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

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

Things Are Looking Up

My check up on Tuesday went great, I knew my lung function was going to be better as I feel loads better, almost back to normal. It's a good job too as I could not get parked anywhere! I drove around for 45 minutes looking for a parking space and ended up having to park in the multi storey car park which is a 15 minute walk from the ward, even in this car park it took me 10 minutes to find a space! I have never seen the hospital so busy, there were just cars queuing everywhere. I nearly went home at one point and if I'd have felt as ill as I did the week before, I would have defiantly gone home, as there was no way I could have done that walk especially in this windy weather!

My lung function was 41% which is great as this is about my normal, hopefully I will be able to get it slightly higher. My sats were 94% which is my average however my weight had fallen to 52.5kg. This means my bmi is 19.3 and I was informed that it falls to 19 they will be suggesting I go on overnight feeds until my weight is back up again. I am not underweight, a bmi of 18 and over is healthy however because I have CF they like me to have reserve weight as if I become ill the weight just falls off me as seen over the past 6 weeks and it is very hard to keep or get back. If I became ill again now and my weight fell even more then my body would struggle even more than it was already doing. There is a strong correlation in CF with body weight and better lung function/health. Therefore I have to put weight back on even if I don't want to, because it's better for my body. My bmi was about 20.5 before I got this virus so I guess I need to get it back to there, it's so annoying though as I am quite enjoying having a nice flat stomach and I know as soon as I put weight back on it will all go on my stomach. I might have CF but I am still a woman and have body issues!

I know whats best for me though and I am aiming to have 3 ensure plus' a day which is an extra 900 calories on top of food, or 2 ensure plus' and one skandishake which is an extra 1200 calories a day. My favourites so far are strawberry and caramel ensure plus', in fact I am enjoying them a little too much now my appetite has returned and worried I'm going to become a right fatty!

I also have to reduce my steroid dose by 5mg every 5 days until I am on 10mg, then stop them. So fingers crossed I won't be getting a bloated face and my sleeping pattern will be back to normal soon! I am continuing on the voriconazole for a month and then hopefully coming off it, I've already noticed my hair seems more dry and thin, sigh.

My CRP last week was 56 so still quite high as it should be under 10 and it was 33 when I came out of hospital, however I had my blood taken again on Tuesday and nobody has called me, so I assume it has fallen!

I'm starting to go to the gym again and walk Alfie, so things are finally getting back to normal. I took Alfie for a 20 minute walk on Wednesday in the windy weather, then did 10 minutes on the treadmill and 10 minutes on the bike. I am not starting up yoga again yet as I feel I need to increase my fitness slightly before I do an hours class, so I think I will just go to the gym again today and perhaps do some sit ups too!

So overall things are looking up, I just need to work on the weight and get fit again!

PS - If you read my surrogacy blog don't forget to keep checking it as hopefully it will be full of lots of updates this year!

Christmas

I hope everyone had a wonderful Christmas and Happy New year for tomorrow night!

I am typing my blog on my new laptop, yes I have a new laptop! So hopefully no more waiting half an hour for things to load, I did just have my brother around sorting it out for me though as my Internet was playing up. I'm now on Google chrome apparently which is better.

I was very spoilt this Christmas, I also got a new phone, so now I can go on the Internet on my phone and it's not touch screen so I can actually text again without getting very annoyed at my phone! I got three charms for my Pandora bracelet, DVDs, PJ's, dressing gown, clock and mega drive games you can play on the x-box along with many other gifts! So I have been playing on Sonic, Sonic 2, Sonic and Knuckles and Golden Axe all week, I'm not as good as I remember! I have so many memories of playing on these games with my brothers, writing down what to do on each level, such geeks!

I felt really guilty actually as I only had four presents for Pete, there was supposed to be five but one got lost in the post! I wasn't well enough to go shopping once I got out of hospital so my pile for Pete was rather small. Pete finished my Christmas shopping off for me and wrapped everything, but I can't obviously get him to do his own! We managed to get the Christmas tree up on the Thursday before Christmas, but only the 6ft one and not many other trimmings, but at least there was something on the day to make us feel the part!

