Holiday Tips

When you have CF and you go on holiday, there is so much more to think about. I absolutely hate packing/planning for holidays because of this reason! Here are some hints and tips for holidays I have picked up over the years.....

Take all medication/physio stuff/nebs in your hand luggage, your suitcase might get lost! I have never been questioned about medication in my bag. They once looked at my I-neb as it looks abit like a bomb on the scanner and they once put my nebuliser stuff through a vapour machine as they are liquid, I was informed I should bring the pharmacy labels with me for the nebuliser stuff due to them being liquid but that was it.

I'm managing OK with my weight at the moment and I always eat loads on holiday anyway so I didn't bother taking any supplements with me. I think if I was on overnight feeds etc i'd probably just manage without them for week or take oral supplements instead, but even that would cause packing/weight problems

Remember to take a clear bag to put your liquids in for the airport checks

Make sure you get a letter from your CF team that says you are fit to fly with/without oxygen and a letter asking customs to let you through with your medication

I use a Frio bag to keep my tobi and pulmozyme nebs cool whilst travelling, I got mine off Amazon and I think its an extra large size. This won't be good enough for the whole holiday, you need to make sure your hotel room has a fridge! However it's OK for a 1-2 days travelling

If you need oxygen on your flight keep checking they know you need oxygen when you check in, when you get on the plane, because I'm telling you, these airlines seem to be useless!

Remember to take some washing up liquid to wash your nebs with after use! I have yet to write to Fairy and suggest they make a travel sized washing up liquid...! What I tend to do is try to not end up taking a full bottle of washing up liquid that will bump the weight of my suitcase up!

Unless your hotel room has a cooker or kettle I have yet to find a way to sterilise my nebs whilst on holiday. I don't really fancy taking a steriliser with me so I just make sure they have a good boil before we go away and as soon as we get back

Always take lots of your food enzymes, god forbid you should lose them or run out, talk about spoiling your holiday!

For travel insurance quotes call JD Travel  they have always managed to find me a reasonable-ish quote...!

I always try to remember to take a list of all the medication I am on, just in case I end up in hospital etc!

Unless you have a kettle to boil water and then let cool down, doing your nasal rinse can be a pain too. I used bottled water and just put up with cold water shooting up my sinuses! Not the best but when options are limited what can you do?!

To mix up my movicol I saved a water bottle and shock it up in the bottle, due to lack of spoons. 

Take spare movicols/sennas (or whatever you use for constipation), you don't want to get blocked up due to dehydration/travel. I had such bad problems with this on holiday and nearly ran out of supplies even with my spares!  Also, this goes without saying but drink lots of water, this will help with your chest and bowels

Remember to take salt tablets, you can get a prescription from your CF team. People with CF loose lots of salt when they sweat and it needs replacing, otherwise you can feel ill

Take an emergency supple of antibiotics/steroids in case your chest is naughty, I also like to take some spare ventolin and hypertonic saline nebs. 

Doing physio whilst travelling is a right pain in the arse. It's not exactly something you can do in public. On the way home I had to miss my evening physio session as we checked out of our room at 11am but didn't fly until 9pm, I did my tobi on the plane but not my hypertonic saline as I knew this would make me cough up sputum which I am not willing to do on a plane in front of strangers. I knew i'd have to miss my evening physio so did my pulmozyme in the morning an hour before my morning session (I usually do it in the evening), I don't like to do my pulmozyme without doing some physio afterwards as it loosens everything up but then you are not coughing it up!When we went to Thailand for out honeymoon I managed to do physio in a medical room at Dubai airport, that's the only way I can see getting around not missing it.

I don't go on two week holidays, not only is it too much to pack/plan medication wise, I don't like going away for that long! 10 days max for me! Last time we went for 2 weeks was our honeymoon and I didn't take enough disks for my I-neb!

Which leads to my last tip. if you have an I-neb, remember to take enough disks with you....!!!! And don't forget your I-neb charger!! Also make sure you will have enough disks when you get home, those disks can take forever to arrive in the post, trust me!

