Naughty Blogger!

Oh dear naughty blogger! *smacks hand*

In my defence I've had a rough start to the year with our first IVF cycle with our surrogate ending with a chemical pregnancy (see surrogacy blog for more details). So my head has been all over the place, one minute I thought I was going to be a mummy and the next minute I wasn't. Anyway we are going to be trying again very soon and I hope to have better news on that front next time!

So it has been my birthday and I'm very quickly heading towards the 30 marker! At least I'm an even number now, I'm slightly strange I know...!

Pete and I went for a short trip to the lakes after our bad news regarding the pregnancy, to spend some quality time together, alone and away from everything. I know i really needed it, I'm not sure about Pete. Amongst other things, one thing I hate about not working is the loneliness and troubles it brings. Sat in the same building day after day with only a dog and your thoughts for company. It's dangerous and I really, really want it to start getting warmer so I have the ability and will to get out of the house more often! It's simply too cold to venture out very often, its not worth it with the coughing and breathlessness it brings.

Last Monday I went to see Girls Aloud, yep, fourth time! I think I may possibly have seen them every time they have done a tour. I also booked tickets with my friends last night to go see The Big Reunion tour in May. If you haven't heard about this, it is bands from the 90's reuniting like 5ive, 911 and Atomic Kitten and putting on a massive cheesy concert, it's going to be great!

In CF news I have been told I need insulin treatment and then been told actually I might not do. It's all slightly confusing and annoying and has been dragging on since October! My gluclose tolerance test last October came back saying I have mild diabetes, so I monitored my blood sugars for a week and the dietician decided she wanted me to wear a constant monitor for five days. A small catheter is put in your stomach by using some kind of stapler device (really small needle) and then a small probe is attached which constantly monitors your sugars. You still have to prick your finger four times a day to check the monitor was working properly. You can still shower and even go swimming with this device attached to you so it's not too bad to have attached. I then removed it on my own and posted the probe back to the hospital. Here it is

 I then caught a cold and as usual started to get chest pains, was sleeping lots and had very little energy, after taking oral Ciprofloxacin for a week I went to the hospital for a check up. My lung function was slightly down to 40% so nothing major and the consultant decided to have a good look at my medical history and test results whilst I was there. He decided I could need insulin looking at my results and he wants to try me on a new nebulised antibiotic called Azli (nebulised Aztreonam) rather than having Tobi (nebulised or inhaled Tobramycin). He said I needed to be admitted to start the insulin and he wanted me to have IVs on the ward rather than home IVs to get some rest as I looked stressed (I was). So I was put in the waiting list and said to wait for them to call me. 

After a week of waiting I felt much better and decided I didn't actually need IVs afterall, looks like two weeks of Ciprofloxacin had done the trick for once, seriously, its a miracle! So I called to let them know and turns out my name wasn't even on the board, someone had forgotten to put me on! 

The dietician said I still needed to come in to start insulin as I needed to be monitored. Fast forward two more weeks and several phone calls later and I still didn't have a bed due to lots of emergency admittances and I was getting rather annoyed as I wanted to start the damn insulin and also the nebulised Azli.

The main CF dietician who was now back from her holidays decided she wants to retest me as the probe didn't collaborate very well with my own monitoring. She was very apologetic and explained it seems there has been a lack of communication and misunderstanding with what was happening with me. So yesterday I went for the monitor fitting again and to try the new Azli nebuliser.

She explained everything to me and I will try to explain in how I understood it however I do find the whole blood sugars thing very confusing..... I do get high sugars (over 10) but not really high and not in any clear pattern, I also get low sugars (under 4) so she is worried if I had insulin I would get even lower sugars which is dangerous. If I do need treatment they need to work out what type of insulin I'd need, I didn't even know you could get different types! My HbA1c (a measurement taken from your blood) is 48 which is above normal but a good number for someone with diabetes (apparently the aim is between 48-58). So once they get the results from this monitor they are going to decide what to do with me. 

Diabetes is something that many people with CF develop and is called CF related diabetes (surprisingly!). From what I've read it's a combination of type 1 and type 2 diabetes. Mucus in the pancreas damages the cells that produce insulin over time and the body becomes insulin resistant due to chronic infection.

So I go back in two weeks to get my results and pick up the Azli they have ordered for me as I tolerated it fine (I can't get if from the GP as it's too expensive).

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.

