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

BBC News

Check me out I'm in the news!

The Nebuliser - A users Guide

A lady who I've spoken to before from the CF Trust contacted me last week to see if I'd be interviewed for this short piece. I always swore I'd never do anything media again after getting quite upset with some responses on my Embarrassing Bodies piece. Also because it can take up a lot of your time and energy and you have no control over what they use or say.

Since this was an article on nebulisers though I figured it wasn't really about me as such, they just needed to ask me about nebulisers to get the information correct and to provide an example of a user of nebulisers. 

I think the article is great, its quite short and basic but then who wants to read about nebulisers in depth?! It covers the main points and raises awareness of what having CF involves, which is always good and really the underlying aim of the article. As usually there has been a few negative comments in the comments section but nothing too horrific or aimed at me personally (that I can see anyway, the moderators seem on the ball!).

Just Write the Prescription Please

Well hello there!

So a little update on moi... my lung function last week was 45% and my weight is *drum roll please*..... 57kg! I swear it must be muscle I am putting on or all just on my bum which is looking bigger and bootylicious, as my waist is not getting any bigger thank goodness. Guess my strength training at the gym is doing the trick! Just call me muscle lady from now on please.... needless to say I feel quite proud of myself at the moment and may even feel a little smirk making its way on to my face.

I did start to feel run down towards the end of last week, I suspect I picked something up when I had my hospital appointment. Hospitals are the worse place for sick people to go! I started to get chest pains, coughing more, more tired and I was needing to do more insulin to keep my blood sugars down. From what I've gathered, diabetes causes a circle of sugar misery. You get high sugars because your chest infection is worsening and then the high sugars feed your infection. So I started on some Ciprofloxacin, upped my hypertonic saline and I'm starting to feel better, although I suspect I may end up having IVs but for now i'm happy to coast along (the bank holiday is coming up after all and who wants to be hooked to IVs if it can be put off?!). I'm at the in between stage: not my normal self and not ill enough to be begging for IVs just yet. I finish my last dose of Azli tonight and then it's my month off, I suspect this may be my downfall....

I only had 10 days worth of Cipro in my cupboard so asked for a prescription for four days worth to make it a two week course. Well the SHO Doctor (junior doctor) I spoke to was not happy I had started Cipro without asking anyone or telling anyone. How long have you been taking it? Who prescribed it? Is it in date? What dose are you taking? In future can you let us know so we can make a decision as how to treat you? Obviously she is new and I didn't want to be nasty, we all have to learn after all, so I was an obedient patient and answered her questions:

'I've been taking it since last Friday', 
'I'm not sure who prescribed it, I get it prescribed a lot, it was in my cupboard along which lots of other medications I have as back ups',
'yes I checked the expiry date, I think I'm capable of that', 
'I'm think it's the higher dose since I'm an adult and have two types of chronic Pseudomonas',
'yes in future I'll call the busy CF ward and ask to speak to a busy doctor to see if I have permission to take a tablet that they have specifically prescribed to use for this given situation so I don't have to wait for it to arrive in the post'

I didn't really say all that, like I say, they need to learn. Quickly if possible. Learn I've had CF for 28 years and know the protocol better than them or what works for me and I know how my body is feeling..... as you can tell, I'm not too keen on cocky junior doctors. Just write the prescription please.

Everything is OK in this neck of the woods

Oh my gosh, how is it July and I haven't done a blog post since April...! Apologies!

I must say that insulin and Azli (Cayston) seem to agree with me, I think I am the healthiest I have been in a long time! My lung function at clinic last week was 44% and my weight 56.5kg (yes i'm getting fat!) and I'm on my month off Azli!

I've dropped the insulin at lunchtime on advice of the Doctor as I was having quite a lot of hypos (low blood sugar) even with just one unit of insulin as lunchtime. I monitored my blood sugars last week and was getting some high readings after some lunchtime meals but not others so the CF team are going to decide whether they want me to start having insulin at lunch again or not.

Our second round of IVF surrogacy did not work which was heartbreaking as we really thought it would this time as things went so well leading up to it. The good news is we have six frozen embryos so are due to do a frozen embryo transfer in the upcoming weeks.

I have ordered my new mobility car as believe it or not it's nearly three years since I got my Astra, so also three years since I gave back the love of my life, the Yellow Peril Mini! The good news is I will soon be the proud driver of another Mini! That's right folks I'm getting another one, but a Mini Cooper Countryman this time. She is going to be beautiful! Dark red with a black roof and black tyres, I can't wait to go cruising in her. We are even discussing the possibility of a road trip to France next year in her! I can't decide on her name, either Rollin Roz or Ruby Roz, I guess it's a case of deciding when I see her in the flesh! 

