Complaint Letter to Revolution Bar

Had to share this complaint I've made because of the stupidity of it all! I am not one for asking for special treatment or taking advantage but I can't see why my request was treated with such hostility! All I wanted was a bit of compassion as a fellow human being...!

Dear Sir/Madam

On Saturday 7^th September at approximately 11pm I went to Revolution (Electric Press) in Leeds. I don't go out in to town very often as I have Cystic Fibrosis and am often too unwell to venture out. As a result of my lack of knowledge, I was unfortunately dropped off by the wrong entrance to Revolution and was informed I had to use the other entrance by a doorman.

Cystic Fibrosis is a genetic condition that affects mainly the lungs and digestive system by blocking them with thick, sticky mucus. This causes constant chronic chest infections, lung damage, inflammation, malnutrition and diabetes amongst other complications. My lung function is 40% of a healthy persons. Walking, especially in colder weather causes me to cough violently, become wheezy and short of breath. Imagine breathing through a straw with a really bad cold and chest infection and that might give you a small insight in to what I have to cope with every single day.

As you can imagine, I therefore try to walk as little as possible as it is distressing, causes headaches, back and neck pain and is very embarrassing. In fact on a night out I have to plan in advance where to go in order to try avoid walking long distances. Therefore I explained to the doorman that walking around to the other entrance would cause me to cough and become breathless as I have Cystic Fibrosis and could he let me use this entrance? He informed me I could not. I explained again how serious my condition is and please could he let me through just this time, I wasn't trying to get in for free, I would just struggle to walk around. Again he told me no, everyone is treated the same and has to use the other entrance. He then added 'you are out partying aren't you? So....', I believe he was implying I could not be disabled as I was on a night out. Does your business believe that people with disabilities are not entitled to socialise and go out in public? This is pure discrimination and not acceptable at all.

I asked him his name which he refused to give me, I then asked to speak to the manager and he told me if I wanted to speak to the manager to go use the other entrance and get him myself. All I was asking for was some compassion and this man was extremely rude to me. I sent my friend around to the front entrance to fetch the manager and started to explain to the doorman about the Disability Discrimination Act (DDA) (1995). This legislation requires public bodies to promote equality of opportunity for people with disabilities by making reasonable adjustments. Here is a link for your information (http://webarchive.nationalarchives.gov.uk/20070905115609/http://direct.gov.uk/en/DisabledPeople/Everydaylifeandaccess/DG_4018353)

The doorman claimed making me use the front entrance meant he was treating me equally, illustrating he has absolutely no idea what the law is or how to interpret it. He also turned to talk to some other men whilst I was still explaining the law to him and then turned around and shouted at me like I was a child for 'interrupting' him.

Whilst I was speaking to the doorman I even had a coughing episode and he asked me if I was OK, making the whole situation even more ludicrous!

Another doorman came over to find out the problem. I again explained my situation and that all I wanted to do was avoid having to walk due to my condition and I wasn't trying to get in for free. The other doorman at this point yelled he was not not a 'cashier!'. This new doorman told me he couldn't let me in this way as other people would complain, I told him I'm sure he explained I was disabled they wouldn't mind but he didn't seem to care.

At this point I didn't want to go in to the bar any more, however my friends had already paid to go in as they had come in a separate taxi and didn't know what was happening. Apparently the manager was refusing to come see me and I was upset by how unhelpful all the staff were and my inability to do anything about it.

The new doorman offered to walk around to the front entrance with me and get me in for free. I explained to him that this wouldn't help me. However he insisted and I had little choice. So I walked around and to my dismay realised it was uphill which made the situation even worse. I coughed all the way, people were staring at me and I couldn't breathe properly. All because your staff are stubborn and did not believe I was disabled because I have an unseen disability. The doorman asked me if I was OK, clearly I was not and told him so and this is exactly why I didn't want to have to walk around! He offered to get me a glass of water which does not help me in the slightest, what would have helped me they were not willing to do.

When you have a condition like mine, you know that you have to walk to places, sometimes it is unavoidable. However whenever possible you try to avoid walking to save the embarrassment, distress and to preserve energy for the times you have no choice but to walk. My condition is complex, you can't see it but it is serious and therefore I expect to be treated with the same compassion as any other person with a disability such as a wheelchair user, I have a blue badge just like others with disabilities. I was discriminated against because you can not see my disability. I was spoken to rudely and made to feel invaluable as a customer. Your establishment failed to meet the requirements of the DDA and it could so easily have been avoided as my request was simple.

Yours sincerely

Gemma

Glowing Report!

I'm really happy to say that yesterday my lung function was 49%, my weight 55.8kg and my oxygen saturation (sats) levels were 99%! I can't remember the last time I saw figures like that, for months and months now my sats have sat at 93-95% and that was just normal for me, sometimes getting even lower when I felt unwell. So to see them at a normal number is great and for my lung function to be almost hitting 50% is amazing. My weight is back to pre pneumonia 2011 weight, it just shows how long it can take to put that weight back on once you lose it. I have started a 10 day course of IVs which sounds stupid given the numbers, but I have felt a bit iffy the past week or so with my energy levels and I started to develop a tickly cough and chest pains so decided I wanted to have some before we start fertility treatment again, rather than possibly end up needing them half way through.

So what I have been doing differently? Well I believe the main contributor is my new nebulised antibiotic Azli, also known as Cayston, also known as nebulised Aztreonam. I had high hopes for this nebuliser as lots of people have said how amazing it is and I believe them now! At first it made me really wheezy however that went after about 10 days, it does re appear every so often though. Then I started to be able to exercise more than usual and before I knew it I was going to the gym 3 times a week and doing 40 minute sessions involving about 25 minutes cardio and the rest doing weights. I'm feeling I can really push myself at the gym at the moment and I've noticed my heart rate has decreased too, my pulse at rest is in the 80s at the moment, I pretty sure it used to be about 100. I am still very breathless when exercising however I do have less mucus which is what the physio believes has helped bring my sats up and why I think I a finding the gym less hard work.

Then I have also started having insulin with lunch and tea and although I still need to learn how many units I need and not getting it right all the time, I'm getting there slowly. I'm having 2 units with lunch and 3-5 units with tea. I'm having lots of hypos (low sugars) which is not nice, basically every time I exercise and if I have breakfast early or tea late. It's easy to say, well eat your tea earlier or have breakfast later, but that isn't always possible!

So health wise I am doing well at the moment which makes me realise how important it is to be compliant with treatment and to be involved in your CF care. I know for a fact if I worked this would not be possible, I haven't worked for about 5 years now and I'm finally starting to feel I understand my CF and know what my body needs and I'm getting the balance right of rest and treatment. Some days I am so bored and fed up, I feel so useless and pathetic that all my day consists of is CF related activities and attempting to do household chores which mostly Pete ends up finishing off anyway!

