Winter is here!!

Well blimey isn't it getting cold?! It is not good for my chest! Everytime I go outside I feel like I can't expand my lungs so have to take little breathes so I get out of breath easier, plus the cold air makes me cough more and get more mucusy (if thats even a word). Another thing i've noticed is that some of my joints hurt when i'm cold, particularly my knees, they feel abit creaky and achy. I don't know if all these things are because of my cf or if they happen to you normal people as well, I guess i'll never be able to compare!

On Monday Pete and I went to see a comedian called Jason Manford (I think), he is on 8/10 cats with Jimmy Carr. Pete surprised me with the tickets which was very sweet of him. However I think he bought them for another reason as well.....to try and kill me!! The closest we could get to the theatre was at the end of the road, and the road is steep with the theatre at the end. That meant I had to walk uphill, in heels, in the cold. Not very good, then to make it even better we were on the top tier so I had to walk up stairs that seemed like they were never ending. I was gasping for breath by the time i'd finished but managed to hold in the millions of coughs I was desperate to do, I was in public afterall, got to be presentable....! Anyway I lived to tell the tale and if you want to kill me Pete your going to have to try abit harder....!! The comedian was good, I didn't laugh properly as that would have brought on even more coughs (laughing is the worse thing someone with cf can do I think - even more evidence that Pete is trying to kill me....), I was also very tired so probably didn't have the energy to laugh too much. Some of the stuff he did say was very funny and I really enjoyed it.

I've been going to the gym like a good girl, i'm going swimming once a week and doing my work out programme once a week. It's hard forcing yourself to get there but once you get there it's ok, it's having the showers etc that makes it even more tiring and those showers at the gym are not very warm so I end of coughing loads. Think I might start coming home to shower after.

I've been trying to organise my hen night invites, what a nightmare! my printer ran out of ink halfway through and would not print the picture I wanted on the invites (a picture of me dancing stupidly lol), so I emailed Pete asking him to print the rest off at work. He did, but the font was different and it looked stupid which he told me it did but I thought he was insulting my microsoft word skills and to print them anyway. So anyway I could not send those out, so I went around to my mums to print them at hers and she ran out of paper! So I ended up using yellow paper (why she has yellow paper I don't know) for a few of them. Her computer also changed the font, I must have a different microsoft word to other people or something, but I just changed it. Anyway i'm finally sorted, I hate printers, mine sometimes just makes noises at me or prints in an alien language. I don't like computers because something so simple always ends up going wrong!

So today I plucked up the courage to take Alie for a walk as he has been driving me crazy, barking at everything, he is obviously bored (even though I walked him sunday and monday). So we got all wrapped up, I had my hat and gloves on, Alfie put his coat on too. Here we are

You think this hat is funny wait until you see me in my ear muffs, and im not joking, I do own some!

Alfie in his little coat sniffing a weed, this coat is purely to keep him warm not to dress him up before I get accused of dressing up my chihuahua. He was still shivering with the coat on! If I were to dress him up he would look like this......hehe
I'm going for my flu jab later, can't be bothered, but I don't think getting the flu would help me stay well, so suppose i'll go! Anyone reading this who has cf, make sure you get your flu jab! Call this your reminder!!

not the patient for once!

Well i've been trying to stay quite busy, because if I don't I think about stuff and I get upset. These are the things that upset me, the fact I don't have a career, the fact my parents are separating, the fact I may not be able to have children without jeopardising my health and also Toria's death has made an impact on me. So anyway I think those things are enough to make anyone sink into some depressive state so i'm trying to stay busy and so I don't feel useless and so my life seems worthwhile. I'm so glad I have Pete, he is like my rock and i'm so lucky to have found someone like him. My family are great, and even though my parents are separating, they still get on fine and so i'm not torn between them or anything. They are really strong and are trying to make it as smooth as possible, I know they are upset but they try not to show it, like myself.

On Friday my mum had to go in hospital for an operation on her knee. She got to go private through insurance or something. Private hospitals are abit weird, they don't really feel like a proper hospital. I was hungry so they made me a sandwich but I wasn't allowed to eat it infront of my mum because she was nil by mouth, so they made me eat it in reception! Whats that all about! The nurse asked me if I had the day off school or college, I was like 'erm i'm 23', she was very apologetic saying i'm very pretty, I never knew you had to be young to be pretty?!!

