Dreams

22/01/2021

Last night’s dream was interesting, I should explain that since Lockdown in March 2020, I have had some pretty weird dreams, I’ll get in to them in another post. Anyway last nights dream was a Dinner party theme. Now, I’ve never hosted a dinner party in my life, but I have watched many many episodes of ‘Come Dine With Me’, so I know the general format, drinks and canapes, starter, main course, desert and then coffee (or tea if you prefer), and also one golden rule of diner parties, make sure the food is edible, and don’t poison anybody, the hallmark of a good dinner party is one where your guests go home of their own accord, and not in an ambulance or worse, a body bag.

Anyway, I digress, so last night (21^st Jan 2021) my dream involved a dinner party as I’ve mentioned, but this dinner party had some very very important guests. None other than The Obamas, yes The Obamas, former President and First Lady, Barack and Michelle Obama, we as you’ve probably guessed, me being from Bolton with my northern accent and them being who they are…American, our paths don’t often cross. Well, never cross, lets be honest, we arent close friends, or even friends, or even acquaintances….in fact we’ve never even met, or even communicated on Twitter….despite my many tagging of her in my tweets, she never responds…which I think is quite rude!

Anyway, so these were our dinner guests, now normally being northern I call Dinner, my Tea, because that’s correct, but for such esteemed guests, I’ll make an exception, well just the once.

So I have nothing prepared, we will be having Champagne (Well, English Sparkling wine….Well its just grape juice and lemonade but don’t say anything! If they will just turn up out the blue, Ive nothing to prepare), I’m panicking in the kitchen what can I make out of a pot noodle, 2 carrots and a tin of Spam! I’m joking, it was 2 pot noodles!

So it is approaching time for starter, I’ve rustled up some Spam Fritters, with a lovely dipping sauce ( well, its tomato ketchup with some garlic and chilli puree in it, they will never know), and chucked a bit of salad on the plate, it looks…nice.

Now, Michelle is dressed as elegantly as you would expect, not many people can pull of Cowboy boots and a Kaftan and make it look elegant, but then again we aren’t all Michelle Obama, Barack is wearing just a plain white t shirt, jacket and jeans, smart, casual but comfy, and why not, better than me in my Homer Simpson onesie, well, this is my pamper night, bath, face pack and Ru Paul’s Drag Race UK, I’m a little more than upset they have disrupted my wild plans, but there we are!

The starter goes down a treat, empty plates all round, don’t think they will have had spam fritters before but they seemed to enjoy it. Main course is a lovely carrot stir fry, I told you, 2 pot noodles,spam and 2 carrots (Shopping day is tomorrow) .I think I’m a culinary genius, I would smash that invention test on Masterchef.

Anyway, I plate up my master piece, its amazing, what you can do with a some Soy Sauce (BBE 2017) and a splash of grape juice! They don’t seem as keen on this, maybe it was the limp carrots, well they were probably past their best, one was a bit brown at the bottom, but I cut that off, some people are so fussy. Ah well, undeterred, I crack on with pudding,well I say pudding…I had some milk and a bit of rice left (after hunting for 20 mins, a open pack was right at the back of the cupboard, it looked alright, it was still white and hadn’t gone soft, rice doesn’t go off right? Anyway, it was tough, so I chucked some milk and rice in a pan, with a bit of sugar, hey presto, Rice Pudding….well not really, it was some stodgy rice with a some hint of sweetness, not my greatest accomplishment, I’ll admit, so we skipped desert and went straight for coffee, at least I had coffee in, Michelle doesn’t drink coffee now apparently, so its lucky I have a few spare teabags in. Michelle has no sugar and a drop of milk in her tea, which I perfect as I’ve no sugar and only dregs of milk, I used the rest in the failed rice pudding. Barack has black coffee, again lucky!

The night is drawing to a close, I have no entertainment planned, as that’s another thing I learned from Come Dine With Me, the best dinner parties have entertainment, as seeing as I can sing as well as a newly castrated cat, karaoke is not an option, so we decide to watch Ru Paul’s Drag Race UK, the evening is not wasted, I’m still in my onesie, I’m not getting changed or no one..comfort darlings, and I still get to watch Ru Paul, I swear if they talk all the way through, they are out the door!