If anyone else has any more tips feel fee to leave them in the comments!

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!

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!

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!!

2 Years Later

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

Here are some pictures from the wedding


Some pictures from my Nana's party

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

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



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

Wee, Blood and Poo plus Other Things Too..!

I can't believe I finished my IVs over a week ago and haven't updated on here, bad Gemma!

Finished my IV's last Monday, my lung function was up slightly at 43% although it was all a mess really. When I started my IVs my lung function was 38% but then when I ended IVs the figures didn't match and the physio discovered that when I started my IVs I'd been put into the system as male! Males should hold more air in their lungs than females so when my percentage was worked out, it was lower than it actually was, it was in fact 41% at the start of my IVs.

I had lots of blood taken as they did my annual blood assessments. I had to fast from 9pm the night before, why when you can't eat do you want to eat everything?! They took about 30 tubes of blood, they test for everything such as if my blood clots properly, my vitamin levels, iron levels etc. So that was needle number one in my arm (they can't take the blood from my port for some reason). I then had to drink a pint of the one of the worst drinks in the world, its basically glucose and it makes me want to be sick. Even worse you have to drink it within 5 minutes, just thinking about it is making me feel sick! Then you wait an hour and they take some blood from you. So this was needle number two, apart from the vein wouldn't bled back so she had to try somewhere else, so that's needle number 3 and in my wrist which is nice and boney so not the most pleasant place for blood taking. Then you wait another hour and they take some more blood, so needle number 4 in my other wrist. Needles don't even bother me that much anymore to be honest, the little ones for blood are only a prick, I don't even mind big ones that much if they are going in my arm, there are worse things in life. I'm not sure how I'd feel about having needles in other areas though! After this blood test, you can finally eat!! This test is to check you are not diabetic, its called a glucose tolerance test and I got my letter today to say it came back fine and I don't need to be tested for another year. Yeay! I also had a bone scan whilst on my IVs and I got a letter the other day saying my bone density has slightly improved since my last scan, so that's good news!

I also had a chat with the Doctor about my bladder problems, I have two problems really. I go to the loo far too much, up to six-seven times during the night and many more during the day. I also have stress incontinence, this is a polite way of saying I sometimes wee when I am coughing hard. It's not nice, its embarrassing, even talking about it to a physio and doctor, I think that's why they have a nice name for it! It's very common in CF though and they have started asking patients about it more often as they know they are too embarrassed to bring it up. The doctor is not sure if my two problems are related or not, if I have stress incontinence this means I go to the toilet often to try prevent it, so before I do my physio, before I go out anywhere etc. This could mean my bladder has reduced in size and therefore I need to go to the toilet more often. The stress incontinence could also be irritating my bladder. Or I could have a bladder problem that I need to see a specialist about.

I have a leaflet with some exercises to do, that was fun practising doing them with the physio...! They are exercises to try and strengthen my pelvic floor muscles, so that when I cough I won't have a problem! If they don't help then they will refer me to a specialist. However now I know I should be going to the toilet less, I have been doing so and I think I am already improving slightly. I keep forgetting to do the exercises but try to remember, 4-6 times a day is a lot to remember amongst everything else!

Here are the exercises for those of you too afraid to ask your CF team!

Type 1 -Basic exercise, can be done in any position

-Squeeze around the back passage as if trying to stop wind escaping, at the same time squeeze in front as if trying to stop the flow of urine
-You should feel a squeeze and lift, a drawing feeling inside - this is a pelvic floor contraction
-Hold this squeeze and lift for a few seconds (up top 10) then relax, repeat a few times (up to 10)

Type 2 - Quick contraction

-Do the same squeeze and lift, but relax immediately
-Allow a few seconds for the muscle to relax completely then repeat up to 10 times

You must do both types 4-6 times a day.