The rooms were not really any better than the rooms on the cf ward, although the rooms on the cf ward are better than your average nhs room. My mum was in theatre for about 2 hours, I tried to have a nap on the other bed (there were 2 beds in the room and there were signs everywhere saying 'do not sit on the patients bed to reduce cross infection'), but I felt stupid going to sleep when I wasn't the patient, which is abit weird since I am always the patient!! I stayed with my mum for about an hour afterwards, its quite funny because about 3 hours after I had my port fitted this year under a general anesthetic , I was bundled into a taxi and sent back to the ward. Looking at my mum, I dunno how I did it. Thats cf for you, the staff just expect you to be hardcore and put up with anything. There was no getting a wheelchair into an ambulance to transfer me, I had to get dressed even though both my arms were really hurting as I had a port removed out of one and a port put in the other, then I had to walk to the taxi, yes walk! Then the taxi was flying around corners, then I had to sign a receipt and walk upto the ward, carrying my notes (which are not very light I can tell you)! I dunno, thats the nhs for you....

Anyway after spending all Friday at the hospital I was so tired, how can it be so tiring just sat in a room all afternoon?! I was also starving as all I got all day was that sandwich, they didn't have any tuck machines or anything, whats the world coming to?! But I still had to have my tea, then go do the wages for my mums barber shop (as she couldn't do them), then do my physio. It was about half 9 by the time I was sorted and I was so tired I could have just slept on the floor.

So yesterday Pete and I took Alfie and Murphy for a walk, it was very nice but started to rain towards the end, luckily I had my hat on. I am very sensible when it comes to keeping warm! We then had some lunch (I had left over takeaway from Saturday night), I then had about an hours kip, then we went to our local shopping centre for a few things.

On a Sunday the shopping centre shuts at 5, and we were parked in Debenhams car park and they wouldn't let anyone through to get to the car park, they had all these shop assistants guarding the entrance! This meant we had to leave the main exit and walk all the way around! I didn't have my coat on, as shopping centres are always warm. So Pete had to go get the car and bring it around for me, I would have been coughing and out of breath if I had walked that far. Whats the point in having disabled spaces if you won't let people get to them?! I could have told them, but I bet they wouldn't have believed me and I can't be bothered justifying myself to people. I know the staff want to get home, and it worked out ok because Pete went and got the car, but if I had been by myself it wouldn't have been ok. I like doing stuff with Pete because not only do I enjoy spending my time with him, but it makes things so much easier and I can do more. Like for example he can drive so I don't get tired from that, or carry the bags etc. I don't get as embarrassed when I cough etc. if i'm with him, if i'm by myself I get abit self conscious.

Sad news

Toria sadly lost her battle last night and passed away peacefully. She was 23 and has left her baby Edward and Partner Luke behind. If you read her blog which I have listed in my other blogs, you will see that she was such a strong and positive person and this was totally unexpected when she went into hospital. I am devastated, I was only getting to know her and now she has gone and I never will. Even though I didn't know her that well, this has upset me alot.

Obviously deaths of other people with cf make me think about my own and over the past few days I have been trying to keep myself busy as I had a feeling Toria was not going to make it and didn't really want to think about it. I'm not scared of the actual death myself as I know you are given lots of pain relief, sedated etc, it's the fact that I don't want to go early but on the other hand I don't want to not live my life to the full to try and gain an extra few years.

It's so unfair, I think people with cf must be so brilliant that God wants them to be by his side too soon and takes them away too early. When things happen like this you have to believe in God or that there is something else after death because if not, you feel totally hopeless and not comforted atall.

I feel like people with cf are tested constantly, but we can only be strong for so long. We are not just put on this planet to just be an inspiration to others, yes Toria was strong and she fought hard and lived her life to the full and she was a person to admire, but she has now lost her battle.

Toria god bless you and I hope you are now with the angels where you can watch Edward grow up xxx

don't drive your car over a bolt....

Well on Friday I went out for some tea and a few drinks, and on Saturday night Pete says he read someone got arrested there because of a car chase and there were forensics there and stuff, I knew I should have gone on Saturday!!

On Sunday I sent to a wedding fayre, which is basically loads of stalls with People trying to get you to use them for your wedding. We were looking for a photographer and spoke to a few. I was expecting some free champagne but didn't get any which was abit disappointing! I got a free magazine but it's not the same!

We then went food shopping and when we went back to the car the AA guy that was selling breakdown recovery outside informed us we had a bolt in our tyre. I thought he meant we had been clamped because I had forgotten to put my disabled sticker out (which I hadn't)! But no, he meant that a big bolt was stuck in my back wheel. Why he was looking at the wheel I don't know, but nevermind, I would have never noticed it if he had never mentioned it!