I didn't have the best Christmas, just because I felt so terrible. The food, people and presents were great, just my body that wasn't. However I tried my best but to be honest I was dreading Christmas Eve-Boxing Day as we had so much planned and I had no idea how I was going to do it. When you get so breathless so easy everything is such hard work, even going to the toilet, every action takes so much effort. Last Thursday I practically stayed in bed all day and even turning over in bed was making me breathless and cough terribly. It's so hard to describe and until now I don't think I've ever experienced it and could not imagine what it could be like. I couldn't cook anything as I couldn't face walking in to the kitchen, I most defiantly could not shower or bathe on my own, I had a shower one day and ended up sat on the the bath floor because I tried to wash my hair. I was obsessing over things I was going to have to do which would make me worse, like at Pete's parents I knew I'd have to walk up the stairs to go to the toilet and I had to think of clothes I could wear without a bra as bra's just make me feel constricted.

Anyway I managed to get through the festivities and did start to feel slightly better on Boxing day, however the day after I felt terrible again. It's disappointing because anyone who knows me knows I love Christmas and I still had a good time, I'm just angry at my body for making a fun time of year even more hard work and worrying for me.

I went to the ward on Wednesday and the good news is that my sats were 96% so that's an improvement, my fev1 was 33% and my weight was 52.9kg so I'm 5kg down. They are now becoming anxious about my weight so I have lots of supplements to try and I'm trying to have 900 calories a day in supplements. I'm having a ensure plus which is 300 calories to sip on in the afternoon and a skandishake in the evening which mixed with full fat milk is 600 calories. There are all sorts of supplements, some come made up and are like a milkshake like the ensure plus, some are like a fruit juice (they are horrible but okish if mixed with lemonade). Then skandishakes and build ups are a powder you mix with milk so more difficult to make but taste slightly better.

I have also been put on Prednisolone 30mg (steroids) and damn Voriconazole again! My CF team do not like to use steroids unless really needed, they have alot of nasty side effects such as thinning bones, upsetting blood sugars and other things I don't really know about. Two things I do know they cause which I dislike is a moon face (although only usually if on them for awhile) and insomnia. I only had 4 hours sleep last night! The good thing about steroids is I already feel loads better, its amazing! They make you have lots of energy and my appetite is already better too! The Voriconazole I know all about, no doubt I shall feel like a vampire soon because they make you sensitive to light and my hair will start to thin again. Hopefully I won't hallucinate this time!

So I am feeling so much better already its unreal, I can do things again! I am at the hospital again next week but fingers crossed my lung function and weight will be up and this will be the end of the silly cold that ruined Christmas!

Home

At the start of last week everything seemed to be going well, my crp went down to 20, my lung function went back up to 42%, my headaches had gone and I didn't need oxygen when exercising anymore. I can't remember if I mentioned this, but for the first few days my sats were dropping below 90% when I did exercise in the gym so I needed some extra oxygen. Ideally a persons sats should be over 95% but anything under 90% is not good.

However they decided to keep me in for the full 2 weeks to see if I could improve anymore, I was abit disappointed but agreed. By the end of the week I felt so ill again, my sats on the Friday were sitting at 89-90% when I was resting and they mentioned I might need extra oxygen, I was supposed to have 4 hourly observations to check this but it never happened. I needed oxygen when exercising again, my sputum was thick and dark, I was sweating again during the night and my lung function fell to 30%. My crp went up to 33 however my bacterial count was still going down which was good. I had an overnight oximeter as your sats tend to drop when you are asleep and since mine were low already they thought I might need overnight oxygen. My average sats overnight were about 89.6% so not low enough to need oxygen just borderline.

I was fully prepared to be told I would need to stay in or at least go on home IVs but to my surprise they said I could go home and return next Wednesday to be checked on. Apparently my Xray shows an improvement and they are please with my progress, I'm not sure how I feel about this. I told the Doctor I was concerned about my lung function and I am breathless just walking around, getting a shower etc but he was adamant I was to go home and see how I coped in my home environment. I had a walking test on Tuesday and my sats are dropping to 88% when I just walk, which is borderline again, so I have to have another one next week. They seem to think it's all viral and I will pick up once it has gone. I had a CT scan yesterday to look at my lungs in more detail and check there is nothing going on they don't know about.

So that's it, I have been shipped home and I feel like a bag of crap if I'm honest. I have nearly been sick twice already from coughing, I am getting out of breath just walking around the house and I'm so tired I just want to curl and disappear. On top of this its Christmas in 3 days and I still have shopping to do, a tree to put up and then obviously Christmas it's self is going to be exhausting.

