First Knitting Projects

Last Friday I had outpatients, it went OK. My lung function was fev1 40% fvc 51% and my weight was 56.8kg. The dietitian gave me some long speech about how putting weight on was good and all studies show people with CF who have better weights do better overall, she said the ideal bmi for a female with CF is 22, mine is just over 20, I can't imagine it being 22! I told her I had no plans to loose any weight and wouldn't know how to anyway so she can relax!

I told the Doctor about my aching and bladder problems, he did a few things with my legs and basically has no idea what could be causing these things. My last glucose tolerance test a few months ago was fine so he doesn't think its diabetes. I did a urine sample and I am due my annual bloods so they are doing those next time. Annual bloods is where they take loads of blood and test them for almost everything or so it seems! You need to fast beforehand though so they couldn't be done that day. I had my port flushed and they did take some bloods to test my CRP (measurement of infection) and glucose (sugar levels) to check everything is OK, my port bled back! Yeay! I have also been referred for another bone scan as since my last scan showed some deterioration, they wanted another test done in 6 months.

At the weekend Pete went to Germany for a stag do so I was on my own! I tried to make plans so I wouldn't be alone and bored and so on the Saturday night I went out with one of my friends. We had a really good night but the next day I felt so tired I had to cancel going to the cinema with another friend. I did manage to go to a barbecue at my mums but when I got home and had to rush around to do my physio and get ready for the cinema, I couldn't face it!

I've felt quite crappy all week to be honest, I feel tired and more mucusy than normal. Whenever I go on nights out it always dries up my chest so everything is difficult to shift and makes me tired, people don't believe me and say its just a hangover, but I don't think hangovers last a week! I'm not really sure at the moment if I have something developing or have caught something or if its just repercussions from Saturday or just the weather!! So I'll have to just wait and see.

I missed Pete so much! I'm never letting him go away again haha! He brought me back a fridge magnet and a little yellow soft top mini just like the one we used to have! I miss that car so much!!

On Wednesday we went over to see Freya and I can finally reveal my first knitting projects! I'm glad to see the back of that blanket, things were hectic on Monday as it still wasn't finished and then when I washed it, loads of the stitching needed fixing and I just wanted to chuck the damn thing out of the window! But it looked good in the end and I hope Freya likes it! I also did a cardigan, see pictures below. Freya is lovely and her mum is doing well and looking far too good to say she had a baby a week ago!

Lost Battle

Well I'm afraid the cold won.

I started IV's today, I'm quite fed up if I'm honest. It's only about 4 or 5 weeks since my last set of IV's.

After my last post I developed a terrible productive cough and by the Friday I was coughing up about 2 sputum pots worth of sputum a day, I usually cough up about half a pot in a day. I'm not sure how much one sputum pot holds, maybe 60mls? I literally had to have a pot with me at all times as every time I coughed, sputum came up and it was large and thick. I was also coughing sputum up in the night which I don't usually do and waking up covered in sweat.

So I called the hospital on Thursday and asked if I could start oral ciprofloxacin, I was told by a Doctor I don't know that I needed to come to outpatients on the next day. So I went to outpatients the next day which was a pain as the fridge man was coming anytime before 1pm and my appointment was at 1.10pm, so Pete had to finish work at lunchtime as the guy still hadn't arrived by 12 and I didn't know how long he would take when he arrived. In the end he arrived at 12.15 and was gone by 12.30, but Pete had set off by then. Never mind!

At outpatients I was informed that in future to ask for one of the main CF doctors as they would have just put me straight on IVs or just told me to take cipro without seeing me, how frustrating!! Anyway my lung function was actually up to 44%, my weight was stable and my sats were 'acceptable' so I was sent home on cipro and told to phone back on Monday to update them.

Saturday was a horrible day, I think the cipro made my whole body ache and was coughing so much it was hurting my back and shoulders. I had to cancel the night out for my friends birthday and my friend wanted me to at least go around to see them before they went into town, but I couldn't face having to cough in to a pot in front of my friends and their friends who I don't even know. I hate seeing people cough up sputum and I have CF, so I can imagine how much it freaks other people out and it's just so embarrassing!

On Sunday afternoon I started to feel better, I was coughing less and even though I was still coughing loads of sputum up, it was less then previously. So on Monday I called the hospital and said I was improving, so I was told to give it a few more days on the cipro.

By Thursday I'd had enough, I am still coughing, there is just sputum sat constantly in my throat and in my chest, when I breath I can hear it bubbling and I'm starting to get headaches from the coughing. However now I am also getting breathless easily, for example I cleaned the table last night after tea and couldn't catch my breath to shout Alfie to come in from outside. When I do my physio it's like my chest tightens up and even though I know there is sputum there I can't get it up. So I've started IV's today, tobramycin and ceftazidime, I asked for tobramycin as I think it's better than colomycin, plus it's once day so easier to organise around!