Do not exercise by stopping the flow of urine in midstream; this can affect the normal working of the bladder.

Bladder Advice - Aim to empty your bladder no more than 7 times during the day and once at night, avoid going to the toilet 'just in case'

Since I finished my IVs I haven't felt back to my normal self to be honest, I'm still tired and very breathless at times. Yesterday was terrible, however I have had some problems with my nebuliser as the company are idiots and don't send me disks in time (that you need for the I-neb to work) and I have had to miss my nebulisers. Luckily a CF friend saved me (thanks Woody!) and posted me a disk to keep me going and I now have the disks from the company after ringing up and having a 'talk' with them. I also still have constipation, I've had it on and off now for about 4 weeks. I can't seem to shift it (literally haha), every time I reduce my movicol dose to my usual dose it comes back and I have to up my dose again. I don't think this is helping with how I feel as it makes you feel so sluggish and bloated and even sick at times. I think I'm going to have a higher dose for another week and then try and reduce it slowly again. I can't decide if it's worse to become reliant on movicol or to become blocked up!

I went swimming last week and managed 22 lengths, so was pleased with myself. But haven't felt up to it this week, I'll go to yoga tomorrow and hopefully next week I'll feel up to swimming again!

Sorry if this post has being too informative about particular areas, but at the end of the day this is a CF blog and people with CF have problems with practically every part of their body. Most of these issues are not suitable for small talk... if you don't have CF and are reading this, be grateful it's not you who has to describe your poo to a doctor, talk about your toilet habits with them or inspect your sputum with the physio. For people with CF it's quite normal and required, so I guess we become accustomed to it!

Happy Yorkshire Day!

Ah smelly wee, constipation, dry itchy skin, sore, crusty eyes, wanting to sleep all the time, thrush, daily headaches and sweaty nights, that right it's IV time! One week in and the tiredness is slowly reducing after me basically hibernating for a week and the other side effects are going up now the drugs are well and truly into my body.

I fell asleep one afternoon last week and seriously I could not wake up, I was actually laid on the sofa thinking 'Gemma you need to wake up, you are covered in sweat and you need to make tea' and I tried to open my eyes and they wouldn't open, it was like they were made of lead. So I went back to sleep and tried again, and again and after about 4 attempts I finally opened them and realised I'd slept for about 4 hours. I've slept like a log every single night, even Pete's snoring hasn't bothered me, but I've woken up at 5.30am every morning which is rather convenient as I put my IVs on at around 6am. I've then slept again until about 10am.

I've got a headache every single day, mid afternoon time, in fact I'm probably due one now. I got a lovely one yesterday that only went this morning once I'd been awake an hour or so. Yes I am taking pain killers and sometimes it gets rid of it, sometimes it doesn't.

I also realised I have constipation on Saturday after thinking I was just getting fat over several days. I had stomach ache on Saturday night and then Pete said something or other about toilets and that's when I put two and two together and realised the problem! After a few movicols I'm feeling less fat now!

So yes IVs are upon me and I have one week left now of the joys they bring, then I can return to normality were my pee doesn't stink like cats wee, I can wear makeup on my eyes and I can sleep without waking in a pool of sweat.

On the plus side, the cold seems to have buggered off and I'm coughing a lot less, so objective achieved! I'm also eating like a horse (where does this saying come from? Do horses eat a lot?) which will keep the dietitian and Asda happy..!

Its Yorkshire Day today so Happy Yorkshire Day to all you lads and lasses!
Here are a few Yorkshire words for you: ginnel, lug, larking, reeks, kegs and my very own word I created 'wang', oh and apparently 'foisty' is a Yorkshire word but I think Pete is lying!

Birthday

Gosh, I don't know where the time has gone!

It was my birthday on Wednesday and it involved quite alot of eating! I went over to Hull with my Mum to see my youngest brother as he is at University there. We had a nosey around his accommodation and then went out for lunch. Then in the evening Pete took me out for Chinese and I ate loads! I think the lunch must have expanded my stomach in preparation.