My CF team said to call if I can't cope but what exactly are they going to do over Christmas? All my family were stressed when I was in hospital and I hate being in there. They are always bugging you and forgetting stuff or bring it like an hour after you ask, they ask you to pass them stuff and wake you up trying to put your IVs on. One night I woke up with a terrible headache pressed my buzzer, the nurse stood at the door shouting 'yes Gemma what do you want' (because I was in isolation they all had to put gloves and an apron on to come in my room so preferred to stand at the door and shout stuff to me and ask me to pass them stuff or take stuff from them.....lovely) and then when she brought my paracetamol she turned the light on! The food is horrible, I've lost 4kg whilst in there, a combination of a poor appetite and horrible food.

I'm so worried that this is it, I won't get my lung function back up, I'm terrified. I can't live like this, I really hope I feel better by next week.

Wonderland

On Saturday it was Pete's birthday, he is now the same age as me again. I don't like that few months gap where I am older than him! I'd already bought Pete some clothes for our holiday back in May as part of his birthday present so he wasn't expecting anything from me, however I got him some surprise tickets to go see Jack Whitehall (a comedian) in November so think he was pleased!

On Saturday night we went to someone else's birthday party, it was fancy dress, Alice in Wonderland theme or wear a funny hat. I went as Alice as Tori lent me her outfit which is currently getting disinfected to return back to her. If you remember, Tori got a lung transplant last year in May and I don't want to give her any of my infections, so I am cleaning the outfit with Vanish oxi hygiene which claims to kill 99.9% of bacteria, it's in the washing machine as I speak after having a soak for an hour. Pete was boring and wore a hat or mine, he ended up looking like someone from N-Dubz haha!
Then on Sunday we went to the Lakes for a few days away, we are so lucky that we can go to the Lakes as many times as we like, within reason of course! Alfie can come with us and it doesn't really cost us anything. The Lakes will always hold a place in my heart, its where we got engaged!

The walk we went on, on Monday was too long, I over estimated myself and had strop half way as I was too tired and my lungs were on fire. The walk was on really rocky ground and it was so tiring, poor Alfie struggled at times and had to go in the bag for a rest at one point. Sadly I didn't fit in the bag and Pete had to give me a telling off when I refused to go any further. We turned back once we saw a hill we had to walk up, no way was I going up there, Norman let us down this time, the walk was poor and was not on the level! To finish the day off the pub we really like and was looking forward to going to, doesn't do food on Mondays (!) so we tried this other pub and the food was rubbish!
However Pete and I are not ones to be put off, so we tried another walk on the Tuesday, shorter and alot more friendly! I have learnt my lesson, my body and lungs will only allow me to do walks of 3 miles or lower on level, none rocky ground!
Needless to say I am exhausted now. I think overall I have spent more time sleeping this week than not, I've woken up at about 10am or later every day and slept in the car when travelling whenever possible! Even though walking totally tires me out, I like to go on walks as it reminds me that even though my body is poorly, I can still breathe and walk and although not as good as others, I'm alive and functioning! Feeling tired means I know I have tried my hardest and I've pushed myself, I suppose its a feeling of self satisfaction like someone who does a sponsored run, its my version...! In a way if I don't feel tired I feel like I'm lazy, it's my way of knowing I've done all I can for the day.

Pete has taken the rest of the week off work and today we have bought some plants for the garden and planted them. We bought a strawberry plant, I know it will probably die within a month as I have no idea what to do with it, but it will be fun to try..! I wore a mask when digging in the compost as I've read lots of bacteria are in there including cepacia which is a CFers worse nightmare from what I've heard, patients with this on their lungs aren't even allowed on the CF ward! So call me paranoid but I wore a mask left over from when we decorated.

Walking on the Level

Hello!

Sorry again I haven't posted for awhile, I guess it's a good sign because it means I'm busy which means I am feeling good!

We came back from the Lake District yesterday, we went Sunday to Tuesday and had a lovely time. My brother and his girlfriend were supposed to come with us, but her Grandad sadly died on Saturday night so in the end my brother still came after some persuasion! It rained on the Sunday so we just stayed in playing boardgames and cards and drank, and and went out for a meal at he local pub. I was designated driver that evening, the house is in the middle of nowhere up a massive hill which involves driving up a long, windy road and in Pete's car which I'm not used to driving, it was an experience to say the least. Pete does most of the driving when we usually go to the Lakes, so I'm not really used to it! We got home in one piece and I only stalled twice so I can't have be that bad...!