Anyway, I’ll leave it there, oh one last thing, Michelle said I made an amazing cup of tea!!

Covid 19 – Self Isolation Day 1 of 84

Well, the day has come to start my self isolation. 12 weeks of very little physical contact with the outside world! Only the dogs and my own thoughts for company. Of course, Wes will be here at weekends, but will still be working during the week.

I picked my 4 week prescription up from a new pharmacy, not sure I’ll be going there again, I was told it would be ready yesterday after 2pm, so at 4pm, I turn up but nothing ready so I go back today to be told can you wait, it still not ready. I understand pharmacies are extremely busy at the moment but if you say things will be ready, make sure they are. Anyway, I’ve got my prescription but what pissed me off more was the amount they were charging for hand sanitiser….£5.50 for a tiny bottle, should be wearing a mask and striped jumper!!

So on my return home, isolation begins!

What to do…It’s  only an hour in and I’m bored! This is going to be a long 3 months. I decide to do some colouring, something that always asses the time 🙂 treated myself to a couple of  pre-drawn canvasses before lockdown,  so started one of those. A very bright colourful affair, will look lovely on the bedroom wall.

Fortnite, I can see is going to get played quite a bit over the next 12 weeks,for those who are unfamiliar with Fortnite, it is a battle royale style game, you run around a fictitious cartoon like island with a variety of weapons and try  to eliminate other players, last one standing wins. Fortnite, also includes various challenges to keep it fresh so I will keep you all updated on what challenges I have done in each of my daily posts. Today’s challenges included visiting 3 different smaller islands without swimming. So landed near a  speedboat, I commandeer it and speed off to the first island, a plane crash site, a quick check for opponents and weapons, not much so back in the boat  for the second island, a little village of Tiki huts 🙂 another  search for weapons and a ‘legendary’ (the high end of weapon) shotgun appears , i  grab  it  and then speed off to the final island! This island is a little trickier as it is up on  a massive rock, time to get my DIY on and build some steps to reach it, one slip and I hit the water and all my hardwork is undone and would need to start again! Luckily, I manage it and celebrate  by diving off the top of the rock straight into the water 🙂

Lunchtime, pasta with bacon and cheese, a regular lunch for me whatever is happening.

A bit more colouring after lunch, a bit darker this time, some Alchemy Gothic pictures, a bleeding rose, a dragon’s eye amongst a few others. These are my favourite kinds of  pictures to colour.

Plenty of news watched, keeping abreast of the daily updates of Covid 19 and the  ridiculousness of stock piling! however, that is another blog altogether. The best we can do is Thank the NHS staff, teaching staff, social care staff, shop workers. This is  unprecedented times we are in, and we need to stick together.

I will try and write every day so you will probably get bored by day 84!!

 

Man of Steel (Apparently) updated June 2020

This was written in Jan 2018, just thought I’d give an update for CF Week.

Since having my PEG put in, I’ve gained over 3st in weight. I’ve gone from 8st 8lb to 12sg 1lb. My waist size has gone from 28 to 34, an expensive new wardrobe to celebrate. Having my PEG put in and then changed to a button was the best thing I ever did, don’t regret anything. I’m not feeding as much as I did when I started, I’m now feeding on an adhoc basis just to maintain my weight. I’ve now got the task of toning up the fat I’ve put on! I’ve just found a new version of ZOMBIES! Run app… Called Zombies! Stay at Home, done for the current Covid crisis.

These last 2 and a half years have been a rough ride at times. Ive got married and then I started Orkambi, this was also life changing, managed to keep me out of hospital and reduce the number of my ivs. I still have bad days and still struggle on a daily basis but I do manage a little bit better!! I didn’t see an increase in lung function but it has stabalised it.

When I was in hospital in January 2020, the dreaded words Lung Transplant were mentioned. The Dr that had this tough conversation with me is one of my favourtie Dr’s on the Manchester team, she is one of those Dr’s who just gives it to you straight, no beating around the Bush. It was a tough conversation but one that needed to be had, at the moment, they aren’t sending me for assessment but it will be reviewed on a timely basis.

Now we as a CF community are in the fight for Trikafta and hopefully a fight we won’t have to battle for too long!!