In other good news... I was awarded ESA! The relief is amazing, to know I don't have to worry about been forced to work or go through a medical which I've heard are horrible. I had some problems receiving the new payments which I had to get Mummy to sort out as the people on the phone are horrible, but that's nothing compared to what could have happened. 

Alfie has a new friend called Jasper, he is about 16 weeks old and half Jack Russell and half Chihuahua. he is my brothers puppy and we had to get the dog trainer out to show us how to introduce Jasper to Alfie as Alfie does not like dogs apart from his buddy Murphy. They are getting on OKish now but it's taken a lot of time and energy. Jasper is a mental dog, he never stops moving, he never seems to sleep, he digs, chews and eats everything and he likes to wind Alfie up by runnning around him and sometimes even biting his tail. Alfie being a more mature dog these days (he is now 6!) is not impressed as he just wants to lie back and relax whereas Jasper wants to play. Therefore these differences cause Alfie to tell Jasper off quite often and also me tell Jasper off quite often as he always seems to be running off with something of mine like a shoe or a charger, if you leave anything on the floor he will have it and he is fast! The joys of puppies! Here is a photo of the troublesome trio, from the left: Murphy, Alfie, Jasper - good boys sitting for treats!

Here are a few pictures from the past few weeks

First night out in months as actually felt well enough!

Trip to Bridlington (weather was horrible!)

Trip to the Lakes after failed surrogacy attempt to cheer ourselves up! (weather was beautiful!)

 One problem with Azli... you have to do it three times a day so end up doing it in very random locations!

We were followed by a herd of young cows, it was quite scary! Like the Cravendale advert!

I must admit, things are hard for me at the moment with our second surrogacy attempt failing. I might be doing well CF wise but psychologically I'm struggling, however I'll save that for my surrogacy blog! I do know something though, that after everything we have gone through this year I know I love Pete with all my heart and know we can get through anything together! I am so grateful everyday I have such an amazing person in my life! Hope everyone is well, I will try update again before three months has passed!

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.

The Dreaded Diabetes

I officially have CF related diabetes, lucky me! I was admitted in to hospital last Wednesday to start insulin treatment and stayed in just the one night which was long enough, I swear its enough to make you go crazy. I don't want to be nasty about my CF team as they are brilliant but staying in hospital is hard work as your routine is totally ruined and you are constantly waiting for people to come see you and do not have any idea when they may come in which makes it difficult to do your treatment or get a shower or get breakfast etc. I woke up at about 7.30am and nobody came to see me until at least 10am, I had no idea if I should get my own breakfast or if I was going to be offered a fry up (they do provide fry ups), if I needed my blood sugars checking, if a physio was going to come and see me since I wasn't in because of my chest etc, its just difficult for someone like me who likes routine and to plan the day ahead. Then when someone came to see me she asked me if I wanted breakfast, (erm no its 10.15am I went and got myself some ages ago...) I got in trouble for not having my blood sugar tested beforehand which nobody had told me I needed to do!

So I'm home now and doing OK with the insulin. The needle is 5mm so small compared to the fertility injections I've done in the past and I'm alternating between injecting in my thigh and my stomach. At the moment I'm having insulin with my lunch and tea. I started at two units for both which is a small dose but I've now upped it to three or four units with my tea. I'm having to take my blood sugars before every meal and an hour and a half afterwards plus any time I think I'm having a hypo (where your blood sugar goes too low) which is quite often. For example on Tuesday I had three hypos! I have to learn to recognise hypos as you are not allowed to drive when having one and they can be dangerous if not treated. It's quite easily really since I can't see, concentrate or think properly when having one and I feel shaky and dizzy, so I wouldn't want to drive when having one anyway! I've had to contact the DVLA to let them know I have diabetes and have filled in a form for them regarding my treatment etc.

I remember not understanding why people with diabetes have hypos as isn't diabetes when your blood sugar goes too high (which is called a hyper)?! Well diabetics get both, the aim is to try have blood sugars between 4-7. Hypos can be caused by the insulin injected and then also my body creates insulin at stupid times when it shouldn't, like 2 hours after I've eaten. Also exercise (which can be just walking or rushing around) can cause hypos and not eating for long periods of time. I seem to always get them when I have breakfast really early, for example I had breakfast at 6am yesterday and by 8.45am I was having a hypo, it's totally stupid and so annoying especially when I'd had porridge which is supposed to release carbs slowly!

