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

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!

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).

12 Weeks!

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

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

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

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

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

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

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

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

Aftermath of a Busy Weekend

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

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

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

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

Busy Few Weekends

Well I think a blog is overdue!

The filling went fine, I only needed one in the end and that needle they use to put your local in is tiny and hardly hurts! The most annoying part of the whole process was having a numb mouth for about 4 hours afterwards! The dentist left my chair up a little so I wasn't flat on my back as that would have made me cough, not good when she is in the middle of drilling in to your tooth.

I am back to normal now off the steroids, so no getting up at 5am or having enough energy to take over the world. It's a shame really, I did enjoy it whilst it lasted!

Three Saturdays ago we went to an engagement party at an Italian Restaurant which included a delicious buffet. The problem was that stupid moi forgot to take my nutrizym with me that I need to digest my food. Therefore I knew if I ate loads I would get a horrible, sore bloated belly and spend many smelly hours on the toilet the next day! So I ate some and then had to sit and watch everyone else stuff their faces with pizza and pasta, so unfair! It seems I drowned my sorrows by drinking too much and ended up going to this pub near where I live afterwards with my friend where I did lots of chair dancing. This is dancing whilst sat in a chair as you know if you do proper dancing you will get out of breath and cough loads which is very embarrassing.

The week after we had two of our friends from University come up from Cambridge and stay over. We all went for meal on the Saturday night with my brother and his girlfriend (who we also went to Uni with) then on the Sunday we went to Sheffield to meet with some other Uni friends. It was nice to catch up and see how everyone is doing.

On the Monday (last Monday) I was very tired and Tuesday morning hey presto I woke up with a cold which I still have. I went to Outpatients on Friday and my fev1 is still 41% so unchanged however my fvc has fallen, my weight is up a kg to 53.5kg and my sats were slightly low at 93%. They were ohhing and ahhing about if I should go on IVs, I said I felt I didn't need them yet so they flushed my port and took some blood to check my crp (infection) level and are supposed to be calling me today. I do feel rough (I hardly did anything last week, just stayed in and had lots of naps!) and I'm scared I will get ill again like before Christmas, so I think I am going to go on them, I'll see what they say when they call anyway.

Last Thursday was my Birthday! I got lots of money which I am saving to go on holiday, some clothes vouchers and some toms (shoes) from Pete. On Saturday we had a house party, lots of people didn't turn up because it just had to snow the day of my party, typical! Pete went to pick my brother up and got stuck at the bottom on a hill on his way there! I was seriously panicking nobody would turn up but thankfully they did and Pete managed to get out eventually and come back home! The theme was the 90's so it was all 90's music and I also did a 90's quiz, obviously fancy dress was a requirement too!

I said in my last blog I had a few busy weeks coming up and I did! I guess IVs was to be expected in a way so I'm not annoyed really, I think I was allowed to have a few fun weeks since I didn't really get to have fun over Christmas!

2 Years Later

Well I had a great weekend last weekend and I swear I should get a medal for how compliant I was with my treatment and it wasn't easy I tell you! On Friday we went to a wedding and had a great time and then on Saturday we had a surprise birthday party for my Nana as it was her 80th Birthday. She was so surprised especially since her two sisters had managed to make it over, she cried and everything so I think the surprise went quite well! I spent Saturday night and Sunday very tired and asked my brother to hint to my mum we would like to go around for tea, his hint went something like this 'Gemma and Pete want to come around for tea', it worked anyway!

Here are some pictures from the wedding


Some pictures from my Nana's party

My constipation has been getting worse and worse, I was up to 4 movicols a day and nothing was happening so on Friday I gave the hospital a call. I had to go in so they could have a feel of my belly and this confirmed I was 'full up'. Because I wasn't sick or getting extreme pain they didn't prescribe me the really strong stuff, they prescribed me Bisacodyl, 2 to be taken at night to clear me out. I have to cut it down to 1 a night after 5 days and then move over to senna after another 5 days. I've come off the movicol for now as its clearly not working. I used to take senna before movicol and came off it for some reason, no doubt I will find out in a few weeks time. The next day I went to the toilet alot, but since then not much else has happened apart from last night when I woke up in extreme pain, like my stomach was in knots, it hurt so much I was crying. I'm still extremely constipated, my stomach looks so fat and horrible, it doesn't help that when I was weighed on Friday I weighed 58.2kg, its the most I've weighed in about 5 years! So I'm really fed up at the moment and just want it to get sorted out.

On Saturday Pete had a 'little' accident when clearing out the loft in preparation for the loft insulation next week. I'm not happy sleeping in the room as its quite dusty and stuff keeps falling out so we are sleeping in the spare room in a 3/4 bed, its cosy! Pete tried to call someone today to come out a take a look but he hasn't got back to him, so not sure what we are doing next.



On Sunday it was our 2nd Wedding Anniversary, can't believe it! We went to Wentbridge House (where we had our wedding reception), I think we both looked alot more glamorous two years ago! I must have been doing this blog a long time as when I first started I wasn't even engaged!

