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!
Monday, 31 October 2011
Friday, 28 October 2011
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.
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.
Thursday, 20 October 2011
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.
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
Monday, 17 October 2011
10 Things Not to Say
Someone posted 10 things not to say to someone with a long term illness on facebook, I thought it was quite good. Here they are:
10. You can't be in that much pain
There is always some problem I have with my body whether it be constipation, getting breathless, needing to cough, having a headache, my body aching etc. If I were to display to people every problem I had, I wouldn't be a very fun person to spend time with would I? I don't learn to 'ignore' my problems or 'get used to them', I learn to live with them because I have no other choice.
9. Stop being lazy and get a job
Trust me, I'd love to have a full time job and the wage that comes with it. Do people think I really enjoy sitting around all day, feeling useless? Getting a degree and not being able to put it to use? Seeing my friends have lots more money than me and talking about how great their jobs are? My illness is my job and trust me its not easy, I never get a day off. Remembering to charge things up, get IVs out, send off prescription requests, get my port flushed, waiting in for deliveries, picking up prescriptions, going to the hospital, planning physio and nebulisers in to my day, remembering all the tablets I need to take, trying to park close to where I need to be, holding in coughs, cleaning and sterilising nebulisers, remembering how many times i've been to the toilet!
Oh and I'm not lazy at all or at least I don't think I am, try doing everything on about the amount of energy you have the day after a long night out or when you have a cold.
8. You just want attention
Yes I have a life threatening illness and have known 20+ people die from this illness before their 30th birthday, just to get attention.... If anything I hide my CF from people and they have no idea how serious my illness is
7. Your illness is caused by stress
I'm not going to even address this, we all know CF is genetic
6. No pain... no gain!
Erm whats my gain? Will my CF improve or go away? Will I get a reward for having CF? If you go to the gym and work out you get fitter/more muscly, if you give birth you get a beautiful baby. Say this sentence to those type of situations please.
5. It's all in your head
Look at my medical records and tell me that, pretty certain my head didn't make me produce loads of mucus and give me lung damage or infections...
4. If you just got out of the house....
I take 2 meanings to this one
A) As in fresh air or speaking to people is going to cure me - I get out plenty thanks, in winter its not nice when I piss myself because I'm coughing so hard due to the cold!
B) As in because I can get out the house, I mustn't be that sick - I always have my illness, I have to learn to function with it. Its not a cold, I can't stay in bed for a few days and then get on with my life. Just because I can take the dog for a walk or drive to the shops, it doesn't mean I'm fit as a fiddle.
3. You're so lucky, you get to stay in bed all day!
Really? Would you really want to do that every single day? I know I wouldn't and p.s. I don't.
2. Just pray harder
If anyone said this to me I think I'd punch them
1. But you look so good!
People with illnesses do not have to look ill to be ill!! Why is there this belief that to be genuinely ill you must look it?!
10. You can't be in that much pain
There is always some problem I have with my body whether it be constipation, getting breathless, needing to cough, having a headache, my body aching etc. If I were to display to people every problem I had, I wouldn't be a very fun person to spend time with would I? I don't learn to 'ignore' my problems or 'get used to them', I learn to live with them because I have no other choice.
9. Stop being lazy and get a job
Trust me, I'd love to have a full time job and the wage that comes with it. Do people think I really enjoy sitting around all day, feeling useless? Getting a degree and not being able to put it to use? Seeing my friends have lots more money than me and talking about how great their jobs are? My illness is my job and trust me its not easy, I never get a day off. Remembering to charge things up, get IVs out, send off prescription requests, get my port flushed, waiting in for deliveries, picking up prescriptions, going to the hospital, planning physio and nebulisers in to my day, remembering all the tablets I need to take, trying to park close to where I need to be, holding in coughs, cleaning and sterilising nebulisers, remembering how many times i've been to the toilet!
Oh and I'm not lazy at all or at least I don't think I am, try doing everything on about the amount of energy you have the day after a long night out or when you have a cold.
8. You just want attention
Yes I have a life threatening illness and have known 20+ people die from this illness before their 30th birthday, just to get attention.... If anything I hide my CF from people and they have no idea how serious my illness is
7. Your illness is caused by stress
I'm not going to even address this, we all know CF is genetic
6. No pain... no gain!
Erm whats my gain? Will my CF improve or go away? Will I get a reward for having CF? If you go to the gym and work out you get fitter/more muscly, if you give birth you get a beautiful baby. Say this sentence to those type of situations please.
