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).

Past Few Weeks

I've kind of been putting this blog off as I couldn't be bothered with it but I suppose I should post an update for anyone that still reads!

I ended up on IVs again as I caught a cold which it seems is my enemy! I called the hospital and they put me on septrin at first to try stop me needing IVs, I drove to Leeds and picked up the prescription, got the tablets from the chemist. I decided to flick through the leaflet quickly before I took it as I've never taken septrin before and like to know what lovely side effects I may experience, so I know its the tablets causing it. I didn't get past the first section of the leaflet as I discovered septrin contains trimethprim which I have on my notes as been allergic to. I have a memory of vomiting in my Beauty and the Beast slippers as a child, my mother cannot recall this. I was unimpressed to say the least so called the Doctor who said 'yes I remember reading it in your notes but I forgot', wow good to know. Anyway she suggested I take one anyway and see how it went as it was a long time ago and it wasn't a serious allergic reaction. There was no vomiting so that was a bit of good news.

The septrin failed me and four days later I felt like I was at deaths door, I was getting out of breath talking, was so tired and achy and my sputum was going really thick and dark green. On the Monday I waited until our cleaner had done the bedroom and and then crawled in to bed, I was fully clothed with slippers on and was under the duvet and still shivering. I had to take Alfie to the vets as he had been walking on three legs all weekend so dragged myself out of bed and somehow made it, luckily Alfie had just pulled a muscle, that dog is a serious whimp! I decided whilst in the vets I was indeed going to die and called the hospital to tell them I was feeling very unwell so they wanted me to go in and see them. I went to my mums where I proceeded to cry as I was fed up and could not face driving to the hospital and struggling to get a car parking space and walking from the car to the ward. So my mum took me thankfully and gave me some pringles to cheer me up, my mum had only just come back from holiday so was pretty tired herself bless her!

I had a temperature of 38 degrees (I think it was 39 degrees the next day) and since I'd only had IVs two weeks before and I confessed I would struggle to do home IVs they decided to admit me in to hospital. Except they there were no beds on the CF ward and they couldn't locate me one on the respiratory ward so I had to go back home and wait for them to call me. Which they did the next day so off I went with my lightly packed suitcase (I wasn't planning on staying long). They decided I might have the flu so started me on tamiflu, they also put me in isolation so I couldn't infect anyone else. 

I went in on the Tuesday and it was my sister in laws wedding on the Saturday, so as you can imagine I was extremely unhappy at this turn of events as I'd been looking forward to it for ages and I was also supposed to be a witness. I told everyone who came in to my room that I wanted to go to this wedding and could I go on home IVs or go out for two nights? (the wedding wasn't local). It turned out I did not have the flu, just rhino virus (the common cold) and my temperature was coming down slowly so they agreed to let me go on home IVs on the Friday as I was feeling a lot better and felt I could manage. I was going crazy anyway as I wasn't allowed out of my room, even to use the ward gym and there weren't even any windows in my room to spy on people! 

The wedding was great, I didn't exactly feel like partying and had lots of treatments to fit in but I managed it and I was there which was the main thing. I went to a wedding and fitted in three lots of physio, all my nebulisers, three lots of IVs and an afternoon kip so I was quite proud of myself! The hotel had a fridge they let me use thankfully and I had to use a jug to wash my hair as the shower wouldn't lift down, all these little things people don't realise you stress about!

The rest of the week I spent hidden under a sleeping bag on the sofa watching lots of ER, then I decided a few days before I was due to finish my IVs that I should get out and about. It's sometimes difficult to tell if you feel better when you are lying around all day, especially with all the side effects from the IVs.

When I went to finish my IVs my fev1 was 45% which is the best it has been in ages so I am really happy about that! I managed to keep on my weight through having supplements so I'm practically back to normal now. The only complain I have is that I keep getting mucus in my throat especially when I lie down and I keep waking up because I can't breathe! The physio thinks this might be coming from my sinuses, so hopefully will get better as my cold goes. I also had my flu jab when I finished my IVs, the earliest my GPs could fit me in was the 31st October and it's just easier to get it done whilst at the hospital.