The next day we went for a walk with a stop at a pub halfway and then on Tuesday my brother left early and Pete and I went for a walk around Grizedale Park on one of the easy routes before heading home. If anyone is going to the Lakes and wants to go on walks but is like me and pretty rubbish at walking due to CF or anything else that limits your mobility, you should purchase a book called 'Lakeland Walking on the Level' by Norman Buckley. We have just purchased the second edition as its great for me, there is no way I could do alot of the walks in other books as there are just far too many hills, there only needs to be a small slope and I'm coughing and breathless. These walks try to be as flat as possible, yes there are still slopey parts, it is the Lake District after all but they are perfect for people like me. The walks vary from about 1 mile to 7 miles and often it has short cuts if you are getting tired. It outlines how much rise and fall there is at the start of each walk so you have an idea of how hilly its going to be too.

I'm tired today after our trip so going to take it easy and leave you with these photos!

Busy Weekend

I've had a busy few days so think I'm just going to relax today and take it easy, I might attempt to go food shopping and walk Alfie, but we'll see!

On Friday night we went for a curry with my dad and his partner and my brother and his girlfriend which was very nice and I also had a few glasses of wine.

Then on Saturday we went to a surrogacy social event, which involved doing a two hour walk. Not the greatest idea for me to agree to take part in, but needs must and all that! As we got closer in the car I kept commenting to Pete how hilly it looked and started to panic! I really don't need to be coughing my guts up for two hours in front if people I hardly know and when I'm trying to make a good impression! At the start of the walk there was an easy route and more difficult one and we were all to meet up about 15 minutes later, I do not think labelling it 'easy' was the correct term. There were two really steep bits so not easy (!) but I managed OK and then once we were on flat and going back downhill it was even better. I think I would have struggled if I wasn't feeling great, but since my chest is feeling good at the moment I managed. I slept well on Saturday night anyway and coughed some very thick sputum up in my physio session that night! I really had to push myself to do my physio, I hate doing it when I feel really tired, it's the last thing you want to be forcing yourself to do!

On Sunday we went to a barbecue at Pete's parents as it was his sisters birthday. The weather was beautiful and we had a good day just sitting in the garden. Here are some pictures

Pete's sister the birthday girl!

Pete's sister, baby due in 11 weeks :o)

I couldn't sleep at all on Sunday night and managed to get about an hours sleep, even though I was so tired. I hate it when I can't sleep but then I'm too tired to try and do anything else! I can't understand how your body can not fall asleep when it's so tired!

On Monday my mum and I went to this barber workshop that was supposed to be on 3D patterns but it was like a basic barbering course, we managed to sneak out before the end. We sat there for two hours and didn't even get a break or offered a drink and the chairs were so uncomfortable! Couldn't wait to get out!

In the afternoon I had a flight test as we are going on holiday in a month, wahoo! I just managed to pass the flight test. When you have a flight test they put some gel on your ear for 10 minutes and it heats up your ear so it bleeds more. They then cut it , and collect some blood from it in a thin tube. They put the blood in this machine and it sucks it out of the tube it then gives some numbers about blood saturation levels and CO2 levels. They then put a monitor on your finger to measure your stats and then attach you to some oxygen and you have to wear the mask for about 20 minutes. During this 20 minutes they deliver you lower %;s of oxygen as what would happen on a flight. My stats were 94% at the beginning and the lowest they dropped to were 88%. After 20 minutes they cut your ear again and take some more blood and take the same measurements in the machine, they then remove the oxygen until your stats have returned to normal.

I am still sitting on borderline, which means on short haul flights I'm OK and don't need oxygen, but anything longer than 5hours+ and I'm going to need oxygen as I could start to feel unwell such as feel very tired, sick and get headaches due to low levels of oxygen and even end up having a collapsed lung.

I then had an outpatients appointment but they had arranged to see me on the ward at St James since I was already there for the flight test. My lung function is 41% and my weight is 55.7kg. So overall I'm stable and although my lung function isn't the highest it can be, it's sitting at about my average so they are happy with me and I don't have to see them again for 6 weeks, fingers crossed! I also had my port flushed which went fine, got my letters to take with me on my holiday (one says I am fit to fly and one says I need to take my medication with me for medical purposes i.e I'm not a drug dealer!), got a prescription for salt tablets for my holiday and off I went very happy! I need extra salt when I sweat as people with CF lose alot of salt and can get ill if it's not replaced, so whenever I am in a warm environment I need to take salt tablets. I took some at the weekend too as it was quite warm then. If I don't take them I tend to feel very tired and my body aches, especially my legs!

Ps- Sorry about the massive gaps between paragraphs, blogger is a pain lately and I can't get it to leave smaller gaps!