Forward Planning

The last few days I have being wheezy at times throughout the day, there doesn't seem to be any kind of pattern. Then this morning as soon as I woke up I started having a coughing fit and coughed up a big, hard black piece of what I can only assume is fungus. I really hope the fungus' on my chest aren't starting to play up again, I have taken voriconazole for 2 years now and have increased the gaps between treatment. Last time I managed 12 weeks and was hoping that I could now come off it completely. The side effects of the voriconazole seem to be worsening for me, when I'm on it I get headaches all the time, light hurts my eyes and I seem to need to wear sunglasses all the time when outside and some of my hair seems to fall out, therefore my hair is thinner. I can carry off the sunglasses because I'm so cool, but I don't like the thin hair and I especially don't like headaches, sitting with my head under a blanket to make it dark is not my idea of a fun day.

I seem to busy lately but I couldn't tell you what doing. I am doing lots of reading as I'm obsessed with the Song of Ice and Fire books, I'm on book 3 now and if I don't get my fix of Starks, Lannisters and Tygarians every day I am very upset! I am also trying to walk Alfie everyday although this doesn't seem to be happening! Yesterday my car had to go in for a service, as you can see its boring stuff so I won't bore you anymore!

On Saturday I had to pass on a night out, as this weekend coming up is a busy one and I didn't want to be feeling ill. I find every time I go on a night out in to town it takes me forever to recover and often I end up on IVs because I catch a virus! It tires me out so much, the talking loud, the walking around, dancing, the alcohol, going to bed late. I do enjoy going on nights out but I decided to be sensible since I have lots on this weekend and I also went to a house party last Sunday. There was no way I could go out Saturday night and then go to a house party on the Sunday! So instead I met my friends before they went in to town, then when they got their taxi at 10pm I went home like the boring person that I am! They kept asking me though, 'why aren't you coming' 'just don't drink', I don't think they understand that I have to keep a balance to try stay well, people just don't understand what it's like. I always say the worse thing about CF is the lack of energy and tiredness, I just simply can not do everything that other people can do. My energy levels are lower and tasks use more of my energy, then on top of this I have treatments to do everyday that use lots of energy. Imagine breathing through one nostril all the time, how much more work walking up those stairs would be or even just coughing which I do more of than the average person! I'm glad I was sensible though as now I can enjoy this weekend coming up.

4 Months Lucky

Oh dear, how can things go wrong so quickly?!

Last Thursday I started with a headache that decided it was going to stay until Sunday, so I was taking pain killers religiously to keep it under control. We took our nephew to LegoLand at the Trafford Centre on the Friday and had a great time, here are some pictures:

On Saturday night we went out for a meal with some friends we have made at Surrogacy UK which was really nice, we haven't seen anyone for awhile due to a lack of socials so it was nice to have a catch up. Then on Sunday Pete was as the cricket all day and I just had a relaxing day as I'd had a busy week and just wanted to get some rest!

On Monday morning I woke up and felt like someone had punched my face, my whole face was throbbing, my nose, around my eyes, the top of my head, it was horrible! I called the hospital and told the Doctor I thought it was my sinuses as I'd had a headache for 4 days and now my face was throbbing. He agreed to post me a prescription for Amoxicillin since my chest was OK for the minute but to call if my chest started to become a problem.

By Wednesday (prescription still hadn't arrived, they send them 2nd class!) I was not feeling good at all, chest aching, lack of energy, runny nose, coughing lots, sweating during the night, having problems sleeping, I've had to sleep propped up the last two nights just so that I can breathe properly and I've taken kalms to help me sleep. On Monday night I was hallucinating and hardly got any sleep, it was so scary! I saw a big dog on the bed, a spider dangling from the ceiling onto the bed, at one point I thought Pete was just laid there starring at me, he wasn't at all, he had his back to me! Another time I thought he had all rags in his hair, then I saw the room was full of leaves and at one point the light in the room was flashing. I've never experienced anything like it! I think its the Voriconazole, as I started that on Sunday and it says it is one of the side effects, I've never had it like that before though!

So surprise surprise I am starting IVs on Monday, its the earliest they could fit me in, wish I was starting earlier to be honest, Monday seems ages away! I've had to cancel my mentoring session this week that I volunteer as at Scope and I also had to cancel my meeting to start up the Scope Mentoring blog again. I'm just sat around not doing much, yesterday I had a bath instead of a shower as I felt too tired to shower, I wore my tracksuit bottoms, a sure sign I'm feeling bad! I had to go to Tesco to get some food and it was raining very heavily, no surprises that the disabled spaces were taken by people without stickers, always happens when it rains! Coughed my guts up walking around the shop, at least people get out of my way... was drenched by the time I got home. Bet I looked a right sight, never mind....!!

I've gone 4 months without needing IVs, so I've done well, my average is 3 months. So I can't complain, bring on the IVs!

PS - I have been having problems leaving comments on other peoples blogs, so if you are having the same problem, try unticking the 'save my details' box

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.