Wednesday, December 29, 2010
All of the presents that I was lucky enough to receive this year:
Waiting (not so patiently) to open my presents christmas day morning (I think I am rocking the reindeer antlers!):
My stocking presents:
One of my favouritest stocking presents is right in the bottom hand corner, you can't really tell in this picture but its a penguin shaped cookie cutter!!! I can't wait to make some penguin shaped biscuits :o) My second favourite is right at the top of the picture on the left- a wooden nose. The picture below will show you what it is the nose is used for:
That's right- its (well what I think anyway) a very funky glasses holder. It now sits on my bedside table so that when I go to sleep in an evening my glasses can rest safely on my nose. Instead of just on their table where I very frightening regularity normally send them flying onto the carpet when I try to find them to put them on in a morning. You think I would be better at finding my glasses after wearing them for 16years, but nope!! Glasses haven't gone on the floor once since getting the nose, which hasn't even been a week yet but still better than before!!
I had a good christmas, I spent the weekend at my parents house and spent the time with my family. It was a good day and everyone enjoyed themselves and were pleased with what Santa brought them. Being able to spend christmas with young ones makes it even more magical!
Sunday, December 19, 2010
I spent about a week snowed in and not really able to go far as couldnt get my car safely on or off the drive.
I'm trying to remember what else I have been upto!!!
With the scouts we did some christmas crafts and one of these was decorating the stockings. I then kept hold of the stockings ("so they could dry") and returned them to the kids at their christmas party full of some little presents. They all got a pencil, two chocolates (A santa and a snowman about the size of a small choc coin) and a small bag of haribo. Which nicely filled up the stocking. I thought it would be a good idea to wrap them all!! Well there were 25 stockings to do. That wrapping took me over 4hours to do in total. For future reference tiny little chocolates are very awkward to wrap up!!!!
On the 12th December I went to a carol service with the scouts. 3 out of our group turned upto the service which was abit of a poor showing but I enjoyed the service. Some good carols were sung that all of the kids knew and weren't too random (I've noticed that sometimes services aimed primarily at kids have some real random carols/hymns in that they are never going to know so dont sing).
It's also been a very busy time with scout post. I ended up in charge of a very large area and between me and my very helpful dad it took us 8hours over this weekend and last weekend to deliver about 1600 christmas cards that weren't sent through the scout post scheme!! This helps raise money for the groups which is a good thing but it was cold and boring and it makes you sick of the sight of christmas cards (if mine hadnt been written before I started delivering scout post nobody would of been getting one!).
On thursday I finally made it to clinic (my previous appointment got cancelled because of the snow). It went well, was a relatively quick appointment for my clinic-just under 2hours. Whilst my lung function isn't the best its been this year it also isnt the worse and so I didn't need IVs or oral antibiotics and we will see what it is like in January!!
I am all organised and sorted for christmas. All my presents are brought and wrapped and have been handed out to the correct people. I have just one present left in my house that is for my friend who is visiting this week when it will be given to them then. Scouts has now finished for christmas so I have about 3weeks off from meetings and gangshow rehearsals (yay!). Things are going to be very busy in January and February with gangshow so looking forward to this break.
I think thats about me upto date, even if this blog post is very higgeldy piggeldy.
Tuesday, December 7, 2010
On the top shelf are all the 'boot' mugs me and my mum collected whilst visiting the german christmas markets. They are the gimmick they have to get you to buy a hot chocolate (or something a little stronger such as gluhwein) whilst walking round the markets. most places charged 1 or 2 euros as a "deposit" for the mug which you got back if you returned them but as you can see we chose to keep ours- as do most visitors to the market! On the bottom shelf are most of the ornaments I brought from the markets! (Except for the snowglobe which I got in Lapland when I had a visit to santa in 1997).
I started to put my tree up and then got a little bored (I really don't like the job of having to put all the branches down and spreading them out), so the tree stayed like this for a good few hours!!
It finally progressed to being all set up ready to decorate! It also already has its "skirt" on. My mum and dad also have one and basically it hides the plastic feet of the tree and its something for presents to sit on also!
With lights on and turned on!Fully decorated tree!! I have also put up my ceiling decorations and got a few other ornaments dotted around. I have a nativity scene on my windowsill and a very tiny wooden tree sitting on my tv stand with some christmas penguins.
Wednesday, November 24, 2010
Tonight is Beavers night! Beavers are alot more hard work than Scouts yet inifinitely more rewarding. Looking forward to tonights meeting, as last week they did tye-dyeing and this week they get their tshirts back. We left them soaking in the dye for I think it was 6days in the end (hopefully they were taken out the dye last night otherwise they are still in there!) instead of the initial 2 that the beaver leader was hoping for. They didn't get taken out on friday because she wasn't at gangshow rehearsals which is when they were going to be taken out. I can't wait to see the kids faces as none of them had really done tye-dyeing before, so really hope they like the finished results. It was quite rewarding last week just tying the tshirts up with elastic bands. Many of them couldnt grasp that concept at first but after showing them all individually how to do it after just a couple they were well away- I think there is going to be some real funky creations tonight.
Whilst I still love being an assistant scout leader, I'm loving being an assistant beaver leader too!!
So thats to look forward too.
Since my other blog post I had another gangshow rehearsal which is 3.5hours long. It was tiring and I think I was as tired as the junior cast members. Overall the rehearsal went well though, although I did get tears in my eyes when we were singing 'World In Union'. I don't know what it is about that song but everytime I sing I think I'm going to cry.