People who know me, know I’m not the type of person usually described as a Man of Steel, the closest I come to Superman is putting my glasses on and looking like Clark Kent. However, after my  most  recent operation (Monday 29th Jan 2018), I have been described in many ways and all complimentary. I’m used to being called trouble by the Physio, but I’ve been called the  perfect patient by the nurses and a Man of Steel by the consultant. The reason, my apparently incredibly high pain threshold.  I have had a PEG inserted, this is a feeding tube, this is to in the first instance to put weight back on that I have lost., and secondly to maintain the weight I put on.

This procedure involves,  a camera and a light being passed down my throat into my stomach, my  stomach is then  lit up like a human glowstick 🙂  or as prefer a shaken minion.  A  small incision is made in my  stomach and a tube is passed through using grippers, I have visions of the claw from Toy Story, apparently its not like that, neither is it like Alien, there is no blood and guts spewing everywhere, which to me was a bit of a disappointment. It is then sort of  clamped  to the stomach wall and the outside of my stomach, so the tube cannot move and tract can be formed. In 3 months time, I can change this  tube for whats called a mickey button, this is flush  against the skin rather than a tube.

So, why the nickname Man of Steel, since coming out of surgery yesterday  morning, I have had 2  lots  of paracetamol, apparently this isn’t common, most  people whinge and moan.  I do  keep getting in trouble for doing to much and not resting but I’m not in pain I want to be back to normal as soon as possible.

 

RAF Concert at The Bridgewater Hall

Well this is a step away from what I usually write about, but I thought I’d have a change.

The RAF Concert Band this year are celebrating 70 years of the United States Air Force with an American Songbook, a varied selection of  songs and pieces of music celebrating the best the Americans have to offer, from Broadway to Saving Private Ryan. This concert had something for everyone. However, with tradition, the evening started with a Fantastic rendition of ‘God Save The Queen’. Some of the older folk in the audience, giving it what for with the lyrics, despite not many others joining in instead choosing to mouth the words and listen to the band play the National Anthem with expert precision. I’m sure Her Majesty would have been proud. Does she sing ‘God save me?’ I’ll ask her if I ever meet her!

The American Celebrations begin with a Hoe-Down (from Rodeo), and then our MC for the evening took to the stage. Many of the audience would have had no idea who our MC was but would certainly recognise his voice. His voice is synonymous with revealing ‘those big money balls’ on the National Lottery or Announcing ‘The judges have their scores’ on Strictly Come Dancing. Our MC for the evening is ‘The Voice of the balls’ Mr Alan Dedicoat.

A brief introduction by Alan, in to why this years concert was a celebration of 70 years of the United States Air Force and the relationship between and The Royal Air Force and what better way to celebrate this union than with a fantastic arrangement of ‘Holyrood’ and ‘The United Air  Force Song’. ‘Holyrood’ was written whilst the Band and Battalion of the 93rd Highlanders were carrying out the guard duties at Holyrood House in Edinburgh. ‘The United Air Force song was written for the US Air Force and is now used as their official anthem.

We moved quickly from official anthems to the fantastic sounds of Broadway, because  not trip through the American Songbook would be complete with a couple of musical numbers. Our first foray into the world of Broadway is ‘Send in the Clowns’ written by Stephen Sondheim, famous for Sweeney Todd . Lending her incredible vocals  to this  amazing rendition is a very talented young lady, Sarah Francis.  This song can evoke many emotions and Sarah performed this with such a heartwarming tone and the emotion of the song was plain for all to see. A think a tear was shed among some of the  audience. A rapturous applause rang out after Sarah and the RAF concert band had finished. This was the first taste of Sarah’s  amazing vocals  and we were definitely left wanting more, and more is what we were treated to later in the show.

Back to a classical piece of music for the next piece. Clarinet Concerto No. 2 in Eb Major Allegro, (that’s a mouthful). This piece introduced to us SAC Sabina Heywood, who was  the winner of the Royal Air Force Charitable Trust’s Soloists Competition in 2017. This piece performed by Sabina was absolutely incredible, Sabina performed this piece which must have been a good 7 minutes long from memory, aided by the RAF Concert band to provide a lovely background to this fantastic clarinet playing. Watching Sabina play the clarinet  was breathtaking, as if you watched closely,  you couldn’t see when she was breathing, I think the  audience  were breathing for her. Such an amazing talent, and I can see this will not be the last were hear from Sabina in the years to come.