I got a new charm for my Pandora bracelet, its my birthday stone which is purple and also my favourite colour, coincidence or not?! I also got some pj's, slippers, blu ray dvds, little purple clutch bag and then Pete is taking me to Hever Castle in April as my present, can't wait! I also got some money which is just going into our surrogacy savings.

On Thursday I went to Scope to end my latest partnership and look at starting a new one and then I had my knitting lesson in the evening. I can now pearl stitch although not very good, I keep making it too tight for some reason so got to work on making the loops looser. I'm really enjoying the lessons, it's nice to have a good chat with the lovely lady who teaches me as well as learn something new!

On Friday Pete and I went to Manchester to see a solicitor about surrogacy and then for some strange reason I went to bed at 9.30pm as I suddenly felt incredibly tired and literally as soon as my head hit the pillow I was asleep! No idea what that was about as I'm feeling pretty good at the moment. Sometimes I have lots of energy and feel great and wonder what it must be like to have this much energy all the time, I think I'd be running around like a loony! No wonder other people can do so much in a day!

On Saturday we went out with some of my family to this pub that was having a band night and raising money for CF. There wasn't much awareness raising, just a few posters and money collection tins, we entered a raffle but moved on to another pub before announced the winner! Damn it!

My skin is so bad now though, I have all red bits around my eyes and on my forehead, must have drunk too much and now I'm old it affects me more! My skin has been really dry around my eyes though since I was on IV's, I'm using aqueous cream but it doesn't seem to be doing much! So now I have dry and red skin, argh! I'm also sick of been blocked up, movicols don't seem to be doing much, think I'm going to have to up my dose to two a day instead of one a day.

Here are some pictures from Saturday night

Half Way There

7 days down and 7 to go!
IVs seem to be going OK, my chest is feeling alot better, I'm coughing up less sputum and it doesn't feel to be rattling around my chest as much. Although my IVs seem to be making me quite tired this time around, I think I could sleep all day given the opportunity!

The nurse came to see me today and make a very valid point when I told her about my tiredness and that Pete has had to make tea alot. She pointed out that if I was in hospital which most people normally would be when having IVs, I'd get everything done for me. But as I'm at home everyone seems to think (including me) that life goes on as normal, when in fact I actually need to get some rest to help the IVs work.
The whole point of home IVs is so they don't interfere with my life, but at the same time I still need to rest. I guess it's a balancing act!

My silly port didn't bleed back when she changed my needle, so I had to have some blood taken out of my hand. The needle vibrated when she started pulling the blood out, it was weird but cool! She said it must have touched a nerve but it didn't hurt, never had that happen before, very interesting..!

I've lost abit of weight which is quite funny because I was moaning to Pete last week that my belly was getting fat and I was going to go on a diet, I then enquired as to what you can eat on a diet and when he told me I decided dieting wasn't for me. However it would seem I have lost a kg in a week anyway. My belly isn't as fat anymore anyway, I think it was more all the bloating from those damn iron tablets that are still causing me to have painful constipation. I'm up to two movicols a day to try get things moving, but it's still a struggle! The nurse says if my levels come back OK, I can stop taking them, wahoo! I swear last week I could not fasten some of my jeans my belly was sticking out so much!

I started my knitting lessons last night, it's a lady I know from Scope that is teaching me. I went to her house and spent about an hour there and lets just say, I don't think I am going to be a natural! We are starting with a scarf and I got about two rows (if that's what you call them) done, even then I managed to get a big hole in it somehow and she had to correct it! Her cat is so funny, he only has three legs but you wouldn't know with the way he jumps around. She herself has cerebral palsy and cannot walk or move herself around, amongst other things, it sometimes puts your life into perspective when you see how other people with disabilities live, I may be poorly but at least I have quite alot of independence compared to others.

The Festive Season

Dear Blog, I am sorry I have neglected you over the last month. What can I say? I have been busy and not had much to say! I promise to give you more attention from now on...

