. I have tendancy to sugar coat what CF actually is and what it involves, I don’t know if this is subconsciously so I don’t get loads more questions and sympathy. I’m not after sympathy. 

Of course people can see some of the physical symptoms of CF: the coughing, the breathlessness, the fatigue. But a lot of CF they don’t see. They don’t see the endless list of medication that we can ream of by heart even the long pharmaceutical names, along with the dosage. They don’t the list of specialists we can name, some they didn’t know existed. The constant need to eat even though we have no appetite, but we all get the comments. ‘you eat like a horse, how come you’re so thin’ and the classic ‘I wish I could eat like you and not gain weight’. I’m pretty sure they wouldn’t want that if they knew the rest. The panic if you forget your creon and the daunting prospect of tomorrow’s mahoosive cleaning job that awaits in the bathroom. They may see the breathlessness and fatigue but they don’t see the inhalers and nebulisers that we use beforehand just to get us to that level and just someone able to get out of bed. 

Along with the physical delights CF brings, mentally it can be more challenging. I’ve learnt this more these past 12 months. I was always outgoing and would talk to anyone. Being a waiter, this was always handy.  In May 2016, I had my first major lung bleed, just happened to be at work and turned Gate 29 of Manchester Airport into a scene reminiscent of The Walking Dead. Since this incident my outgoingness has virtually vanished. My anxiety levels are scoring high, I struggle to go out on my own, and it takes a lot to drag myself to work. I cant really explain why this happened, I’ve always had issues with the way I look but it’s never bother me to this extent before. My arms are thin and I may come across as underweight but why should I let that bother me, what other people think. I know I’m slightly underweight but I’m not really thin. 

Coughing in public is an issue, I’m sure when I’m hacking my guts up round Tesco people think I’m contagious. I always get the sympathy looks or the disgusted looks! I also get the ‘helpful’ advice from concerned passersby….’you should give up smoking!’. ‘You should see a dr’…you want to say things sarcastically but you always hold your tongue. People are just trying to be helpful! 

Children is the next issue, being gay chances of having my own children was going to be rare. But having CF made that issue a bit redundant, most people with CF are infertile. Adoption is always an option and one me and Wes have spoken about. I have always said ‘I don’t​ want kids’ this seems harsh, but in reality I would love to adopt but I always think to myself, is it fair to adopt when I have so many health problems, is it fair to adopt when I don’t know what’s going to happen with my CF, in 10 years I could either be looking at a lung transplant or worse be dead. Is that fair on the child, adopting then one of their dads is always in hospital or worse! 

Even though everyday can be an uphill struggle, life can also be good. Without CF, I probably wouldn’t have met some of the amazing people I have. I wouldn’t have met 2 of my best friends. Facebook and Twitter become a brilliant support network. 

So life with CF on the whole is pretty shit!! But I’ve always tried to live positively and just get on with whatever it has thrown at me!! It’s all you can do really!!! 

Hospital 15/03/17

Hospital appointments are one thing I’ve come to dread recently. The last 12 months or so, they have become the very pain of existence. Usually because I’m reminded of how bad things can get. Luckily the last few visits, everything has been pretty stable, lost a couple of grams, here and there. Lung Function not what I want it to be, but under the circumstances. I can’t really complain.

I-neb, the device to help me get antibiotics into my lungs quicker. A device that to all intents and purposes should make life easier. Well, that’s if it works as it should…Mines on the blink. It keeps beeping at me and telling me it’s not level when clearly it is, so a phonecall to Phillips is needed. Luckily I don’t need it for a month so it’s all good. Back on TIP, another inhaled antibiotic that is a powder and takes like icing sugar but is incredibly quick and simple…just like me!

Hospital appointment scheduled for 3pm, so I finish work, go to Tesco’s for some lunch and head off to hospital to sit in the car and enjoy my gammon joint and 3 mousses I’ve just bought….Ah bugger I’ve no cutlery, luckily I’m at the hospital so I nip to the cafe to requisite a plastic spoon, knife and fork. On my way back I am accosted by a Dr from clinic, and he said I could be seen early save me hanging about. So I follow him upstairs and I’m booked in, albeit stealing a room 2 hours early. Hopefully it would be a quick clinic and therefore no real problem to the timing of the rest of clinic. Clinic went as expected and I’ve got some extra oral antibiotics to give me a boost.