I look back to when I first joined the CF community, my health was worsening and I was facing giving up work. I made lots of friends on-line who I felt understood me better than people around me, it was also when I started to take an interest in my health and ways to improve/stabilise it, can you believe I didn't even used to wash my nebuliser equipment?!

Lots of my friends have now either had lung transplants, need lung transplants, have passed away or their health has deteriorated. People that had the same lung function and health as me are now needing lung transplants which scares me but also makes me feel proud that I have managed to avoid this so far. CF is unforgiving, I work really hard to stay stable. I'm not admired or called brave, nobody calls me an inspiration, because in order to be those things you have to push yourself to work a full time job or go above and beyond what your body is capable of and I'm not willing to do that in order to end up dead or dying like lots of people with CF do. Lots of people probably think I'm lazy or one of those scrounges you read about in paper, on benefits, didn't you know the whole country hates people like me at the moment? Sometimes I feel guilty if I go out for a meal out as the papers make me feel like I shouldn't be able to afford my electricity and gas, never mind a meal out, because I am in receipt of benefits. However then I remember my husband does work, so we are not complete scrounges...!

Having CF at my level of CF is a job in itself, I have to do a hell of a lot to stay alive, some people with CF don't, they manage to get on OK with minimal extra effort. I'm not implying that people with CF who did push themselves are in the wrong, or that everyone who needs a lung transplant brought it on themselves. It's such a fine balance between having a life and looking after yourself, nobody gets it right and even if they do sometimes there is nothing anyone can do to prevent that downward spiral, I'm sure it will happen to me eventually. I just feel lucky that so far I'm doing OKish, I have a supportive husband to help me and I'm in a situation for the time being where I can concentrate on my health and not have to run myself in to the ground with work. This might all change through if I don't qualify for ESA though and that is why I am really scared of what may happen in the next few weeks. I really wish the government and society as a whole understood long term conditions more accurately.

Happy Festive Season!

I'm still here! 

I have recently discovered the joy of the mobility scooter! If you know me you will know I hate shopping of any kind, it makes me tired, I get out of breathe, I feel lightheaded, get headaches and I avoid it all costs. We get our food shopping delivered (when Pete is home to help unpack) and I just avoid doing any form of shopping in general. This is OK for most of the year as I don't have any money to buy things anyway, however at Christmas time it can become more difficult. There is only so much online shopping you can do, sometimes you just need to see the item in the flesh or try it on etc.

Say hello to the mobility scooter! Most shopping centres have them to rent for free, you book them in advance for however long you like and off you go! Now obviously there are downsides to these scooters, for a start they are not exactly very cool and I think it took a lot of nerve for me to admit that I needed to use one as it's just another way my CF makes me feel useless, feel different and acknowledge I have a life threatening illness that is worsening slowly. Secondly, there is a high demand for these scooters at this time of year and it can be difficult to book one. So you have to plan way ahead when you are going to go shopping and make sure you call as early as possible to book one and you have to turn up at a certain time and leave by the end of your session. You can't just think, ohh I'll go shopping tomorrow when I'm up and ready. It requires planning. Thirdly, these scooters are pretty big and won't fit in shops, I ended up taking out a box a mannequin was on the other week at the gap wasn't big enough! So you spend a lot of time getting off the scooter and going in the store or to look at a certain item as you can't get to it on the scooter. Lastly, they beep when you reverse, it's so embarrassing! As if it isn't bad enough being in your 20's on a scooter, without the damn thing beeping loudly when you need to reverse, and by the way people do not move for you!  

So yes, the mobility scooter, a life saver for shopping but not exactly something a woman in her 20's wants to be familiar with. Here is a picture of me stuck trying to get out of a lift, naturally Pete took a photo rather than help me...!

I'm rather excited to tell you I have a new inhaler that replaces my tobi nebuliser! I nebulise tobi which is the antibiotic tobraymcin twice a day, I nebulise tobramycin to try help control the infections on my chest. Through the old type nebuliser called a porta-neb this would take 30-40 minutes for each dose and that just one thing I nebulise every day. Then the I-neb was introduced and this cut nebbing time for tobi to about 15-20 minutes for each dose. Now I have a tobi podhaler which takes about 6-8 minutes to do each dose! But the greatness doesn't stop there. The capsules do not need to be refrigerated as they are a powder not a liquid, everything is delivered to my house (no GP's or chemist required!) and nothing has to be washed afterwards. I'm really impressed with some of the advances in CF happening at the moment, its improving not only quality of life as it means less time doing treatments but also it will improve compliance with treatments as well. I'm going to do a video of me doing my podhaler for my next blog but here is a picture in the meantime. The white tube is not actually the podhaler but the case, the podhaler is inside and much smaller. It does make me cough quite a lot, particularly the first breath and I find I have to do three inhalations per capsule rather than two as they suggest to breathe it all in. Also I am having to try it one month on - one month off rather than being on it constantly (I assume due to cost) which I'm nervous about. However so far I am impressed!

Following on from my last post I'd like to share the latest comment I've had that has upset me. A few weeks ago my friend and I went to see the new Twilight film (judge me all you want...!). The car park for the cinema is lower than the cinema so you have to walk up lots of steps. I tried to park in disabled but it was raining and cold so of course the spaces were all full of people that are not disabled. Therefore we had to walk up loads of steps in the cold and hence I was coughing away. A couple in front of me turned around and asked if I was going to see the James Bond film? I shook my head (coughing too much to speak) to which the man replied, 'good!'. His partner then quite nastily told me I should be in bed not at the cinema! My friend said she was so mad she had to bite her tongue! I was concentrating on trying to breath too much to have any kind of thought at the time. Don't you just love people, more concerned about their film viewing than if the girl behind them can breathe or not!

Merry Christmas to everyone! xx

I can't be fixed!

Today at yoga I was informed by a lady that it must be a pain to have asthma, this a regular thing, people assume I have asthma as I use a blue inhaler like asthma sufferers. I told her I didn't have asthma but cystic fibrosis, she seemed quite shocked and exclaimed 'oh poppet that's even worse!', I wasn't really sure what to say apart from 'yeah it's not great'. She then proceeded to tell me how I should try reiki to help me. I never really know what to say when people try to suggest things to try 'fix' me, I haven't asked them for advice, usually their advice is useless and I don't really want to discuss my treatment plan with a complete stranger. 