Today I have been tidying/emptying my bedroom out of most of its furniture and stuff stored under the bed/on top of the wardrobe into my spare room. This is because my dad is going to paint it for me this weekend yay! I thought the less furniture he had to work round the easier it would be for him. So now I can't really enter my study and my dad only has to work around my bed, wardrobe and one set of drawers. I removed all the stuff from under my bed, my bedside table, a set of drawers, my laundry hamper and a portable heater. I think my mum may shout at me when she realises what I have moved when she comes round tomorrow to help me move the wardrobe away from the wall! Oh well, quite excited that its finally getting painted as it's been on the cards since september. However have only just got organised enough and had enough time for it to get done. It will go from cream (which is the colour of every single wall in my bungalow!) to violet white. Which is a very pale purple. It's nice and light so the room still seems big and airy but it will be a change from cream!!!!!
Saturday, November 20, 2010
Do you ever find sometimes that song lyrics really speak to you? Well at the moment I'm in the middle of rehearsals for Gangshow and one of the songs we are singing is Believe. I have put they lyrics below and put in bold the verse that really spoke to me last night as were singing them:
When I look up to the stars, There’s a burning deep inside me
And I feel a power growing in my soul.
There is something I can sense, Deep within a dream to guide me,
And I know that I am reaching for my goal.
I can do anything at all, I can climb the highest mountain,
I can feel the ocean calling wild and free.
I can be anything I want, With this hope to drive me onward,
If I can just believe in me.
When the skies are dark and grey, We still know the sun is shining:
Though it’s out of sight, its light is glowing still.
And as long as I believe, There is nothing I can’t wish for;
Not a dream that I’m unable to fulfill.
I can do anything at all...
And whatever it takes I’ll find it somehow;
Whatever it needs I’ll show I’m strong.
Whatever it takes I’ll make it happen:
Finding out where I belong.
While the world is spinning round, I can sometimes lose direction
And I know how hard it is to find my way.
But with friends around to care, There is nothing I can’t handle,
And I’ll face the future treasuring each day.
I can do anything at all...
Thursday, November 18, 2010
trying to regain postivity but its not so easy right now.
Sunday, November 14, 2010
I was so proud and happy that out of the 9 scouts in my troop 7 of them turned up! That was the best turn out the troop has had for a service!! Not only did they all turn up but they were smart and well turned out as well-even better. I may also have been slightly smug that we outdid the cubs (normally the cubs always have a higher % turn out than the scouts) but today there were 3 cubs out of the 14 in the pack.
The service went well and all of the kids behaved and were respectful. After that service we then moved to another place just slightly outside of the village and the scouts laid a wreath in rememberance as well. The flag bearers during the wreath laying did very well, as it was about 20minutes of where they had to stand still with the flag up. There was a couple of slight wobbles at one point where the scout nearly knocked out the RBL member who was saying the bits before and after the playing of the last post (I cant remember what its called which is really bad!!) and the cub nearly knocked out the Reverend with his flag!! Never mind they regained their balance and nobody got knocked out during any the point.
Alot of credit had to go to the two scouts who held the flag this year as our flag holder was missing so they didnt have anything to support it in!
The photo at the top of this post was taken after I got home after being out for just over 3hours! I am still enormously proud whenever I wear my scout leaders uniform and still loving our new necker change (it used to be a goldy yellow colour). Although the leaders neckers are massive on me and I can get away with wearing a childs necker!!
Just a little catch up on my day
Friday, November 12, 2010
What is now believed to be the case is that I have strained and pulled the muscles so much on both sides of my chest wall that fibres have been torn (lucky me!). Normally this would take about 2-3weeks to heal after you have finished coughing. Anyone notice the problem there??????
Thats right, I will never stop coughing. I have physio to do which induces coughing and then there is everytime i step out of the warmth into the cold, and back into the warmth after being in the cold that also induces coughing fits!! So basically this pain will continue for what could be months as its going to take a long time to heal. As any harsh coughing is going to just restretch the muscles and slow down or undo any repairing that had been going on!
The solution: keep taking ibuprofen, rest as much as possible and suppress the cough as much as possible until I think the phlegm will is very close to come up so that the coughing will then be as brief as possible! Otherwise basically noone can do anything and I just have to live with it.
Living with it is easier said than done considering-having a shower and washing my hair causes the pain to flare up, washing the dishes causes the pain to flare up, going round the supermarket causes the pain to flare up, standing up for longer than 15minutes at a time even if its just standing still causes pain to flare up.
Resting and not doing alot doesnt come easy to me!!
Wednesday, November 10, 2010
Ok, so I'm a little bored and felt like blogging. Didn't really have a lot to say so decided I would share a random photo that I found on my computer. This was me in the maize maze in september at Hemsby! It was lots of fun and by the time we had finished had walked about 6 miles (very tiring!). We didnt have a map so got lost quite a few times but eventually made it out.
Sunday, November 7, 2010
I have spent every day at my parents house! We sell poppy pins, car poppies and lorry poppies on ebay every year for the Poppy Appeal. Well this week the sales went crazy and every day we were posting out over 100 envelopes. Well that takes a lot of time to get them off the computer and packaged up. So I was spending every day helping my mum do those while my dad was at work during the day!
Wednesday evening I went to beavers (yay) and had fun there.
Thursday evening it was cubs and scouts and my dad came out with me to give a talk on Remembrance and the poppy appeal. It seemed to go well and the kids seemed to learn some stuff.
Friday I had to fit in food shopping as well as ebay packaging! Then in the evening it was gangshow rehearsals. It's going well and I will now be carrying a flag on stage (woop woop!).
Yesterday I got to babysit for my gorgeous 3month old niece while my brother took my 5yr old niece to some fireworks. I wasn't really bothered about going to a display as it was just too cold and still struggling with the pleurisy. So instead i got to have cuddles with my niece and put her to bed. She spent alot of the evening sleeping anyway so inbetween i got to watch strictly come dancing and x factor!
Not alot planned for the upcoming week beyond my usual stuff!
Sunday, October 31, 2010
After a long discussion with the physio, it was decided that the cause of all my chest plain is probably pleurisy. This is where my lungs have got really inflamed and are rubbing against the chest wall. Well actually its the pleura which is a layer between your lungs and your chest wall that is doing the rubbing.