The Great North Run

My laptop is driving me crazy, hence why I am blogging less these days. It is so slow that I am going on it less and less as every time I come on it, I think I get high blood pressure and there is a risk I may throw it across the room! To be honest I think it's on it's last legs, I've had it since my second year of uni so that's about 6 years and I assume one day it is just going to die on me. However I can't afford a new one and I have no idea how to try and speed it up, plus I dread having to transfer all my files across to a new computer.

In addition to this I'm not sure if this blog is really serving a purpose anymore. I get bored of talking about myself and my CF since it's pretty much the same stuff over and over again, I don't know if anyone is interested in what I have been doing in my day to day activities. Maybe blogs are so last year or I need to change the angle of it, maybe I've outgrown it. I'm not sure. Anyway, that's why I am blogging less and probably will continue to do so but I'm not giving up on this baby yet, there is alot of my life from the past few years on here and it's grown to be full of information and it's interesting to look back and see how I've changed. My life is abit dull at the moment, I feel like it's not really going anywhere, but hopefully that will change over the coming months!

So I'm still on my IV's, I will hopefully finish them on Monday. I am feeling better but still not to my normal self so that's why I say 'hopefully'. I'd rather do an extra week than end up back on them in a month! The nurse came to see me on Tuesday and my sats are back to 97% so that's a relief. One problem I've been having more than usual is my eyes, they are so sore which always happens when I'm on ceftaz. They weep and all the skin on my eyelids and around my eyes gets dry and goes red, but this time my actual eye balls have felt like they were on fire at some points. I bought some eye drops for tired eyes from boots yesterday and they seem to help, it really annoys me though as my eyes look tired and sore and it makes me look poorly which I don't like, plus I can't wear any eyeshadow or eyeliner!! Other than that the side effects have been minimal, I think taking the anti sickness tablets really helps, it just gets rid of that blugh feeling.

I had abit of a crazy day on Sunday, we had lots of things to do with family and friends which meant some careful planning to fit my IVs in! I have my ceftaz 3 times a day and it takes 45 minutes to go through, the doses have to be a minimum of 6 hours apart from when the drug finishes. Usually I do them at about 7am so they have finished for 8am, then 2pm so they finish at 3pm and then about 9pm of whenever my tobramycin has gone through as I put that on at 8pm.

However on Sunday I had to get up at 5am so they finished for 6am so then I could put my second dose on at 12 whilst we were in the car on the way to Stockport. Then I had to take my evening tob and ceftaz with me in a cooler bag (they have to be kept refrigerated) as I knew we wouldn't be setting off to come home until late and we would be in a restaurant so I couldn't start them till we were in the car on the way home. In the end we didn't leave until 9.30pm and I had forgotten to get the drugs out of the cooler bag (they have to be taken out of the fridge at least 30 minutes before you use them to warm up abit) so sat with them in between my legs for 15 minutes to warm them up, so didn't get them on until 9.45pm and those two drugs take about 2 hours in total to go through. Then on top of this I had to do my physio when we got home at about half past ten. I can see why I get annoyed when people have silly excuses for not doing things that they have arranged, some people have no idea what length others have to go to, to do 'normal' activities.

This week I haven't done much, in fact I have felt quite lonely and down. I haven't seen my best friends for ages as they are always busy and then the time I did arrange to go out with them I wasn't well enough to go out. One of them is hopefully coming around tonight to watch a DVD, I don't think I have seen her since New Years Eve, how sad is that?! I shall be telling her she is neglecting me so it doesn't happen again!

On a totally separate note, my wonderful husband is going to do the Great North Run in September. It's a half marathon which is 13 miles and he is unsurprisingly doing it for the CF Trust! He has been getting up at 6.30am and going to the gym before going to work, so I hope you can all reward him by sponsoring him, even if it's just a few pounds. I'm going to attempt to put a link at the side of my blog because I know September is quite awhile away so you all have plenty of time to sponsor when you can afford to and the link will be there winking at you to remind you!! Here's a picture of my husband to remind you how fab he is and why you should sponsor him!!

http://www.justgiving.com/Pete-Gleave

Moving in Different Directions

I've been feeling abit fed up this week, I don't know if it's because of the weather, because I haven't had much to do, hormones etc, but I do know I have been feeling fed up! I just seem to be sat around alot, thinking of things to do or waiting for Pete to come home. This isn't a plea for people I know to ask me to do stuff for them or go places with them....