Happy New Year everyone! Lets hope that 2011 is going to be a good, happy and healthy one! My new years resolution is to learn how to knit! I am starting my lessons this months with a friend from Scope, so put your orders in for scarves etc haha!

Here's a run down on what I have got up to over the festive season...

On Christmas Eve we went to my Nana's like we do every year

My brother and his girlfriend


Two of my cousins


Christmas Day we went to my Dad's for breakfast, his heating has broken so we were kept warm by the smallest heater ever! Good job I got a new coat for Christmas! We then went to see my Nana then went home and waited for my brother to come and pick up us. He rang us after about an hour to inform us he had forgotten to come and pick us up! So we made our own way to my Mum's for Christmas lunch, then in the evening went to my Aunties for a party.





On boxing day we went to my aunties from my dads side and I finally got to meet his girlfriend and then on the Monday we went to another aunties from my mums side.

Then on Wednesday we made our way over to Stockport to see Pete's family, I am terrible at remembering to take photos, I have told Pete to get some off his Dad, but so far no luck! Pete's parents bought us lots of lovely bedding and some plane tickets to go on holiday with them on the sailing boat in May, wahoo! We met up with some friends in Stockport too, I actually remembered to take some photos here!





We came home on Friday for New Years Eve, had some friends around to ours and someone came up with the smart of idea of playing a drinking game , we then went to our local pub for midnight, karaoke was involved I'm afraid to say, then we came back to ours to eat our takeaways.















Since then we have both been recovering from our busy week, watched a few dvds, got a curry etc. We do not do sales shopping and stay as far away from the shops as possible!!

CF wise I haven't been great but not bad either. I think all the drinking dries out my chest and makes it difficult to shift the mucus, then obviously all our plans have tired me out. Also I seem to have had alot of tummy/toilet problems, I'm not sure if its the iron tablets or the fact its difficult to keep control of taking enzymes with food over Christmas. I find I am nibbling on things all the time, but not enough to warrant taking a tablet with! It's probably a combination of both.
On top of all this, even though I rang up before Christmas to get some more disks for my I-neb, they still haven't been delivered and now I have one cycle left on my disk and still no sign of any more been delivered. The company assure me some were sent out on the 29th (even though I called up before Christmas!), so royal mail have let me down big time.
I also ordered some more sachets for my nasal rinse before Christmas and they still haven't arrived and it hurts too much to just use salt, so my sinuses are starting to feel congested. I also dropped off my prescription for my tobi before Christmas and it still hasn't arrived at the chemist, not that I'd be able to do it anyway as I can't use my I-neb!
So even though I have been 100% compliant all the way through the festive season, and I've felt like all I've done is plan things around treatment and spent every spare minute doing them, I now can not do all my treatments, infact from tomorrow all I can do is physio and no nebs what so ever. Why are companies incapable of functioning throughout Christmas? I manage, other people manage it! Thanks to them I'm probably going to end up on IV's, I already feel like I am slipping. So thanks royal mail, respironics, chemist direct and the tobi suppliers for nothing...! God it makes me so mad!

Signing off for Christmas

This is going to be my last blog before Christmas, So I wish you all a very Merry Christmas and hope Santa stops by your house!

On Sunday Pete and I took Alfie for a walk in the snow whilst it was still coming down, there were people having a snowball fight in the middle of town and everywhere was just covered, it was so Christmassy! Alfie doesn't mind the snow as long as he has his coat on to keep him warm, he was jumping around in it and sniffing it. Pete and I wrapped up well, I even put a pair of tights on underneath my jeans, so we were nice and warm too.

We went to a Christmas carol service at the church on Sunday afternoon, it wasn't in the actual church but at the centre next door. The church gets extremely cold and in winter they only hold the big services in there. Not many people turned up, probably due to the snow and the pianist wasn't there either! You try singing songs you don't know with no music! She turned up just in time for the Christmas songs (we sang some advent songs first) and it was nice to sing some carols. We also had some mulled wine and cakes etc. Pete and I are planning to go the afternoon service on Christmas Eve, the main service is at 11pm but we will be at my nana's party then.