On examination my chest sounded slightly muffled on the right side (although I have been having more problems with my left) and the physio heard "rubbing" sounds on the right near where I have been experiencing on that side. However when she held my chest while I took some deep breaths in and out my left wasn't expanding at all at the bottom. So that correlated with how I was feeling but not with when you listen to it. However as my physio said she has learnt that CF chests can be very deceptive and can't just go with what they hear through the stethscope to diagnose what is going on.
As well as the pleurisy my physio thinks that on the left side I might have alot of consolidated phlegm which is why it isn't really expanding in the same way as the right (although my sats were nice and stable at 99% so they aren't worried about a lung collapse) and the pain on the left side is a mixture of pleuritic pain and also because the IVs have got into it and is slowly breaking it up.
So whilst the infection has gone for now, I am left with some residual problems. The chest pain can only be treated with ibuprofen and rest. However it is very frustrating when you wake up feeling ok and then discover that the simple act of making a cup of tea and making a bowl of cereal causes the pain to flare up and so you do need painkillers and rest after all. My chest was aching so much today and all I had done was make a cup of tea and wrap my sisters christmas presents ready to send to Cyprus!
It seems I will be on the ibuprofen for awhile and if it hasnt cleared up by the time I go back to clinic I am going to get some prescribed. I'm hoping I wont need them for much longer though.
To end this post I will leave you with my halloween socks :o), which seems completely random I know. However I think they are quite cool and will end this post on a slightly smiley note after the report from clinic, so here they are:
Wednesday, October 27, 2010
Yesterday and today my chest has been aching all day no matter what I've done to try and make it go away. Interestingly yesterday the pain was predominantly on the lower left side which during the night shifted to general all over pain. Today it has been predominantly on the lower right side of my chest with occasional periods of all over chest aching/pain. It is now currently at the all over aching stage. I don't quite know what my CF team will do or say when I pass on this news tomorrow.
Yesterday I was feeling so rough I didnt get up until 9.30am, had a snooze for an hour at 2pm and was in bed at 7pm until 9am this morning! Then today I went into town with my mum thinking I was better. Only to end up sat on a bench in the local shopping centre while my mum finished off a couple of essential shopping items in a few shops before coming back to collect me to take me home again! I couldn't even get halfway round town without bad chest pain. I was just getting slower walking round and my mum could tell something wasn't right. This is worse than when I started my IVs.
My biggest worry is they will decide to take me onto the ward, so in preparation tonight I've downloaded some tv programmes onto my laptop for viewing incase I can't get net access. I will also take a small bag with me, that contains a few days clothing just incase!! As it's an hour each way to my hospital, so it's just too far to travel back for a suitcase and then back to the hospital in one day. therefore if I have a small bag I can stay and my mum can bring in more clothes for me friday or saturday when she would next be able to make it over!!
Fingers crossed I will be coming home IV free and definitely no hospital stay on the horizon!!
Thursday, October 21, 2010
This picture is me with my port needled and the normal dressing over it:
This picture is my port needled without a dressing on it. I like to change the tegaderm half way through as I find it abit itchy and so like to give my skin some air for abit if I can:
This is a close up of my port needled without the dressing on. You can see where my skin has gone wrinkly where the tegaderm has been for a week:
This a weeks supply of intravenous antibiotics! The top shelf is Tobramycin in eclipses and the bottom shelf is my Tazocin:
This is me doing my Hypertonic Saline and getting bored, so decided to take a picture. I have to do it through the old pari boy nebuliser as its too powerful in my eflow and I can't cope with it:
This is the results of my skin prick test. My right arm is the first one where you can see a reaction to the House Dust Mites (HDM) and a rather large reaction to cats (C). There is no reaction to grass (G) and a slight reaction to the aspergillus (asp). There is also a large reaction to the histamine (+) but that is what they expect. My reaction to the cats was as large as the one to the histamine! On my left arm is the repeat test for the aspergillus. This was taken quite early on in the second test so you can't really see any reactions as yet but I got as big a reaction to the control (+) again the second time and a slight reaction to aspergillus again:
So I think thats all the photos I said I would post.
Wednesday, October 20, 2010
So at the start of IVs:
- chest was clear (on listening too but I was coughing away like a trooper and bringing lots of phlegm up!)
- Lung function came in at 71%
- Not coughing quite so much, still bringing lots of phlegm up. On listening to my chest now has slight muffling on the left hand side and quite a few crackles at the bases of my lungs mainly on the right hand side.
- Lung function came in at 72%
Explain that if you can!!
I am still dealing with tingly lips and i've also had a sore throat the last few days. Feels like there is a lump at the back of my throat which just won't go away! Makes swallowing things abit sore so putting me off food slightly but doing ok.
Tuesday, October 19, 2010
Ivs are going ok so far. I'm getting a couple of side effects from them but nothing I can't live with, the main one is a tingly lips sensation. This usually kicks in about half an hour after a dose of IVs and last for 2-3hours afterwards sometimes abit longer. Not painful just abit of a weird sensation. I'm also starting to feel alot more tired and will have to start incorporating mid afternoon naps. My tegaderm is also starting to get really itchy!! So I will be changing the dressing probably tomorrow to give my skin abit of air for a short while before putting the new one on top. All of the dressings my hospital likes to use make me itch to some degree so I just have to live with it. The itching could be alot worse and its not so bad in winter when I'm not really sweating either. It's definitely alot worse when there is hot weather!