Revenge of the Sputum

Well I'm starting to feel slightly better in myself but I can't really say things have improved chest wise yet. I'm coughing less but when I do cough it's so productive and gloopy that I can't budge it especially since my airways seem to tighten up. I went to the toilets in Wetherspoons today which were upstairs and when I got into the cubicle I coughed so hard I started retching and proceeded to bring up some sputum unexpectedly. Luckily none went on my clothes and I grabbed a tissue before it projected out of my mouth! Not the highlight of my day but never mind!

I also kept waking up last night feeling like I couldn't breathe and taking big gasps on air in. It felt like there was a blanket of sputum over my airways, and when I breathed in it made a really loud wheezing noise and loosened the blanket but then when I tried to cough the sputum up I couldn't! In addition to this my sputum has had tiny dots of blood in it, nothing serious but it's still worth noting. Needless to say there is some freaky stuff going on and I just want to get back to normal please!

Yesterday I went to Scope and got a free mini massage. They arranged for a lady to come and do a taster session and I asked her to focus on my shoulders and back as they are tight from all the coughing. I'm thinking about booking a session as it might help with my posture and help me cough better. Just depends on if I can afford it really! My yoga teacher suggested I get a massage to help relax the tension since I can't go to yoga classes whilst on my IVs, so maybe I will!

Today I was supposed to meet my new mentee for an introduction session which is why I was at Wetherspoons, but she didn't turn up. So instead me and the other lady from Scope had some lunch so it wasn't a wasted journey! I had a curry that tasted more like a chinese, very strange!

Other than that I've been reading my book and learning quite abit about the first world war in the process and doing my knitting! I'm ashamed to say I haven't taken Alfie out for a walk yet this week, but at the end of the day that's why we got a small dog that doesn't need much exercise. A good run around the garden after the birds keeps him fit and I have promised him I will take him for a walk tomorrow! That's about my week so far! See you later folks!

Parking and Walking

Well our boiler is fixed and we have heating in our bedroom, wahoo!

I haven't been up to much really, I'm trying to go to yoga twice a week as I can't seem to be able to force myself to go swimming when it's cold! The usual has happened at the gym, it gets cold and snows and everyone parks in the disabled bays! So when I went last Monday the only spaces left were ones right at the back of the carpark, so I parked right in front of the entrance, halfway on the pavement. They clearly have no intention of doing anything about people parking in the spaces, so I shall park there from now on if necessary.

I started my voluntary work again on Friday and have a new mentee, she seems nice and I'm meeting her again in two weeks. We were chatting for about two hours!

On Friday Pete and I met my brother and his girlfriend for a few drinks at the pub, I got to drive Pete's car for the first time since he got it as I was the designated driver for the evening. Pete thinks his car is better than mine because it's a BMW, well now it's snowing we will see who has the better car since his is a rear wheel drive and was sliding around on our road yesterday, he is working form home today which means I have to put up with him haha.

We went for a meal yesterday for late lunch/early tea. It started to snow again whilst we were driving around and we did consider going back home, however we were too hungry! We had to park near the restaurant as obviously I cannot walk far at all in this type of weather, we literally parked less than five minutes away and on the way back I was coughing really hard. So we parked on double yellow as with a disabled badge you can park on double yellow as long as your car isn't causing an obstruction which is wasn't as far as we could tell. When we got back, we had a parking fine!! A ticket officer was walking past so Pete queried the ticket, the man said there was yellow lines on the pavement which means nobody can park there, I know this and if we had seen them we wouldn't have parked there but they were completely covered in snow! The ticket man said if we took photos and sent an email we would get the ticket removed (he hadn't issued it so couldn't remove it), so fingers crossed it gets cancelled!

Sometimes I wonder why everyone seems to make parking so difficult for people with disabilities, do people think disabled people disappear in winter so their spaces are available for others to use, or that we can see things through the snow? Perhaps I shouldn't be trying to have a normal life and stay inside all winter. All I want to do is go to yoga or go for meal without having to walk far and end up coughing my guts up!

I imagine a few people wonder why I can't walk far from my car but then I can take Alfie for a walk. So let me explain........ When I take Alfie for a walk I wrap up really warm, I even put tights under my jeans and wear thermal socks etc. I do cough at first because of the temperature change, but I'm expecting it, I am prepared and I accept it as I'm going for a walk and I know in the long run it's good for me to get the exercise. Afterwards I come home, get a warm drink and sit down and recover.
When I'm out and about doing the things I do, I'm not wrapped up as well, I'm constantly going into different temperatures so my chest can't adjust. I can't recover and it's not nice to be constantly having a coughing fit and people looking at me and commenting on my cough.
Think of it like this - people go to the gym and jog for half an hour on the treadmill, but they wouldn't want to jog everywhere would they? Well walking Alfie is my jogging, but I don't want to be 'jogging' all the time do I?!

