Just Write the Prescription Please

Well hello there!

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

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

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

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

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

Everything is OK in this neck of the woods

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

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

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

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

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

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

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

Here are a few pictures from the past few weeks

First night out in months as actually felt well enough!

Trip to Bridlington (weather was horrible!)

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

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

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

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

Glowing Report!

I'm really happy to say that yesterday my lung function was 49%, my weight 55.8kg and my oxygen saturation (sats) levels were 99%! I can't remember the last time I saw figures like that, for months and months now my sats have sat at 93-95% and that was just normal for me, sometimes getting even lower when I felt unwell. So to see them at a normal number is great and for my lung function to be almost hitting 50% is amazing. My weight is back to pre pneumonia 2011 weight, it just shows how long it can take to put that weight back on once you lose it. I have started a 10 day course of IVs which sounds stupid given the numbers, but I have felt a bit iffy the past week or so with my energy levels and I started to develop a tickly cough and chest pains so decided I wanted to have some before we start fertility treatment again, rather than possibly end up needing them half way through.

So what I have been doing differently? Well I believe the main contributor is my new nebulised antibiotic Azli, also known as Cayston, also known as nebulised Aztreonam. I had high hopes for this nebuliser as lots of people have said how amazing it is and I believe them now! At first it made me really wheezy however that went after about 10 days, it does re appear every so often though. Then I started to be able to exercise more than usual and before I knew it I was going to the gym 3 times a week and doing 40 minute sessions involving about 25 minutes cardio and the rest doing weights. I'm feeling I can really push myself at the gym at the moment and I've noticed my heart rate has decreased too, my pulse at rest is in the 80s at the moment, I pretty sure it used to be about 100. I am still very breathless when exercising however I do have less mucus which is what the physio believes has helped bring my sats up and why I think I a finding the gym less hard work.

Then I have also started having insulin with lunch and tea and although I still need to learn how many units I need and not getting it right all the time, I'm getting there slowly. I'm having 2 units with lunch and 3-5 units with tea. I'm having lots of hypos (low sugars) which is not nice, basically every time I exercise and if I have breakfast early or tea late. It's easy to say, well eat your tea earlier or have breakfast later, but that isn't always possible!

So health wise I am doing well at the moment which makes me realise how important it is to be compliant with treatment and to be involved in your CF care. I know for a fact if I worked this would not be possible, I haven't worked for about 5 years now and I'm finally starting to feel I understand my CF and know what my body needs and I'm getting the balance right of rest and treatment. Some days I am so bored and fed up, I feel so useless and pathetic that all my day consists of is CF related activities and attempting to do household chores which mostly Pete ends up finishing off anyway!

I look back to when I first joined the CF community, my health was worsening and I was facing giving up work. I made lots of friends on-line who I felt understood me better than people around me, it was also when I started to take an interest in my health and ways to improve/stabilise it, can you believe I didn't even used to wash my nebuliser equipment?!

Lots of my friends have now either had lung transplants, need lung transplants, have passed away or their health has deteriorated. People that had the same lung function and health as me are now needing lung transplants which scares me but also makes me feel proud that I have managed to avoid this so far. CF is unforgiving, I work really hard to stay stable. I'm not admired or called brave, nobody calls me an inspiration, because in order to be those things you have to push yourself to work a full time job or go above and beyond what your body is capable of and I'm not willing to do that in order to end up dead or dying like lots of people with CF do. Lots of people probably think I'm lazy or one of those scrounges you read about in paper, on benefits, didn't you know the whole country hates people like me at the moment? Sometimes I feel guilty if I go out for a meal out as the papers make me feel like I shouldn't be able to afford my electricity and gas, never mind a meal out, because I am in receipt of benefits. However then I remember my husband does work, so we are not complete scrounges...!

Having CF at my level of CF is a job in itself, I have to do a hell of a lot to stay alive, some people with CF don't, they manage to get on OK with minimal extra effort. I'm not implying that people with CF who did push themselves are in the wrong, or that everyone who needs a lung transplant brought it on themselves. It's such a fine balance between having a life and looking after yourself, nobody gets it right and even if they do sometimes there is nothing anyone can do to prevent that downward spiral, I'm sure it will happen to me eventually. I just feel lucky that so far I'm doing OKish, I have a supportive husband to help me and I'm in a situation for the time being where I can concentrate on my health and not have to run myself in to the ground with work. This might all change through if I don't qualify for ESA though and that is why I am really scared of what may happen in the next few weeks. I really wish the government and society as a whole understood long term conditions more accurately.