Here are all the tips I have been given over the years that I can remember - take an antihistamine, have a glass of water, take reflux medication, stop smoking, have a cough tablet, have a drink of honey, try reiki, go see a doctor, have a lemsip, get out of the cold, eat garlic, go get in bed, have a sit down, have some vitamin C, think positive, have a rest, get a good meal in me, I'm sure there are more that I've forgotten. None of these things are going to make my CF go away, they will not get rid of the mucus on my chest making me cough, increase my lung function to stop me being breathless or get rid of the infections breeding on my chest. A few of them might help me temporarily such a sitting down or having a rest, however this is how I am ALL the time, I can't spend my life sat down although I try my hardest to haha!

I get sick of people trying to 'fix' me. Complete strangers I don't know and don't care to discuss my health with. If it's not advice they are giving me, its useless comments such as 'oh you have a bad cough', yes and the sky is blue and grass is green, thanks for that wonderful insight! I reckon I can't go 48 hours without getting a comment about my cough. Think how annoying it would be if you had a massive spot on your face that you were already self conscious and annoyed about and you can't get rid of it. Imagine people keep telling you about this spot and stupid tips on how to get rid of it. Now imagine this has happened for 27 years! So yes I try to be polite but it gets tiresome to the point I try to not cough, do it quietly to avoid drawing attention or avoid doing activities that make me cough.

Before I went in to hospital but when my chest was getting really bad I forced myself to go to the gym and was coughing lots, a guy stood there and mimicked me coughing then expected me to laugh with him. I didn't find it very funny, in fact I was mortified. 

I know people like to show concern, but please don't try to fix me and please don't tell me I have a cough, sometimes its worse and when it is my family and friends notice and are permitted to comment, this is the only time!! However to the general public, yes I have cough and it's not going away, its here to stay. I can't be fixed, I accepted a long time ago this was how my life was going to be, I live with a life threatening condition, it never gets better, all the treatment I have is to try keep me stable and not to make me better. I know for healthy people this is difficult to understand, they have a problem and they go to the GP and the GP makes it go away, they have a cold and spend a few days in bed and then are back to normal. This is not what happens to people with CF or other long term conditions, I am never going to be better, I have to learn to live with my condition.

Ace Husband

It's nearly the end of IV time and the past 12 days have not been the best, but neither have they been the worse. I was put on Aztreonam and Colomycin and my eyes have not gone sore at all, so it must be Tobramycin that is the culprit. However I have had terrible headaches, soreness in my joints and muscles and general lack of energy. However me being me decided that IVs were not going to ruin our plans to go to the Lake District last weekend so we loaded everything in the car and I was quite relieved I have an Astra as there was lots of stuff to take, and off we went. We did a short walk one day and that's about it, however I still came home feeling like a sack of crap which has continued all of this week. I'm still glad we went though as it was nice to get away, I love it in the Lakes, I love the views, fresh air and feeling of smallness.

I always convince myself that life is going to be normal when I'm on my IVs and this never happens. The reason for this is I forget all the little things that IVs do to you and how difficult and stressful it makes your day. One minute I can sleep for England, the next minute I can't sleep at all, things smell funny, I smell funny and as a result feel dirty, having thrush drives me insane, my skins itches, all my clothes feel tight and scratchy, getting washed is like a military operation due to a stupid needle in my arm, washing my hair is even worse, my dressing itches, my hands go dry from cleaning them so much and you guessed it...they itch, I have to plan everything to try fit my IVs in, I feel like I'm on another planet half of the time, my mouth feels like I'm hungover for the whole 2 weeks, I get daily headaches, my joints ache, I'm not hungry at all and feel sick...no wait now I want to eat a million chocolate bars, my sputum goes all thick from dehydration, it hurts to reach for the gear stick in the car because of my needle and lucky old me because I have hardly any energy to cope with any of these things.

Luckily I have an amazing husband because no-one else seems too bothered that I'm on IVs, people get so used to me been on them. Oh you're on your IVs again? Yep that's me, on my IVs again. Maybe people know I have Pete to help me so just keep out of it, I don't really know what I expect. Pete has got up every morning at 6am to prepare my IVs and put them on for me, some mornings I barely remember him doing them! He has also done my evening IVs and when we were in the lakes he did them all. He has helped me with my physio, has cooked tea most nights and taken Alfie out after work a few times. This is what being a CF partner or a partner of anyone with a disability involves and I really don't think they get enough credit, Pete doesn't have to put up with this like I do, he chooses to put up with it. My brother pointed out when we were in the Lakes that Pete does lots for me and yes he does. Pete lives with me and knows what makes me tired, what I can't manage, he understands my limits. On the hand hand he also knows what I am capable of, he knows that I'm not lazy (well maybe sometimes hehe) and I hate it when I useless. He doesn't rub it in my face or expect anything in return and it's taken him a long time to learn all these things, I sometimes worry one day he will have enough and leave me. I hate people that don't appreciate what they have and I know I am very lucky to have such a wonderful person in my life. He describes himself as 'a planner by day and carer by night!' I'm not sure if I like him labelling himself as my carer as I'm more to him than a patient! I know he isn't too serious though, I think he's a planner by day and an ace husband by night!

Pete is doing the great North Run today, sadly because I'm on my IVs it wasn't possible for me to go with him to cheer him on which is disappointing but he understands. I'll let you know how he does!

Here are some pictures from the Lakes

12 Weeks!

About two weeks ago I started to get a funny taste in my mouth and funny smell up my nose, and I knew my good patch was over. According to the physio I am not some kind of freak, its the infection I can taste and smell, I feel like i'm some kind of bloody sniffer dog that can detect infection! In addition to this I started to become more productive, I was getting dull pains in my lungs and I was starting to feel more tired.

I coughed my way through yoga and this man (apparently a GP) who has already commented on my cough to the yoga teacher and told her to tell me to take gavisgon came over to me afterwards and started telling me I have reflux and need to take some gavisgon before class. This annoyed me for two reasons, firstly, I do not like coughing infront of everyone and causing the yoga teacher to have to pause during her instructions because i'm so loud, so to have someone blatantly point out it's annoying is upsetting. Secondly, he has been told I have CF so why is he is insisting on interfering and trying to give me medical advice?! Even when I explained to him it was mucus on my chest he kept going on about reflux, I just wanted to yell 'leave me alone you annoying, interfering old man and mind your own business!', instead I just kind of ignored him after a while and walked off. I  was so annoyed I didn't go to yoga this Friday just gone, as clearly my coughing pisses people off.

