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!

My Hero

Three years ago today I married the love of my life! I love him with every inch of my body and feel so lucky to have found such a caring, generous, gorgeous man to spend the rest of my life with! Here is a little video I made as to why I love my husband so much..!!

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!

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!

Donating Blood

Pete gave blood last week, I'm very proud of him!

The needle they use is about the size of a venflon so quite big but the nurse got in easily after cleaning his arm for like 40 seconds, they don't even take that long cleaning my port before it's accessed! It didn't take very long for his blood to fill the bag compared to other people, less than 10 minutes I'd say. Then afterwards he got a nice big dressing and some round thing that they tape over the hole whilst applying pressure, I assume it's to try stop bruising. Jeez when ever I've had needles I'm lucky if I get offered a plaster..! Then he got to have a drink and some biscuits. Apparently he can give blood every 4 months, not sure if he is planning to do that or not. I wish I could give blood but it's not possible since I have CF, as well as being on antibiotics all the time.

If you would like to look in to donating blood, click here

Yesterday was Mothers day and since I am feeling quite well at the moment we had my Mum and Nana round to ours for Sunday lunch, there were 7 of us in total. It was cosy around the table but never mind! I had the left overs in a sandwich today, ummm Sunday dinner sandwich!!

The only complaint I have CF wise at the moment is I keep feeling really tired afternoon/evening time and falling asleep. Last night I fell asleep for about 30 minutes in a uncomfortable position on the sofa, not sure how I managed to nod off! I didn't go the gym at all last week as I have naps instead. I don't really understand it as I am finding it difficult to sleep in on a morning past 8-8.30am, surely if I was tired I would sleep in until later? Who knows?!

Alfie has being having some toilet problems, in that he keeps weeing in the kitchen on a night even though there is a puppy pad down for him (which he doesn't use very often) and we spray the areas where he wees with a repellent. Therefore when I wake up during the night I am getting up once or twice and letting him outside, it seems to be doing the trick however I feel like we have a puppy again not a dog that is nearly 5 years old! It seems to be working though so I shall keep doing it for the sake of our curtains!

I have being taking Alfie to dog classes every week as part of his behavioural training, mainly to try help him behave better with other dogs and for the trainer to see how he is progressing. Last week we had to get our dog to sit on some cardboard, then walk over some poles, sit on some bubble wrap, walk on a plank of wood that was like a sea saw, walk over some hoops and sit on some more cardboard, the aim was to try get them used to obeying commands on different textures. Alfie was really good at it compared to the other dogs and he is a nervous dog, so I was very happy with him.

Fantasies

I want to thank everyone that commented on my last blog post, I think I've had writers block for a few months and felt my blog was getting slightly boring, but I guess that's CF in a nutshell and relates to my previous blog, CF is boring and is very repetitive!

The post wasn't a cry for help, it was just thoughts I had that I wanted to put down in writing and sort out in my head. Sometimes once I start to write them, it starts to make sense why it is how it is and I can apply some logic to how I'm feeling. I know my family and friends love me, that's why I hate it when I have these panicked moments where I think nobody gives a damn about me. The world and relationships aren't perfect and sometimes you have to learn to deal with it along with everything else.

Today I'm stuck inside with not much to do as our house has stuff everywhere, I am going to go crazy! Our bedroom ceiling is finally being fixed so we had to empty the room out completely, which means there is a dressing table and drawers in the kitchen and an extra bed and other junk in the spare room. I had to get up at 7 today (after getting up at 6.20 to put IVs on and going back to bed) to try to be ready for when they arrived which I failed at miserably, the electrician arrived at 8.15, I mean who works that early?! Luckily Pete was still here as I was about to get in the bath. The electrician left and so did Pete and then I frantically tried to be ready for when the plasterers arrived in 10-15 minutes. Not easy when everything is dotted around your house! I'm happy to say I was dressed and even had some makeup on by the time they arrived. So now my home is taken over by men and I'm hiding in the living room trying to stop Alfie barking every 5 minutes, I think we shall escape at some point to go for a nice walk!

I am so excited about finishing my IVs on Wednesday, I fantasize about getting my dressing off my arm and my eyes looking normal again. They won't stop weeping and are all red like I've being crying, they are dry and I want to itch them all the time. It's driving me insane! My skin near my armpit has gone all sore so I've had to sort out my dressing for my needle so there are no sticky bits on the sore part, this means I have loads of padding going all the way under my armpit. Again, driving me crazy... want to itch, want to itch, ohhh I can't wait to rub some moisturiser on it! I woke up Friday night and I'd ripped some of my dressing off in my sleep, oh hello top of needle poking out and hello having to try sort own dressing out at 3am with one hand, how fun! SO yes very excited for Wednesday!