5. It's all in your head
Look at my medical records and tell me that, pretty certain my head didn't make me produce loads of mucus and give me lung damage or infections...
4. If you just got out of the house....
I take 2 meanings to this one
A) As in fresh air or speaking to people is going to cure me - I get out plenty thanks, in winter its not nice when I piss myself because I'm coughing so hard due to the cold!
B) As in because I can get out the house, I mustn't be that sick - I always have my illness, I have to learn to function with it. Its not a cold, I can't stay in bed for a few days and then get on with my life. Just because I can take the dog for a walk or drive to the shops, it doesn't mean I'm fit as a fiddle.
3. You're so lucky, you get to stay in bed all day!
Really? Would you really want to do that every single day? I know I wouldn't and p.s. I don't.
2. Just pray harder
If anyone said this to me I think I'd punch them
1. But you look so good!
People with illnesses do not have to look ill to be ill!! Why is there this belief that to be genuinely ill you must look it?!
Wednesday, 12 October 2011
Keeping Cool
I finished the cipro on Monday and I can't say I'm feeling any better, worse if anything as I had forgotten that cipro has nasty side effects like all over body aching!
I'm not extremely ill or anything I just feel like I'm in trance all the time. You know when you drive somewhere but you turn off and wonder how you got there without crashing, that how I feel all the time. I'd doing the motions but my mind isn't contributing as much as normal, its like I'm outside of my body so I can't feel how exhausted I am. I think this can give a false perception of how I feel as I'm still doing everything I need to so from the outside I seem OK, and if I really need to I can switch my brain back in to gear to have a short conversation etc. I think it's some kind of technique I've established to get on with life, if you turn your mind off it uses less energy I suppose! I have less battery power so I reserve it for daily tasks. I don't feel like this all the time so i know it's not normal.
I also keep getting a sharp pain in my right lung that passes after a few seconds. However when its there it's not nice and it's usually when I need to cough and it hurts so much to take a deep breath, which you need to do to cough. It happens more when I lay down, no idea why!
In addition to this I know my chest is struggling as I'm breathless easier and my shoulders and neck ache constantly. I can tell my posture has worsened and this is because when you struggle to breathe your body makes you hunch and lift your shoulders as this makes it easier somehow. I don't even realise I'm doing it, I'm trying to sit up straight but it makes it ache more and if I try to relax my shoulders and move them away from my ears, they go back up as soon as I stop thinking about it. I could do with a really good massage by someone qualified but I don't think I could afford it as I think sports therapists are quite expensive and I don't know if it would help really.
So I called up yesterday to start some IV's, I'm fed up and just want to feel less like a robot and faster than a slug!
I'm starting my IVs next Wednesday, they couldn't fit me in this week, a sign that they are busy! I have to cancel my flu jab as can't have it whilst on my IVs, thankfully the CF ward have started doing them again though so I don't have to try book another through my GPs, it's a total nightmare! The CF ward stopped doing them for a few years to save money, however I think they may have realised lots of patients don't get them if they have to go through their GP and it ended up costing them more due to increasing numbers of inpatients during winter and patients requiring home IVs! That's my theory anyway!
IVs create a problem for me as we are staying in a hotel for 2 nights whilst I will be on the IVs. The hotel is paid for with no refund and we have bought the tickets for the surrogacy UK AGM already, plus I really want to go. The hotel rooms don't have fridges but thankfully have baths and I've requested a room near reception to make things easier for me. I looked at buying a portable mini fridge however the minimum temperature they reach is 18 degrees, how can that be classed as a fridge?! So I've borrowed a cool box off my dad and going to test it out to see how cool it stays over 1-2 days, the drugs need to be kept at 2-9 degrees so failing that I'll have to see if I can keep my IVs in a staff fridge! I'm slightly nervous about everyone at surrogacy UK seeing my needle etc but to be honest I'm sure it will be covered anyway by a cardigan as it's not exactly warm is it?!
I'm not extremely ill or anything I just feel like I'm in trance all the time. You know when you drive somewhere but you turn off and wonder how you got there without crashing, that how I feel all the time. I'd doing the motions but my mind isn't contributing as much as normal, its like I'm outside of my body so I can't feel how exhausted I am. I think this can give a false perception of how I feel as I'm still doing everything I need to so from the outside I seem OK, and if I really need to I can switch my brain back in to gear to have a short conversation etc. I think it's some kind of technique I've established to get on with life, if you turn your mind off it uses less energy I suppose! I have less battery power so I reserve it for daily tasks. I don't feel like this all the time so i know it's not normal.