On Sunday my friends and I did this modelling experience as my friend got us vouchers for Christmas last year. They do your hair and makeup and take photos of you. It was fun and we got some good photos, then we stayed in Manchester and went on a night out. I felt shocking the next day even though I had not drunk any alcohol and I only slept for 3 hours, I had toilet troubles and kept waking up sweating. Here are some photos from the shoot 

I had outpatients on Friday, my weight is down a little at 53.8kg so I was told to try put a bit more on by the dietician. She also confirmed after a lengthy description of my stools (always my favourite thing to do) that I was not taking enough enzymes which has probably contributed to my small weight loss and massive appetite. So stools wise.... pale, fluffy, large stools mean you are not taking enough enzymes, they do not have to be oily, orange, floaty and extremely smelly as I thought. Also going to the toilet five-six times a day is a sign too! I've hardly had any stomach pains though which is weird as i'd expect that if I wasn't digesting my food properly.

My fev1 is a steady 42% which is great and the physio thinks all the exercise I have been doing is helping this. The doctor wanted me to go on IVs though as I do feel as though i'm slipping and when I suggested going on oral Ciprofloxin I was informed one of the psuedomonas infections on my chest (I have two types of Psuedo on my lungs) is very resistant to most things including Ciprofloxin. So I agreed to go on IVs, blugh! I haven't had any since May so done well! So I am starting them tomorrow, i'm really going to try and keep up with the exercise though, it's just so difficult when your head feels all fuzzy and moving your body is like trudging through mud. 

On Saturday was my sister in laws hen night so I was out in Manchester again! We went in to town in a pink limousine, had chinese then went to the Birdcage. I have never seen so many women in one room and so many hen parties! I left at 11.30 with Pete's mum, Pete had gone to watch Man City with his Dad, so we were both staying at his parents. The next day we went to see some friends who recently had a baby and then had a meal at Pete's parents with all the clan over after going to have a look where my sister in law is getting married in a months time. I can't believe it is going to be Pete and I's three year wedding anniversary next week! Here are some pictures from the hen do, I have figured out how to do fancy things to photographs now to make me look better haha!

So today and I am exhausted and not really done much apart from take Alfie out for a short walk!

Pete is doing the Great North Run again in two weeks time and is only going to take sponsorship money if he beats his time from last year. He is going to donate the money to the CF Ward (Ward 6J, St James Hospital, Leeds) that look after me. Because of this there is no just giving page, if anyone would like to pledge to sponsor him please let me know either on here or facebook etc. We would both really appreciate it! He has some new trainers to hopefully run faster and is training ever so hard, he ran home from work last week! Thanks in advance!

100 Followers!

My blog has hit a milestone, it has 100 followers! Thanks to everyone that reads it and I hope you find it interesting/useful/insightful. It means a lot that people follow me and my life and I hope I contribute something useful to the blogging world! Blogger has changed recently and has lots of new information, my blog 'the lonley disease' has been viewed 696 times, unbelievable! The record is the blog about my honeymoon though, that has had 948 views!

We went to the Lakes over the bank holiday weekend with some friends and I had such a good time but was absolutely shattered for over a week afterwards. We went on the Saturday and had a short walk around Coniston and then on the Sunday some more friends came up and we went for a longer walk from our book 'walks on the level' good old Norman and his walks for the crazy people who can't walk but still like to give it a try! I never realised I walk so slow compared to other people, seriously how do people walk that fast?! Alfie and I kept dropping behind, Alfie was praised for completing the walk, er hello what about me...?! Haha!

On the Sunday night we played a game that is charades and pictionary in one, it was so funny, our team won of course. We then played cards and I won again of course! By Monday I was so tired but we went on a boat on the lake, it was quite cold and wore about five layers of clothing to keep warm!

When Pete was packing the car to go home he managed to lock the car keys in the boot so we had to phone the RAC to come out and rescue us. We were lucky the guy managed to find us as the house is in the middle of nowhere and even when he arrived he said he might not be able to get in to the car! He made a gap in the back door and put a wire through the gap and wound the window down with the wire (luckily the back windows are not electric) and hurray he opened the door and we got our keys back! This meant we didn't get to set off home until about 9pm and I had to do my evening physio in the car in front of my friend and her boyfriend, not the highlight of the weekend. I apologised that I had only met my friends boyfriend once before and was now going to have to cough my guts up in front of him! It was rather embarrassing.

I struggled all weekend to do all my treatments to be honest, its so hard to fit it all in especially when you are tired and want to take that time to have a rest like everyone else! I also hate having to make everyone arrange things around my treatment like getting back by a certain time or having tea at a certain time so I can fit it all in. I also hate sitting in the bedroom doing my treatment and hearing everyone else in the main room having fun and chatting, it makes me so angry that I have to miss out and we are not talking 10 minutes here, we are talking an hour or more. I hate having to make everyone do the easy walk so I can do it or that I didn't do much cleaning or cooking to reserve my energy, I just feel like I'm a burden sometimes and expect everything to be about me, but in reality I'm doing all this so that I can join in. I don't know if I'd be able to go on trips anymore without Pete as he tends to watch out for me and knows what I can and can't do and picks up the slack for me, I don't think my friends would do stuff for me like he does. It makes me sad that I'm not as independent anymore.

Here are some pictures from the trip

CF Week

Today it is CF Week so I have been doing my best to try educate people about CF by posting blog posts on facebook everyday. A fair few people have looked at them (I can look how many people have viewed posts etc) so hopefully it has done some good. I'd like to arrange some kind of fundraiser one year but I'm not very good at stuff like that so wouldn't know where to start!


Yesterday I finished my IVs thank god! This course has been horrid and seemed to last forever! The headaches settled down slowly after the first week which was a massive relief but then my eyes really started playing up, so puffy, weepy and sore. I looked like some kind of drug addict with my red, baggy eyes! It got to the point where I couldn't see properly at times and I considered phoning the hospital as I wasn't sure if it was an allergic reaction, I'm sure it is but if it's not serious I tend to put up with it. Anti histamines do not help at all, neither goes putting lots of aqueous cream around them to help with the dryness. The only thing that seems to help a little is if I put some comfort eye drops in my eyes a few times a day. I think its the Tobramycin that causes it as they are worst on a night when it's going in me and the following morning.


On Wednesday I looked a right mess, my eyebrows desperately needed  waxing, my hair looked shocking, puffy red eyes and to top it off I woke up with a coldsore! Grrr! I got my hair done on Wednesday, finished my IVs yesterday so my eyes are looking better already and I got my eyebrows waxed today, the only remaining problem is the coldsore! At least I am feeling back to my normal self anyway!


My fev1 was 44%, my weight is 54kg and my sats were 95% so all is looking OK!