The Lonely Disease

When you have CF and you are on your Ivs, or feeling unwell or anytime really, you soon come to the realisation that this doesn't change much. If people are under the illusion that family and friends offer to cook you tea, do your shopping, take you out etc like they would in a film then you are mistaken. People don't rally around to help you or to raise money for a charity, they don't feel inspired to do anything extra because of your illness and the difficulties it causes. Pete is the first person i've known since I can remember to raise money for the CF Trust. In Emmerdale last night the whole village was seeing if they could be a bone marrow donor for Sarah, I doubt this happens very much. My own husband doesn't donate blood, his choice, I can't make him and I'm not going to nag him because that would be me pressuring him to do something I wish I could do myself (I can't donate blood or anything, I've researched it). Most people I know are on the organ donation list, least that's something!

There is a part in the film 'The Beach' where a guy is taking ages to die and the main character says 'You see, in a shark attack, or any other major tragedy, I guess the important thing is to get eaten and die, in which case there's a funeral and somebody makes a speech and everybody says what a good guy you were. Or get better, in which case everyone can forget about it. Get better or die. It's the hanging around in between that really pisses people off'


I think people with long term illnesses are like this, people are supposed to die or get better. But we don't do either, we sit somewhere between, keeping going but never quite one or the other. This confuses healthy people, they don't understand it as they have never experienced it. They judge people with long term illnesses and make assumptions. He/she seems to manage OK, he/she doesn't seem that ill, he/she wants to be treated like a normal person, he/she is stronger than other people. I probably do it myself about others such as elderly people or people with children, I assume they are managing although I would try to never be judgemental about something I don't know about.

I imagine when I was first diagnosed with CF, my family were worried and anxious, eager to help out how they could. As years go on it just becomes the norm, people become complacent, one of my brothers doesn't seem to even acknowledge I have CF and if I mention it he thinks its some kind of excuse I'm using and sighs at me. I feel I have to push all the time to remind people, even my own husband who lives with me and sees how much I have to do, how tired and ill I can be, he sometimes expects me to be able to do everything I need to do, as if I have become immune to feeling exhaustion and pain over the years. Like I can push it aside and be tired when its convenient.

We went to a surrogacy social event on Saturday and stayed over 2 nights, being on my IVs made this day very stressful and non stop for me. I was exhausted on Sunday and still am to some degree, nobody even appreciates how much effort went in to me making that social event, but why should they? To them I was there just like everyone else. Why do I even want them to appreciate the effort it took? It won't make a difference to anything! I guess I feel like my achievements go un-noticed because to others they are nothing, but to me they are everything.

My eyes are so puffy and red and my headaches are clouding my mind and incapacitating me. I've asked to not be put on ceftaz again unless really required, I always say I will take it easy when on my IVs but it never seems to happen even though I don't seem to do much! Why do people always seem to ring you when you are trying to have a sleep? Why do I feel like people are calling me all the time, but the phone call is never to see how I am or if I need anything?


At the end of the day people like me are supposed to be dead, if it was survival of the fittest I'd have been gone long ago, even though I think mentally I am stronger than most. The thing is, I can do it on my own because of my strength. I can't remember the last time someone came to a hospital appointment with me because I don't need anyone to be there, I don't need someone to do my physio or tell me to do it, or do my IVs for me although Pete often offers and do you know what, its great when he does, to not feel alone in this quest for me to feel better. To know I could do it if I needed but the offer to be there to make things a little easier. My Nana pays for a lady to come and clean our house every week, its one of the best gifts anyone has every given me, not just the cleaner itself, but the recognition that I was struggling with the cleaning.

I like that I am independent most of the time, I don't want to rely on others to get me through, it's my CF and my responsibility, this makes it hard for me to ask for help and its mostly my fault as I don't ask. The thought of going in to hospital and someone else taking over my care frightens me as I know whats best for me. I like people see me as managing and getting on with life because that's my aim. I suppose I just wish that I didn't feel so lonely, CF is a hidden disease but also very lonely at times.

Nana

Started IVs yesterday, i'm on Tobramycin and Ceftaz like usual. My lung function is down to 37%, weight is 56.8kg, not sure if that's down/up, not really interested! Got a headache yesterday and woke up with one this morning which paracetamol doesn't seem to be shifting, hoping it will settle down, really can't face having headache for 2 weeks.
I'm taking ondansetron for sickness, certirizine to try prevent me getting sore, puffy eyes and i've also started a 5 day course of aciclovir to treat a coldsore that popped up to say hello on Tuesday morning.