The Dreaded Diabetes

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

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

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

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

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

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

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

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

Happy New Year!

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

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

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

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

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!

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!

Summertime

Well I must admit I am totally confused by how many enzymes I need to take with food! I have not moved over to Nutrizym 22 yet but have been experimenting with Nutrizym 10. I am not taking any with breakfast or lunch and only two with my evening meal and 4 with a really fatty meal such as takeaway. Yesterday I went to the cinema and ate about 2/3's of a large popcorn and two small milky ways (well Lidl's version of them!) and only had one tablet. I seem to be more regular and less bloated! I need to speak with the dietitian at my next outpatients appointment as I am so confused, i'm not sure what I should be looking for in my stools (gross I know). I used to get belly ache and horrible stools if I didn't take my tablets, is it possible to become more pancreatic sufficient as you get older!? I think they need to test me or I need to confirm what I should be looking out for. It's really weird eating and not taking any tablets, I keep getting them out of the drawer automatically! My weight is going up if anything as I am just hungry all the time, it's driving my insane, I don't know if this is linked to me not taking my enzymes. Food just tastes so good at the moment!

I'm really stable at the moment and feeling good. Don't get me wrong I still have CF and have serious lung infections and lung damage and my energy levels are not the same as someone without CF, I still cough lots and get breathless and have to do loads of treatment every day. Yesterday in the cinema I was coughing loads and was worried I was annoying everyone, I was scared I'd even coughed a greeny on my hand (I hadn't thankfully!), so I still have to deal with crap like that on a daily basis. I'm saying this because some people seem to think that when I say I'm feeling good I am as healthy as a normal person, no not at all, one can only dream... However, I am good for me, but if a healthy person felt like me they'd probably be curled up in bed whining.

I have been to the gym four times a week the past two weeks. Can you believe that?! Yoga once a week and gyming it three times, I swear if I ever have a transplant and have normal energy levels I'm not going to be able to sit still because even now if I feel good I feel I need to be doing stuff to keep that way. Obviously my gym sessions are not anything to shout about, there was a small child next to me on Thursday who was going faster on the cross trainer than me but I'm beating my personal bests if you can call them that, so I'm proud and happy with myself.

I feel like life is how it should be at the moment, I wake up on a morning and rather than dreading the day and figuring out how I'll manage to get through it, I can wake up and look forward to the day. Summertime is definitely the best time of year even if we are in England and it rains for most of it!

Nutrizym

I had outpatients on Monday and all went well, I seem to be having a good streak at the moment, 2 months without IV's and counting! I've had to have my port flushed twice since my IV's and had two outpatient appointments, not a usual occurrence for me these days! When my port is not accessed it has to be flushed every 4-6 weeks, which basically means they put a needle in the port, flush in some hepflush and pull the needle out whilst pushing the last ml of hepflush in. Hepflush helps prevent blood clots in the line and pushing as the needle is pulled out creates positive pressure which prevents back flow in to the port.

When she flushed my port on Monday it really hurt to the point I thought she had missed the port, when I looked I saw she had put the needle in at a funny angle,kind of diagonally which explains why it hurt! It also hurt when she pulled the needle out and the area is all bruised now so not the best flushing of port experience.

My lung function is steady at 42% and my weight is 55.6kg so finally back up to pre Christmas standards. I must admit i'm struggling with the weight gain, I know it's stupid but when you lose weight and put it back on you feel fat and frumpy no matter how much you weigh as you are used to seeing yourself slimmer! My appetite is insane, I just want to eat all the time but then I get bloated and feel horrible afterwards so as well as the weight gain i'm frustrated at my appetite! I know it's all good CF wise and it keeps me healthy which makes it even more frustrating as one part of me hates it and one part of me knows its good for me!

The people who make Nutrizym 10, which are the tablets I take with food have decided in all their good wisdom to cease production which leaves me with a slight problem. I have never tolerated Creon which is the usual choice for people with CF, I was on Pancrease and they stopped making that a few years ago so I moved on the Nutrizym 10 and it's only the last 18months I think I have finally figured out how many tablets I need to take with food. Everyone with CF is different so you can't be told 'take 4 with a fatty meal' '2 with snacks' as some people with CF need to take 20 with a fatty meal, some only need to take 1! Its a case of trial and error. I can't imagine been able to eat and not having to take tablets, to me that is weird. Every time I eat I have to try figure out how many tablets to take depending on how fatty the food is, then I have to space the tablets throughout the meal as you can't just take them all at the start or at the end. I don't always get it right and if you take too many you get constipation, you take too less you get fatty, very smelly stools and belly ache and bloating.