Hello Good Week?

Well last week turned out to be a pretty horrible week really!
We already had the problem with the damp and the boiler and now I seem to have lost my sat nav! No idea how, but I usually keep it in the car, went to get it out and it's gone! I've looked everywhere I can think of and it's nowhere to be seen! I haven't left it in the Mini, as I've used it since then so who knows where it is!
The boiler is definitely broken, luckily a friend of a friend is fixing it for us, it needs a new valve or something. They were going to fix it on Sunday but had the wrong part, so now it will be getting fixed on Wednesday. In the meantime we just have to keep topping up the pres sue when it falls below 0.5 which is happening about 3 times a day now. Also they are going to sort out the radiator in the bedroom hopefully as it has never worked since we moved in, heat in the bedroom! Wahoo! Going up the world...!
My brothers friend came to look at the damp on the wall and he thinks its nothing serious and needs to do some pointing on the wall outside, so he is going to get back to us.
So fingers crossed, we won't end up shelling out loads of money to get things fixed which is a huge relief!

On Friday night I had to take a sleeping tablet as I just needed to get some sleep! They are some tablets my CF team gave me ages ago and I never took them. Sleeping tablets are quite addictive and not good for people with breathing difficulties so they don't like you to take them really. I'd never get some over the counter ones as I don't know what I can and can't take. Anyway it helped me sleep and I only woke up about twice, compared to about 10 times and then it taking me about 2 hours to fall back asleep each time or not falling back asleep at all! I can't understand why I have become such a bad sleeper, I used to be the opposite and sleep all the time and quite deeply, now the slightest noise wakes me and I just can't nod off. On Saturday I was tempted to take another tablet but I didn't and I managed to sleep quite well last night, so hopefully things are improving. Laying awake in bed for hours makes you so miserable, then the next day you are so tired, it makes no sense!

Yesterday I didn't feel too well, my whole body ached and my sputum tasted horrible which meant it was affected my taste buds and I just didn't fancy any foods. I make a skandishake and the stupid stuff sprayed everywhere so then I had a strop! We did manage to take Alfie for a walk but ended up getting takeaway rather than cooking a risotto which is what was planned. Today I feel better so hopefully it was just the end to a bad week and today will be the start of a good week!

Oh there is one piece if good news, I finally have my flu jab booked for the 1st December! Miracles do happen! Also I got my first delivery of Christmas presents that I ordered last week, I tend to try do most of my shopping online as I hate shopping, all that walking and carrying stuff is too tiring and it's too busy!

Happy Me!

I had outpatients today and I am so happy! My lung function is fvc 62% and fev1 46%! Wahoo! That's the highest it has been since September 2009!

My weight is 54.4kg so I got in abit of trouble as apparently it is slowly dropping, so I need to keep an eye on it. I asked the dietitian at what point would she get worried and she said if my bmi dropped below 19 which is 51kg, so I think she needs to just chill out to be honest...!
They are retesting my fungus levels to see if they can think about taking me off voriconazole as I've been on it for about a year now and since no-one has been on it long term and I'm their guinea pig, they don't want to keep me on it too long!

Pete and I went for a nice walk yesterday with Alfie, we haven't done it for ages, not sure why. I guess you get so caught up in life that you forget to just have time in each others company talking, with no tv on or not making tea, doing physio etc. On Saturday night my friend came around and we watched this terrible film called 'The day the Earth stood still', I wouldn't recommend it!

Anyway that's it for today folks, I'm still buzzing from my results at clinic!

Rainy Anniversary!

I'm back from the Lakes and I'm tired so this will be a short blog.

We had a great time even though it rained alot of the time! We managed two walks, one was about an hour long around Grizedale Park and the other was 3 hours (!) by Coniston lake, we had a picnic by the lake during the walk, it was very nice. We found the walk in a book where all the walks in there are flat i.e. no uphill bits. It's like the book had especially being made for me! :o) There were still a few uphill bits that I struggled with (Pete picked one of the more difficult ones out of the book...) but nothing a person with healthy lungs couldn't cope with, it would be very difficult to find a completely flat walk in the Lake District, afterall it is very hilly! Needless to say I was tired afterwards and had to have a nap and I'm still tired today so just taking it easy.