From Classical to pop music next, The next three pieces paid tribute to the American Pop Legends. We started with a uplifting performance of ‘9-5’ by Dolly Parton, seamlessly moving into ‘These Boots are made for  Walking’ by Nancy Sinatra, finishing this particular arrangement with Roy Orbison’s ‘Pretty Woman’. This definitely had the audience top tapping and the odd clapping along, more clapping was to follow with the Motown Medley which was to follow but not after  a trip to Scarborough Fair,made famous by Simon and Garfunkel. Lending his fantastic crooner-esque  voice to this lovely song was Cpl Matt Walker, who has a fantastic tone to his voice and his voice echoed throughout the Bridgewater Hall.

From Scarborough Fair back to Michigan and the start of Motown. This uptempo and crowd pleasing arrangement celebrated the best that Motown has to offer. From Stevie Wonder to Diana Ross via The Four Tops. Hits included ‘I’ll Be There’,  ‘I Heard it through the Grapevine’,  ‘My Guy’ and finishing with lots of hand clapping from the audience as Sarah and Cpl Matt delighted us with ‘Ain’t No Mountain High Enough’. This  for me was a particular highlight of the evening as three of the  songs were from the Sister Act films :).

From the sounds of Detroit to the symphonic sounds and hypnotic tones of the ‘Afterlife’. Composed by Rossano Gallante,  ‘Afterlife’ is described as a meditation on life, the afterlife and self-awareness. This piece invoked many emotions and whilst listening to the sounds from the band, pictures appeared in the mind, my mind showed me green fields, lushious blue seas. Tranquillity and peacefulness were the two images I had whilst getting lost in the music of this piece. A lovely contrast to the fast paced toe tapping sounds of Motown.

Back to the  US Air Force now and an arrangement of Stars and Stripes Forever, however this was playfully changed to Stars and Slides forever as this was performed by the Trombone Section. Giving this very American patriotic song a different sound but still staying true to the original.

To end the first half , we returned to musicals and the film, ‘Love Me Tonight’. The song Lover was performed and the Band were once again joined by Sarah Francis and Cpl Matt Walker. A peaceful and relaxing end to the first half of amazing music.

After a brief interval, the second half started with an electric performance of a piece called ‘High Voltage’, a very energetic piece with brilliant solos from the tenor sax and the trombone. A roaring way to start the second half, and this continued as we travelled back to Broadway to celebrate one of  the most famous songs from the show ‘Funny Girl’, ‘Don’t Rain On My Parade’ made famous by Barbara Streisand. Once again lending her amazing vocals to this song was Sarah Francis, and boy, what a voice, belting out this number with emotion and power. A flawless rendition, with an end note that could break glass and brings goosebumps to the skin.

Next we welcome back to the front of the stage (as he has been at the back with the percussion section) Cpl Matt Walker, to take us back to the 60’s with a fantastic number that became a signature tune of legendary crooner Tony Bennett. ‘I Left My Heart In San Francisco’ won the Grammy for record of the year in 1962. Cpl Matt’s voice is perfect for this song  and lends itself beautifully to the music. Continuing with the legendary crooners, we are treated to a rendition of ‘New York! New York!’ by Cpl Matt Walker , again his voice is superb and he  belts out this Sinatra hit with ease. A little break from the original was  the chant of  ‘YES!’ from some of the Band after the line, ‘I’m leaving today’ leaving the audience chuckling away.

Spielberg next, two of  his famous works, ‘Band of Brothers’ and ‘Saving Private Ryan’, two pieces of music from a TV show and a film, that strike at the heart of conflict. These pieces are played with such emotion and a eerie softness, that suits the music and has the audience in the grip of suspense. We go from the conflict of war to the vastness of outer  space. The next piece of music was an arrangement of ‘Space Oddity’ by the late great David Bowie, ‘Telstar’ by The Tornados and ‘Calling all Occupants of Interplanetary Craft’. These three pieces of music celebrate The US Air Forces’ involvement in the US space programme. A very prominent piece which brought back memories to the older members of the audience of the Apollo moon landings and to some of the younger generations, the excellent music of David Bowie and the immortal line ‘Ground control to Major Tom’.