Saturday I was at a scouting event called JOTA/JOTI which is Jamboree On The Air/Jamboree On The Internet. It was an international event where all scouting districts are online/ on the radio airwaves at the same time for 2days allowing the kids to talk to other scouts/cubs in other countries. The radio part wasn't really my thing but I sent a few messages over the internet and we got replies from russia, netherlands, greece and the most exotic place: Portsmouth!! (we got quite a few places in the Uk but the kids didnt really care they just enjoyed it). I wasn't allowed to do alot because I'm on IVs so my main job was booking the kids in and out for the day (as they could stay for as long as they liked) and taking the money. It cost me a total of £1 and that is to pay for my badge to go on my camp blanket! I was abit gutted I couldn't stay the night like I originally had hoped to but never mind. I didn't go back on the sunday as I wasn't really feeling upto it but I still get the badge!!
I haven't really done alot since then except do my ivs and nebuliser and physio etc and rest quite abit!
Photos will go up eventually I just havent sorted them out yet.
Thursday, October 14, 2010
Today has been a long long day. It started when I woke up at 5am and didn't get to sleep again until 7am.
My alarm then went off at 7.45am so I could be up and ready to go to the hospital!
I was showered, dressed and nebuliser and physio by 9am. No time for breakfast though as had to go to the hospital.
Me and my mum arrived in good time for my first appointment which was for the skin prick test (pics to follow later when I've uploaded to computer).
This wasn't as bad as I thought and they tested for house dustmites,grass, cat and aspegillus allergies. They also do 2controls, one you should react to and one you shouldn't!
I was shown to be highly allergic to cats and house dustmites and slightly allergic to aspergillus. The aspergillus one got repeated twice to doubly confirm if the first comes back as a positive reaction.
My reaction to aspergillus however is still not bad enough for them to start treatment, so it is being repeated in 2-3months to see if its got worse!
That took about an hour in total to do, so then it was time for some lunch before going to clinic to start ivs.
Port was needled fine and drugs went through ok. I am on tobramycin once a day which takes about half an hour to go through and tazocin 3times a day. The tazocin takes about 5minutes to do as I do it as a bolus in a syringe.
Also got the results of my bone scan-everything is all ok there which is good :o)
Sorry if this post has bad layout doing it on my blackberry will update properly tomorrow or saturday on the computer
Wednesday, October 13, 2010
Lots of phone calls received today!
My skin prick test for aspergillous is now happening tomorrow morning and is scheduled to take an hour, Might take my camera with me and try and get photos, otherwise I will just take them on my phone and upload them on here somehow.
Tomorrow afternoon I will be starting a 2week course of Ivs, the drug cocktail of choice is tobramycin and tazocin. Fingers crossed they will go well and do a good job.
Still no news on my bone scan results so I shall be hounding for them tomorrow afternoon while in clinic!
In other news my sister has landed safely in Cyprus, they love their new house. Apparently they have a massive garden and there is not one patch of grass and they woke up this mornig to nice sunny weather and a temperature of 25degrees celcius. I woke upto cold and miserable and no idea what the temperature was but needed my fleece on to go into town!!
Tuesday, October 12, 2010
I will be starting IVs on thursday at home but still my questions have not been answered that I have been asking since last wednesday. These questions which I feel are quite important are just being ignored as if my health doesn't matter and they can't seem to understand why I want these things sorting if it means getting medication I might need sooner so I can stay as well as possible.
1) Am I having a skin prick test for aspergillus or not? If so will it be done quicker if I am inpatient for my IVs?? (still being chased up if I need one or not and hopefully they will know by thursday 2whole weeks after saying it was being sorted and they still dont know if I really need one. So lots of time going by before I may start treatment for this, despite my history showing that actually clearly aspergillus is a problem for me and explains so much stuff).
2) What are the results from my DEXA bone scan? (They havent even checked the system for the results and again this was done 2weeks ago but they should definitely know the results on thursday).
3) Have you sent the fax you were sending the day after I was in clinic (so should of been sent on the 30th sept) containing details of a prescription so I can trial a new drug that is meant to make it easier to shift sputum?? NO! If it still hasnt been sent they will just do a prescription at the hospital tomorrow and have the drug ready for me thursday so I dont have to visit hospital pharmacy. I wont visit there unless it is an absolute emergency as the minimum waiting time for their outpatient pharmacy is 50mins!! and it's been known to be as long as 2hours. Well it takes me 50minutes to drive home from the hospital and when you've already been there for a few hours and know you will be hitting rush hour you just don't want to wait in pharmacy!
I'm just so frustrated with them. They don't ring me back when I leave messages so I have to keep chasing them and then they wonder why I don't like trying to contact them between clinic appointments!!
Saturday, October 9, 2010
So a quick run down of events based on the best of my abilities!
Nothing overly exciting happened. I went on my first scout leader training weekend and went on parade for st georges day with the scouts!
I was feeling pretty rough at the beginning of May but managed on just orals and didn't need more ivs. I went away for the weekend to PGL Caythorpe again with the cubs and scouts! They all had a good time and I enjoyed myself too (despite being pretty poorly and going against medical advice by being there!). We did some cool activities (leaders got to participate too!). I think my favourite was aeroball and I also had go on another activity (I cant remember its name) where we had to climb a very tall pole. When you reach the top you stand on a very small ledge and then jump and try and grab a trapeze type bar.
There was a couple of family birthdays in May and we had a day out to celebrate those.
I furthered my TRBL caseworker training and did a course that enabled me to fill in electronic form As, meaning the clients I go and see get there cases sent in quicker and seen too slightly faster (As they dont have to wait for the forms to arrive at the county office in the post). Since then I have completed 5or6 cases, which is quite a few for the summer months (This tends to be a quieter for the legion and it gets busier in the lead up to and just after christmas).
I also spent a week on holiday in Clacton-on-Sea. It's not really a place I would recommend, there isnt really a lot in the area to do but it was nice and peaceful. So if you like quiet and dont really mind not doing anything then go there!!
I also split up with my bf in June after 10months together. Things weren't working and I was increasingly more unhappy so it was the right thing to do (it has however consequently lead to alot of problems since which im not going to get into, but i am now having to keep a diary for harassment purposes and have been recommended to go to the police if it doesnt stop soon!).