The nurse came from calea this morning to do my tob levels, this is to check the levels of tobramycin in my blood after the first dose, as too much tobramycin can make you loose your hearing.

Found out today that my Nana was admitted to hospital last night, she is currently having chemotherapy as she has terminal lung cancer but her platelet count is very low (it should be 150 and I think my mum said it was 39) so she is having a transfusion. It's bad enough that we know her cancer is terminal and her treatment is to give her longer, but now she might not even be able to have anymore treatment so it's very worrying, my Mum said they will find out next week. So fingers crossed the news isn't bad next week as so far my Nana hasn't had good news and I think she deserves some.

My Nana, Mum and I when we went to London for my Hen Night

Transplant Programme

There was an excellent programme on last night about organ donation. It showed the points of view from the family of the donor, a 65 year old lady and the recipients who received her heart, liver and kidneys. I thought it was put together very well and explained the process great, it also showed how the donor is treated with respect and how important it is to let your family know of your wishes as it is them who have the final say.

It made me feel honoured to know people who have been part of this journey and how many people are involved to try and help save a persons life. It made me realise how difficult it is for the families who agree for their loved ones organs to be donated, but also how proud they felt when they received a letter telling them how many lives had been saved.

Its not an easy watch, but worth it.

Click here to watch

The Bupa Great North Run

Well its finally over! 2 hours and 31 mins, 13.1 miles and Pete completed the Great North Run on Sunday. He has raised over £600 for the CF Trust. We are all so proud of him! It was a long day and a long drive home due to all the traffic, but very enjoyable and I'm glad we went to watch him at the finish. He is already talking about doing it next year! Thank you to everyone that sponsored him, your donations kept him going and made it worthwhile! If you haven't sponsored him yet and would like to now the race is complete there is a link at the top right-hand side of my blog where you can visit his page and leave a donation.

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!

4 Months Lucky

Oh dear, how can things go wrong so quickly?!

Last Thursday I started with a headache that decided it was going to stay until Sunday, so I was taking pain killers religiously to keep it under control. We took our nephew to LegoLand at the Trafford Centre on the Friday and had a great time, here are some pictures:

On Saturday night we went out for a meal with some friends we have made at Surrogacy UK which was really nice, we haven't seen anyone for awhile due to a lack of socials so it was nice to have a catch up. Then on Sunday Pete was as the cricket all day and I just had a relaxing day as I'd had a busy week and just wanted to get some rest!

On Monday morning I woke up and felt like someone had punched my face, my whole face was throbbing, my nose, around my eyes, the top of my head, it was horrible! I called the hospital and told the Doctor I thought it was my sinuses as I'd had a headache for 4 days and now my face was throbbing. He agreed to post me a prescription for Amoxicillin since my chest was OK for the minute but to call if my chest started to become a problem.

By Wednesday (prescription still hadn't arrived, they send them 2nd class!) I was not feeling good at all, chest aching, lack of energy, runny nose, coughing lots, sweating during the night, having problems sleeping, I've had to sleep propped up the last two nights just so that I can breathe properly and I've taken kalms to help me sleep. On Monday night I was hallucinating and hardly got any sleep, it was so scary! I saw a big dog on the bed, a spider dangling from the ceiling onto the bed, at one point I thought Pete was just laid there starring at me, he wasn't at all, he had his back to me! Another time I thought he had all rags in his hair, then I saw the room was full of leaves and at one point the light in the room was flashing. I've never experienced anything like it! I think its the Voriconazole, as I started that on Sunday and it says it is one of the side effects, I've never had it like that before though!

So surprise surprise I am starting IVs on Monday, its the earliest they could fit me in, wish I was starting earlier to be honest, Monday seems ages away! I've had to cancel my mentoring session this week that I volunteer as at Scope and I also had to cancel my meeting to start up the Scope Mentoring blog again. I'm just sat around not doing much, yesterday I had a bath instead of a shower as I felt too tired to shower, I wore my tracksuit bottoms, a sure sign I'm feeling bad! I had to go to Tesco to get some food and it was raining very heavily, no surprises that the disabled spaces were taken by people without stickers, always happens when it rains! Coughed my guts up walking around the shop, at least people get out of my way... was drenched by the time I got home. Bet I looked a right sight, never mind....!!

I've gone 4 months without needing IVs, so I've done well, my average is 3 months. So I can't complain, bring on the IVs!

PS - I have been having problems leaving comments on other peoples blogs, so if you are having the same problem, try unticking the 'save my details' box

Wonderland

On Saturday it was Pete's birthday, he is now the same age as me again. I don't like that few months gap where I am older than him! I'd already bought Pete some clothes for our holiday back in May as part of his birthday present so he wasn't expecting anything from me, however I got him some surprise tickets to go see Jack Whitehall (a comedian) in November so think he was pleased!