New appointment made, off to the car. I get to the car and unfortunately I had left my mousses on the front seat with the idea of eating them at 1pm not 3pm as it was now. Yesterday was a warmish day for March and the sun through the window had turned my mousses to liquid and made them rather less appetising than the had once been. So I gave up and binned them, so the good fortune of an early clinic actually cost me £2 in mousses!! I think I would have preferred the mousses!!

So today’s top tip, if you buy mousses always hid them out of the sun as you never know when you maybe accosted!

7 Months is a long time!!

7 months is a seriously long time!

After news of the DLA/PIP change, I had been thinking I had been lucky, it had missed me so far…how wrong I was.

28th July 2016, the day had been fantastic, this was the day of my brother’s wedding to my now sister in law, lots of good times, good food and drink. It’s the early hours of the 29th July and I get home to the dreaded brown envelope behind the door. After opening it, my heart sank, I rang my other half and then my mum. This is where the dread and the next 7 months of stress started and it’s not over yet.  I have decided to write about my experience and how emotionally and physically draining, it has been.

The first step on this horrible journey is a phone call the DWP for a little phone interview of sorts. Now, anyone who has had to phone the DWP for anything, knows how irritating it can be. You dial the number and then are given what seems like a million options.

‘Press1, for enquiries. Press 2 for new claims, press 3 to be put on hold while someone finishes their pasty. All calls will be recorded for training and our amusement!’

Then despite what option you press you are still put on hold with the hold music more irritating than Amy Childs’ on helium! After what seems like 2 ice ages and the song being repeated a thousand times, you ended up humming it for the rest of the day! Someone finally answers and then proceeds to ask you questions for ‘security’:

Name? I’m good with that one!

Date of Birth? Think this one I can just about manage!

Are you ringing about yourself?? No, I’m ringing about Cilla bloody Black!

The date of Henry VIII’s 5th wife 40th birthday?!?!?!?!? WTF!!!!

After you’ve answered enough security questions, that you should be in line to be the next James Bond, they finally get on to the important part of the phone call, even though you’ve been on the phone for the best part of three days. They start asking questions about yourself (again) just in case your name has changed in the last 2 minutes, or you’ve decided to become 2 or 3 years older. (You know for shits and giggles, which are all good fun until someone giggles and shits!)

After another 3 days on the phone and enough information they could actually become you and start living your life. They say,

‘Well, I’m going to send a form that needs to be filled in with how your disability affects your daily life’

Which makes you wonder what the bloody hell you’ve been doing on the phone for the last 2 hours, what were they typing, the entire works of Shakespeare, a new ground breaking theory of the evolution on man, because it certainly wasn’t what I’ve been telling them if I have to fill in a bloody form with the exact same information!

Finally, I can put the phone down and not a moment too soon as my ear is about to set aflame, and my head is now radioactive, it’s been stuck against the mobile for so long (and before anyone says ‘use the landline’ I don’t have one smart arse!)


The dreaded form arrives and it’s the size of a novel! After reading it, you need a sit down and a cup of tea (or something stronger) I’m sorry but this is where the blog gets serious.

After reading the questions in the form, it all becomes very real and you start to think about the way your disability affects you in ways you would never think because you just get on with it.

The first thing I did was make a phone call to my social worker and she said she would help me to fill the forms in to give me the best chance of getting the money I feel I deserve.

This is where the stress and worry begin. You hear stories on the news of people with severe disabilities being turned down and having to appeal, but I put this to the back of my mind and focussed on telling the truth and hopefully getting justice as it were.