Oh and I did it again, I forgot to take spare disks for my I-neb...! So only had 12 cycles when I do 9 a day! Had to cut out my hypertonic saline and only do my tobi once a day, this cut it down to three cycles a day. So had a nice break from my nebuliser regime for a few days!

Man makes fire with help from wife...Stylish as ever!Our Wedding CandleHow cute am I?!

Wedding Anniversary!

I've added an extra icon on the side of my blog to show what I am reading at the moment. I have copied this off another blog and thought it was a good idea as if you are like me, you enjoy reading but never know what to read! My local library is not the type you browse through, you have to tell them what you would like to borrow and they will order it in for you. This means you have to know what you want to read, therefore I like to know what others are reading to give me ideas! The book I am reading at the moment is mine, not from the library and I've already read it once but I absolutely love it so reading it again! I just finished 'If You Could See Me Now' by Cecilia Ahern (author of PS I Love You).

Big news, I have changed my hair colour! My hair is now a strawberry blonde colour, which is not ginger as people keep saying it must be. My aim was for a very light brown with a pinky colour to it, it's stayed blonder than I hoped, but that is because of the bleach still in my hair, it just needs to grow out, you can see the proper colour on my roots where there is no bleach! I tried to take some pictures but they don't really do the colour justice

Since I finished my IVs last week I have been feeling tired very easily, in fact I am feeling quite annoyed about it. I already seem more chesty and am getting breathless easily. I went to yoga on Monday and I got so breathe less I thought I was going to have to sit out for awhile, we were doing all these stretches stood up, called warrior one, crescent moon etc

I always find them harder as it is, but all I could do was think about trying to breathe and then the yoga teacher was moving my arms and hips to get me to do the positions correctly and I just wanted to scream at her 'I can't breathe never mind do the bloody stretches correctly!'. I pushed myself to keep going though as I don't want to be the odd one out, I hate appearing weak! So even though I felt like my face was going to explode because it was red from lack of oxygen or something and I was breaking into a sweat, I kept going and managed to not collapse in a heap. After relaxation I swear I had to shout at myself in my head to actually get up and drive home, then the rest of the night I just laid around as I had no energy.

So no I am not happy with my stupid CF this week, especially since we are going to the Lake District for our wedding anniversary and were planning to go on some walks.

Yes that's right, on Saturday Pete and I will have being husband and wife for a year! I can't believe it, it's gone so fast. I feel so lucky for having bagged myself such a great husband and I can safely say that marriage has not somehow made our relationship deteriorate, as all these TV programmes would make you think. According to them we should be getting divorced by now right...?! I love Pete so much and I can't wait to spend the next year with him, and the year after that and forever!

Here is a little video I have made for us

OK So Far!

Well I'm half way through my IV's now and it hasn't being too bad. That's why I haven't blogged because I have been quite busy and then couldn't be bothered the rest of the time!

The nurse called me earlier in the week to see if I wanted to increase my ceftaz dose to 3g three times a day for the second week, I had no idea they had put me on a lower dose of 2g, three times a day, which probably explains why I haven't felt so sluggish or got sore eyes! So I agreed and hopefully because my body has gotten used to the antibiotic, it won't hit me like a ton of bricks like it did last time I was on IVs!

My cold has gone, my nose is no longer runny, there is still gunk at the back of my nose/throat, however I get this all the time anyway so I'm not expecting it to go. I must admit my sinus rinse has been a godsend whilst I've had this cold, it has helped me to clear my nose and prevent headaches. Infact thinking about it, since I started doing the sinus rinse months ago, I have hardly had any headaches, it's great!

The hypertonic saline nebs are going well too. I'm coughing more up during my physio sessions, I've usually filled the bottom of my sputum pot just doing the nebuliser, before even moving onto physio! This means my chest feels clearer in between sessions and I'm not coughing as much. I've noticed that the hypertonic saline soon wears off, perhaps 15 minutes after doing it, which means that physio does get harder towards the end of a session which isn't great, however it also means the effects don't carry on once I have finished which is obviously a good thing. Don't want to spend the next three hours coughing my guts up, I don't think that would be very helpful!

Since I am on my IV's at the moment I have not been doing my tobi neb, so it will be interesting to see how I cope doing five nebulisers a day, I'm sure it will be fine, it just means i'll have to get up even earlier on a morning if I need to be ready by a certain time! It does get ridiculous how long it takes me to get everything done on a morning!