I'm not enjoying have to do blood sugars and insulin when eating out, I seem to have so much stuff to pack when ever I go anywhere. My bag is just full of tablets and snacks (to treat hypos) and needles etc. Then if I have a dress on I have to go to the toilet to do the insulin as I don't really want to be pulling my dress up in front of everyone!

I'm also doing Azli (Cayston) nebulisers in replacement of Tobi, which is three times a day and I've started doing my hypertonic saline three times a day when I can, as my chest is always really full of mucus by the afternoon. So I have to plan for that as obviously they have to be spaced apart and I'm starting to get really frustrated with how much I have to plan and prepare to do anything at all! My whole day seems to be CF related and I'm really feeling fed up.

So in a day I am doing nine nebulisers, two lots of physio, insulin and at least six blood sugar readings, all my daily tablets plus tablets whenever I eat, having to treat regular hypos and trying to go to the gym at least three times a week. Thankfully my weight is great at the moment (55.5kg) so I'm off supplements for now!

I am also having to apply for ESA (employment and support allowance) which is the replacement for Incapacity benefit which is the benefit you received if you are unable to work due to a medical condition/disability. So instead of just moving me over they are making me apply for ESA and I am terrified I'm going to lose this benefit as I've heard the assessments are unfair and they just assume you can do something on a regular basis if you don't mention it or do it once. Examples of some are the questions are 'can you lift your arms above your head', 'can you pick up a penny', 'can you cut up your food', 'can you learn new tasks' there doesn't seem to be anything about having low levels of energy or having a heavy treatment regime to fit in your day however there is a section on walking which seems more appropriate for my condition. Anyway I've done my best to tailor the answers to the questions to cover my illness and will have to hope its enough.

I asked the doctor I saw two weeks ago to write me a letter of support and she referred it to the social worker who I never see so not sure why she did that, so she wrote me a letter which if I'm honest was pretty poor, I think it was just a standard letter, after all she doesn't know me. She put I did my treatment 'most days' and I go to the hospital to be reviewed every 6-8 weeks which is totally untrue, at the moment it's once a week! So I have asked a different doctor who knows me better to write me a letter which I haven't seen yet but I'm hoping it's more helpful. I need to post the form today as they only give you three weeks to get it all filled in and get your support letter and it needs to be there on Monday, so Pete is having to drive to the hospital to pick up the doctors letter. So I've been rather stressed by it all!

Naughty Blogger!

Oh dear naughty blogger! *smacks hand*

In my defence I've had a rough start to the year with our first IVF cycle with our surrogate ending with a chemical pregnancy (see surrogacy blog for more details). So my head has been all over the place, one minute I thought I was going to be a mummy and the next minute I wasn't. Anyway we are going to be trying again very soon and I hope to have better news on that front next time!

So it has been my birthday and I'm very quickly heading towards the 30 marker! At least I'm an even number now, I'm slightly strange I know...!

Pete and I went for a short trip to the lakes after our bad news regarding the pregnancy, to spend some quality time together, alone and away from everything. I know i really needed it, I'm not sure about Pete. Amongst other things, one thing I hate about not working is the loneliness and troubles it brings. Sat in the same building day after day with only a dog and your thoughts for company. It's dangerous and I really, really want it to start getting warmer so I have the ability and will to get out of the house more often! It's simply too cold to venture out very often, its not worth it with the coughing and breathlessness it brings.

Last Monday I went to see Girls Aloud, yep, fourth time! I think I may possibly have seen them every time they have done a tour. I also booked tickets with my friends last night to go see The Big Reunion tour in May. If you haven't heard about this, it is bands from the 90's reuniting like 5ive, 911 and Atomic Kitten and putting on a massive cheesy concert, it's going to be great!

In CF news I have been told I need insulin treatment and then been told actually I might not do. It's all slightly confusing and annoying and has been dragging on since October! My gluclose tolerance test last October came back saying I have mild diabetes, so I monitored my blood sugars for a week and the dietician decided she wanted me to wear a constant monitor for five days. A small catheter is put in your stomach by using some kind of stapler device (really small needle) and then a small probe is attached which constantly monitors your sugars. You still have to prick your finger four times a day to check the monitor was working properly. You can still shower and even go swimming with this device attached to you so it's not too bad to have attached. I then removed it on my own and posted the probe back to the hospital. Here it is

 I then caught a cold and as usual started to get chest pains, was sleeping lots and had very little energy, after taking oral Ciprofloxacin for a week I went to the hospital for a check up. My lung function was slightly down to 40% so nothing major and the consultant decided to have a good look at my medical history and test results whilst I was there. He decided I could need insulin looking at my results and he wants to try me on a new nebulised antibiotic called Azli (nebulised Aztreonam) rather than having Tobi (nebulised or inhaled Tobramycin). He said I needed to be admitted to start the insulin and he wanted me to have IVs on the ward rather than home IVs to get some rest as I looked stressed (I was). So I was put in the waiting list and said to wait for them to call me. 