The first weekend in July I was on scout camp at our local campsite. The weather was excellent and kids had a fantastic time doing scouting activities and I just enjoyed the experience of my first real scout camp.
My friend visited for a weekend which was fab as I hadnt seen her since March!! Lots of laughs and fun times :o)
This was a busy month!! I gained a new neice and my twin brother is making a fab daddy!! Just 12days later my sister got married! It was a beautiful service and a wonderful day all round.
A few days after that it was my birthday and in the same week I also had the test for my Annual Review at the hospital. Those all went well on the day and all ran to time, which was highly unusual but definitely a good thing.
I got some good news on my diabetes front, my HbA1c (which is the blood test done to measure your blood glucose levels over the past 3months) came in at 7.4!! The top end of acceptable is 7.5. I am within normal range, this is very exciting and good news. After a number of years of denial and ignoring my diabetes really I finally started to care in December last year. This was the time I was sent on the EDWARD course (which I think I blogged about). At that time my HbA1c was 12.9- this is very not good as indicated my blood sugars on a daily basis were running in the 20s, they should be between 4-7! My current result means I am mostly within the 4-7 range but still having the odd high. This is accurate as I also do my own daily blood glucose tests with a glucose monitor. Since being on the course I have tried so hard so was very happy to see those results.
I also spent a week away with my friend B in Great Yarmouth. It was a good time and have a lot of good memories from it.
Unfortunately when getting home we had some bad news, we found out our mutual friend A had taken her own life. I have mentioned A before in my blog, she was very ill with some mental health problems and was haunted by events in her past. This had not been her first attempt and I am just very sad that she finally succeeded in taking her life. I just hope it frees her from what she couldnt escape in life. I found this a shock because she had been doing so well over the last 6months or so and seemed quite positive as she had got married and was trying for a baby. R.I.P. AW
At the end of September I attended a beaver sleepover. This is not my usual group but they needed some leaders and I said I was happy to help out. I love beavers!!! They are aged 7 or 8 and it is such a fab scouting section to be a leader for. I think it might help that I have such a love of childrens crafty activities and playing games that I get on so well with the beavers. I'm currently a scout leader but if i was given the choice to move to a beaver section permanently instead of the scout I would move without hesitation! As much as I love the scouts I enjoyed being with the beavers so much more. It's alot more hands on in terms of the activities you do and it was just enjoyable.
So that brings me to October!
The weekend after the beaver sleepover (1st-3rd Oct) I was on a scout survival camp! This involved sleeping in a marquee, getting very muddy and wet and cold! The kids all had a fab time. It was actually cubs and scouts there and they werent bothered by the rain at all. They also loved the fact they got so muddy as they couldnt have a shower the whole time we were there as there aren't showers at the campsite (we do have proper toilets and running water but only cold water in the sinks). My main job was to keep the altar fire going and keep hot water on the go at all time for drinks. I did a good job of this! It was mostly fun and we survived the rain and definitely earnt our camp blanket badges.
Since then I've had my flu jab (ok, no side effects except an achy arm for about 36hours afterwards) and been back to clinic for my Annual review results. These were mixed!! There are some questions over aspergillus because some blood results came back high and I may or may not be having extra tests for this (its not 100% clear after finally getting hold of my nurse by phone a few days later to confirm things and I will find out monday). I am still awaiting results of my bone scan, my vitamin levels are still low but others were all ok.
I've been on oral antibiotics for the past fortnight. These havent made a lot of difference and I will be starting IVs on thursday. I am hoping these will all be at home, but if I need the extra tests for aspergillus I will be having one of the weeks in hospital so they can be done sooner rather than later!! So will find out for definite on monday.
In other news I had to say goodbye to my sister today :o( She is moving to cyprus for 3yrs with her new hubby (who is RAF and has been posted there with his promotion!! He asked for lincolnshire, uk and got Cyprus!). It was a good afternoon, the whole family were together. We had some laughs and enjoyed a meal together but at the end there were some tears as we said goodbye. I was doing well until I saw my sister to cry and then I couldnt hold mine back either. She doesn't fly until tuesday but has so much stuff to do that I won't see her again between now and then. I will miss her so much, but we all have webcams and msn and internet connections. We will still be in touch and Cyprus is only 2hours away on a plane to visit. I will only be able to visit in the "winter" months though as the heat and humidity will be too much for me and will play havoc with my health (mainly the control of my diabetes!). She will be back in the UK in february, so it will be 4months before I will see her again in person. It's going to be weird but I know she is so excited to go and I will send her lots of parcels and messages and stuff like that.
I think I'm upto date again and will be blogging again with some kind of frequency (hopefully!).
Tuesday, March 30, 2010
It's not the best picture of it, so if you want to see a better one visit http://www.nemesisnow.co.uk and search for Fairy Realm and you will see the picture they have which is the same as what I've got.
Mothers really are the best, knowing that she will always be there. Even when I don't talk she still knows and offers her unwavering support. It's nice to know
Sunday, March 28, 2010
I don't know where to turn or who to talk to, so I thought maybe writing a blog post might help.
I need something or someone who's completely impartial and that I can vent at and not have to worry that the topic will come up again when things are fine again.
I just don't want to feel like this anymore. Being in tears 3 times in one day is too much and feeling so tired and upset that your crying yourself to sleep just isn't good.
I don't even know how to start saying what's upsetting me so I guess this blog post wasn't all that useful. I guess I just want a day that's not stressful or taken up so much by health things right now-i want a time out on life just for a shortwhile.