I then spent the afternoon sleeping (my speciality) and then cooked a roast, although i'll admit we bought a ready cooked chicken, but I made the roast potatoes myself! It was very nice, Alfie enjoyed the chicken too as Pete 'accidentally' dropped some on the floor. There was a special offer on hagen dazs icecream, so I had half a tub of that and didn't even feel guilty about it because I can eat whatever I want and don't get fat. yeay! I shall finish the other half when I have finished this blog.

I took my tyre to be fixed today, I took it to kwik fit and it only took them 10 minutes. They didn't even ask to see anything to check I was a motability customer (getting the tyres fixed is covered by motability), they said they trusted me. I must have a genuine face..... :o) I was abit scared going there as I always feel abit stupid when it comes to cars and bunches of mechanics scare me! They were asking me if I have run flat tyres and where my wheel key was or something, I just played dumb. No, ok there was no playing, I am just dumb when it comes to my car.... I know how to drive it and put petrol in and thats about it.

The worst thing that cf could do to me

I went to clinic today for a check up, my lung function is up abit (fev1 42%), weight 56.9kg and sats were 97%. My sinuses have some stuff clogging them up, but I haven't had headaches for awhile so they are just going to monitor it. The doctor was going to give me a nose spray but she forgot and did I , oh dear! Im carrying on with the voriconazole, the doctor revealed it costs £1000 for one months treatment so perhaps why they were abit reluctant to give me it?! I had some blood taken to check my liver as voriconazole can mess it up, the nurse used my little reliable vein that I look after for blood tests, i'm very protective of it!

I asked the doctor about getting pregnant, not because I want to get pregnant right away but I would like to know if I am even going to be able to have children.
She said people with a lung function like mine have had babies but there are alot of risks and she can't predict how I will cope with it. She said anything above 60% and she would be happy for me to get pregnant but below and it is more risky. She said there is a risk I could lose lung function and not get it back after pregnancy and if I got an infection during pregnancy I could lose loads of weight as they can't treat it as well as alot of the antibiotics are dangerous to the baby. She said I could even end up needing a transplant maybe 2 years after having a baby if my lung function dropped into the 20's. Obviously these are all just 'maybes'. She said if I had to be referred for IVF e.g if Pete was a carrier of cf or if I couldn't conceive because of extra mucus, they may not accept me as the doctors have to show I am going to live until the child was 16 years old. I'm guessing they look at this as well if you want to adopt. She said if I definitely wanted to do it they would support me and help me but would have to document they had warned me against it. She suggested I talk to my family and bf and perhaps speak to people who have had a baby and they had a similar lung function to me.

So as you can imagine I am gutted, I can cope with having iv's, feeling ill, even knowing i'm not going to live to old age. But to be denied the chance to be a mother if the worse thing cf could do to me. I knew the doctor would say things like this but now i've heard them, it's sunk in abit and I just don't know how to feel. I have to choose to either not have a child or have one and risk getting even more ill, even dying. I just want to know what I did wrong to deserve this? It's not like I have put off having a baby to have a career and now want one but i'm too old, it's not like i'm just not very fertile (as far as I know!) and need some help with IVF. My body is so crap it might not be able to manage to carry a baby and if I try to adopt or have a surrogate they are going to question if i'm going to live long enough, so I might not be able to do that either! People who have kids will probably tell me, oh its not all its cracked up to be anyway, well how would I know? How will I ever know? The people who say that are lucky enough to have found that out themselves, it doesn't make me feel better. Am I selfish to want to go ahead anyway and risk it? I can't imagine never having a family, it's what i've always wanted. I don't want to die and I don't want a transplant or be a burden to others, but I don't want to be miserable wishing all the time I had a child. It doesn't help when there are babies everywhere, god even in the lift leaving the ward there was a baby looking up at me. I cried in the car on the way home and I don't know how much longer I can try to stay positive, I know i'm getting married and I was so happy yesterday as I bought my wedding dress and i've been really positive this week. But whats the point in even getting married if you don't have children, and is it fair to deny Pete the chance to have children or if I do give him that chance to have an even iller wife instead or one that has died and left him with a baby? People who have their health should never take it for granted, you don't know how lucky you are you jammy buggers

Peppermint oil tablets are the best!!

Well where shall i start?