I had a fit to fly test about 3 weeks ago and failed miserably. My sats fell to about 85% when given oxygen for 20 minutes that would be the same as on a plane. Therefore I need extra oxygen on our flight to Italy, I've never needed oxygen for a short haul flight before so I'm a bit gutted really. Luckily Thompson who we are flying with provide free oxygen (we checked when booking just in case) and the form my Doctor needed to fill in was really simple. However the letter needs to be signed no more than a month before travel so they have said they can't accept it and I need another, so annoying! I've just changed the date on the letter and will send it again in a few weeks...! I've also sorted our travel insurance, the quote I got before was no longer valid as I needed oxygen on the flight and they wouldn't cover me anymore. Luckily the broker (Gill Noble) found another company for me and I also called Insurance Choice but the brokers quote was cheaper at £185 for Pete and I, so we went for that. The joys of having an illness and going on holiday!!

Aftermath of a Busy Weekend

Last week I thought I was starting with a cold/virusy thing, it didn't help that I drank out of my friends cup by mistake who had a cold, talk about being stupid! I went a little crazy with the vicks first defence but if it works who cares?! I keep getting headaches, its basically when I do anything that makes me cough, get breathless or tired, so walking Alfie, coughing in general, doing my physio (every single time!), getting a shower, doing anything! I've had a headache for 80% of the time the last week or so. The back of my neck is sore a lot as well, I think this may be linked to the headaches but not sure. My chest is feeling tighter, my sputum is thicker and more often and I'm tiring a lot more easily than usual. It might just be general CF crappiness, I'm bored of trying to figure out how to stop feeling ill, as whatever I do it still happens and whatever the cause I don't feel great.

This weekend we went to a surrogacy conference in Stafford, we stayed over the Friday and Saturday night. I feel shattered! Pete had to do my physio for me yesterday and he has been washing all my nebs, he also cooked tea and I had to follow him when driving (we had to go in two cars) as I was too tired to even think where to go. After living together for so many years Pete seems to have some kind of sensor as to when I need more help and he just does it without moaning, he really is wonderful. I guess our relationship wouldn't work if I had to ask him all the time and he made a fuss about it like some men would, I think I got very lucky to end up with him as a husband.

I'm upset as I was feeling so well and now I'm sat in my tracksuit bottoms (they are like my comfort blanket!) and can't even be bothered to make any lunch as I'm not hungry so it's not worth the effort, I'm just having an ensure plus instead. I'm hoping if I rest today I will feel better tomorrow. I wish this headache would go, they are so debilitating. Only five weeks since I had IVs so I'm hoping some rest will sort me out.

We had a great weekend though and I'll talk about it more on my other blog when I get around to doing it. This is what so annoying about CF though, to those people who met me at the weekend I probably seemed perfectly fine which is good in a way, however then people like myself are judged and assumed to be able to do everything others can do and people make assumptions about whether we can work (seems to be the newspapers hot topic at the minute), are we even disabled? They don't see the aftermath, struggles and in-between the lines. Sometimes I like this about my disability as I can try pass as a perfectly healthy person (with a bad cough!) and not be treated differently, but other times I don't like it as I feel people judge me on what they only see and they don't understand my disability and how difficult it is to live with.

The Lonely Disease

When you have CF and you are on your Ivs, or feeling unwell or anytime really, you soon come to the realisation that this doesn't change much. If people are under the illusion that family and friends offer to cook you tea, do your shopping, take you out etc like they would in a film then you are mistaken. People don't rally around to help you or to raise money for a charity, they don't feel inspired to do anything extra because of your illness and the difficulties it causes. Pete is the first person i've known since I can remember to raise money for the CF Trust. In Emmerdale last night the whole village was seeing if they could be a bone marrow donor for Sarah, I doubt this happens very much. My own husband doesn't donate blood, his choice, I can't make him and I'm not going to nag him because that would be me pressuring him to do something I wish I could do myself (I can't donate blood or anything, I've researched it). Most people I know are on the organ donation list, least that's something!

There is a part in the film 'The Beach' where a guy is taking ages to die and the main character says 'You see, in a shark attack, or any other major tragedy, I guess the important thing is to get eaten and die, in which case there's a funeral and somebody makes a speech and everybody says what a good guy you were. Or get better, in which case everyone can forget about it. Get better or die. It's the hanging around in between that really pisses people off'


I think people with long term illnesses are like this, people are supposed to die or get better. But we don't do either, we sit somewhere between, keeping going but never quite one or the other. This confuses healthy people, they don't understand it as they have never experienced it. They judge people with long term illnesses and make assumptions. He/she seems to manage OK, he/she doesn't seem that ill, he/she wants to be treated like a normal person, he/she is stronger than other people. I probably do it myself about others such as elderly people or people with children, I assume they are managing although I would try to never be judgemental about something I don't know about.

I imagine when I was first diagnosed with CF, my family were worried and anxious, eager to help out how they could. As years go on it just becomes the norm, people become complacent, one of my brothers doesn't seem to even acknowledge I have CF and if I mention it he thinks its some kind of excuse I'm using and sighs at me. I feel I have to push all the time to remind people, even my own husband who lives with me and sees how much I have to do, how tired and ill I can be, he sometimes expects me to be able to do everything I need to do, as if I have become immune to feeling exhaustion and pain over the years. Like I can push it aside and be tired when its convenient.

We went to a surrogacy social event on Saturday and stayed over 2 nights, being on my IVs made this day very stressful and non stop for me. I was exhausted on Sunday and still am to some degree, nobody even appreciates how much effort went in to me making that social event, but why should they? To them I was there just like everyone else. Why do I even want them to appreciate the effort it took? It won't make a difference to anything! I guess I feel like my achievements go un-noticed because to others they are nothing, but to me they are everything.

My eyes are so puffy and red and my headaches are clouding my mind and incapacitating me. I've asked to not be put on ceftaz again unless really required, I always say I will take it easy when on my IVs but it never seems to happen even though I don't seem to do much! Why do people always seem to ring you when you are trying to have a sleep? Why do I feel like people are calling me all the time, but the phone call is never to see how I am or if I need anything?


At the end of the day people like me are supposed to be dead, if it was survival of the fittest I'd have been gone long ago, even though I think mentally I am stronger than most. The thing is, I can do it on my own because of my strength. I can't remember the last time someone came to a hospital appointment with me because I don't need anyone to be there, I don't need someone to do my physio or tell me to do it, or do my IVs for me although Pete often offers and do you know what, its great when he does, to not feel alone in this quest for me to feel better. To know I could do it if I needed but the offer to be there to make things a little easier. My Nana pays for a lady to come and clean our house every week, its one of the best gifts anyone has every given me, not just the cleaner itself, but the recognition that I was struggling with the cleaning.