A meeting with my social worker was set and I began thinking about the answers to the questions. I didn’t like to think about this too much, it began to make me very emotional and I found so things very difficult. Meeting with my social worker, I thought would have been a half hour job, boy was I wrong. 3 hours later and we had filled in the forms. I was emotionally drained, at parts I was in tears, it made me realise no matter how much I just carry on day to day, actually I am really ill and can’t do everything I want to do and my Cystic Fibrosis does somewhat rule what I do and it affects me more than I thought! After drying my tears, it was off to collect my brother and sister in law from the airport, I must have looked a mess! Although thankfully my brother gave me a step by step commentary as they got off the plane!

‘Just saying bye to the lady’

Just saying bye to the man’

Picture after picture of the airport (68 in all) …. I wouldn’t have minded but I work at the same bloody airport!

Anyway, this did take my mind off what I had just filled in!

The forms were sent by my social worker with a letter of support. This was the last I heard from the DWP until I got a mandatory reconsideration letter in November.  I hear you say, but what about a decision letter or an assessment date?? Well I never received these despites me being told they were sent. Which in the end turned out to be a lie as I was told a number of times by different people from the DWP eventually in December after many phones calls and so many security questions, I should now be running MI5 or in fact be The Queen!

Apparently, I should have attended an assessment, however the appointment never arrived, the first I heard about this was when I phoned the DWP in November after I got a letter from Motability telling me my car needed to go back! The first words that entered my head where ‘What the actual Fuck?’ I had no idea this was coming and it really knocked me for six. Straight on the phone with the DWP and more security questions, only to be told by some bolshie woman on the other end that I had missed an assessment and ignored phone calls. I tried to explain that I hadn’t received any of this stuff but I could tell in her voice she didn’t believe me, I didn’t really care what she thought I knew I was telling the truth. She said she would pass it on to a case manager and she would put me through…then a dead line, she had cut me off!! Back on the phone to a different woman this time who was more sympathetic and checked that it had been passed on to a case manager, this was the first person to tell me a decision letter had never been sent. She also said that she would get on to the decision people and get one sent out that day. This also never happened.

This letter obviously started me worrying about losing my money and my car. The DWP were so insensitive. I phoned them many times. They treated the fact I rang about not receiving an appointment as I wanted a mandatory reconsideration. I received this letter in November. Still no original decision letter. 2nd of December and I had to give my car back.  How was I going to manage with no car and still having to get to work? Luckily my amazing mother in law lent me the money to get a new car of my own (my first car technically, that was mine) so car bought and insurance paid and tax paid, I was ready to go.

Next I got a letter from HMRC about my working tax credits, and surprise surprise, they are going to stop as well and not only that I now owe them £800 in overpayment due to this error by the DWP.

December 31st is my last payment of working tax credit. Now I was on my own no help apart from my wages. £92 a week is a lot of money to lose but I was determined to carry on and not let them win. I managed this successfully for about 2 weeks. Money was slowly running out and bills were stacking up.  Not only that trying to keep a high calorie, high fat diet is not easier without money, 5000 calories amount to quite a bit of money a week. I knew my health was suffering and my weight was dropping but there was very little I could do about it. I have suffered from depression on and off for years and I have severe anxiety. My losing weight and added cough, meant my anxiety was returning with full force. It’s hard to describe, I don’t have acrophobia, I love the outdoors, but I don’t like meeting people, it fills me with dread. Imagine you are standing in a room full of people, some people love being centre of attention, others shy in to the background. Me, I just don’t want to be there, I start to panic, what if I have a coughing fit? What will people think of me being so thin Will they think I’m anorexic? Will they ask questions?

All these questions go through my head, usually before I go anywhere, this can be either to a party with my partner, going seeing my granny with my mum or even just going to Morrison’s with my partner to do a shop. I even get these thoughts when going to work. Gong to work is very difficult. I have panic attacks quite frequently. It takes a lot for me to go to work, I have panic attacks on the way to work, which isn’t great while driving. I have to get to work and then do some deep breathing and think that if I don’t go to work, then I’m letting them win and I won’t have the money and it will make things worse.