We are on the wind down of the concert now, coming towards the end of  what has been a fantastic night of entertainment and amazing music. We start the wind down with ‘America the Beautiful’ leading into ‘From Sea to Shining Sea’ and then ‘Hands Across the Sea’

Two pieces of music left to listen to, and after an evening of The American Songbook, the evening ended in a very British fashion. During the interval, the cadets sold Union Jack flags, these would come in very handy in the next 10 minutes. The RAF Concert band played ‘Pomp and Circumstance March No. 1’, this piece being a mainstay at the BBC Proms for many years. This led into the return of Sarah Francis and Cpl Matt Walker to lead a rendition of ‘Land of Hope and Glory’, inducing a lot of very enthusiastic flag waving from the audience, apart from queuing there is nothing more British than flag waving to ‘Land of Hope and Glory’ . The evening then came to a close with the playing of the ‘Royal Air Force March Past’, the official quick march of the Royal Air Force.

The audience were  not satisfied by this ending and definitely wanted more. The encore treated us to the battle of the Saxophone and the Clarinet, won by the Saxophone who then with the end piece was highlighted as a  solo and  proved to be a fantastic end  to the evening and left the audience in high spirits and we had  been treated to a night out, we  wont forget in a hurry.

Roll on next year when the Royal Air Force celebrates it’s centenary.

 

 

 

CF Warriors! A response to an article!

This blog is in response to an article I read that the author said he was traumatised by thier CF experiences!

We do go through a lot, some not than others but we are all warriors in our own way but I can’t say I’m traumatised by my CF experiences. If anything I’m stronger in personality and resilience because of them.

I’ve met so many inspirational people through CF! 

Especially those on the Manchester unit who I would some of them as good friends 🙂 some who I’ve never met…. Others I have (sshh). 

Hospital may be rubbish and boring but it’s all part and parcel of having CF, most of us dont like it but we put up with it. We have the best staff in the world I think and they make hospital that little bit more bearable, even if it is just getting extremely excited because I’m watching Game of Thrones! 

Sorry I’ve gone on a bit, I didn’t mean to!! 

Winter and CF

With A thankful heart, With A endless joy…..

The Muppet’s Christmas Carol…Best Christmas film ever (even if Michael Caine isn’t  the best singer in the world.) Winter is a time to enjoy  this film 100 times before Christmas Eve.

it is also, a time for snow (maybe), bitter winds, bad Christmas songs and the X Factor and Strictly Come Dancing Finals. It is also a time for coughs, colds and the dreaded flu!

To most people these are mundane things, and make people feel a bit shitty for a few days and with a Lemsip and a couple of days in bed binging on Netflix, they feel right as rain again!

People with Cystic Fibrosis can only hope for a couple of days in bed.  If a person with CF catches even the most common of cold, it can mean a lengthy stay in hospital, an even longer recovery time of maybe a month or so and at the worst, it could mean they don’t see Christmas.

The common cold and flu virus can be lethal to people with CF, I’m not exaggerating.  The effect on the lungs these can is can be catastrophic. A couple of Lemisp and a day in bed will not sort out, when a lung function has dropped to below 20% or a person is coughing up copious amounts of blood!

This is what can happen if a person with CF catches a cold virus. It happened to me in May, I know it’s not Winter, in May, but I caught a virus called Rhinovirus, in most people it causes a bit of a cough and runny nose, couple of days and its gone. Not me, it caused me to hardly be able to walk properly, coughing virtually constantly, no sleep. I ended it up to my chest, and I ended up going to hospital via A&E, not being able to breathe properly and having immense chest pain. It took 10 days of IV antibiotics and still I wasn’t 100%, I had to take  4 weeks off work to get better. Luckily I did!

So please think of others and respect their health, you never know what harm your cough or cold could to somebody else. If you do feel under the weather, please do not visit someone with CF, it could prove fatal!

 

October/November 2017

It’s been a long while since I last wrote anything! Should really update this more often……….

Well, October hasn’t been the greatest month I’ve ever had, started the month of by not feeling 100% but as us we CF do, carried on regardless and continued to work, and in the end worked myself  into the ground! Being under  the weather or really ill isnt something  I’m particularly good at. Being still isn’t easy for me, I have the attention span of  a fish or as Wes says Dug from Up! I don’t now what he squirrel!!! 🙂

So after feeling like  s**t I gave in and booked a week off work as holiday, got some stronger antibiotics and hoped I would start feeling better. I felt that ill, I actually stayed at my mums for a week.