I also keep getting a sharp pain in my right lung that passes after a few seconds. However when its there it's not nice and it's usually when I need to cough and it hurts so much to take a deep breath, which you need to do to cough. It happens more when I lay down, no idea why!
In addition to this I know my chest is struggling as I'm breathless easier and my shoulders and neck ache constantly. I can tell my posture has worsened and this is because when you struggle to breathe your body makes you hunch and lift your shoulders as this makes it easier somehow. I don't even realise I'm doing it, I'm trying to sit up straight but it makes it ache more and if I try to relax my shoulders and move them away from my ears, they go back up as soon as I stop thinking about it. I could do with a really good massage by someone qualified but I don't think I could afford it as I think sports therapists are quite expensive and I don't know if it would help really.
So I called up yesterday to start some IV's, I'm fed up and just want to feel less like a robot and faster than a slug!
I'm starting my IVs next Wednesday, they couldn't fit me in this week, a sign that they are busy! I have to cancel my flu jab as can't have it whilst on my IVs, thankfully the CF ward have started doing them again though so I don't have to try book another through my GPs, it's a total nightmare! The CF ward stopped doing them for a few years to save money, however I think they may have realised lots of patients don't get them if they have to go through their GP and it ended up costing them more due to increasing numbers of inpatients during winter and patients requiring home IVs! That's my theory anyway!
IVs create a problem for me as we are staying in a hotel for 2 nights whilst I will be on the IVs. The hotel is paid for with no refund and we have bought the tickets for the surrogacy UK AGM already, plus I really want to go. The hotel rooms don't have fridges but thankfully have baths and I've requested a room near reception to make things easier for me. I looked at buying a portable mini fridge however the minimum temperature they reach is 18 degrees, how can that be classed as a fridge?! So I've borrowed a cool box off my dad and going to test it out to see how cool it stays over 1-2 days, the drugs need to be kept at 2-9 degrees so failing that I'll have to see if I can keep my IVs in a staff fridge! I'm slightly nervous about everyone at surrogacy UK seeing my needle etc but to be honest I'm sure it will be covered anyway by a cardigan as it's not exactly warm is it?!
Wednesday, 5 October 2011
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
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
Wednesday, 28 September 2011
All Clear
Well I relieved to say my constipation problem has finally seemed to sort itself out. The day before Pete did the Great North Run I felt terribly blocked and bloated so after emailing a CF friend for advice I took 6 movicol together and 2 senna. Then the next morning I took another senna. I was slightly worried I could have a problem since we would be outside all day with only port-a-loos! But nothing seemed to happen. Then that night I took 2 senna and 4 movicols. This seemed to get things going and then I have gradually reduced the number of movicols, I'm now down to 1 movicol and 2 senna each night. I'm going to try have the senna alternate nights but we'll see how it goes. The Doctor says this is fine and to do whatever I want really as long as things are moving along.
So my suggestion is to take up to 8 movicols in one go if you are blocked up ( take at night), slowly increasing the dose doesn't seem to help. Just give it a blast and then slowly reduce the sachets.
Last week I did a presentation at Scope, I did it about 2 years ago and was asked to do it again for new mentors. I just used the same slide show but updated a few things, mainly the bits about people I know with CF as some have sadly passed away and others have had transplants. I managed to print the handouts in the office from the usb stick but then the usb stick would not work in the projector laptop, so we tried it in 2 other laptops including the one in the office I had just used and it wouldn't work in any! Nightmare! So I had to do the presentation from the handout which was disappointing since some of the pictures were not very clear on it. It always amazes me how little people know about CF, one guy said he didn't realise it was so serious, nearly everyone had no idea how much treatment is involved. So I'm glad that I can help try educate people.