Friday, March 26, 2010
I need to test my blood glucose levels a minimum of 4times a day (before each meal and before bed) so that I can work out the correct dose of insulin I need to do based on the carbohydrates I eat and what my blood glucose level is so that I stay within the target range of 4-7 before a meal. So after those four stabs with a needle to get the blood I then have to do insulin which is another 4 needles. Then if I choose to have a snack in the day, I will then need to give more insulin which is extra needles. It's alot of needles in a day- at least 8 and then more if I need extra food, which is recommended for those with CF. I get 10g of carbohydrates "free" before I need to do insulin, but not alot of foods suitable for a CF diet have less than 10g of carbohydrates before I then need to do insulin. For example I could eat 1 ginger nut biscuit (7g) or 2 rich tea biscuits (10g), but if I wanted a chocolate bar I would have to do insulin. This then makes you weigh up whether the food is worth it, is that piece of cake you really fancy worth another needle, it takes the fun and enjoyment out of just being able to have a snack and not worry about it. So I get my diabetes under control but then I get moaned at by my CF team because my weight is going down, because I don't eat the snacks because I don't want to keep doing lots of insulin.
The main issue I have is now that I got into a good routine of checking my blood glucose levels properly (I got into a bad habit of not ever really checking them and just hoping for the best), I now feel guilty when I don't check them. Like if I have a meal out and I wasn't expecting so didnt have my blood meter with me, it makes me feel bad that I haven't checked them. This is one of the hardest routine for me to stay in, and when it starts to slip I lose it very quickly. It's not like a missed physio session which I easily pick up again. I get into a mindset where I didnt check it at lunchtime, so I wont check it at teatime because I dont want to look at it incase its running high, so then I wont do it before bedtime either and that very quickly leads to 3or 4 days where I havent done any testing. Thats not a good thing. I know that my control is still good based on how I'm feeling and that if I did just check my bloods at the next meal it would prevent things from getting bad if they were a little high because I could correct it straight away. It's just hard to see an elevated number when all you are doing is trying your best and you can't work out why it is like that.
Sometimes I get high numbers but I know why that is and I'm not worried. It's when you get an elevated reading and you don't know why that it can be very frustrating and down-heartening. To think that your best efforts aren't good enough. Although my worry more at the moment is not of going high but going low.
My insulin dose is correct most of the time, but sometimes it causes me too go to into a hypo (which isnt good) but if I lower my insulin dose then I run high. So I currently run a fine line between good blood glucose and running too low. When I go hypo, I need to get something sugary and fast otherwise I will end up passing out and then this needs to be followed by something like toast or a packet of crisps to stabilise my blood sugars for when I next eat, otherwise I will just then run high (it can be a very vicious cycle). So I now always always always make sure I have some sweets in my bag when I go out, where as before I didnt worry too much about it as I knew I would most likely be ok. Now I just cant be certain.
Life is complicated when you have medical issues and thats before you then try and cope with the day to day life of normal stuff like relationships and just general living and trying to have a good time.
I think this post is probably long enough now.
Wednesday, March 24, 2010
I also only just saw some comments from some friends and they made me smile to realise that people cared even if it doesnt seem it some of the time.
Things are going better now!
On Saturday I went to an agility dog show with my bf and his mum and their two dogs. Me and my bf ran one of the dogs in her classes. She came 6th and 9th :o), although Nell (the other dog!) did even better and got a 1st and a 2nd, which we were very happy about. Nell has good shows and bad shows, so definitely a good show for Nell. Nell loves going through the tunnels and has a habit of not actually going over the jumps but just running under them if she spots a tunnel in her eyeline, which then gets her disqualified!
Sunday I was at a church service celebrating 150years of the Cadet movement in the local boys high school and in the town. I got my own special invite because the CCF unit are affiliated with the Branch of the RBL that I go to, and I go down and help file their paperwork most weeks (they were shockingly behind in their filing before I went and helped and got it all sorted for them!). They think I am little crazy that I like filing things away but I just like being organised and get into a little system and what I can get filed away into their cabinets in an hour is more than what they can manage in 5hrs (so I've been told!). Then the mid-lent fair is in town, so me and my parents had a walk-through it before heading home.
Monday I was at school helping out in the class that I have been in since October. It's amazing to see how much the kids have changed and developed over the year, especially after not being there for a few weeks because of being in hospital and on IVs. The lowest group have all moved on in leaps and bounds and while they may not be near the top end of the class still the gap between them and most of the class in the middle has definitely shrunk, it was so good to see some of those who had little confidence in their reading abilities to have soared and become loads more confident. I was also asked if I was free on thursday (which I was) and if I would be able to go on their school trip with them as they still needed another adult helper. To which I said yes, so tomorrow I will be going to Belton House and have a group of 6children to be in charge of (the class is a group of 30 and their are 5adults). Then in the evening I went to the gym for my induction session, where we worked out what my goals are for going to the gym and what equipment I would like to use. Then I did about 5mins on each just to see how they work and what levels of difficulty I should be aiming for on them for them to be a benefit to start with, then hopefully the more I go I should be able to increase those to continue getting a benefit. I havent been back since then but will hopefully make it in the next few days.
Tuesday me and my bf went to somebodys house to look at somethings they were selling (he had brought a football table off her and wanted me to look at some dvds that she also had for sale) and we came away with 3board games and 2 books for me as well :o) . We then met my brothers partner and her little girl and went round the fair with them going on some rides ( I got to go on the teacups with her and a giant inflatable slide-she reached the top then nearly burst into tears because she was too scared to come down by herself). Her mum doesn't do fair rides anyway, but is currently pregnant so couldnt of gone on them. Then before we left my bf took her on the carousel (he was the favourite for the afternoon!) and we went to morrisons cafe for some tea.
Then me and my bf went and looked at a hamster cage (which we brought) and we also stopped off and I brought myself a hamster. I have wanted one for awhile and now I have one. She is called skittles (I don't know why, its just what I decided on!) and is a golden colour. The cage has some plastic tubing that she can crawl around in which is she really loving at the minute, in fact she is asleep in it right now on one of the bends! She crawled out of the tubing to get some food, took it back into the tubing then dropped it so its sat in the tube. So I think she is feeling safer in there at the minute than the main part of the cage. Although she has been in that part quite abit in the wheel which she also seems to love. I didn't hear her in the night but when I got up to go to the bathroom I could hear her running in the wheel.