What  actually  happens when I  start feeling ill or off?

The first  thing that always happens is I lose my  appetite, not good when I need about 5000 calories a day to maintain my weight, this doesn’t happen, I lose weight quickly        (a lot of women are jealous) but for me, this also starts  my anxiety off as I now I start to look thin, but even  the thought of eating anything makes me feel sick. Prior to getting really ill,  I start  coughing more, and more and  eventually, its virtually  a none stop cough throughout the day  with added extreme coughing fits which usually ends  up in throwing  up whatever small  amount I have eaten or  just stomach contents. When I start getting really ill, is  when I start not being able to walk properly, or this last time, not being able to speak properly, as I can’t get my  breath. This sends my  anxiety  levels through the roof. This time I was sensible and contacted the CF unit and got some antibiotics  and  took time of  work, I was hoping to avoid a hospital admission but  I  new deep down that I wouldn’t,so a  clinic visit and it was  settled  a two week  stay in hospital was needed to get  me back to strength.  I didn’t realise I would  have a bed so  bloody quickly, usually wait a week not 24 hours. Kind of  disappointed me because I wanted a weekend with Wes after a few weeks of being busy, but I now my health comes  first!

Usually hospital visits  fill me with dread, its not the time spent alone, its not the antibiotics, its not the hospital  beds,which are that  comfy. Its was the endless  long lines  and cannulas  I had to endure!! You see some people have brilliant veins and  some of us, used to have brilliant veins and now I have no veins, well I obviously  have veins but  they  just give up as soon as they have a needle in! I  think my  record  for a cannula giving up is  about 20 minutes!! But these days are over…thanks to my port….named 5!

A port is a medical  device that sits under  the skin and a small tube runs into the neck and down towards the heart. It is used to deliver Intravenous Antibiotics and also  it can be used to take  blood, stops all the stabbing!! I’ve always thought phlebotomist’s have to be a  little bit sadistic,all  that stabbing and inflicting pain on people!!

So I get clarked in at hospital, got my xbox one, and a heap load of stuff to watch, including Game of Thrones, which I had  never seen an episode and it didnt really  bother me…at the time of writing I have watched 6 seasons in a week!! Im officially  hooked…although slightly confused  by the thick yorkshire accents and the amount of  boobs flashed around!! There aren’t shy folk!!!

So port is accessed and tea ordered…mum goes after dropping me off,just  getting settled in and who makes a surprise visit but Wes 🙂 very happy!

First lot of antibiotics  go in….Tobramycin, Ceftazadime (cat pee) and a new oral antibiotic…..Moxifloxacin…..the best name in the world!! I don’t know what it is, but I always get a sense of relief with the first dose of antibiotics, maybe it’s the knowing I’m on my way to recovery.

One problem with this admission, is the new subway that has opened….I think so far I’ve had 6 subways in 9 days 🙂 well its all calories and I need to put weight on!! Thats my excuse and I’m sticking to it!

Weight  has always been an issue for me, I lose it so quickly, this time I dropped to 58kg, the lowest I’ve  have weighed in ages. It’s about 9st 1lb, not good for me, I need to keep my weight up so my chest doesn’t fail me! One aim of this admission was to put some weight on, which so far has been very successful, 5.5kg in 10 days. The trick  is  now  to keep it  on when I  leave hospital.  This was brought up in bi-weekly ward  round, I  am looking at having a feeding tube inserted  into my stomach so that if  I feel unwell and have no appetite, I  can feed  overnight and try to maintain a  healthy weight. This a big decision and one I have thought about a lot. I am very anxious about having the tube stuck out  my stomach especially at  work, I know no one will see it  but it’s still a worry.

So now the focus is on keeping myself healthy when I come out of hospital! This is a must now, got so much on next year. Got  to stay healthy for Wes 40th Birthday and also New  York in September!! Cant wait!!

I think that’s enough for now!!

 

 

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.

28^th 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 29^th 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 5^th wife 40^th 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. 2^nd 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 31^st 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.