Pete and I took Alfie for some behavioural training on Sunday which was interesting. Alfie can be funny with strangers, children and other dogs and we were thinking of having him neutered to try help with the problem. The vet told us we would need to incorporate it with some behavioural training so I contacted the place were we took him for his dog training classes and they referred to the behavioural specialist. She says not to get him neutered until she has assessed him as it could make him worse. We had an hour with her on Sunday and then we get 3 follow up sessions, which will involve her bringing in a dog to teach Alfie how to behave with them, also we will use a doll that makes baby noises to get him used to children and teach him how to behave around strangers. The good news is that he is not classed as aggressive, he doesn't just go around attacking people, I think she used the term 'highly reactive' haha. People who have met Alfie will laugh reading this because he can be a little bugger and has a reputation, but I've always argued he isn't aggressive, once he knows people he is fine and so loving and gentle with them and eager to please. Anyway we have some tasks we need to do before our next session, so fingers crossed it helps Alfie become a less stressed out doggie!
I had an Outpatients appointment yesterday and have started some oral ciprofloxacin as I think I have picked up a virus. I'm waking with a headache every day, sweating loads in the night, feeling tired, getting breathless more easy and my sputum is thicker. You can tell winter is coming, I hate winter because I catch every damn cold going and need IVs! Fingers crossed that isn't the case this time.
My lung function is slightly down to 41% from 43% which apparently is stable (it annoys me when they say that, a small decrease in % means more for me as it never moves too dramatically), I weigh 57kg (yikes, fattie!) and all my annual blood results came back OK. From what I recall they test all vitamin levels, iron levels, if I'm anemic, my crp which is your infection level (mine is 17, it should be below 10 but mine never gets below 10 apparently), my aspergillus levels (fungus) both of which are higher than they like but mine never get to those levels (why am I not surprised), my thyroid hormone level, calcium level (slightly low) and blood sugars. That's all I can remember! I have been given permission to come off Voriconazole for good now until my symptoms start to reappear so that's good news as the side effects were getting worse with each course of treatment!
By the way, we still have a hole in our bedroom ceiling and so still sleeping in the spare room. The insurance company are taking forever!!
So my suggestion is to take up to 8 movicols in one go if you are blocked up ( take at night), slowly increasing the dose doesn't seem to help. Just give it a blast and then slowly reduce the sachets.
Last week I did a presentation at Scope, I did it about 2 years ago and was asked to do it again for new mentors. I just used the same slide show but updated a few things, mainly the bits about people I know with CF as some have sadly passed away and others have had transplants. I managed to print the handouts in the office from the usb stick but then the usb stick would not work in the projector laptop, so we tried it in 2 other laptops including the one in the office I had just used and it wouldn't work in any! Nightmare! So I had to do the presentation from the handout which was disappointing since some of the pictures were not very clear on it. It always amazes me how little people know about CF, one guy said he didn't realise it was so serious, nearly everyone had no idea how much treatment is involved. So I'm glad that I can help try educate people.
Pete and I took Alfie for some behavioural training on Sunday which was interesting. Alfie can be funny with strangers, children and other dogs and we were thinking of having him neutered to try help with the problem. The vet told us we would need to incorporate it with some behavioural training so I contacted the place were we took him for his dog training classes and they referred to the behavioural specialist. She says not to get him neutered until she has assessed him as it could make him worse. We had an hour with her on Sunday and then we get 3 follow up sessions, which will involve her bringing in a dog to teach Alfie how to behave with them, also we will use a doll that makes baby noises to get him used to children and teach him how to behave around strangers. The good news is that he is not classed as aggressive, he doesn't just go around attacking people, I think she used the term 'highly reactive' haha. People who have met Alfie will laugh reading this because he can be a little bugger and has a reputation, but I've always argued he isn't aggressive, once he knows people he is fine and so loving and gentle with them and eager to please. Anyway we have some tasks we need to do before our next session, so fingers crossed it helps Alfie become a less stressed out doggie!
I had an Outpatients appointment yesterday and have started some oral ciprofloxacin as I think I have picked up a virus. I'm waking with a headache every day, sweating loads in the night, feeling tired, getting breathless more easy and my sputum is thicker. You can tell winter is coming, I hate winter because I catch every damn cold going and need IVs! Fingers crossed that isn't the case this time.
My lung function is slightly down to 41% from 43% which apparently is stable (it annoys me when they say that, a small decrease in % means more for me as it never moves too dramatically), I weigh 57kg (yikes, fattie!) and all my annual blood results came back OK. From what I recall they test all vitamin levels, iron levels, if I'm anemic, my crp which is your infection level (mine is 17, it should be below 10 but mine never gets below 10 apparently), my aspergillus levels (fungus) both of which are higher than they like but mine never get to those levels (why am I not surprised), my thyroid hormone level, calcium level (slightly low) and blood sugars. That's all I can remember! I have been given permission to come off Voriconazole for good now until my symptoms start to reappear so that's good news as the side effects were getting worse with each course of treatment!