On Saturday night we went to someone else's birthday party, it was fancy dress, Alice in Wonderland theme or wear a funny hat. I went as Alice as Tori lent me her outfit which is currently getting disinfected to return back to her. If you remember, Tori got a lung transplant last year in May and I don't want to give her any of my infections, so I am cleaning the outfit with Vanish oxi hygiene which claims to kill 99.9% of bacteria, it's in the washing machine as I speak after having a soak for an hour. Pete was boring and wore a hat or mine, he ended up looking like someone from N-Dubz haha!
Then on Sunday we went to the Lakes for a few days away, we are so lucky that we can go to the Lakes as many times as we like, within reason of course! Alfie can come with us and it doesn't really cost us anything. The Lakes will always hold a place in my heart, its where we got engaged!

The walk we went on, on Monday was too long, I over estimated myself and had strop half way as I was too tired and my lungs were on fire. The walk was on really rocky ground and it was so tiring, poor Alfie struggled at times and had to go in the bag for a rest at one point. Sadly I didn't fit in the bag and Pete had to give me a telling off when I refused to go any further. We turned back once we saw a hill we had to walk up, no way was I going up there, Norman let us down this time, the walk was poor and was not on the level! To finish the day off the pub we really like and was looking forward to going to, doesn't do food on Mondays (!) so we tried this other pub and the food was rubbish!
However Pete and I are not ones to be put off, so we tried another walk on the Tuesday, shorter and alot more friendly! I have learnt my lesson, my body and lungs will only allow me to do walks of 3 miles or lower on level, none rocky ground!
Needless to say I am exhausted now. I think overall I have spent more time sleeping this week than not, I've woken up at about 10am or later every day and slept in the car when travelling whenever possible! Even though walking totally tires me out, I like to go on walks as it reminds me that even though my body is poorly, I can still breathe and walk and although not as good as others, I'm alive and functioning! Feeling tired means I know I have tried my hardest and I've pushed myself, I suppose its a feeling of self satisfaction like someone who does a sponsored run, its my version...! In a way if I don't feel tired I feel like I'm lazy, it's my way of knowing I've done all I can for the day.

Pete has taken the rest of the week off work and today we have bought some plants for the garden and planted them. We bought a strawberry plant, I know it will probably die within a month as I have no idea what to do with it, but it will be fun to try..! I wore a mask when digging in the compost as I've read lots of bacteria are in there including cepacia which is a CFers worse nightmare from what I've heard, patients with this on their lungs aren't even allowed on the CF ward! So call me paranoid but I wore a mask left over from when we decorated.

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!

New and Very Cute Arrival!

Meet our newest member of the family, Freya! Born yesterday morning weighing 8lbs 8 and a half oz. Mummy (Pete's sister) and Freya are doing well and hopefully Aunty Gemma will get to meet her next week, can't wait!

Walking on the Level

Hello!

Sorry again I haven't posted for awhile, I guess it's a good sign because it means I'm busy which means I am feeling good!

We came back from the Lake District yesterday, we went Sunday to Tuesday and had a lovely time. My brother and his girlfriend were supposed to come with us, but her Grandad sadly died on Saturday night so in the end my brother still came after some persuasion! It rained on the Sunday so we just stayed in playing boardgames and cards and drank, and and went out for a meal at he local pub. I was designated driver that evening, the house is in the middle of nowhere up a massive hill which involves driving up a long, windy road and in Pete's car which I'm not used to driving, it was an experience to say the least. Pete does most of the driving when we usually go to the Lakes, so I'm not really used to it! We got home in one piece and I only stalled twice so I can't have be that bad...!

The next day we went for a walk with a stop at a pub halfway and then on Tuesday my brother left early and Pete and I went for a walk around Grizedale Park on one of the easy routes before heading home. If anyone is going to the Lakes and wants to go on walks but is like me and pretty rubbish at walking due to CF or anything else that limits your mobility, you should purchase a book called 'Lakeland Walking on the Level' by Norman Buckley. We have just purchased the second edition as its great for me, there is no way I could do alot of the walks in other books as there are just far too many hills, there only needs to be a small slope and I'm coughing and breathless. These walks try to be as flat as possible, yes there are still slopey parts, it is the Lake District after all but they are perfect for people like me. The walks vary from about 1 mile to 7 miles and often it has short cuts if you are getting tired. It outlines how much rise and fall there is at the start of each walk so you have an idea of how hilly its going to be too.

I'm tired today after our trip so going to take it easy and leave you with these photos!