I like that I am independent most of the time, I don't want to rely on others to get me through, it's my CF and my responsibility, this makes it hard for me to ask for help and its mostly my fault as I don't ask. The thought of going in to hospital and someone else taking over my care frightens me as I know whats best for me. I like people see me as managing and getting on with life because that's my aim. I suppose I just wish that I didn't feel so lonely, CF is a hidden disease but also very lonely at times.

10 Things Not to Say

Someone posted 10 things not to say to someone with a long term illness on facebook, I thought it was quite good. Here they are:

10. You can't be in that much pain

There is always some problem I have with my body whether it be constipation, getting breathless, needing to cough, having a headache, my body aching etc. If I were to display to people every problem I had, I wouldn't be a very fun person to spend time with would I? I don't learn to 'ignore' my problems or 'get used to them', I learn to live with them because I have no other choice.

9. Stop being lazy and get a job

Trust me, I'd love to have a full time job and the wage that comes with it. Do people think I really enjoy sitting around all day, feeling useless? Getting a degree and not being able to put it to use? Seeing my friends have lots more money than me and talking about how great their jobs are? My illness is my job and trust me its not easy, I never get a day off. Remembering to charge things up, get IVs out, send off prescription requests, get my port flushed, waiting in for deliveries, picking up prescriptions, going to the hospital, planning physio and nebulisers in to my day, remembering all the tablets I need to take, trying to park close to where I need to be, holding in coughs, cleaning and sterilising nebulisers, remembering how many times i've been to the toilet!
Oh and I'm not lazy at all or at least I don't think I am, try doing everything on about the amount of energy you have the day after a long night out or when you have a cold.

8. You just want attention

Yes I have a life threatening illness and have known 20+ people die from this illness before their 30th birthday, just to get attention.... If anything I hide my CF from people and they have no idea how serious my illness is

7. Your illness is caused by stress

I'm not going to even address this, we all know CF is genetic

6. No pain... no gain!

Erm whats my gain? Will my CF improve or go away? Will I get a reward for having CF? If you go to the gym and work out you get fitter/more muscly, if you give birth you get a beautiful baby. Say this sentence to those type of situations please.

5. It's all in your head

Look at my medical records and tell me that, pretty certain my head didn't make me produce loads of mucus and give me lung damage or infections...

4. If you just got out of the house....

I take 2 meanings to this one
A) As in fresh air or speaking to people is going to cure me - I get out plenty thanks, in winter its not nice when I piss myself because I'm coughing so hard due to the cold!
B) As in because I can get out the house, I mustn't be that sick - I always have my illness, I have to learn to function with it. Its not a cold, I can't stay in bed for a few days and then get on with my life. Just because I can take the dog for a walk or drive to the shops, it doesn't mean I'm fit as a fiddle.

3. You're so lucky, you get to stay in bed all day!

Really? Would you really want to do that every single day? I know I wouldn't and p.s. I don't.

2. Just pray harder

If anyone said this to me I think I'd punch them

1. But you look so good!

People with illnesses do not have to look ill to be ill!! Why is there this belief that to be genuinely ill you must look it?!

Keeping Cool

I finished the cipro on Monday and I can't say I'm feeling any better, worse if anything as I had forgotten that cipro has nasty side effects like all over body aching!

I'm not extremely ill or anything I just feel like I'm in trance all the time. You know when you drive somewhere but you turn off and wonder how you got there without crashing, that how I feel all the time. I'd doing the motions but my mind isn't contributing as much as normal, its like I'm outside of my body so I can't feel how exhausted I am. I think this can give a false perception of how I feel as I'm still doing everything I need to so from the outside I seem OK, and if I really need to I can switch my brain back in to gear to have a short conversation etc. I think it's some kind of technique I've established to get on with life, if you turn your mind off it uses less energy I suppose! I have less battery power so I reserve it for daily tasks. I don't feel like this all the time so i know it's not normal.

I also keep getting a sharp pain in my right lung that passes after a few seconds. However when its there it's not nice and it's usually when I need to cough and it hurts so much to take a deep breath, which you need to do to cough. It happens more when I lay down, no idea why!

In addition to this I know my chest is struggling as I'm breathless easier and my shoulders and neck ache constantly. I can tell my posture has worsened and this is because when you struggle to breathe your body makes you hunch and lift your shoulders as this makes it easier somehow. I don't even realise I'm doing it, I'm trying to sit up straight but it makes it ache more and if I try to relax my shoulders and move them away from my ears, they go back up as soon as I stop thinking about it. I could do with a really good massage by someone qualified but I don't think I could afford it as I think sports therapists are quite expensive and I don't know if it would help really.

So I called up yesterday to start some IV's, I'm fed up and just want to feel less like a robot and faster than a slug!

I'm starting my IVs next Wednesday, they couldn't fit me in this week, a sign that they are busy! I have to cancel my flu jab as can't have it whilst on my IVs, thankfully the CF ward have started doing them again though so I don't have to try book another through my GPs, it's a total nightmare! The CF ward stopped doing them for a few years to save money, however I think they may have realised lots of patients don't get them if they have to go through their GP and it ended up costing them more due to increasing numbers of inpatients during winter and patients requiring home IVs! That's my theory anyway!

IVs create a problem for me as we are staying in a hotel for 2 nights whilst I will be on the IVs. The hotel is paid for with no refund and we have bought the tickets for the surrogacy UK AGM already, plus I really want to go. The hotel rooms don't have fridges but thankfully have baths and I've requested a room near reception to make things easier for me. I looked at buying a portable mini fridge however the minimum temperature they reach is 18 degrees, how can that be classed as a fridge?! So I've borrowed a cool box off my dad and going to test it out to see how cool it stays over 1-2 days, the drugs need to be kept at 2-9 degrees so failing that I'll have to see if I can keep my IVs in a staff fridge! I'm slightly nervous about everyone at surrogacy UK seeing my needle etc but to be honest I'm sure it will be covered anyway by a cardigan as it's not exactly warm is it?!

What a Difference a Week Makes

I've been a very naughty girl, I ran out of pulmozyme on Tuesday and didn't go collect the prescription from my GPs until Thursday. Which meant my pulmozyme wasn't really for collection until yesterday, so I haven't had pulmozyme for almost a week. It's mostly my fault but also the GPs and drug suppliers fault for being so slow and taking 2 days to do my prescription and then 4 working days to deliver it. If I'm going to run out of something I literally have to realise a week in advance so I can get the prescription and have it in the chemist, it can be difficult to be so organised, especially when my GPs is not around the corner and closed on a Wednesday afternoon. At least I can now email my prescription requests, I used to have to drop the request off and go collect it 2 days later, why it takes 2 days to write a prescription is beyond me...