Thats me about all caught upto date.
Thursday, March 18, 2010
Today I went through all my clothes- got rid of the ones I didn't want and then generally tidied my wardrobe and drawers up. After that all the clothes I have are nicely put away and there's even a little room left for some new tops or trousers- now that's good tidying :o)
I then met up with my mum and we went shopping for my dads birthday presents. It's been good spending time with my mum yesterday and tomorrow (although my grandma is convinced that's because I'm ill and needed looking after which isn't true).
This afternoon I went to one of the gym's in town- Ocean's health & fitness and joined it. I have been thinking about this for the last few weeks. So now instead of doing kickboxing (as i can't afford both) I will be attending the gym. It looks like a good one (and one of my friends goes and says its very friendly). It also has a swimming pool attached to it, which is more private and most importantly CLEANER than the one in the local leisure centre. I am looking forward to being able to go swimming there quite regularly as well as using the x-trainer in the actual gym part and the treadmill and excercise bike. I don't think I will ever really be using the weights side to it but I will have the option should I chose. Also as part of the monthly fee I will have access to different fitness classes, so I may take part in some of them as well. I'm interested in some of the cycle or step ones. Particularly the step ones as I like that excercise on my wii fit plus and find it quite beneficial.
For tea tonight I had something abit random again:This is 2chicken breasts smothered in bbq sauce and cheese with pasta in a tomato and basil sauce. It was really quite scrummy and there was nothing left on the plate by the end of it.
My mum is really shocked when she hears what I've been eating recently. I never used to eat any kind of sauce (so that would of been plain chicken breast with plain pasta), or cheese. In fact until I was about 12 I wouldn't eat chips, however even now I prefer only the skinny chips or "french fries" as opposed to normal chips like from a chip shop. I will eat more french fries than I will chip shop chips (so I'm still quite picky). I would never have pizza but now love it and I would never of had anything like the meal I've just devoured today!!!
I'm still trying new things out and seeing if I like it now or not, I think part of this is because I'm choosing to try it and not being made too. Also it lends for abit of variety in life as well.
Tuesday, March 16, 2010
That's all. Tomorrow I am being fed by my mum so I doubt it will be anything all that weird, but thursday I have got some chicken smothered in bbq sauce and cheese to cook, which I think I will have with chips.
I have decided that at times the best thing you can do when you have CF and know it's important to eat, is to go with whatever it is your craving even if it leads to some pretty unusual combinations. Hence what you see on my plate from last nights tea. This is ham and cheese toasties with bbq sauce to dip them in, with some spicy chicken pasta covered in a tomato sauce (you can buy it in single portion pots from asda, which is where mine is from). I must say it was pretty darn tasty as well!!
Currently I seem to have a thing for bbq sauce and also the pasta pot things!! Ham and cheese toasties have been a favourite for quite awhile and although it seems weird I think my hospital will just be glad to hear that I'm eating.
I am now debating though whether my tea combination was wors than my lunch combination- jacobs cream crackers with salt and vinegar chipsticks, a creme egg and packet of fruit pastilles. I sound so healthy! I would seriously recommend everyone to try cream crackers with salt and vinegar crisps though!!
Today for lunch I am going to be making myself a pizza- you might get a picture of that too!
I have also made a cake today and also plan on making some flapjack in the next few days as well.
Does bbq sauce go with cake or flapjack??????????????????
Friday, February 19, 2010
Not looking forward to it but the hardest thing is knowing that my sister also wcf doesn't support me and has a very low opinion of me. Life is hard enough when you are dealing with CF and diabetes, but when there is someone else in your family who can probably understand the most and offer support doesn't it's pretty tough. As far I can tell she would be quite happy if she didn't have to ever see me again or speak to me. It feels like I only have 2siblings instead of 3. Even then I still get left out of plans. It seems when we siblings want to meet up its either plans with my sister or plans with me. Yesterday I was at clinic and couldnt of met up with my other sister even if I wanted to, but didnt even find out until yesterday that she was going to be in our home town because she was meeting up with the sister I don't get on with. Then my brother went along for tea as well. Talk about being the one left out!! The nice sister isnt around alot so it would of been nice to see her, but things are so tense between me and my other sister that I just dont get invited or its not worth it knowing what things will be like.
Feeling pretty low today. Will probably blog quite regularly once I get into hospital.
Wednesday, February 17, 2010
Struggling a little bit recently with some health stuff mainly my diabetes and its something that just makes me feel very alone within my family as noone else has that to worry about. At least when its something to do with my Cf if I wanted to I could talk to my sister and she would understand.
Wednesday, February 3, 2010
Also I've just seen a trailer for the film the lovely bones:
And I really want to go and see it. I've read the book a number of times so I would love to see how the film compares. I am usually quite disappointed in the film versions of books I love (an example of this is my sister's keeper-nowhere near as good as the book). I have also seen some films, realised its been made due to a novel, read the novel and loved that more than the actual film. I just hope they stay quite true to the book and would love to see how it plays out.
Sunday, January 31, 2010
On thursday my physio came out to do halfway lung function to see if things are improving- they slowly are! My lung function was upto 62%. So thats an improvement of about 3%. Not brilliant but at least slowly going in the right direction. Whilst my cough is becoming less often, when I do cough it is still in quite a large coughing fit and still more often than not ending up in me being sick. It's not pleasant but I am bringing up alot of phlegm off my chest, so it can only be a good thing in the long run.
My physio is coming out again this thursday as well, to do end of ivs lung function. She will also actually do a good session of physio with me as well so hopefully that will do me some good.