First of all it's about time I revealed that my parents are splitting up. My mum told me 2 weeks ago but I guess I was hoping it wouldn't happen and was too upset about it and didn't want to talk to other people about it. My youngest brother only got told yesterday as he has just started university and came home for the weekend, so I also didn't want him finding out another way. Now its all in the open though I can mention it. At first I was gutted and was crying all the time, I couldn't imagine my parents not together. I know i'm an adult and don't even live at home anymore but that doesn't mean it's not horrible. I think I was more concerned for my parents than myself, i'm scared they will be lonely without each other and I don't want them to be sad and alone. I'm scared I won't see my dad very often, he's the kind of person that would rather keep a distance from you than actually have to talk about his feelings etc. I'm scared of how it will affect us as a family, I guess when your parents are together you can't ever imagine them not been, it's really weird. So anyway, now 2 weeks have passed I have gotten used to the idea abit and i'm trying to support my parents the best way I can. My parents house is massive (5 bedrooms) and now there is just my mum and my other brother living there (and little Murphy as well). It must be so quiet, last year there were 5 of us, then I went, then my brother to uni and now my dad. Anyway enough said, it's my parents business.

I had a pretty rubbish weekend. I got a pain under my chest on friday night, it went saturday day and then came back on the evening. It was so painful I was in agony and couldn't sleep all night. It was still there sunday so i called the hospital, I had a pretty good idea that it was trapped wind pushing on my chest as I had this a couple of years ago. The ward told me to ring my gp, before I knew it I was at the local health centre seeing a doctor. He listened to the back of my chest and said there were a few crackles (oh really...?) but no sign of infection and agreed it was trapped wind. He wrote a prescription for peppermint oil tablets (on my recommendation) and when i got to Boots he had written me a prescription for actual oil and not tablets! The pharmacist would not give me tablets (I bet my local pharmacy would have) but informed me I could just buy them so that is what I did. So anyway next time I won't bother with the doctor, I shall just buy some myself!! The pain did not go yesterday but has eased off today and almost gone. You may think I was being abit ott, but the pain was so bad I could not have put up with it for another day.

So today I have felt full of energy after my near death experience......hehe. I got my hair done in the morning, then took Alfie for a short walk and then went swimming at the gym followed by 10 minutes in the hydrotherapy pool. I feel abit of a fool at the gym as I still don't know where everything is so I walk around like an idiot, looking at signs etc.

I'm now sat with some conditioner in my hair as it needs some nourishment after its bleaching this morning. Im going to attempt to cook risotto tonight, i've never even eaten risotto before so have no idea what it should taste like.....! Then I am meeting some people I used to work with later on for a few drinks. I told you I was feeling energetic!!

I'm not sure how Toria is doing but the last update from her friend was that she still is not doing very well, Toria I really hope you pull through this and i'm thinking of you xx

The Gym

This week I finally started at the gym. I saw a guy who is a medical specialist or something and I told him that I wanted to try get my function up but not to lose weight if possible. He has set up a programme for me which seems ok, it involves going on the bike for 10 minutes and then doing a few weights and sit ups (erm ok then...) and then going on the walking thing for 10 minutes (dont you love the technical terms I have learnt?). It makes me get breathless but not too much that I feel like i'm going to pass out or anything, I have to go at like level 2-3 which is abit embarrassing.....!The next day my chest was aching from lifting the weights, hope it doesn''t do that every time, it hurt when being patted during my physio!

I've had a slight cold this week but nothing major and it seems to be going. I lost my voice on saturday when I went out and my voice is still not back! I don't know if these voriconazole seem to be doing anything apart from making me very tired, but I guess it's early days yet. I have been on them before but was on steroids too, which make me hyperactive! I'm going to the hospital next thursday so will see what they have to say anyway. I'm just taking it easy at the moment cos i'm so tired. I've been doing my physio twice a day now for about a month and it seems to be routine now which is good, it was hard at first forcing myself to do it but I think it's helping abit. I also finish my tobi nebs tomorrow, as with tobi you have to have them for a month and then have a month off, and from tomorrow it is my month off, yeay!!! I'm sure they irritate my throat so I shall monitor how I do on my month off and see if I feel any better. Although its not like I can stop doing the tobi nebs as they are quite important.

I'm loving tv at the moment, there is so much on, let me see Silent Witness, Wire in the Blood, Heroes, Desperate Housewives, The Tudors (although the season sadly finished last friday, Anne Boleyn finally lost her head, it was very sad). Infact some programmes are on at the same times so i'm relying on these catch up services on the internet. I watch alot of tv which may seem sad but when you feel tired all the time there is not much else to do and I guess its a way to forget about things and kind of escape, kind of sad but kind of true!