So with Pancrease I took 9-10 with a very fatty meal such as a takeaway, 5-6 with a meal and  3-4 with some cereal, lunch etc. To be honest i'm rubbish at knowing how much fat is in food as i've never had to watch my weight or diet or anything!

The we went on Nutrizym 10 and I figured I needed to take half of a Pancrease dose minus 1 as a guideline, so 5 with takeaways, 3-4 with a meal, 1 or 2 with snacks, cereal etc. I find taking less is better than more!

But now they don't do Nutrizym 10 and i'm having to take Nutrizym 22, if this doesn't work out I may have to try Creon again even though they give me the runs and make me look pregnant (I hope if you don't have CF and are reading this you are grateful you can digest your own food!). I have a suspicion I may not be totally pancreatic insufficient as the doses I take are quite low compared to others and I can get away with having a few biscuits or a hot chocolate and not taking any tablets, plus all in all I do not struggle with my weight half as much as others with CF so I suspect my pancreas is not totally useless! I think this may be partly why I don't get along with Creon, who knows..? Trouble is that Nutrizym 22 is double the strength of Nutrizym 10 so I have been told to half the dose of what I normally take, how you can half one tablet is still a  mystery, I think i'm going to open the tablet and only have half of the little balls inside, the other option is to not take any tablets with food that only required 1 Nutrizym 10 and I'm quite looking forward to the prospect of eating and not taking any tablets! 

I don't have any Nutrizym 22 yet and still taking Nutrizym 10 whilst stocks in my cupboard last! But I am doing some trial and error by not taking tablets with certain foods, so far I have had a cup of hot chocolate and 3 hob nobs and I had salad with salmon for lunch, all with no tablets. I feel like this experiment is going to help me make some grand discovery that in fact I do not need any tablets with my food at all and I have lived a lie all these years! I think i'll hold off having a takeaway with no tablets just yet as that would be one nasty poo the next day....!


I'd like to mention the conversation I had with a registrar at Outpatients on Monday. The dietitian had left him a note saying I was moving on to Nutrizym 22 so he asked me how often I would take it? I informed him I needed to take them with food, 

'so three times a day?' he asked me. 

'No I take them EVERY TIME I eat, it's the alternative to Creon'

'right ok' he said looking confused

So he gave me a prescription as he left and what has he prescribed me? Nutrizym 22, 1 tablet three times a day! Sigh...If only the dosage was so easy....! This is why I hate seeing the non CF doctors!

I'll leave you with a cute picture of my cousins little boy, we went for a walk on Wednesday and I also saw them yesterday at my Nanas, somehow my cousin ended up washing my car for me whilst I looked after him, bonus! Alfie was very well behaved with the baby and he also did excellent in dog training, I keep meaning to try get a picture of him doing agility, very proud of my pooch!

Italia

Well hello there! Or should I say Ciao! That's right, I am back from Italia!

We had a fantastic time, we stayed in Sorrento which is close to Naples. Its a beautiful place and we would go back again. Even the people are beautiful, I hate them haha! There are lemon and orange trees everywhere, they make a nice alcoholic drink called Lemoncello with the lemons and that's coming from someone not a fan of lemons!

My CF has being very kind to me lately, before our holiday I was going to the gym 2-3 times a week and walking Alfie almost daily and whilst on holiday I have felt good too. My chest always feels better on holiday anyway as I think the heat dries it up so I cough less but it means once I get home there is alot of think mucus to come up! I had an outpatients appointment today and my fev1 is 42% and my weight is 54.5kg, I'm surprised I'm not about 60kg with the food I ate on holiday! I must admit I did get sick of pasta and pizza though and will be eating other types of food for awhile! So I got a thumbs up from the doctor, yeay! I also had a ultrasound this morning to look at my liver, its standard I have a scan every 2 years. I had to fast from last night and the scan took about 20 minutes.