My glucose tolerance test says I have mild diabetes so at the moment I ma having to monitor my blood sugars before I eat and an hour and half after I've eaten. I don't know much about diabetes or what the blood sugars mean, the lowest so far is 3.2 and the highest is 17.6, I know that is higher than they should be but no idea what my fate is going to be! I hope I don't have diabetes because my fingers are already sore and it's just another thing to make eating even more complicated than it already is with these stupid enzymes! I seriously don't know how much more treatments I can fit in to my day and still have some form of a decent life! I might actually cry if they tell me I have diabetes.

Pete managed to raise £200 for doing the Great North Run which we donated to my CF Ward last week, so thanks to all those that donated!

Here are some pictures from my sister in laws wedding, we didn't get many! She looked gorgeous anyway which is easy for her since she does all the time!

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!

Love on the Transplant List

I'm sorry I haven't blogged much, i'm feeling really rough at the moment. I woke up with a cold last Tuesday and started Amoxicillin straight away to try stop it going any further however I don't think it has worked. Sunday was the worst day, I haven't felt so ill for a long time.

I'm at outpatients tomorrow so will find out if my chest has worsened but I'm almost sure it has, I am getting breathless lying down, talking and just walking around the house. I am coughing thick green sputum up all the time and taking a sputum pot with me everywhere, my chest aches and I've taken to not wearing a bra when possible as it feels too tight and restricts me. I am sleeping better than I was which is a positive, I'm not waking in pools of sweat but freezing anymore and I'm coughing less during the night. I'm just so pissed off (excuse my language!) I don't need this now, its December and I have lots coming up which I have been looking forward to. My appetite is poor although slightly improved today (I actually had some breakfast and attempting some lunch) and my skandishakes are a year out of date, they do not taste good!

I am so bored of just lying around and not doing much in order to try rest! I really do hate this time of the month!

There was an excellent programme on Monday called 'Love on the Transplant List' it is about a CF friend of mine called Kirstie and her journey to receive a transplant with her husband Stuart. It was really well put together and I think it reflects brilliantly how difficult every day tasks can be and how difficult it is to watch your other half dying in front of you. It makes me realise how amazing Pete is to know this could happen to me and not be fazed by it. Obviously my CF is not at this stage and hopefully will not be for a long, long time but it raises awareness of CF and makes people realise how important becoming an organ donor is. Please take the time to watch it on BBC IPlayer if you have not seen it. Kirstie and Stuart were great to let this difficult time be filmed and shared, I think they did a fantastic job! Below is a trailer and the link to watch the whole programme



Link for BBC IPlayer - click here

All Clear

Well I relieved to say my constipation problem has finally seemed to sort itself out. The day before Pete did the Great North Run I felt terribly blocked and bloated so after emailing a CF friend for advice I took 6 movicol together and 2 senna. Then the next morning I took another senna. I was slightly worried I could have a problem since we would be outside all day with only port-a-loos! But nothing seemed to happen. Then that night I took 2 senna and 4 movicols. This seemed to get things going and then I have gradually reduced the number of movicols, I'm now down to 1 movicol and 2 senna each night. I'm going to try have the senna alternate nights but we'll see how it goes. The Doctor says this is fine and to do whatever I want really as long as things are moving along.
So my suggestion is to take up to 8 movicols in one go if you are blocked up ( take at night), slowly increasing the dose doesn't seem to help. Just give it a blast and then slowly reduce the sachets.