Anyway, yes I have been naughty and now my chest is feeling crappy. It could be coincidence, but it's more likely it's due to lack of pulmozyme. My sputum is thicker, darker, more difficult to shift, it sticks at the back of my throat and makes me feel sick and it sounds more meaty when I cough. I felt so tried yesterday, all day, everything I picked up felt so heavy, I feel asleep at about 9.20pm and slept like a rock last night until 10am this morning. Well apart from when I woke at midnight due to some women shouting in the street (I wear earplugs so she must have being very loud!) and a guy telling her to 'go the f**k to sleep', I live on such a lovely street!

Hopefully now I'm fully stocked on pulmozyme I'll start to feel better again. A few other issues I have been having are A) I am weeing for Britain, I can't stop! I go upto 8 times during the night! and twice during a physio session. Worried I have a weak bladder and now idea how to sort it out. B) My bones keep aching on a night, particularly my bones around where I sit and the tops of my legs. I feel like an old woman! It hurt so much the other week I was crying in pain as it hurt to walk, or to sit and when I coughed it was horrible. I ended up lying on my back with my legs up in the air to take the pressure off my sitting bones. Some pain killers seemed to help it and I had to lie on my front in bed which isn't great as I can't breathe very well when on my front! I have outpatients next week so will mention both things and see what the Doctor has to say.

I was given some interesting advice last Friday in my yoga session.... I was coughing alot during the class and afterwards the yoga teacher came over to me and told me one of the men in the class was a Doctor and suggested my cough could be caused by acid reflux (which is basically like indigestion) and to try take some gavisgon. She said she told him about me, not sure what that means, she knows I have CF but that doesn't mean she knows anything about it! But he insisted she tell me. I politely informed her I was coughing because of the mucus on my chest and I am on tablets slightly stronger than gavisgon for my reflux and there is nothing I can do about the coughing. All I want to do is go to yoga, get some exercise and mind my own business!

Pete did a 10k run on Sunday, the Jane Tomlison Run for All as part of his training for the Great North Run. Thanks to all of you that have already sponsored him but for those of you who haven't please do! Pete is working so hard to prepare himself and remember it all goes to the CF Trust who have recently had to announce they are having to put research on hold due to lack of funding http://www.bbc.co.uk/news/health-13643267 . Please click here to donate.

It's Alfies birthday today, he is 4 years old! He is heading to middle age now bless him, maybe he'll buy a sports car or something! Here he is the first day we got him



Here he is now, what a handsome boy he turned in to!

Unexplainable Feelings

I feel like I'm struggling emotionally at the moment and I don't really know why. I have tried to cheer myself up by trying to keep busy but as soon as I'm on my own or doing my physio/nebuliser, I feel this sense pulling on my mind that it's all fake and underneath I am not as happy as I like to make everyone believe, does everyone feel like this?! I can't even explain what is wrong with me, for example on Sunday we'd had Pete's parents around for lunch and had a nice day. Then in the evening I started to do my physio and I just got so annoyed. It occurred to me that I spend an hour of every evening and morning doing my bloody physio, I can watch a whole TV programme doing physio, it doesn't seem a big deal but we started watching 'The Event' on catch up and I just thought to myself 'I'm still going to be doing my physio when this finishes' and I'm going to be doing this every night for the rest of my life. Then I started to imagine what it must be like to not be chained to a demanding treatment regime everyday and wonder how you are going to fit it in around everything. What it must be like to just be able to do things without consulting your doctor or feel like you are arranging a military operation. Anyway the result was that I had a massive cry which involved me telling Pete I just want to be normal, that's all I want.


It doesn't help that I have been off my IVs a week and I already have a cough and getting breathless doing small tasks, Pete even got annoyed with me last night as I kept waking him up coughing. I can't understand this coughing during the night, it's so unusual for me! A day can't go by where someone doesn't comment on my cough, it drives me absolutely crazy. I don't even know what I want people to do instead, I'd just rather not have a cough!


I don't want to ring the hospital, I can put up with it and I'm getting on with my everyday activities, is that what I'm supposed to do? After all I do have CF... or should I tell my team? Sometimes I forgot what is normal for me and what's not. Will they think I'm just paranoid or even worse put me on my IVs again or even worse, make me go into hospital?! If I think about even going into hospital these are the first thoughts that go through my head 'who will look after Alfie and Pete?' 'will my travel insurance still cover me?' 'people will judge me and think I shouldn't be trying to have a baby'. I don't feel unwell like I need to go into hospital but I haven't been in for years and it's only March and I've had 2 sets of IVs already, so I start to get all these random thoughts about what my CF team will suggest!


My friend suggested I ask to be referred to see the CF psychologist, she knows the team and says they are really nice. However I'm not depressed, I just feel abit fed up and I don't want it to be on my records, it's not like they can make my CF go away! She says it could help me though as I don't really tell people how I'm feeling as I'm embarrassed and I don't like people to worry about me. Also people don't understand as people seem to think that if you have a long term illness you just accept your life will be different and learn to deal with it, which I think I tend to do OK with most of the time. I'll see how I feel in a week or so, I usually have these little self pity moments and recover fine.


I actually feel guilty for feeling fed up, there isn't actually that much wrong with my life and much worse things happening in the world. I think all this surrogacy stuff (see my surrogacy blog) along with me not feeling great health wise at the moment is getting me down and I'm worried people especially in the surrogacy world will judge me (as I think some already have). I feel like I constantly have to prove I can cope and my CF is manageable. I just hate CF, it lurks everywhere and seems to taint everything I do no matter how much I try to not let it. In addition to this, my mum is on holiday and I wish she was here. Jeez I really am feeling pathetic today if I want my mummy....! I'm just glad we have got lots of trips and holidays coming up that are sure to cheer me up! If I have a plan or goal I usually feel better!


To end on a positive note after a downer post, here I am on Comic Relief ready to take donations!

Knitting Lesson no 2

On Sunday we went to Pete's Grandad's birthday get together, we got to meet Pete's new cousins too which was nice.

I didn't sleep well at all on Saturday night which is interesting because on the radio on Tuesday they were saying that having your mobile phone turned on in your bedroom can make you get insomnia. Usually I turn my phone off and leave it in my bag every night, but Pete went out with his friends so I had it turned on, on my bedside table and got about 3 hours sleep. Anyway the result was that I didn't feel cracking on Sunday, my colomycin dosage was upped to 2 mega units x3 a day from 1 mega unit x3 a day on Friday, so I think this made me feel quite groggy Friday, Saturday, Sunday and Monday. On the journey to the party I got terrible travel sickness and I had to get Pete to stop at a service station for me to set up my IV's in the car, there was no way I could have done them whilst he was driving, if I took my eyes off the road I think I would have been sick.