My lung function today was fev1 39% fvc 54%, weight is still stable but my sats are 94% which seems low for me. Nobody seems concerned about it though, I suppose it just backs up the fact I'm feeling breathless.

I have been up to other things, my like doesn't revolve around CF even though you might think so reading this blog at times! When you have CF you soon learn that the world carries on and so must you. Pete and I went for Tapas last night, I watched Come Dine with Me on Saturday and she made Tapas and I just had an urge for it so we went the next day. My knitting project is coming on well and I can now cast on and cast off, wahoo! I've also been doing my voluntary work and meeting my new mentee this week and I'm going for a massage session/training which should be good!

Gemma vs the Common Cold

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

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

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

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

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

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

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

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

Knitting Needles

I finished my IVs on Friday and even though my lung function has not actually increased, in fact it is 1% lower at 41%, I managed to escape! I went on my IV's because I had a cold and it was affecting my chest, not because I'd had a fall in lung function, well I had, not nothing below my normal range. So since my chest is feeling alot better and my weight is up abit at 55kg, the doctor and I think the lung function will increase once I am exercising again and back to feeling myself.
I have yoga this evening so I will see how breathless I get, which will probably be a lot since I haven't been regularly since before Christmas! I can usually tell if its fitness related or CF related though. Not sure how, but I can tell because I am such an expert.... haha!

Pete and I went to see Black Swan on Saturday night, warning, there are some very rude scenes in that film that I was not expecting! Pete thought it was rubbish but I thought it was quite good in a weird way, don't think I'll be buying the DVD though. Go see the Kings Speech if you haven't seen it, it's much better!

My knitting it going well, I got the bring it home with me and I've been doing it whilst watching the TV, I also took it to the hospital with me on Friday to do whilst waiting. The needles were poking out of my bag when walking around and I was worried I may get told off by hospital security, I'm not sure how rules around knitting needles possibly been used a weapon stand, personally I think it's possible since I've already nearly had one incident with Alfie....! Apparently next week we are moving on to pearl stitch, how very exciting, I am onto the next level!

Knitting Lesson no 2

On Sunday we went to Pete's Grandad's birthday get together, we got to meet Pete's new cousins too which was nice.

I didn't sleep well at all on Saturday night which is interesting because on the radio on Tuesday they were saying that having your mobile phone turned on in your bedroom can make you get insomnia. Usually I turn my phone off and leave it in my bag every night, but Pete went out with his friends so I had it turned on, on my bedside table and got about 3 hours sleep. Anyway the result was that I didn't feel cracking on Sunday, my colomycin dosage was upped to 2 mega units x3 a day from 1 mega unit x3 a day on Friday, so I think this made me feel quite groggy Friday, Saturday, Sunday and Monday. On the journey to the party I got terrible travel sickness and I had to get Pete to stop at a service station for me to set up my IV's in the car, there was no way I could have done them whilst he was driving, if I took my eyes off the road I think I would have been sick.

So I arrived feeling and probably looking like crap, attached to my IV's, wanting to lie down! I felt better once I'd had some food and a coffee or two, but I wasn't my usual self.

I don't like doing my IVs in front of Pete's family, I don't mean his close family but his extended family. I don't think they know much about my CF or that I even have CF and I just feel awkward and rude having to change them over and plonking my equipment down without much of an explanation. I hate the thought of people thinking of me as being sick, when I was holding one of the twins I coughed and I was worried they might think I could infect them or something. It's probably all in my mind, but I don't know what or how people think as I've never been on the other side. I guess I just get slightly embarrassed by it all which I think is natural.

Pete with one of the twins

Pete's sister with the other twin

Pete's mum (also the twins aunty) and I with the twins

The twins with their mummy and aunty

I met up with some friends last night which was great as I feel like I haven't seen them for ages! We were talking about disabilities and adoption/surrogacy as one is training to be a psychologist and the other is a social worker. It was really interesting as my friend says that I am very honest about my CF and realistic but yet see the positives in my life and cope well with the problems I face. It's nice to think that's how I am or at least how people think I am. I keep doubting myself as to whether I am going to be able to cope with a baby and wondering if I am silly, but I know in my heart I wouldn't be doing it if I didn't think I could.

I had some training on MS (multiple Sclerosis) today as part of my voluntary role at Scope. It was good to learn about another unseen disability and interesting to see the similarities of the problems associated with the condition and my own. I have another knitting lesson tonight, hopefully I might be allowed to bring it home with me this time and do some on my own, haha!

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.