Last week I did a presentation at Scope, I did it about 2 years ago and was asked to do it again for new mentors. I just used the same slide show but updated a few things, mainly the bits about people I know with CF as some have sadly passed away and others have had transplants. I managed to print the handouts in the office from the usb stick but then the usb stick would not work in the projector laptop, so we tried it in 2 other laptops including the one in the office I had just used and it wouldn't work in any! Nightmare! So I had to do the presentation from the handout which was disappointing since some of the pictures were not very clear on it. It always amazes me how little people know about CF, one guy said he didn't realise it was so serious, nearly everyone had no idea how much treatment is involved. So I'm glad that I can help try educate people.

Pete and I took Alfie for some behavioural training on Sunday which was interesting. Alfie can be funny with strangers, children and other dogs and we were thinking of having him neutered to try help with the problem. The vet told us we would need to incorporate it with some behavioural training so I contacted the place were we took him for his dog training classes and they referred to the behavioural specialist. She says not to get him neutered until she has assessed him as it could make him worse. We had an hour with her on Sunday and then we get 3 follow up sessions, which will involve her bringing in a dog to teach Alfie how to behave with them, also we will use a doll that makes baby noises to get him used to children and teach him how to behave around strangers. The good news is that he is not classed as aggressive, he doesn't just go around attacking people, I think she used the term 'highly reactive' haha. People who have met Alfie will laugh reading this because he can be a little bugger and has a reputation, but I've always argued he isn't aggressive, once he knows people he is fine and so loving and gentle with them and eager to please. Anyway we have some tasks we need to do before our next session, so fingers crossed it helps Alfie become a less stressed out doggie!

I had an Outpatients appointment yesterday and have started some oral ciprofloxacin as I think I have picked up a virus. I'm waking with a headache every day, sweating loads in the night, feeling tired, getting breathless more easy and my sputum is thicker. You can tell winter is coming, I hate winter because I catch every damn cold going and need IVs! Fingers crossed that isn't the case this time.

My lung function is slightly down to 41% from 43% which apparently is stable (it annoys me when they say that, a small decrease in % means more for me as it never moves too dramatically), I weigh 57kg (yikes, fattie!) and all my annual blood results came back OK. From what I recall they test all vitamin levels, iron levels, if I'm anemic, my crp which is your infection level (mine is 17, it should be below 10 but mine never gets below 10 apparently), my aspergillus levels (fungus) both of which are higher than they like but mine never get to those levels (why am I not surprised), my thyroid hormone level, calcium level (slightly low) and blood sugars. That's all I can remember! I have been given permission to come off Voriconazole for good now until my symptoms start to reappear so that's good news as the side effects were getting worse with each course of treatment!

By the way, we still have a hole in our bedroom ceiling and so still sleeping in the spare room. The insurance company are taking forever!!

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

Gemma vs the Common Cold

Our fridge has broken! I noticed my milk in my cereal wasn't very cold, so investigated and it turns out the fridge is about 18 degrees, so warmer than the house I think! Luckily I have my IV fridge to use (having CF can have benefits) and all the food seemed OK. So we are finally getting someone to fix it on Friday (its been broken for about a week now), at least having to walk into the spare room to get items out of the other fridge is giving us some exercise...!

My knitting is going well, I can now knit, pearl and do ribbing. I am starting my first proper item soon but I can't say what is is as it's a surprise for someone and they might read this blog!

Poor Alfie has had a bit of a rough week, I took him to the vets on Monday as he keeps getting tummy problems, its gargles so loud and he won't eat and is sick. The vet has suggested a bland diet and given us some medicine to give him when his belly starts to gurgle to help it settle. I was asked if I knew how to use a syringe to give the medicine which made me smile... Anyway he can now only have fish, chicken, turkey, rice, pasta and mash potato. No more pork chops and sausages!! (supplied by my dad for free from his work). He is also on a special dog food for his breakfast that is for dogs with sensitive tummy's and has probiotics in it. Who knew dogs dietary requirements were so complex?! On top of this he has conjunctivitis, very common in chihuahuas as they have massive eyes that stick out and are so close to the ground so get all the dust in them, so he has to have eye drops which seem to have given him the runs! I was welcomed yesterday morning by a kitchen full of his dinner all thrown back up and poo everywhere. Anyway it seems to have settled now and he is back to his cheeky self, fingers crossed!