I wasn't very impressed with Thomson with regards to my oxygen, they got really funny about my letter saying I had changed the date on it (which I had to save time and effort, I didn't realise it would be a big deal!), so I had to get another letter signed by my doctor which isn't exactly easy, Pete had to do it by fax at work to get it in time. They then didn't send me anything to confirm the oxygen was arranged so I had to call them, they claim to have emailed me.... When we checked in we couldn't be sat next to each other, we had the aisle between us, turns out needing oxygen gets you no extras or special treatment! When I got on the plane I checked they were aware I needed oxygen and they told me they had been told I 'might' need oxygen! So I got dumped with this stupid tank that required a white mask with a bag on the bottom of it, not the nasal cannula I had been promised when I spoke to the extra needs department! I had to sit straight else the bag kinked and got cut off, I felt like I couldn't breathe with the stupid bag and of course I looked an idiot! Luckily the seats behind me were free so Pete and I were moved to them so my tank could have its own seat, which begs the question why we were not seated there in the first place?!

Anyway I complained to the rep when we arrived and she made sure they knew I needed oxygen for the whole flight on the way home and would like a nasal cannula which thankfully they arranged! Again we had an aisle between us, the seat next to me was free for my tank which was lucky as it's not nice having the tank by your feet. This tank only gave you oxygen when you breathed in through your nose which was slightly annoying but alot better than the mask!

I was really tired in the airport on the way home, how much walking do you have to do in airports?! I'm seriously considering asking for a wheelchair next time so Pete can wheel me around!

We went to look around Herculaneum and Pompeii (both destroyed by Vesuvius in 79AD) the Sunday before we came home which was amazing, you can't believe the house you are stood in or the mosaics you are looking at are nearly 2,000 years old. Pompeii is massive, it was home to 20,000 Romans so we only got to see a small section of it really. I struggled walking around with the heat, dust and uneven floors but it was worth it!

We also hired a car for the day and drove on the Amalfi Coast, we got upgraded to a convertible Fiat for free which was good! Those roads are so scary, Italians are crazy drivers and the roads are narrow and bendy! It's a great drive though and very beautiful.

We spent the rest of the time relaxing by the pool, I of course sit in the shade. The heat makes me feel unwell and I'm very pale which people like to point out to me and make fun of all the time. Yes I don't tan, yes I am pale but I have accepted it, it's how I was born and I am not ashamed of it. I don't know why people have a problem with paleness, everyone is obsessed with getting a tan. I am pale and proud!

I've made a video of photos from the holiday as there are so many, the song is 'Torna a Surriento' (Come back to Sorrento), what other song could I have had?!

CF Week

Today it is CF Week so I have been doing my best to try educate people about CF by posting blog posts on facebook everyday. A fair few people have looked at them (I can look how many people have viewed posts etc) so hopefully it has done some good. I'd like to arrange some kind of fundraiser one year but I'm not very good at stuff like that so wouldn't know where to start!


Yesterday I finished my IVs thank god! This course has been horrid and seemed to last forever! The headaches settled down slowly after the first week which was a massive relief but then my eyes really started playing up, so puffy, weepy and sore. I looked like some kind of drug addict with my red, baggy eyes! It got to the point where I couldn't see properly at times and I considered phoning the hospital as I wasn't sure if it was an allergic reaction, I'm sure it is but if it's not serious I tend to put up with it. Anti histamines do not help at all, neither goes putting lots of aqueous cream around them to help with the dryness. The only thing that seems to help a little is if I put some comfort eye drops in my eyes a few times a day. I think its the Tobramycin that causes it as they are worst on a night when it's going in me and the following morning.


On Wednesday I looked a right mess, my eyebrows desperately needed  waxing, my hair looked shocking, puffy red eyes and to top it off I woke up with a coldsore! Grrr! I got my hair done on Wednesday, finished my IVs yesterday so my eyes are looking better already and I got my eyebrows waxed today, the only remaining problem is the coldsore! At least I am feeling back to my normal self anyway!


My fev1 was 44%, my weight is 54kg and my sats were 95% so all is looking OK!


I had a fit to fly test about 3 weeks ago and failed miserably. My sats fell to about 85% when given oxygen for 20 minutes that would be the same as on a plane. Therefore I need extra oxygen on our flight to Italy, I've never needed oxygen for a short haul flight before so I'm a bit gutted really. Luckily Thompson who we are flying with provide free oxygen (we checked when booking just in case) and the form my Doctor needed to fill in was really simple. However the letter needs to be signed no more than a month before travel so they have said they can't accept it and I need another, so annoying! I've just changed the date on the letter and will send it again in a few weeks...! I've also sorted our travel insurance, the quote I got before was no longer valid as I needed oxygen on the flight and they wouldn't cover me anymore. Luckily the broker (Gill Noble) found another company for me and I also called Insurance Choice but the brokers quote was cheaper at £185 for Pete and I, so we went for that. The joys of having an illness and going on holiday!!