I guess I have been feeling abit stressed about all these cuts the government are making and if I was going to lose any of my benefits. I had it in my head we were going to be either skint or I was going to have to work loads and it would ruin my life as I'd get really ill. Anyway from what I can gather it's only people in the work related group who will be affected, they will lose the benefit after a year because they are supposed to be finding a job, apparently their disability doesn't prevent them working, it just prevents them finding a suitable job. What a load of sh!te, I know people with CF in that group. They can find a job, it's the fact their body is ill that stops them working and CF doesn't get better after a year does it?! But it's OK because the guy on This Morning says 'if you are sat watching TV now and have a genuine disability you have nothing to worry about', yeah right. So yes I have been stressing about that and still am because god knows what the government are going to do next, but we must remember 'we are in this together' (sick of hearing that).

The surrogacy stuff is making me fed up too, because now we are members I am worried that no surrogates are going to like us and we are never going to be matched with someone. I'm scared me having CF will put them off, I'm scared there seems to be so many other couples on there and there just isn't enough surrogates and I'm scared it is going to take years or never happen atall.

Then I'm also fed up because my friends seem to be doing things I can't do with them because of either lack of money or because of my health. For example they are all going to a bonfire night but I declined to go because it's cold and there will be alot of walking involved, plus I think the fire smoke will make me cough (along with the cold). I could attempt to go but I know I won't enjoy it because of the all the mentioned things, fireworks don't even interest me to to be honest, so it would be a waste of an effort. However I don't like feeling left out!

Then also my two best friends are going on a weekend away (with some other girls) to London in December which I didn't even get invited to because they knew I wouldn't be able to go! I can't afford it (yes I know I own a nice house and they don't) and even if I could I really can't see me walking around London on a night out in December. When Pete and I went it exhausted me and that's when I was relatively warm, not wearing heels (don't even suggest going out in flats!), and Pete lets me walk at my own pace, my friends do not!

Now you may think my reasons regarding walking, coughing etc are petty and I should just put up with it to have some fun, but it's easier said than done. When you cough so hard that you wee (sorry...this blog is truthful!), or everyone is looking at you, or you feel like you are going to be sick and wishing everyone wasn't looking at you in case you are, it is a big thing.

Sometimes I feel like my life is moving a different direction to my friends, I'm married, a home owner, hopefully will have a child in the next few years and have an illness. Whereas they have growing careers so more money, no homes to pay for, no husbands and loads of energy. I'm scared of us drifting apart, and if I don't have my friends then I will be extremely lonely.

Anyway it's not all doom and gloom, don't get me wrong, I love having my own home and being married. I just don't like feeling left out! I'm sure it happens to people all the time, with or without CF, but I do have normal problems too. CF just seems to make them worse! I am hopefully going out tomorrow night into town, so I can still do things with my friends, just not the really exciting stuff! Also there is our Halloween party next Saturday which I am very excited about!

Fitness

This week I have been trying to get out and about again, mainly to get my fitness back up. Its amazing how quickly your fitness can decrease and then its difficult to tell if your chest is actually better or not!
I've been trying to take Alfie out everyday for a 20-30 minute walk and I also went to the gym on Wednesday which I did not enjoy atall. It was boiling in there and I went on the reclining bike for 10 minutes, then did 30 sit ups, then went on the bike for another 6 minutes and I thought I was going to pass out! I might try and go again today, but it gets so warm in that gym which makes the task so much more difficult. I'm looking forward to be able to start Yoga again, I haven't being for about a month now as the nurse said I probably shouldn't do it when I have a needle in my port, and I miss going!

I'm now not going to the hospital on Wednesday to finish my IV's, they can't see me on Monday, well they can but the main CF doctors can't see me and they think I should see one of them, I'm busy on Tuesday so Wednesday it is. I'm going to go have my needle taken out on Saturday so that's OK! They have also had a cancellation for a flight test so I am going in on Monday, yeay!

My friend is coming around tonight for tea, I feel like I haven't seen my friends for ages. There was a party last week that I didn't go to, so now I feel left out! I know it's only been a few weeks and my friends aren't that shallow, but I do tend to feel like I have been forgotten about and they are all having fun without me, which totally isn't true. They have probably all being busy at work and I wouldn't have seen them anyway! Nevertheless I am glad to be getting my social life back again even if it is just a friend coming around for tea!

7th Feb 2010 - Taking A Break

Sunday 7th February 2010

I've decided to stop doing my blog for awhile as I don't want to give a false perception of what my life is at the moment.