I haven't had a great few days myself to be honest, I felt fine last week and went to Stockport on Friday to meet a friend and then out for a meal in the evening for my brothers birthday.

Then on Saturday morning I woke with a sore throat so gargled TCP and did vicks first defence all day. By Sunday I had throbbing sinuses, I swear I thought if I looked in a mirror the whole area around my eyes and top of my nose would be visibly throbbing! I continued with the TCP and vicks first defence as well as taking sudafed and plenty of pain killers and went down to Derby to catch up with my friends from university, probably not the best idea but it's been planned for months and I wasn't going to cancel because of a stupid cold.

Sunday night I dreamt I had the worst ear ache ever and then promptly woke up and realised it was true, I was so scared something had crawled in my ear it hurt so much! Pain killers took the pain away thankfully and I managed to fall back asleep easily. On Monday the sinus pain seemed to have settled, I had/have increased my sinus nasal wash to twice a day so perhaps that has helped, i've given up with the vicks first defence. However I now seem to have developed a raspy cough which makes my throat and top of my chest feel red raw, every time I cough I think I might cough up a tonsil or something but so far it's just sputum thankfully!

So my plan of action is as follows: have sputum pot available for me to cough into as otherwise i'll have toilet problems next and be feeling sick as sputum is difficult to digest if you swallow it! Continue to gargle TCP twice a day, continue to do sinus nasal rinse twice a day and do hypertonic saline nebuliser 4 times a day (usually done twice a day) to keep chest clear and stop mother f*cking cold reaching my lungs. I've just had IV's, my body is strong. My body is a temple. I WILL fight this...!

Old Friend/Enemy

Today I commenced on my old friend/enemy, the home IV's.

I think I had already mentioned that I was feeling about rough after Christmas and then on Saturday I woke up with a cold. By Sunday I felt quite sh!te to be honest and couldn't even lie down properly in bed as it just made me cough all the time, so I spent the night propped up to stop coughing.

The snot from my nose and mucus from my chest is never ending, I want to just stick a vacuum down there and suck it all out! I have little energy and I'm getting headaches from the coughing and my sinuses. So on Monday I called to start IV's, it's not going to sort it's self out and the longer I leave it the worse it will get, plus the doctor said to start them if I felt myself slipping. I've come to the conclusion they like to treat my exacerbation's (that's what they call it) as soon as possible, rather than see how it goes because there is generally only one way it's going to go, and it's not positive!

So I started IV's today, my fev1 is 42% so down 4% from last time but still quite good for me. My weight is up a tiny bit, which I knew it would be because my belly has been feeling slightly flabby and my trousers abit tight! They took a swab from my throat like they do every time, I'm 99.9% sure it will come back saying I have a virus! The doctor checked I'd had my flu jab, apparently alot of naughty patients haven't and have got flu and swine flu, some have it even though they have had the jab! I assured her I was the gold star patient and do everything I am told to do. She says it's fine to cut my iron tablets down to two a day which I've been doing for the past week or so, as they are what is causing my tummy problems.

That's about it! I'm on Colomycin and Ceftazidime and I also am the new owner of a pari pep, it's like a pep mask but a mouth piece rather than a mask. To be honest I don't think it's as good from my short practise with the physio earlier, but I'll give it a go. The only reason I have it is for vanity reasons, I complained the pep mask rubs my make up off which is a pain when I'm ready to go out and need to do my physio, it's also a pain when I have my glasses on as the mask pushes them up. So hence I have been provided a pari pep to try out.

Pari Pep below and Pep Mask at the bottom

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!

Silly Cold!

Well this cold is officially trying to make my life a misery but I’m not going to let it!