Over the last few months, I have become a bit of a recluse and I only go out if I’m with my mum or my partner and they have to coax me otherwise I would just sit in and play The Sims and watch TV and sleep.  I don’t meet with my friends if we do make plans, I cancel them because I just can’t face people. This anxiety also stems to social media, I don’t talk to my CF friends on social media s much anymore, I won’t send the first message, I feel like I am bugging them, this is also the same for texting my partner, He is the best thing that has ever happened to me and in February 2017, he agreed to become my husband. Even though this has happened, I still worry about texting him while he is at work or not with me as I feel I am annoying him and stopping him working. I know deep down he doesn’t mind but I still refrain from sending texts sometimes. I know all this sounds stupid but to me it makes perfect sense.

Since my money has stopped I have been living on my wages and struggling with money to a massive extent, i.e. having to take a day’s holiday from work because I didn’t have the petrol money to get to work, and living without gas and a phone for 5 days because you have no money to top them up.  This seems silly and as a 27-year-old ‘adult’ I should be able to budget, but budgeting is incredibly hard when there is hardly anything to budget. These things have hit me hard with my depression, most days recently I have just feltlike staying in bed and not wanting to face the world. In my bed, I feel safe and I don’t need gas or a phone or petrol. I can stay in bed and be fine! My health has taken a hit this year and I’m surprised I’ve managed to stay out of hospital which is a bonus. Maybe hospital would have been handy as it would have eased the money worries, but would it, no wages for 2 weeks but nothing to spend out either.

Being totally honest, my depression has hit severe lows during the last few months, to the point I have thought would it not be easier to drive off Barton Bridge or off the moors and just end it all! It seems like the only option sometimes but I stop myself because with my mum and my fiancé I have too much to live for! I won’t let the bastards at the DWP win!! Depression is a horrible condition, it consumes your every waking thought and is very difficult to shake. There were days I just wanted to give up and not go to work and stay in bed! If it wasn’t for the fantastic support from my family, I can certainly say I wouldn’t be here to tell this story. I think the depression would have taken over and I would have lost complete control.

I have finally had my assessment which was just as difficult as filling out the forms, they ask exactly the same questions in the assessment as is written on the forms, I know this is to clarify what has been put but it is still horrible. My anxiety was focused on more than anything and she asked about suicide. This was difficult to answer, I have never really spoken about it in a serious way, especially in front of my fiancé, I think it was hard for him to hear that I had thought about it. It is emotionally draining and after I had it done, I just wanted to go to bed and cry, maybe this was relief that after 6 months of shite, it is nearly over…Fingers Crossed, hopefully I am awarded something and don’t have to go to tribunal.

I have written this not for sympathy but to show the impact things like this can have on a person.




Chapter 2 – Internal Hardships

The sun was shining brightly through his bedroom window and, He could hear the birds singing in the trees. Jed woke up remembering his first day at school and especially Aiden, he couldn’t remember the last time he had gotten on so well with somebody. Jed felt differently this morning, his chest didn’t feel right. He hadn’t felt this before, his chest felt tight, as if a sumo wrestler was sat on his chest. He had heard about people with CF feeling like this but never thought anything of it. After a few minutes, his chest felt normal again.
            Jed had always counted himself lucky with regards to his CF, a lot of this was attributed to his mum, Ruth. She made sure he took his tablets and made sure he was always well. He had heard of other people going into hospital and being very unwell but he had never had any of this, he had only been in hospital when he was a baby or to have surgery on his nose. He always had a sense of immense relief and a feeling of unreturnable gratitude towards his mum, he could never thank her enough for keeping him so well.
             After his chest had returned to normal, Jed went down to breakfast, he didn’t mention his chest to his mum, not wanting to worry her, after all she had his little brother and sister to worry about and look after, she didn’t need bothering with this small complaint that had disappeared. As usual, Ruth had all Jed’s tablets out ready for him. Antibiotics, vitamins, salt tablets. Each helping  a different part of CF, each as annoying to take as the rest. Jed just did it, it was routine. Ruth had decided that it was time he took over control of his medication and treatment, he wasn’t going to be a child for ever, he was growing up. This was to be a on going thing and done over a period of time.
           After gulping down Orange juice and scoffing some coco pops, and taking his creon, Jed never understood creon, he had always been told that if you don’t take creon you will get unbearable stomach ache, this however had never happened to him. As a treat on his birthday and Christmas, Jed was allowed to go all day without taking his creon, with this Jed ate as much as humanly possible to take advantage of the no creon rule. Even with this he had never suffered stomach aches, so creon never really appealed to Jed and he only took them because he felt he had to and they told him to.
      Jed ran out the door to school, hoping today would be as good as yesterday. He still had this niggling issue of why his chest hurt this morning, it had frightened him a little, maybe his CF was taking a turn for the worse. He thought of nothing else all the way to school. After arriving at school, he saw Aiden, because Aiden didn’t know about his CF obviously Jed didn’t  mention his chest, but was  just very quiet, deep in thought. This consumed his thoughts for the entire day. He hardly said two words to Aiden. He must of thought he was a ignorant friend. The school day came to and end and Jed just slowly trudged home, his mind still fixated on his chest. Nothing had ever worried him about his CF before. Hopefully a good sleep would put his mind at rest.