So I arrived feeling and probably looking like crap, attached to my IV's, wanting to lie down! I felt better once I'd had some food and a coffee or two, but I wasn't my usual self.

I don't like doing my IVs in front of Pete's family, I don't mean his close family but his extended family. I don't think they know much about my CF or that I even have CF and I just feel awkward and rude having to change them over and plonking my equipment down without much of an explanation. I hate the thought of people thinking of me as being sick, when I was holding one of the twins I coughed and I was worried they might think I could infect them or something. It's probably all in my mind, but I don't know what or how people think as I've never been on the other side. I guess I just get slightly embarrassed by it all which I think is natural.

Pete with one of the twins

Pete's sister with the other twin

Pete's mum (also the twins aunty) and I with the twins

The twins with their mummy and aunty

I met up with some friends last night which was great as I feel like I haven't seen them for ages! We were talking about disabilities and adoption/surrogacy as one is training to be a psychologist and the other is a social worker. It was really interesting as my friend says that I am very honest about my CF and realistic but yet see the positives in my life and cope well with the problems I face. It's nice to think that's how I am or at least how people think I am. I keep doubting myself as to whether I am going to be able to cope with a baby and wondering if I am silly, but I know in my heart I wouldn't be doing it if I didn't think I could.

I had some training on MS (multiple Sclerosis) today as part of my voluntary role at Scope. It was good to learn about another unseen disability and interesting to see the similarities of the problems associated with the condition and my own. I have another knitting lesson tonight, hopefully I might be allowed to bring it home with me this time and do some on my own, haha!

Getting Nosey about CF with Oli and Nush

The CF Trust have made a video to help explain to children and their friends about CF, however I think it's quite good to show to adults who don't know much about CF too!

Busy Bee

Hi, I'm sorry I haven't blogged in a while. I have some good excuses I promise!

First my laptop charger that has been trying to electrocute me for the past few weeks has now decided to die altogether, it decided to do this when I had 4 minutes of battery time left. Therefore I can't use my laptop and due to my laptops old age I have been struggling to find a new charger for it. I have hopefully found one on Amazon after a few emails with a seller and I've just ordered it now. I'm currently using Pete's laptop but it obviously doesn't have all my settings etc so I haven't been going on the Internet very much.

My second excuse is that I haven't been feeling great and I have been very busy, so any spare time I have, I've been sleeping and trying to relax, poor Alfie hasn't been walked once this week. I just feel tired and my chest isn't feeling that great, I've been wheezing on a night, waking up covered in sweat and my sputum is thicker.

I went to see my friend from University on Thursday, she's just had a baby and lives in Derby. I really could have done without the drive there and back, especially in a new car I'm not 100% comfortable with driving yet, but I've been arranging to see her for ages so I really didn't want to cancel. At least I got to have a bonding session with my car and it was obviously great to her and her little boy.

I also went out last night, it's been arranged for weeks and I've had a nightmare getting a new dress for it. Basically alot of problems with ordering online etc so with all the hassle, plus I've been looking forward to the night out for ages and everyone was meeting at our house, I didn't want to cancel this either. Had a good time anyway and I will put some pictures up when I am back on my laptop and can load them on!

There is loads of other stuff I have been doing, I'm not going to list everything because I can't be bothered! I feel like most of what I am doing, is to keep people happy, because I don't want to let people down. I sometimes feel quite angry inside because I feel like no one understands that I am struggling to do these things, it's partly my own fault for not saying no but also I feel people put pressure on me. I have a hospital appointment on Thursday so I will see how I am doing, I think I'm going to need IV's however it could just be because I have been busy, I feel like I can't even fit IV's in! Even when I go on IV's no one seems to give me a break, even Pete seems to expect me to be able to do everything even when feeling run down or on IV's. I just get so frustrated, how can you show people you don't feel good and make them understand, if I'm quiet I'm moody, if I don't do things I'm lazy, when I put a happy face on and get on with it, then I'm not really that bad. Just can't win really....!

Am I CF Or Do I Have It?

As you know, I help out at my mums barber shop and to be honest I’m getting abit fed up of people not knowing what CF is and as a result me avoiding telling them I have CF. I don't want to talk about CF all the time, people can't comprehend how it affects me and it also creates an awkwardness for the them.

Conversations tend to go like this

Customer: are you still studying?
Me: no I finished Uni about 3 years ago
Customer: oh right, you looking for a job to do with your degree then?
Me: no not really
Customer: oh right, how come?
Me: I have cystic fibrosis so had to give up working at the college I worked at after uni
Customer: whats that then?
Me: [wants to scream}

Or

Customer: you must be new here never seen you before?
Me: no I’ve been here ages, my mum owns the shop. I don’t work many hours
Customer: oh how come, got another job or a kid?
Me: no I have cystic fibrosis so it limits how much I am capable of working
Customer: whats that then?

Or

Customer: What days do you get off then?
Me: I’m only here Saturdays
Customer: oh right, got another job or a kid then?
Me: erm neither, I have cystic fibrosis so struggle to work a lot of hours
Customer: whats that?

Or

Customer: you going out tonight then?
Me: no I’m not feeling very well, how about you?
Customer: nah, whats up with you? Hope its not serious?!
Me: well I have cystic fibrosis and I'm not too well at the moment
Customer: [looks all awkward and goes quiet]

Or

Customer: you got a cold or hay fever?
Me: erm neither thanks
Customer: whats with the cough then?
Me: I have cystic fibrosis
Customer: whats that? Is it serious?

OK you get the jist! I don’t want to spend all my time explaining what CF is so end up just trying not to talk to people! Plus it makes them feel awkward and embarrassed! I mean how can you explain CF in terms that people understand without making them feel uncomfortable! You can’t believe how nosey people are! The thing is, I barely know these people, I don't want to have to explain my life to them and I don't want the awkwardness which emerges once I tell them I have a disease, plus I get asked stupid questions like 'isn't there a cure?'. CF is not who I am but somehow it seems to leak into everything I do and talk about! It seems to be becoming part of my identity more and more. It's in my mind all the time, whether it's planning when I need to do my next nebuliser or trying to figure out how to explain a part of it to someone. I suppose I could lie but that's not how I think I should live my life.

I once did a customers hair and I knew his daughter, he said 'oh which Gemma are you? The one with CF?', is that who I am? Is that how people remember and describe me?

I am not ashamed I have CF, however it's a difficult disease to explain in simple terms and it would be nice to get away from it, I know it's impossible but one can hope....!