It's not like I’m in bed dying or anything, I’m still out and about, but it's limiting me and I don't like being limited. Plus I feel it's dragging me closer and closer to IV's which I am not happy with, it would be OK if IV's were as simple as I have a needle in and have some antibiotics pumped into me for two weeks. However it’s not so simple is it? Its two weeks of pure misery and feeling like poop, and I still feel like I am recovering from the last lot! Surely such aggressive and miserable treatment should be rewarded by weeks of feeling good and having a life? Well I feel my last course of IV's should give me at least 12 good weeks, it owes me that much!

I just have loads of mucus in my throat constantly and it tastes horrible which is making me feel sick. It's dripping and sticking and making my chest crackle. It's causing me to do very loud coughs that make all my veins pop out of my head and makes people feel the need to comment on that I have a bad cough (yes thanks Sherlock), I am spending alot of my time trying not to loosen anything to try not to cough because it just uses so much energy it tires me out! What I do is try store it all until I’m on my own, then just let it all out, and then spend 5 minutes waiting for the spinning in my head and dots in front of my eyes to disappear. The worst thing though is it is just making me tired which makes me in a bad mood, which makes me feel miserable. I am not sleeping well either which is probably contributing, I’m sweating and having freaky dreams, I assume because I am back on the voriconazole.

Anyway the good news is, I have my mini back! Wahoo!!!! They have cleaned it too, yeay! Friday morning was a good morning as she pulled up outside my house and we went for a little drive together, Gemma and mini back together at last! I'm going to be really sad when she goes, I’m not particularly excited about getting my new car because I love my mini so much!

On Friday afternoon I helped my Nana look after my cousins little girl who is two years old. Let’s just say I am now sick of Peppa Pig and Pingu! She’s lovely though and it was good fun! On Monday we had to take Alfie to the vets, he couldn't walk and was whimpering in pain. It meant I had to miss yoga damn it! She thinks he has hurt his back so gave him an injection for the pain and he did limp around for a few more days but now he is back to his normal self. He needs to realise how small he is and stop jumping off everything, no matter how big it is!

On Saturday night I had to cancel seeing my friends which was disappointing. They were going into town which I had said I couldn't do as I want to reserve myself for London, however they were going to come to mine first before going into town. However I was really tried after working at the shop and the dogs had been on their own all day (looking after Murphy too) so I had to take them for a walk, then cook tea and get a bath and do physio. Alfie was sick everywhere from excitement when I got home and then got poo on his paw on our walk so he had to have bath just adding to my list of things to do, least he is only small! Pete was out so I had no help and I was just exhausted so had to cancel, I just couldn't get everything done by the time they arrived and then sit and talk for a few hours, just wanted to turn into a vegetable in front of the TV!

I am so excited about our trip to London, I have planned what we are doing each day and bought a little map of London and the tube so I can plan how we will get to each place. I'm going to be so tired when we get back, but I don't even care, it will be worth it!

The Common Cold

Somehow over the weekend I have managed to develop a cold! It only dawned on my last night that it could be a cold, I already mentioned I was achy and tired last week. Then on Saturday I developed a headache which I thought was a tension headache because of the surrogacy social event. Then yesterday I realised my nose felt bunged up, not blocked as I can still breathe through it, but kind of throbbing between my eyes because it feels like there is extra mucus squeezed in up there. So I thought about it all, as my chest has being quite productive the past week and the mucus has been lighter in colour which would indicate to me its not sputum from the depths of my lungs, but more like snot (yes lovely I know!) and I have come to the conclusion I have a cold. I don't seem to get colds very often, however when I woke up this morning I am convinced its what it is. My head feels crammed and the pressure is not nice and my chest feels heavy because I'm having to think about breathing more then usual if that makes any sense.