Chapter 1 – Internal Hardships

Beep, beep! Beep, beep!
It was very unusual for Jed to be awake before his alarm went off, however today was a special day. Today was his first day of secondary school. His uniform was hung neatly ironed on a hanger on the back of his door and his school bag had been ready for three days at the bottom of the stairs. He was sitting nervously eating his breakfast, wondering what the day would have in store. However, before Jed could leave for school, he had to deal with the biggest thing in his life, his medication. Jed suffers from Cystic Fibrosis and it means a lot of time with treatment, and now he was starting secondary school, Jed’s mum Ruth decided he should take over the responsibility of his medication and treatment.
It was time for him to leave for school, he was meeting his best friend from Primary school, Louise. Jed and Louise had been friends since reception class and she knew everything about Jed and vice versa. She knew the one thing that Jed wanted to keep quiet and that was the fact he had Cystic Fibrosis, this hadn’t been a problem in primary school, everyone knew and it wasn’t a problem, Jed took tablets with his lunch and no one batted an eyelid, but Jed had a feeling that the same couldn’t be said for secondary school. As they neared the school, they both had butterflies in their stomachs, what would the teachers be like. In primary school, they had never had any male teachers so that was going to be a big change and one of the many things they would have to get used to.
They had finally arrived at school and it was much bigger than the primary school they had come from. However they were relishing the new challenge that was facing them. They were hurriedly ushered I to the hall and sat in the forms, luckily for Jed and Louise they were in the same form. They sat in the hall and Jed sat next to a boy called Aiden. Aiden wasn’t from Manchester, he had just moved up from London, his dad had to move for work. He seemed friendly enough and he and Jed chatted, Louise was chatting to a girl who had just sat next to her. Just as Jed and Aiden were chatting loudly, a hush descended over the pupils as the headmaster took to the stage. The headmaster’s speech seemed to go on forever, he was going on about, what the school expects from them and what they can expect  from the school.
After what seemed like an age, the headmaster finished and the pupils left the hall and went to their form rooms. Jed and Aiden sat together in the form room, and spent the rest of the day getting to know each other. Aiden was much more open than Jed about his life in London, and the fact his mother had left them when he was just 5 and he hadn’t seen her since. Jed on the other hand was keeping rather quiet about the biggest thing in his life, his Cystic Fibrosis, he didn’t want to frighten Aiden off. As the day went on Jed and Aiden got on like a house on fire. The day came to an end, Jed met Louise and they started walking home. They chatted about their different days, Jed wouldn’t shut up about Aiden, he hoped Aiden was saying the same about Jed. He had never had a male best friend before, this was a good feeling for Jed and he couldn’t wait school tomorrow.

Blogging beginnings

I am going to use this blog to share my experiences and also I am writing a story in sections, so will post each chapter as I write it. I love food, sport, my job. I have Cystic Fibrosis and don’t let it get to me!
Please bear  with me as I get started!!

Andy x