Still Here!

Boo! Don't worry I am still alive!

I ended up going on my IVs and I am on day 7 today. I am on Mero and Tob and the nurse came to see me today to do the usual shenanigans , weight is 54.2kg so working its way up, sats were 92%, yikes! They always seem to be in the low 90's these days, no explanation has been provided. My fev1 when I started IVs was 43% so not really low but the doctor felt that if I felt I was not feeling my best and slipping I should start some IVs pronto rather than wait and need them in a few weeks anyway.

These IVs suck big time, I am sick of getting pissing headaches and I'm sick of all around my eyes being red raw. I'm sick of having bowl problems and I'm sick of wanting to just sit around and do nothing because IVs claw at my soul and make me in to a self pitying fool with no energy. The doctor told me to take is easy and rest so that's what I am trying to which involves watching stuff I have recorded on our new sky+ box (yeay we have sky!) and watching lots of naked, fit men in Spartacus... This programme makes me think I should be going to the gym and I have been once this week, better than the last three weeks when I went zero times! I will get a toned belly, I will get a toned belly...! :o) I can't complain, the daily debate in my head seems to be 'who is the fittest? New Spartacus, old Spartacus, Crixus or Gannicus?', I still can't decide!

Other debates in my head are 'should I go the gym?', 'should I get out of bed?' 'will it ever stop raining so I can walk Alfie?', 'should I make myself eat something?'. Other thoughts in my head 'sh!t I forgot to get my IVs out of the fridge!', 'go away headache I hate you!', 'why is so much of my hair falling out?', 'has anyone played on Draw Something on Petes phone?'.

I'm going to tell you something and you won't believe me but it's true! The prescription clerk at my GP's agreed to write me a prescription to be ready for Tuesday when I only asked for it on the Monday. She broke the rules and did not make me wait three days for a prescription! I told her I had run out (which was true) and needed the medication and she sorted it for me, it's seriously a medical marvel!

Pete went to Scotland sailing last week and I was all alone. I actually enjoyed it the first few days, I have always been abit of a loner, enjoying my own company. I could eat when I wanted, watch what I wanted, spend all day talking to Alfie and I didn't have to wear earplugs in bed with the snorer away from home. No wait... one of the snorers was away from home, Alfie was still here, although he can be put in his basket when I fancy it. I went to my mums for tea twice and had a friend stay over one evening after we had a Spartacus night, yes I have introduced her to Spartacus and now she is in love too. Towards the end of the week I did start to get lonely and miss my hubby even though we spoke everyday, also very tired since I needed IVs and had to do a lot of things myself which Pete usually does. I managed to put the wheely bin out but getting it back up the drive was a big no, so had to leave that for Pete on his return. I had a few ready meals, had to empty the dishwasher myself and had to get the ironing board out and put it away which I hate. Glad my darling husband is home now though as I did miss him lots! He hurt his thumb by getting it stuck in a rope when the boat was moving, not the best thing he's ever done! It's all bruised and sore but luckily not broken. He is temporarily suspended from doing my IVs as he was caught yesterday wiping his nose on his hand then carrying on preparing them, when questioned he told me 'it will be alright'! This is not alright since its all supposed to be sterile, so although I appreciate him doing them for me, I won't appreciate it if I get an infected port, so I think I need to keep an eye on him next time!

End of IVs

This two week course of IVs has been one of the most nicest (if that's possible) courses of IVs I've had in a long time. I have had few side effects and I actually feel like the IVs have worked for a change! I even went clothes shopping on Monday which I never do as it tires me out and makes me feel light headed, I got a new pair of jeans with my birthday gift voucher, a top (a Primark special for £4 haha!) and some birthday presents for my friends. I had to get size 8 jeans which was slightly strange as I don't think I have ever fitted into size 8 jeans, but the 10's were far too big and jeans always go baggy, all my size 10's I have are like that now and I'd like a pair that are actually tight on me, even my skinny jeans fresh from being washed hang off me at the moment.

The first week of my IVs I felt very tired and had afternoon naps, I also had a fair few headaches but this improved in the second week. I will definitely be asking for IV Aztreonam again as it's much more friendly than Ceftaz or Mero!