Im looking after Murphy again this week as my mum is on holiday with my Auntie so the terrible two chihuahuas have kept me busy. Oh dear Murphy has just run inside with a chewed up peg to give me a present, best go! xx

Praying for Toria

Toria is having a very rough time (to put it lightly) and from what I have gathered she is currently on life support after a surgeon punctured her lung when putting a new port in for her along with other complications. I don't know how a procedure that so many people with cf have all the time can have gone so wrong and I am praying that Toria pulls through this. Toria i am thinking of you, your partner and little baby boy and praying you get stronger everyday. It is so unfair this has happened to you and I keep hoping to hear of good news xx

Dancing the night away

So Saturday I went out clubbing, this was the night the heavens decided to open, the wind decided to howl and it got cold!! No worries, i'm English and abit of bad weather isn't going to put me off going out, I am from Yorkshire afterall so i'm also as tough as old boots. I still wore my dress I had bought for the occasion but I was sensible and took a big coat with me, but no umbrella, whoops!

All the bars are next to each other on one road so you don't have to walk very far, how handy! There was only one friend and I, we lost my other friend at 6pm when she came down with some kind of bug and had to tell us the bad news. My friend I went out with was shopping at the time for an outfit to go out in, she was supposed to be coming round to mine for 7... She ended up coming round at 8.30pm, this is normal behaviour for her. Even then she had not done her hair or makeup, how can you be 1 and 1/2 hours late and still not have done anything apart from shower and dress? Only she knows the answer to that!!

We went to the club at about 12 and had to queue about 10 minutes to get in, the bouncers informed me I sounded like I should be in bed with a lemsip, I told them I had cf and this was normal. That shut them up, they then said we were the only girls they had seen with coats on and we were very sensible. We replied we were knocking on abit at the grand age of 23, the bouncers agreed when we pointed out that the average age of girls on a night out is about 17 years old.

My friend kept needing the toilets which was upstairs (I blame the tights she was wearing), so she kept leaving me, I couldn't face walking up the stairs. Heres a tip, dont stay on the dancefloor by yourself, its like a big sign flashes above your head 'hello, im by myself, im vulnerable, men come and harass me!'. As we were leaving we discovered there was a lift so I could have gone to the toilets with her afterall!!

Anyway we danced till about 2am, I dunno how I did it, maybe it was the salbutamol inhaler tucked in my bag that kept me going, or maybe the vodka.... We queued in the rain for a taxi for about 15 minutes, I got home and had a dehydration sachet to try prevent me feeling ill the next day.

It didn't work, I didn't have a hangover as such. I woke up in agony as I had cramp in my legs and my whole body ached and I was tired so I didn't really do that much that day. The worrying thing was that I couldn't breathe properly all day and this continued to monday, also my legs were still sore. I'm just glad people can't smoke in bars anymore else I would never be able to go out. It's now Tuesday and I have woken up with a cold so dont feel too good.

So anyway..... I might not be going out clubbing again for awhile, was a good night though!!

King and Queen of England

As you can see Pete and I have travelled back in time and taken over England as King and Queen (click on link). As you can also tell, i've had a really productive day looking on the Tudors website...

http://thetudorsportrait.com/gallery/queen-gemma-the-magnificent-the-87625th/

So today I went for a scan on my head, because im crazy and think i'm in the 16th century. No just kidding, I went because I keep getting headaches so they want to check my sinuses. The doctor lied and said I was an inpatient so I got a call this morning at about 11am (whilst I was in bed watching desperate housewives on my laptop, they know how to pick their moments) 'Gemma its the nurse from ward 2, you have a ct scan today at 3, you need to pretend your an inpatient so come and collect your notes from the ward beforehand and so we can put a name band on your wrist'. So yes my doctor lied to get me a quick appointment, what a genius! So I went and had my brain scanned, you just lay on a bed and a circle thing moves around your head for like 5 minutes. I had to keep really still and really needed to cough, but I managed to hold it in. Can you believe I had done my hair all nice and they made me take my hair clips out for the scan?! I managed to salvage it, so it was ok. Whilst I was waiting I had a good read of my notes, although I don't really understand lab reports and stuff so it might have well as been in chinese.
I actually had to stop to catch my breath when walking from the car to the ward as its up abit of a hill, then it suddenly hit me, my lungs are a pile of w*nk and I hate them. So we are not speaking at the moment, my lungs and I. I'm sure we will make up eventually xx