We finally have our wedding album so I have been lugging that around with me (it's very heavy!). I took it to the caroling service on Sunday to show my Nana, Aunty, Cousin and others, and then I took it with me to the hospital on Monday to show as all the staff as they keep asking me about it.

The news from my hospital visit is good! My fev1 is upto 43% so that's an 12% increase in about 3 weeks, my fvc was also up about 400mls which according to the physio mean my lungs can hold just over an extra cans worth of air, that's pretty impressive! My weight is also up to 54kgs although both the dietitian and I agreed this may all be poo because I am constipated.......!! I do think I have put some on though, well I hope, to get her off my back!

So my plan of action is to come off the skandishakes until my constipation is sorted and then go back on them and only take 2 nutrizym instead of 3 or 4. I have to take 3 movicols a day to get things shifting...! If it happens again she will try me on a different calorie shake.

I told the doctor and physio I am tired of my lung function dropping every time I come off the voriconazole and then going through the motions of going on IVs, them not helping then finally going on voriconazole, so it taking weeks before I feel better. The physio explained they have to try other things first that are less toxic as they have patients in their 40-50's who are now having problems from the toxic medications and she says they plan on treating me for many decades to come (which is nice to know!). I am staying on the voriconazole for 2 more months as long as I can cope with the side effects which I said I am willing to do. We looked the side effects up and apparently messing with blood sugars is one of the side effects, also there is dizziness and vision distortion. I then have to come off the voriconazole for a month and then go back on it for a month and keep that cycle to see if it keeps me stable. I wish they could just give the fungus' a good blast and get rid if them completely but I know they can't as the fungus' have taken over too much.

On Monday night, Pete and I got stuck at the bottom of a hill after trying to go visit my Nana who wasn't even in! To rub it in a golf VW drove up the hill no problems whilst we sat there waiting for my dad to come and rescue us. My dad drove the car and Pete pushed and got it up fine, so when we went back later we just parked at the top of the hill and walked down, it was not much fun walking back up but I lived...!

Eskimo Alfie!

Alfie and I went for a nice walk on Friday in the snow, Alfie got to wear his new waterproof, snuggley puffer jacket. Here he is modelling it before our walk

Here we are on the walk, the coat held up well! Alfie didnt get all wet and miserable, and we walked for about 20-25 minutes. Amazingly I hardly coughed, sometimes I think its gets so cold you daren't breathe in heavily enough to do a cough and once you start you can't stop so best to try not cough in the first place!

On Friday at about 4.30pm I attempted to drive around to the estate agents to drop a few things off, however couldn't get my car out of its spot due to the ice. So I had to walk to the estate agents (this walk DID involve alot of coughing even though it about a 10 minute walk in total), I was not impressed! I then called my brother and got him to take me in his car to find some grit. It took me forever to get a spade out of the shed, I was coughing everywhere and all the stupid boxes for the Christmas decorations fell on me because a certain husband of mine had not packed them in properly! Anyway in the end we got 3 buckets worth from a grit box and my brother kindly put 2 buckets worth on the ground so my car won't get stuck again. I have 1 bucket saved in my flat for future emergencies!

On Saturday night Pete and I went for a meal with the same brother and his girlfriend. I already know his girlfriend, we went to university together and they met at out wedding! Just call Pete and I cupid! It was weird at first because my brother is my little brother (he's 19) and my friend is the same age as me and it is always going to be weird your friend dating your brother... However I have gotten used to the idea now and we had a good time last night so alls good. We saw Avatar, what a fantastic film. You must go see it! Make sure you see it in 3D, it's just amazing!

Now onto the cf stuff.... yawn!