I've been thinking about how I would cope if Pete and I were to have a baby and how much help I would need. I've discussed with Pete that he wouldn't be able to stay at work so late everynight and then I was thinking about ways that my family would be able to help me. It's hard to plan for something that A) you don't know is even going to happen and B) you have no experience of! The things I'm mainly worried about are: lack of sleep and it resulting in me having the energy to do nothing and arguing with Pete because I am grumpy and also not having the time (and energy) or ability because I have a child jumping on me etc, to do my physio and nebulisers etc. Also, how would I have time to watch all my TV shows?! Important things need to be considered!

I went to Ikea this week with my friend, oh the joys of following arrows around the WHOLE shop when all you wanted were a few bits and bobs... I really do hate that place! I have also planted some bulbs in the garden, tulips, daffodils etc. So hopefully next spring we will have a nice colourful garden! I walked Alfie with my dad and his dog this morning, Alfie hates my dads dog and now I think my dads dog hates Alfie too! Alfie did calm down throughout the walk, he stopped trying to attack him and even sniffed him abit, but that was as far as it got. A few more meetings are required I think!

Back in the North

Don't worry I'm still here, just about anyway!

London was brilliant, it has totally wiped me out though, hence why I have not blogged until now. London is evil, there are stairs everywhere. Next time we go I am refusing to get the tube, its bad enough struggling without people barging past you (everyone is in a rush in London) and trying to hurry you up. My body ached from top to toe, I was so tired on Wednesday that it was affecting my breathing, I guess I was trying to use as little energy as possible to breathe. Anyway all that aside here is what we got upto

On Tuesday after we arrived we went to the History of London Museum, I have no photos because you aren't allowed to take any. Then in the evening we went to see Henry VIII by Shakespeare at the Shakespeare's Globe, abit of interesting information for you, one of the first times this play was ever performed in 1613, a cannon shot burnt the Globe to the ground. Luckily that didn't happen when we went! The Globe theatre is not indoors, its a circle and if you are sat along the side then you are undercover, if you are stood in the middle you are not, and if it rains you get wet. Which it did, luckily we had posh seats at the top and so stayed nice and dry! The play was brilliant, the costumes were amazing, I really enjoyed it. Here's a picture of the set

Commoners getting all wet haha!

Lords and Ladies - nice and dry :o)

On Wednesday we went to National Gallery and it was very exciting because I got to see two paintings I really wanted to see. The Ambassadors (1533) is by Hans Holbein the Younger (see below, I managed to sneak a photograph of this one) and The Execution of Lady Jane Grey by Paul Delaroche (I couldn't sneak a picture of this one but below is one off the Internet). I won't bore you with information about these paintings!

Then Wednesday afternoon we went for a tour around the Palace of Westminster. Again no pictures were allowed, I swear you are not allowed to take pictures anywhere, there was even an announcement when we were on the tube that you can't take pictures on there! Don't give me any of that rubbish about its for security or its because it's historical, the house of commons is on TV every day live, so I don't think a picture of me stood in there would have harmed anyone. It's because they don't want their tours slowing down and people stood taking millions of pictures, getting in the way. Anyway rant over... The tour was really good, we went in this room called the Tudor and Stuart room, well you can imagine how happy I was in there! There were no MP's in sight, they are all in recess at the minute, so us commoners have the chance to look around, but we are not allowed to touch or sit on anything, heaven forbid! We were allowed to take pictures of Westminster Hall (wahoo!), this was where the trials of people were held such as William Wallace, Charles I, Guy Fawkes and Thomas More. Also they found a tennis ball in the roof that dates from when Henry VIII was King, so he may have played tennis there!

Wednesday evening (by which point I felt like I was dying, but happily!) we went to see the play Anne Boleyn at the Globe again. This play was quite funny and easier to follow as it was not Shakespeare, here's the set for this play

On Thursday we went to Windsor Castle, I would not recommend going here. It is far too overpriced for what you get to see and it's not even a very nice looking castle. Plus you spend half of your time queuing! Anyway we went because Henry VIII is laid to rest in St Georges Chapel with Jane Seymour, there isn't much to see though. They are in a tomb under the ground so all there is, is a plaque on the floor. Not sure if Henry would be very happy with that! The state apartments were nice to look around and I admit there are some interesting paintings on the wall including some Tudor one's, but to be honest I was so tired I was ready for home! Again no photos were allowed inside....

Here are some other photos from the trip

We like escalators!

I went to outpatients today (at 8.50am ekkk!!) and I am starting IV's on Thursday damn it! But I shall go into that in another blog as I think this one is long enough and I've probably bored you with all my information!