By the way, we still have a hole in our bedroom ceiling and so still sleeping in the spare room. The insurance company are taking forever!!
Friday, 23 September 2011
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.
Monday, 12 September 2011
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
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!
Thursday, 1 September 2011
Forward Planning
The last few days I have being wheezy at times throughout the day, there doesn't seem to be any kind of pattern. Then this morning as soon as I woke up I started having a coughing fit and coughed up a big, hard black piece of what I can only assume is fungus. I really hope the fungus' on my chest aren't starting to play up again, I have taken voriconazole for 2 years now and have increased the gaps between treatment. Last time I managed 12 weeks and was hoping that I could now come off it completely. The side effects of the voriconazole seem to be worsening for me, when I'm on it I get headaches all the time, light hurts my eyes and I seem to need to wear sunglasses all the time when outside and some of my hair seems to fall out, therefore my hair is thinner. I can carry off the sunglasses because I'm so cool, but I don't like the thin hair and I especially don't like headaches, sitting with my head under a blanket to make it dark is not my idea of a fun day.
I seem to busy lately but I couldn't tell you what doing. I am doing lots of reading as I'm obsessed with the Song of Ice and Fire books, I'm on book 3 now and if I don't get my fix of Starks, Lannisters and Tygarians every day I am very upset! I am also trying to walk Alfie everyday although this doesn't seem to be happening! Yesterday my car had to go in for a service, as you can see its boring stuff so I won't bore you anymore!
On Saturday I had to pass on a night out, as this weekend coming up is a busy one and I didn't want to be feeling ill. I find every time I go on a night out in to town it takes me forever to recover and often I end up on IVs because I catch a virus! It tires me out so much, the talking loud, the walking around, dancing, the alcohol, going to bed late. I do enjoy going on nights out but I decided to be sensible since I have lots on this weekend and I also went to a house party last Sunday. There was no way I could go out Saturday night and then go to a house party on the Sunday! So instead I met my friends before they went in to town, then when they got their taxi at 10pm I went home like the boring person that I am! They kept asking me though, 'why aren't you coming' 'just don't drink', I don't think they understand that I have to keep a balance to try stay well, people just don't understand what it's like. I always say the worse thing about CF is the lack of energy and tiredness, I just simply can not do everything that other people can do. My energy levels are lower and tasks use more of my energy, then on top of this I have treatments to do everyday that use lots of energy. Imagine breathing through one nostril all the time, how much more work walking up those stairs would be or even just coughing which I do more of than the average person! I'm glad I was sensible though as now I can enjoy this weekend coming up.
I seem to busy lately but I couldn't tell you what doing. I am doing lots of reading as I'm obsessed with the Song of Ice and Fire books, I'm on book 3 now and if I don't get my fix of Starks, Lannisters and Tygarians every day I am very upset! I am also trying to walk Alfie everyday although this doesn't seem to be happening! Yesterday my car had to go in for a service, as you can see its boring stuff so I won't bore you anymore!
On Saturday I had to pass on a night out, as this weekend coming up is a busy one and I didn't want to be feeling ill. I find every time I go on a night out in to town it takes me forever to recover and often I end up on IVs because I catch a virus! It tires me out so much, the talking loud, the walking around, dancing, the alcohol, going to bed late. I do enjoy going on nights out but I decided to be sensible since I have lots on this weekend and I also went to a house party last Sunday. There was no way I could go out Saturday night and then go to a house party on the Sunday! So instead I met my friends before they went in to town, then when they got their taxi at 10pm I went home like the boring person that I am! They kept asking me though, 'why aren't you coming' 'just don't drink', I don't think they understand that I have to keep a balance to try stay well, people just don't understand what it's like. I always say the worse thing about CF is the lack of energy and tiredness, I just simply can not do everything that other people can do. My energy levels are lower and tasks use more of my energy, then on top of this I have treatments to do everyday that use lots of energy. Imagine breathing through one nostril all the time, how much more work walking up those stairs would be or even just coughing which I do more of than the average person! I'm glad I was sensible though as now I can enjoy this weekend coming up.
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