I'm not very happy about this as it is Pete and I's trip to London next week and I don't want it to make my chest all horrible and ruin the trip. So I have called the hospital and they are writing me a prescription for some Amoxicillin which I'm going to go and collect later. This should hopefully keep me going and give my body a fighting chance! I know antibiotics don't work against viruses, however I think the reason a cold makes my chest worse is because it makes my body weaker? So the infections get stronger? So the antibiotics help me with the fight. That's my theory anyway! The doctor agreed that I probably needed some too, I probably wouldn't have bothered to call them if I wasn't going away next week.
I also started voriconazole on Sunday as its my month on again, so that should help keep the nasty fungus' in order!

The social event on Saturday was great! It's weird, because I want them to see me as well enough to look after a child so I was trying to hide my CF to some extent i.e. trying not to cough, discreetly taking my tablets, made out I work part time when in reality its not really part time atall! Not that I lied or anything, I just find it interesting how in different situations I make myself come across differently depending on the situation and what I want them to think of me! I hate it when people ask me what my job is, its not really an area I want to get into with some people I have just met! I hate the thought of people thinking that I'm either lazy or that I'm this really sick person! We all know how the media portray people who don't work and receive state benefits, it's not in a positive way!
You can read more on the social event on my surrogacy blog, it really was nice to meet others in our situation and learn more about the 'surrogacy' world. I was so tired afterwards, socialising can be such hard work, especially when its with new people so you are on your guard more. I had a kip on the way back and also when I got home!

The Glass

Well I am currently off my IVs! Yeay! I got a nice shower this morning, I think everyone should get a break inbetween their IVs to get a proper wash!

I have felt worse and worse since I last blogged, I'm not kidding, I thought I was at deaths door. I got in the bath on Monday and I was thinking about everything I needed to do in order to get dressed for the day, just little things like 'get out of bath' 'dry myself' 'brush teeth' 'moisturise face' etc and I just couldn't do it, I didn't have the energy to do those small things. I just sat in the bath and started crying because I didn't even know why i was making myself get dressed, it's not like I had the energy or will to do anything. I've been getting up at 6 to put my IV's on, going to bed about 11pm after my last dose of IV's, doing physio, tablets, eating and sleeping and that's it. It's all been CF related and it's been bloody hard work to make myself do it. Doing other stuff has not being possible, it was my mums birthday on Saturday so I went for a meal for that, and we went round to hers on Sunday for dinner and that's about the only times I've left the house.

Then on Monday I started to get out of breath really easily, just walking to the bathroom or talking was making me breathe funny and it was really worrying. So on Tuesday I called the hospital and went in to see them. The weird thing is, they couldn't find anything wrong with me (apart from the usual stuff), my fev1 was only down 3% and my fvc was down 12%, my stats were 96%. Oh apparently I have put on 2kg in 6 days, think there might be a dodgy set of scales on the ward.....! My throat swabs showed I had the rhonovirus which is the common cold but the doctor didn't think that was causing the problem. I went for an xray and that showed nothing unusual, so the conclusion was that the IVs were causing the problems.

Therefore I have come off the IV's and have to call them tomorrow to decide what to do. As I obviously still need to have IVs, I went on them for a reason! I'm feeling alot better today, my energy levels are alot higher and my breathing is better, but not 100% better, but like I say, I did go on IVs for a reason! So I will probably go back on them tomorrow and maybe go on colomycin and meropenum, if I do I am going to ask for some anti sickness tablets to try help the side effects. People have also put some tips on the CF Forum which I am going to try and do.

The good news is, that my port seems ok and isn't red or itchy! Must try and see the glass as half full!

The thing that has worried me about this drama is that one day I might feel like this all the time. Breathless, no energy and tired. Isn't that how it feels when you need a lung transplant? I don't know if I can do it! That's the crap thing about CF, you know it's going to happen one day, it's a disease that gets worse, it doesn't get better! OK maybe the glass is half empty, at least I tried to be positive..!