These skandishakes are messing with my system and by system I mean my digestion and toilet habits. I have constipation and are taking 2 movicols a day, theres abit of movement but not much. I have also been taking peppermint oil tablets as I think I had trapped wind, I kept getting spasms at the bottom of my chest and feeling bloated, it seems to have stopped but I am still taking them to make sure it doesn't return.

Now I thought I must be getting constipation because I wasn't taking enough enzymes with the skandishakes, so I started taking 4 instead of 3. But it seems to be getting worse and my mum said that she thought taking too many enzymes can dry out your bowls. So now I think I may have been taking too many. However I am not having anymore skandishakes until clinic tomorrow as I need to discuss this with my dietitian, I do not want to be feeling sick and bloated over Christmas!

I am also still getting the dizzy, light headed spells everyday and I can't find my blood sugar reader thing to see if its low blood sugars or the voriconazole causing it. I think it's the voriconazole as eating when I feel like this does not seem to help. However I have been having a skandishake every morning and its about lunchtime I tend to get this funny feeling, for about 2-3 hours. So it could be a sugary skandishake making my bloods go low a few hours later or my morning dose of voriconazole making me feel funny (which is a listed side effect).

Who knew so many problems could be caused by some high calorie shakes and a tablet?!

Happy Easter!

I've been busy so haven't had time to do my blog for a few days and I couldn't be bothered to do it when I wasn't busy, I'm sure you survived! On Thursday I went for my practice hair and make up for the wedding, I thought it looked nice but my mum said she didn't like the lipstick and my make up looked too natural, I also got told I looked pale. Thanks!! I was impressed with my hair, I'm having a big quiff thing going to the side, I was surprised at how much she could do with such short hair!

I had woken up with a terrible headache that morning and it just wouldn't go, I came home and gave Alfie a bath and his fur a trim and then just went to sleep as this headache was evil. It didn't go all day and I went to bed in the end as it was making me feel sick.

Friday we went over to Pete's parents as it was Pete's sisters 18th birthday so we went for a meal and to his parents for awhile. Pete bought his sisters present about 30 minutes before we had to set off, typical man! We also collected some sample invites that this lady has done us for our wedding invites, they are really good so think we are going to get her to do them. They match our colour scheme and are really detailed with flowers and beads etc.

Saturday I was helping at the barber shop and Pete went to see his Grandma which is about a 3 hour journey each way, she is very poorly (and 90 years old) so he is obviously upset and wanted to see her. He didn't get back until early evening so then we watched Terminators 2 & 3! Films where people travel through time just mess with my head because if you change the past you change the future so they would never need to go back in time to change the past but then it wouldn't get changed so then they would need to. ARGH, crazy!! I guess if you are always meddling with the past you don't know what the future is as it constantly changes, they kind of make it out like it was fate and was always going to happen whatever they did. I suppose once someone were to travel back in time it doesn't matter how they change the future because to them it is their past and not their future. I watch Lost as well and that is all about time travel so I think about it on a regular basis! I'll shut up now!!

On a totally separate note and something you probably don't want to know but it's part of having cf so I feel I should share it..., I've had constipation since about Tuesday. I've starting taking loads more Movicols than usual as yesterday my chest started hurting from the pressure and I've been feeling more and more bloated each day. I was quite excited when I finally went to the toilet this morning (haha!) but Pete didn't share my happiness. He just doesn't understand! :o)

Today we went to Church in the morning which was nice. It's the church where we are getting married so it's nice to show our faces and it is Easter afterall. I always get abit emotional though! I was disappointed they didn't explain Easter to us, they told us the story but not the meaning behind it apart from Jesus died to save us (and I only established this through the hymns and prayers). How exactly? It made me think though that Jesus died young which proves that only the good die young.

We then went to see my dad and then went for a roast at my mums. I'm going out tonight into town, I haven't been out on Easter Sunday for ages but if I remember it's a good night! I'll post some pictures tomorrow but I'll probably be very tired after my busy weekend!!