After a week of waiting I felt much better and decided I didn't actually need IVs afterall, looks like two weeks of Ciprofloxacin had done the trick for once, seriously, its a miracle! So I called to let them know and turns out my name wasn't even on the board, someone had forgotten to put me on! 

The dietician said I still needed to come in to start insulin as I needed to be monitored. Fast forward two more weeks and several phone calls later and I still didn't have a bed due to lots of emergency admittances and I was getting rather annoyed as I wanted to start the damn insulin and also the nebulised Azli.

The main CF dietician who was now back from her holidays decided she wants to retest me as the probe didn't collaborate very well with my own monitoring. She was very apologetic and explained it seems there has been a lack of communication and misunderstanding with what was happening with me. So yesterday I went for the monitor fitting again and to try the new Azli nebuliser.

She explained everything to me and I will try to explain in how I understood it however I do find the whole blood sugars thing very confusing..... I do get high sugars (over 10) but not really high and not in any clear pattern, I also get low sugars (under 4) so she is worried if I had insulin I would get even lower sugars which is dangerous. If I do need treatment they need to work out what type of insulin I'd need, I didn't even know you could get different types! My HbA1c (a measurement taken from your blood) is 48 which is above normal but a good number for someone with diabetes (apparently the aim is between 48-58). So once they get the results from this monitor they are going to decide what to do with me. 

Diabetes is something that many people with CF develop and is called CF related diabetes (surprisingly!). From what I've read it's a combination of type 1 and type 2 diabetes. Mucus in the pancreas damages the cells that produce insulin over time and the body becomes insulin resistant due to chronic infection.

So I go back in two weeks to get my results and pick up the Azli they have ordered for me as I tolerated it fine (I can't get if from the GP as it's too expensive).

Happy New Year!

I hope everyone had a great Christmas and New Year! I certainly did, it sure made up for last year when I was really ill! I got spoilt rotten, a few presents I got were a Kindle, Lion King Tickets, new coat and a teapot! I don't even drink tea but really wanted a teapot! We also got enough money to purchase a tumble dryer, here is a photo of Alfie watching it. He is not sure about it at all but he'll get used to it as I keep telling him! I got Pete a bike, hence the picture of him on a bike!

 I just finished a course of IVs today, my lung function is up to 43% which is great! My weight is also 55.5kg, the highest in over a year! I'm booked in to have a constant glucose monitor in a few weeks as they still can't decide if I have diabetes yet as I am borderline. They want to decide whether to treat it or not. This monitor involves having a needle in my stomach attached to a monitor for 5 days and constantly monitors my blood sugar level, this way they can get a more in depth view of what is happening in my body.

My IVs this time were not great at the start, I felt so ill and have continued to feel extremley tired all the way through. Hopefully I will start to feel better once the drugs get out of my system. I've had some problems with the company that deliver all my IV equipment. First they send me some sterile hand wash but the pump part didn't fit in properly! The when they delivered my second week of antibiotics there weren't enough and then the day after I realised the ones I'd been using for the past 2 days had expired! So they had sent me drugs that expired before I'd finished the course! This resulted in lots of phone calls from them making out as if I was reading the label wrong or not using them in the correct order, then finally an apology from the chemist and yet another delivery to send me some more. Its not what you need really when you are trying to relax and not feeling well! Its over now anyway, I'm putting it down to some kind of post Christmas problem!

My New Years resolution is be a vegetarian! I already only eat poultry and fish and the occasional bacon sandwich but I've decided I'm just going to try eating fish only, I'm aware this is not a proper vegetarian but I have my weight and health to think about too and I'm such a fussy eater! This came about as I'm tired of feeling guilty about eating meat and hearing horror stories of how animals are treated plus my logic is I will eat more vegetables! So far I have failed twice and it's still January! On New Years day we went out for chinese and I could't resist as we had a set meal and there wouldn't have been much for me to have otherwise! The second time was last Saturday when we got takeaway chinese and I really wanted some chicken! So clearly chinese is my weakness and I'm going to be one of those vegetarians that lapses quite often!!

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.