I feel very empty and hopeless, I feel like nobody knows what it is like to be me. I am sick of my body and it letting me down, I feel like giving in. It's never going to end, I'm never going to get better, I can't work, I can't have a baby, what the f*ck can I do?! How can I live a normal life and live my life to the full if I can't fu*king do anything that a normal person can do? I look normal, I feel normal, so why can't I be normal?! What the hell did I do to deserve to be given a sh*t body but want normal things? OK give me this sh*t CF body but then also make me not want kids or have an intelligent mind that wants to be used. Why give me things I can't use?!

I spoke to my mum about the baby situation yesterday, I didn't really have a choice since I started crying after been in a fowl mood all day. She didn't have any answers, when did I get to age where my mum can't tell me what to do?

I'm totally messed up, I had some kind of breakdown last night. I couldn't stop crying, I didn't want to go our for my birthday. I didn't want to be pretend to be happy and talk about sh*t I don't care about. It didn't help they started talking about having babies, someone else I know is pregnant. I managed to get ready after crying for about an hour, and went but I felt ill, I got stomach ache and felt sick, once we had finished the meal no one came back to mine as they could tell I didn't feel well. I got home and slept, not without having to do my stupid IVs.

If I don't have a family, this is how I'm going to feel for the rest of my life. I'm scared I will become depressed. I try to stay happy and positive but its proving to be really difficult, its hard to get out of bed and get through the day

Love the forgotten girl

Do you ever feel like no-one has a real care about you? They say they do but do noting to show it. They all go about their busy lives and don't fit you into it any longer, it's like I have to make the effort all the time. I'm sorry, I'm tired and I don't have the energy so what happens, I just end up forgotten about. The person who is the glue becomes the invisible one. Maybe I should go do my IV's in hospital and then people might make the effort to come and see me or make contact with me. Just a thought.
It's a good job I have Pete, because if you don't ever see anyone, do you even exist? Although Alfie can see me so I guess I'm here....

Love from the forgotten girl :o) xx

feeling abit down

Ive been feeling abit down these past few days, I dont think the weather has helped as it has just rained and rained some more, and so I haven't done anything. So i've been moping around and thinking far too much, I realised on friday I hadn't really seen or spoken to anyone all week apart from Pete. I don't want to start isolating myself, it's so difficult to organise to do things when a) i'm tired all the time b) I have no money because I dont work anymore, so I end up staying in talking to the dogs, going crazy.

I have also been thinking bout having children, I always assumed I would be able to. But I was reading that cf booklet the hospital gave me and it says they recommend your lung function is above 60%, well mine is 41%..... So now im thinking I wont be able to have children and if I do my health will get even worse and I will die. I know thats very dramatic but thats what happens eventually if your health keeps going downhill! Surprisingly I dont really want to die, i've always accepted I will die before the average person but even when you accept that, it doesn't mean you dont mind dying in your 20's or 30's. People don't like talking to me about me dying, they say im different etc. erm no i'm not, i'm not invincible. So now I dont even know if i'm going to be able to have a baby, I mean i'm not planning to get get pregnant tomorrow but it was always something I planned to do. The idea of not has really upset me because it's like the most important thing a woman can do in my eyes, so I would feel like a failure. And its so annoying when there are people just popping kids out all the time that they don't really want, they don't realise how lucky they are that they can just do that!

Alongside all these 'great' thoughts i've been having, my chest has been feeling rubbish. I keep getting pains in my chest and my chest feels like its too big for my body so I cant breathe properly. Im getting out of breath easily and coughing all the time, i'm also coughing up little really hard, kind of rubbery bits of sputum (nice ey?). Also my body is achy but i'm not sure if this is from falling down the hole the other day, i've got a lovely black bruise on my leg from that by the way, its about the size of my hand!

I went to see The Duchess last night at the cinema, which is a great film by the way and I was coughing in the queue for the tickets, the queue for the popcorn (yum!) and eventually went to the toilet and coughed loads of stuff up in there, luckily the toilets were empty. I eventually stopped coughing, its so embarrassing, people were looking at me and im sure a woman moved away from me. If I hadn't have stopped coughing I dont think I would have been able to stay, I cant stand it! Ive got one of those cea cards now, so I paid for my cinema ticket and Pete got his for free as my carer, so that was good!

On a positive note, I saw a dress I liked for my bridesmaids on the internet. So grabbed my friend and we went for her to try it on, it was lovely. So I have bought it and going to order the others. I know its abit early but I really liked it and they won't sell it forever, I dont like many bridesmaid dresses so to find one I like is a miracle and I had to get it! It was nice to get out of the flat and see my friend too!