Shattered

So the last few days I seem to have been quite busy and now I am feeling shattered. These are the type of things I have been up to:

Growing a major concern for a increasing bald patch in my hair just above my left temple!
Battling with a coldsore right in the corner of my lip, it hurts so much!
Also battling with bad skin on my face, hello spots and greasy skin! Not good!
Also still battling with a cold and giving it to Pete in the process
Getting my hair done (this is when I spotted the bald patch)
Going shopping
Ordering some curtains for our new home
Going to the bank to transfer our deposit for the bungalow
Visiting the inlaws
Helping at my mums barber shop
Going to Yoga and bruising my hip
Going swimming and doing 24 lengths again which I'm rather proud of
Developed a fondness for porridge with golden syrup in
Doing voluntary work and getting a certificate for 3 years service (its actually 4 years but they had to give me 3 for some reason that I can't remember!)
Other stuff I am too tired to try remember

We won't be completing on our bungalow this week unfortunately. There was a problem with the house the vendors are moving to, so hopefully it will be next week. Can't wait!

Anyway thats it folks...! I know this is the most boring blog ever..... but I want to go to sleep!

Please fill in my new poll, I am determined to prove to Pete I am not weird!

It must be nearly winter, colds are here!

I went to Yoga as planned on Friday, I really enjoyed it although I discovered I am not very flexible and also that everyone in my class was at least 10 years older than me or more. Whilst you do the stretches etc you have to take deep breathes and we also did some meditation where you concentrate on your breathing so I hope it really helps. I have tried yoga once before, many years ago, I think I was about 16. I absolutely hated it, all I remember is there was alot of standing straight like a tree, there was none of that in this class, it was alot more productive. I told the lady about my CF at the start, basically I told her I had a port in my arm that might mean I couldn't do some of the stretches with my left arm if it involved bending it around my back etc and also if I started coughing just to ignore me (which I didn't do anyway).
I did in the changing room though and some woman started going on about my cough and that make sure I didn't give swine flu to anyone, she was really loud and everyone could hear so I put her straight. So then she was all apologetic (making me feel guilty) saying I looked at fit as a fiddle and she told me I took loads of tablets (yes I do know that) then her mate was commenting on me coming to the gym. I was like 'hello I just want to get changed and go'...! Everyone was gawping at me in the room, I was mortified!

At the weekend Pete and I went out into town for his mates birthday. It wasn't the best night for various reasons I can't go into. Then on Sunday we went to see the inlaws for a nice Sunday roast, even Alfie came with us and I was trying to use the clicker training (which he did take to) to get him to behave near our nephew. Alfie still barks at him and has to stay on his lead and now the baby is running around and loves Alfie, its difficult to keep them apart. So basically everytime Alfie didn't bark at the baby and was well behaved I clicked the clicker to tell him this was a good behaviour and gave him a treat. Eventually the clicker will become the reward itself as he will associate it with getting treats i.e. been happy and pressing a clicker is alot easier than rooting through the treats box each time he is good. Obviously you still have to give him treats sometimes, he's not stupid! If you ever did psychology at A-level/degree you will probably remember Pavlovs dogs, it's the same concept with the classical conditioning.

On Monday Pete had the day off work, he has had a cold since we came back from Thailand and he was quite bad on Monday. I tried to be as sympathetic as possible, I even slept on the sofa on Sunday night, he was snoring and breathing all funny and I couldn't exactly kick him out of bed could I? I ran him a bath, went to the chemist for him but by the afternoon my nice streak had worn off before guess who else started to feel rubbish? Yes that would be moi..! So my gym routine was already ruined although I did take Alfie for a walk so still got some exercise. I am gargling TCP twice a day and using vicks first defense but I have developed a productive cough and my throat is starting to hurt. I have my flu jab today, I'm not telling the nurse else she probably won't let me have it.

I have started on the thank you cards this week to send out to all the wedding guests, that's a job and a half! I have to cut 100 pieces of A4 in half with the smallest scissors ever as Pete broke the big ones when we were opening all the wedding presents. Then I have to write in them all and stick them into some other card, see what I mean?! I can't let Pete help me, I can't trust him to do it properly...!