Today I ended my IVs and when it came to taking my needle out my needle was in my arm in a very awkward position, not how it entered my arm last week! I recall trying to reach something in my car the other day which involved twisting my arm around, never the best idea when there is a needle in the top of your arm. There was a popping sound and shot of pain through my port but it flushed fine so I didn't do anything about it, anyway this must have been when the needle repositioned. My arm looks in good condition, there are no sores, just flaky skin and it's slightly red, a massive improvement to how it used to react, so I think we have my allergies etc figured out now!

My weight is up to 54.1 kg which is good news and then I did my lung function test. The physio looked at the numbers and a big grin came on his face, he told me it was good and asked me what I thought it was. I guessed 46%, then he told me it was 50%!!!!!! I can't believe it, I nearly cried on the way home because I was so happy. I'm so relieved as I have being worried about my health over the past few months and doubts have crept in to my head about where it was going. I've wondered if Pete and I are doing the right thing trying to have a family when I have struggled especially with my weight as my weight is always stable so to lose this safety net was a big worry for me. I didn't discuss these feelings with anyone apart from Pete as I know people already have doubts about our plans, I feel like every time I have a rough patch people are judging how we will cope and I even judge myself and wonder if I am selfish.

Before and over Christmas when I was struggling to even bathe on my own or walk to the bathroom I decided to myself that if I didn't improve we would have to cancel our surrogacy plans, I really thought this could be the start of a totally different direction to the future I had planned. When you come out of the other side it's easy to think you were being dramatic and it was just a rough patch, but when it's actually happening you have no idea what the future holds. I'm not saying I thought I was dying, but I thought I might not regain my lung function and the damage could be permanent. So I am so happy that things are back on track and to get an fev1 of 50% is just amazing and illustrates how stable my health is overall.

Pete and I have booked a holiday to Italy! I am so excited! We are going to Sorrento for 10 days and I can't wait! It was quite difficult finding a suitable hotel within our price range as we needed something central as if I have to walk to and from the hotel it will just tire me and ruin the holiday especially since the area is very hilly and also I needed a room with a fridge for my medications. However we found somewhere eventually, I now need to have a flight test done and sort out some travel insurance. We are booked with Thompsons and they provide free oxygen on flights so if I do need oxygen it's not as big a problem and I have been quoted around £130 for insurance for Pete and I with a £350 excess. I was expecting it to be a lot higher due to my hospital stay so quite relieved I can still get covered for a reasonable'ish' price. I got this quote from Jd Travel , I've used them for years. However a few people with CF have recommended Insurance With so I'm going to give them a try as well.

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!

Goodbye Steroids

Today is my last dose of steroids and I'm quite glad really as a few of the side effects starting now aren't that great. I really enjoy the energy they give me and 'the false sense of being well' , however I am not enjoying the indigestion problems (constipation and now the opposite!), mood swings, waking up at 5am and not being able to get back to sleep, greasy, spotty face, dry mouth/thirst and sweaty hands! Luckily my face doesn't seem to have gone all bloated, but I know it would if I stayed on them for longer as it has in the past.

As I have been reducing the dose I have felt more and more irritable so I am dreading the first few days of been off them completely. It doesn't help when people annoy me, like the woman who stormed out of her house on Monday to have a go at me for Alfie weeing on her plant when all he did was sniff it or the woman who when I asked her to recall her dog away from me and Alfie as it was jumping all over us and getting tangled in Alfie's lead and she was just ignoring it, told me 'he just wants to play' 'this is a park you know'! These type of situations do not help!

I am worried that I will start to feel unwell again though, I'm still coughing sputum up during the night and I keep getting this horrible rumbling in my chest and crackling day and night but then I don't really cough anything up! I tend to cough lots up in my morning physio but not much in my evening physio but then as soon as I'm in bed its crackle, rumble and then I sometimes wake up choking on sputum!

I am trying to go to the gym lots and I went four times last week so very impressed with myself! Will be interesting to see if I can keep this up once I'm off the steroids!

Weight wise I have no idea as one day I weigh 53kg another day I weigh 55kg, but I am eating more and having my supplements so trying my best!

I have a busy few weeks coming up so not really done much the past week. I did take Alfie to a dog class last Thursday, one of the tasks was to get your dog to sit on eight mats one after the other all in a row and Alfie managed it in 28 seconds, yeay!

I've got to have a filling next Monday and I'm scared, I've never had a filling in my life and no idea what they do, so wish me luck!

Things Are Looking Up

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

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

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

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

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

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

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

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