On friday I had to go to a funeral. It was my boyfriends grandmas :o( It was very sad and quite a few tears were shed that morning. I did alright until I actually saw the coffin and we got into the church for the service. It was very tough and sad saying goodbye, but A did really well in reading the eulogy (which made me cry even more). It was really tough seeing both him and his sister really upset and also his mum. It was his dad's mum who we were burying and he did really well with it. After the service we moved to the cemetery for the burial which was also quite difficult. It was the first burial I had been too and I couldn't stop the tears when they lowered the coffin into the ground :o( . His grandad had died a few years earlier and after it was all over A's mum told us that his grandma had been placed on top of his grandad's coffin. Which was nice to know that they were both together again. Afterwards we went back to A's uncles house for a small get-together. There was only a maximum of 25 people at the funeral anyway. There was about 16 of us back at his uncles house for about an hour or so before we left to go back to A's house. For tea that night we had fish and chips from the local chip shop- it was her favourite meal and if she could of had it every day I think she would of. Everytime A took his grandma out to do her food shopping they would have lunch in morrisons cafe and without fail she would order fish and chips. When we took her out for her birthday on new years eve to a local pub/restaurant she had loads of things to choose from and she still picked fish and chips. I will miss her, even though I hadn't known her long.
A little by the by about the funeral- I thought the vicar was a little strange. If anyone has ever watched the film '3men and a little lady' , the vicar reminded me of right at the end when the actor Ted Danson (I cant remember the characters name) dresses up as a vicar to delay the wedding. Well the character of that vicar in the film reminded me so much of the vicar who conducted the funeral. When I first met him outside the church before we followed the coffin in I had to try very hard to not laugh at him. I couldn't help it when I first saw him!!
Yesterday I didn't do alot except do some relaxing really.
Thats now me pretty much upto date for now.
Friday, January 22, 2010
I have been put on colomycin and tazocin for 2weeks. Both of these drugs are three times a day. The tazocin is in a syringe and is pushed through over 5minutes, the colomycin is in an intermate and takes about 30minutes to go through.
Unfortunately for me I woke up feeling pretty rough this morning, with a very bad headache, tingly lips and tongue and also oral thrush. I was also feeling pretty sick and abit unstable and wobbly when I tried to walk to the bathroom. I wasn't sure if this was an allergic reaction to the antibiotics, but when I rang my team up I was told that it was just side effects of IV colomycin! I have been given some nystatin for the thrush, but otherwise have to try and cope with the tingly lips/tongue, sickness and headaches as there isn't alot they can do about it. If they get to bad then they can stop the drug and give me something else, but it is a good antibiotic and effective against pseudomonnas, so they would prefer me to battle it out against the side effects for as long as I can. The headache has gone now, but I've still got the tingly lips and tongue feeling, along with abit of feelings of sickness. I think I can cope, just hopefully get lots of sleep which will help.
Thats me for now, I'm going to log off, get my IVs and then go to bed for some much needed sleep.
Tuesday, January 19, 2010
After alot of hassle, the part finally came in yesterday for the boiler. Someone came out to fix it but 10minutes after he left it had broken again!! It appears while he was fiddling around inside putting the new part in an electrical wire had come loose on the hetaing side of the panel and so it stopped working again!! Luckily British Gas could get someone out again the same afternoon and they managed to fix it. Therefore I have spent a nice lovely warm evening back in my own house again and things are fine.
I also got my new tv set-up last night, ready for the lovely virgin media people to connect me upto their tv service today. I decided to go for the V+ box, as that now gives me HD tv, and allows me to record some of the programmes I like to watch but dont always get to see. So now I dont ever miss out. I have rearranged my living room and put my tv at the other end where my chair was. So the chair is now where my tv was (I will take a picture later when I get my memory card back from my bf!). I wasn't so sure about it last night because I thought the chair was looking really stupid, but this morning it has really grown on me. In fact I am sat in the chair now. I rarely used it before, as it was to far away from the tv really (I had a small tv!!) but my new tv is alot bigger and its just comfy. I have got a little foldable table next to the chair, which I am going to get a lamp for. Then it will be like my own little reading corner!! I'll be able to curl up in the chair with a good book, the lamp on next to me and a cup of tea on the table as well-perfection! It's not quite my own little library that I've always envisioned but its certainly the image I have for the chair and lighting where I can escape into the world of fiction.
The not so bright spot on the horizon at the minute is that I will be starting IVs on thursday. I am oughing through the night now and at times to a point where I am sick, so I rang up the CF team and we decided to just start IVs when I go to clinic on thursday rather than wait until clinic and see what my lung function and stuff is doing before making the decision. So whilst I will have a warm house and nice new tv and V+ with lots of new channels to watch on there, I won't be able to make use of them for long before I go to my parents for the IVs.
Will blog again soon.
Thursday, January 14, 2010
Today a british gas engineer was meant to be coming out sometime between 8-1pm to fix it. When they had not turned up by half one I rang the estate agents who I rent from (who organised the appt), they rang back at half past 2 saying there had been an error on british gas end and that they would be now coming out sometime between 4-5pm but definitely no later than 6pm. Which is the time they stop coming out for the day. It is now 6.05pm and no british gas engineer!!!!! Therefore I am now spending tonight at my parents house as well. Not a happy bunny.
Wednesday, January 6, 2010
A quick catch-up on my life- I've now been with my boyfriend 5months, my diabetes control has got alot better so I have alot more energy now. My CF is still fluctuating and in the last year my baseline lung function has dropped by about 10% and there is no explanation for this, so it is something I just have to accept. I am now an Assistant Scout Leader and loving it, I have been placed in charge of all the paperwork side for the scout group, which I love, as does our GSL because she knows that everything will get done like she asks. The GSL is a friend of mine who I have known all my life and we are also in another group together, so she knows I'm a good bet. If she asks for something to be done, she knows it will be done within 24hours and be back with her. We have a scout troop that consists of 11members now- which is fantastic because it was a new one that only started at the end of September.
I hope to blog alot more regularly and keep upto date with things.